What happens after you take medication for Crohn's Disease?

by Harry
(Queens)

Say if someone was short because of Crohn's Disease and then took meds, would he or she then grow normally? (A 13 yr old kid)

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Medical NEW
by: Anonymous

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Physical tiredness...!! NEW
by: Johni Patino

Hey! Guys I sometimes feel much tiredness and don't no how to lessen my tiredness so, please tell me the solution to the problem thank you..!!

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

How are you? Did your sleepover go OK?

I am still fighting chronic tiredness/exhaustion. My new GP (general practitioner) is still trying to get his head around everything. He has obviously been researching my condition and last Wednesday seemed to be more enlightened which pleased me. I have a terrible time keeping my vitamin levels within range despite all the injections and infusions. It appears to due to the i.m. depot injections and just my gut not working like a normal, healthy person's gut.

I hope that you are feeling better and that all is well with your family.

All the best,

Lydia D.



Sleepover
by: Lydia D.

I have just read that the Frio cooling packs keep insulin at around 67oF. Amazon carries them.

I suspect that you need temperatures of around 39oF for rHGH. Read the patient information leaflet/sheet that comes with the product to confirm this.

So it's back to the drawing board I am afraid.

It looks as though contacting his mum is the only viable option. Otherwise you are going to end up with medication that is inactivated (loses its secondary and tertiary protein structure) und thus inefficaceous.

Lydia D.

Sleepover
by: Lydia D.

Dear Harry,

Well, this is truly a really difficult one.

The only course of action that I can see is to make an ally of his mother. She is going to have to know what is going into her fridge, especially if there are other children in the house. Appeal to her as a mum - as your temporary mum for a few days.

I suggest that you ring his mother up and tell her you need some fridge space for some injectable medicine. As you know if the medication is not kept cool or is frozen it will lose its potency. You don't need to go into any detail about your personal health. I think that it will be better coming from you rather than from one of your parents - you then have absolute control over the information that you give her. Your parents might feel obliged to give her more information than is necessary. At the moment, I really can't think of anything else that would be more foolproof.

However, I think that you should also add that if everyone at school gets to know that you are receiving this medication, then you will be a victim of severe bullying. This should help her keep your confidence. I truly do not think that this is overdramatizing the situation because making your medical treatment public at school could make your life extremely miserable even unbearable. I suspect that you get ribbed about your height and weight anyway.

I have lost a job and been bullied at work because somebody that I told in confidence broadcast my medical condition around. So, I know how cruel people can be. If you should ever get into such a situation please speak immediately to your parents or other responsible adults in the vicinity and keep a diary of events: date, time, who, when, where, what, etc. Obvously, you can also contact me for support.

I think that you are right to only tell people on a need to know basis. At the same time, you need to obtain a pledge from them that they will keep it absolutely confidential. You have a right to this because it is your personal medical information. Unfortunately, you are still going to meet those throughout the course of your life that disrespect your wishes.

I have searched at Amazon.com. There are some cooling units/packs for diabetics' insulin - micro fridges, medicooler. However, most of them either require a power supply or are only good for overnight. Many of the micro fridges have very bad reviews: too noisy, too heavy, frozen medication, too expensive (ClimaPak), etc. You might, however, like to look at Frio Insulin Cooling Cases.

Sorry not to be of more use. If I think of anything else, I will let you know straight away.

All the best,

Lydia D.

sleepover
by: Anonymous

Hi Lydia,
I was wondering how to manage with sleepovers regarding the HGH. Im saying it's not like Pentasa and 6MP which I can hide in my bag and just take in the bathroom. I need access to my friend's fridge which in turn leads tp him knowing, which I'd rather keep quiet. How can I manage?
thanks,
harry

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

I think that it is a good thing that they have established the fact that you are human growth hormone (HGH) deficient. However, it would indicate to me, as a layperson, that you are still not getting enough protein and other nutrients, vitamins, minerals, etc.

Malnutrition causes growth retardation and Crohn's throughout the small intestine in particular causes major malnutrition.

Crohn's can smoulder for years without flaring and I suspect that is what happened in your case. This happens despite eating a really good diet.

HGH is a protein and not a steroid as I read fairly frequently in the Internet. Just injecting you with rhGH (recombinant HGH) is not going to do the trick. You need to really pay attention to your diet - lots of protein and sources of good food. This is also why the daily vitamin tablet is so important. Please do not stop taking this. Are you keeping a food diary and calorie counting (over 3000 kcal per day)?

I wholeheartedly agree with the doctor that said "eat, eat, eat" to you. I would follow it by reiterating my "drink, drink, drink" advice.

I know that these astronaut drinks are not so great to drink. However, you can reduce the nausea by sipping them slowly and alternating with water or, perhaps, very diluted fruit juice (1:3). Never knock them back in one and never ever drink them on an empty stomach. Eating a slice of bread prior to sipping a drink might make all the difference. You could cool them down and dilute them with lactose-free milk and put them in a thermos flask to access throughout the day. Beware: they are great growing media for bugs.

The Pediasure is specially formulated for young people and is balanced with respect to protein, carbohydrate, fats and micronutrient content. I would encourage you to find a way to increase your intake to ensure that you are eating more than 3000 calories per day. Nevertheless, I do wonder if you would do better on the adult drinks, e.g. Ensure or Boost, although I suspect that they all taste much the same.

These publications on Crohn's and rhGH don't really say very much except the earlier the treatment is started the better the results. The window of opportunity is very small because of growth generally stopping at age 16. One paper says an increase from 4.5 cm to over 10 cm growth per year was achieved on rhGH treatment.
http://www.ncbi.nlm.nih.gov/pubmed/22688404
http://www.ncbi.nlm.nih.gov/pubmed/19786772
http://www.ncbi.nlm.nih.gov/pubmed/21470283
http://www.ncbi.nlm.nih.gov/pubmed/16813721

I will keep my fingers crossed for you.

All the best,

Lydia D.

All Is Well
by: Anonymous

Hi Lydia ,

I started taking the growth hormone around 2 weeks ago. The odd part about it was that I am deficient, despite most doctors' thought that I was just a late bloomer plus the Crohn's. If you remember I once gave you that turmeric recipe, I now got it in a tablet form. I am trying to keep drinking that terrible tasting Pediasure, however am only taking around 1 or 2 a day. Because I am deficient, my growth should accelerate alot. Does this change anything(that I'm deficient)? Better? Worse? Although, you still have to remember that my bone age is still young. With regards to Crohn's, the liquid diet was amazing, however I am scared the inflamation will return with time.
All the best,
Harry

All Is Well
by: Anonymous

Hi Lydia ,

I started taking the growth hormone around 2 weeks ago. The odd part about it was that I am deficient, despite most doctors' thought that I was just a late bloomer plus the Crohn's. If you remember I once gave you that turmeric recipe, I now got it in a tablet form. I am trying to keep drinking that terrible tasting Pediasure, however am only taking around 1 or 2 a day. Because I am deficient, my growth should accelerate alot. Does this change anything(that I'm deficient)? Better? Worse? Although, you still have to remember that my bone age is still young. With regards to Crohn's, the liquid diet was amazing, however I am scared the inflamation will return with time.
All the best,
Harry

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

How are you doing? Are you feeling better? Growing?

Please let me know.

All the best,

Lydia D.

HGH, Liquid Diet and more
by: Lydia D.

Dear Harry,

As you know, Crohn's manifests itself as ulceration, lesions and other forms of inflammation due to granuloma formation in the gut.

Food acts like sandpaper on the Crohn's'd gut. Imagine you had a raw, supperating wound on your arm. Which food would you voluntarily rub into it, if you had to rub food into it? The answer is most likely to include yoghurt, mashed root vegetables, broths, white meat, fish, etc. That is how you should approach your Crohn's diet. This is why the liquid diet helps heal your Crohn's and solid food exacerbates active disease. A word of warning about high sugar, including sodas, honey, sweets, chocolate - all these foods increase the acidity in the body and are indicated to exacerbate inflammation.

There is no cure for the disease because it is a genetic, autoimmune disease with medical scientists guesstimating that there may be over 300 separate susceptibility genes identified to date. A cure is a very long way off but hopefully better therapies will be available in the future. A lot of research is going on with loads of clinical trials currently in progress: click here.

I would suggest that you follow your doctor's recommendation to take the HGH for a limited amount of time. It not only increased growth, but it also increases the happy hormone DHEA and if the HGH is stopped suddenly, as opposed to gradually withdrawing it, it can lead to a massive negative swing in mood.

HGH is not a therapy for Crohn's. It should help you to obtain a growth spurt in the last few remaining months of growth available to you, given that your HGH levels are low a the moment. As we have discussed the cut off age for adolescent boys is 16. You may be lucky and keep on growing several months beyond 16 years old.

Keep an eye on your teeth and gums. If your gums look sore and bleed easily, you are most likely short of one or more of the following micronutrients: vitamins C, A and E; zinc, manganese, etc. These are all required for wound healing. http://www.livestrong.com

I would like to hear in your next post that you have put on half a stone and grown a few inches. I know that it is all a pain in the proverbial, but keep on fighting and doing the best you can.

All the best,

Lydia D.


HGH, Liquid Diet and more
by: Anonymous

Dear Lydia,

I was surprised at the amazing results of the liquid diet, even though I only did it for 3 weeks. My SED Rate went down to an incredible 10! My CRP was also very low, and it was definitely something with food in general that my intestines dont like, but what is it? Why aren't scientist close to finding a cure, so many people had so much success with these liquid diets? I just hope that my inflammation still stays low, now that I started eating again.
I also did the HGH stim. test and it went pretty well, although that second medicine they gave me practically knocked me out. I had a nice long sleep. I got the results and I wasn't deficient, yet my doctor said I didn't have as much as I should. She recommended taking the HGH for a little push to grow. What would you say? I'm not sure because all my doctor's were against it in the beginning because of it closing my growth plates etc. Do you think it also helps with the Crohn's?

All the best,
Harry

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Dear Harry,

I totally understand the decision and am pleased that you and your doctor are thinking about new therapy approaches. Losing weight was not the way to go.

The HGH naturally will not help manage your Crohn's, but it will allow you to grow somewhat. Naturally, it has side-effects - keep your eye on these and ask your parents to go through them too: http://www.drugs.com/cdi/somatropin-rdna-origin-nonrefrigerated.html

It is a shame that the doctors did not check out the HGS test the year before last. This would have given you a baseline or t = 0 value, where t is the time of initial diagnosis. You would then be able to compare where you are now (t = approx 16 months) with t = 0 and whether or not your treatment has affected the HGH levels. The likelihood that your Crohn's has affected your growth is about 100%, so I find it astounding that they didn't do this sooner. However, to be fair, they were not aware that you were medication sensitive and a general non-responder to the therapies (used to date). Welcome to the club!

The fact that your liver enzymes started to rise would indicate to me that your body was starting to get stressed. Losing weight means, in your case, losing essential nutrients and going into starvation mode which would show up in the liver. http://www.livestrong.com/article/365389-what-are-the-causes-of-elevated-liver-enzymes-in-anorexia/

Active Crohn's is also known to hit the liver enzymes and to sometimes cause hepatitis. The PPIs increase certain liver enzymes.

The (slight) decrease in SED may have been real or just natural fluctuation in this very unreliable measure of general inflammation in the body.

Orange juice is very acidic and can exacerbate the open sores in your intestine. I suggest that you drink all juice diluted 1:1 with still water and if it is too acidic put a pinch of bicarbonate of soda in the drink to neutralise the acid somewhat without ruining the taste. I stick to diluted pineapple juice which is full of magnesium and potassium and has less acid in it than orange juice.

Stick to the anti-inflammatory and Mediterranean diet mix.

All the best,

Lydia D.

What happens after you take medication for Crohn's Disease?
by: Anonymous

Hi Lydia,

Around last week, the doctor and I decided to come off the liquid diet for a few reasons. I was losing weight, so my doctor said I wasn't doing it right. I was planning on doing it for 4 weeks, and a week wouldn't matter in the long run, because the inflammation would probably return when I come off the diet. So, in the end I was able to do 3 weeks without any solids, and I am happy that I was able to do even that. At that visit, we took some bloods, and I think the SED Rate went down, but I'm not sure exactly how much. (Also I think my ast/alt went up a bit but I'm not sure how much).
My endocrinologist encouraged me to do the Growth Hormone Stimulating test to rule out HGH deficiency and it may just be the Crohn's interrupting my growth. I sit there for 2 hours with them measuring my growth hormone levels. I'll get the results in a week or two.
My gastro's plan was for the time being to eat as usual, but try taking care of my diet, like cut down on fiber, not so much fried foods etc. and on top of that three or four Pediasures which was how much I was drinking on the liquid diet.
Also, do you think that orange juice is bad for Crohn's patients?
Thanks a million

What happens after you take medication for Crohn's Disease?
by: Lydia D.


Hi Harry,

I have been thinking about you and wondering how you have been managing. In the literature, it states that the liquid diet is a challenge to adhere to and non-compliance (not following instructions) is a major problem. However, the majority (not all) of those that do follow it to the letter go into remission.

I agree, that the taste is rough (chocolate is my favourite too). I also know from personal experience that the creaminess of the drinks is nauseating especially if one drinks too much too quickly. I reiterate that you should be sipping a couple of mouthfuls of water inbetween the Pediasure. However, I also understand the logistics at school and how this makes it nigh impossible to drink enough.

As this diet is not working for you and you are feeling so sick and losing weight, you need to go back to the doctor as a matter of urgency. He should put you on the elemental diet. This is the nasal tube feed taken overnight. The drinks are different to Pediasure because they are totally broken down into their molecular components: amino acids, sugars, fatty acids, plus vitamins and minerals, so the body has to do no work breaking down (digesting) the liquid feed. This means that you start to receive nutrition the minute the drip is switched on. You will still need to drink a couple of Pediasures during the day, but it should be easier to manage and weight loss should not be an issue.

I don't know what medication you are on, but if you are taking a PPI (e.g. Omeprazole), this can cause stomach upset, cramping and pains perhaps more so when you are not eating normal food. To settle your stomach you can sip a bicarbonate of soda solution (a flattened teaspoon in 200 ml water). You must not do this if you are still on PPIs and must not take more than 2 flattened teaspoons per day, otherwise the blood pH will change drastically and you will start collapsing.

I would also encourage you to think about Remicade and Humira. There have been positive reports on YouTube from young people like yourself who have taken the drugs. Humira seems to have very positive reports and self-injecting at home is less time consuming than hour long infusions of Remicade at the doctor's surgery.

Harry, it is your decision as to what you do, but I fear that some drastic measures are called for. Please keep the dialogue going with your parents and your doctors and don't give up. It is possible to get through this and have some positive experiences in your Crohn's'd life. Remission must be the aim and this is critical for you to make the most of the limited growth period left to you.

I would also encourage you to find someone your own age to talk to and, if you are feeling really down, immediately organise a councillor for yourself. It is very hard, if not impossible, for healthy people to understand what we have to go through and talking things through with a professional third party does help to put things into perspective.

Certa bonum certamen!

Lydia D.

Continued
by: Anonymous

Also, I forgot to mention that I lost about 2 pounds on this diet, and I am pretty sure it has to do with me not drinking enough of the pediasures, which is why I realise that I have to figure out some way to drink it. Also, sipping it slower does not help. It just makes me suffer with the taste for longer. If I drink it fast, I feel filled up to the top, and also neasous. I also want to note that I never actually throw up, I just get neasous.
Thanks

Continued
by: Anonymous

Also, I forgot to mention that I lost about 2 pounds on this diet, and I am pretty sure it has to do with me not drinking enough of the pediasures, which is why I realise that I have to figure out some way to drink it. Also, sipping it slower does not help. It just makes me suffer with the taste for longer. If I drink it fast, I feel filled up to the top, and also neasous. I also want to note that I never actually throw up, I just get neasous.
Thanks

Liquid Diet
by: Anonymous

Hi Lydia,
So I have been on the liquid diet for almost two weeks now. In the beginning it was hard but I did my best. I realized that I have been drinking the chocolate Pediasure for too long, so I decided to switch it up and go for vanilla. Of course, like all the flavours of Pediasure, the taste was still terrible. Despite the taste, I still drank it. I tried mixing some ice cream or chocolate syrup with it in a blender, but the disgusting taste stays no matter what. Now,I have a new problem with it. Because, besides for chocolate milk or orange juice, that is basically my meals, my body is getting basically sick of it. The second I open the bottle, I already start to feel neausous. When I sip it, it's even worse. It got to point where I only had 3 Pediasures today. What should I do?
Thank You

Liquid Nutrition
by: Lydia D.


Hi Harry,

I have found a few links for you to read:

http://www.crohnsforum.com/forumdisplay.php?f=161

http://www.crohnsforum.com/showthread.php?t=12148

You are on liquid nutrition and not enteral (yet), which is an elemental feed:
http://pinnt.com/Therapies/Enteral-Nutrition/Your-questions-answered.aspx#FAQ57

http://www.healingwell.com/community/default.aspx?f=17&m=1998522

Body building drinks might give you an alternative boost, but most of them do have lactose in them - check this.

Chewing gum might help you stop craving food.

All the best,

Lydia D.

Liquid nutrition
by: Lydia D.

1 of 2

Dear Harry,

I do hear your pain and I really do empathise.

You are right about it not working in 4-5 weeks. This is a long-term commitment. My guess is that your doctor wants to see you in 4-5 weeks to discuss next steps and he will want to keep you on the diet for the next year or so, if there has been improvement in your condition (which there will be if you stick with it). As you have already experienced, the medications have side-effects that can be debilitating or cause you to be disadvantaged when you reach adulthood, e.g. stunted growth, osteoporosis, muscle wasting, etc. Crohn's alone can result in the same occuring.

I am not really qualified to answer your questions with regard to how many pediasures you should drink and what other fluids you are allowed. Your doctor should have given you a list of allowed drinks. Are you sure that your mum was not given a set of instructions? If not, I suggest that your mother rings the gastroenterologist's practice and ask them to e-mail them through or they might be on the practice home page. I encourage you to take a notebook with you to your doctors and to take notes as he talks to you.
continued....

Liquid Diet
by: Lydia D.

2 of 2

As preliminary guidance (until you receive full instructions from your doctor), here are my thoughts to your current nutrition project. I am assuming that each Pediasure bottle contains 240 calories. You need to aim for 3000 calories each day, so at least 8 Pediasures a day, plus the remaining 1080 calories from soup, milk, drinking chocolate (cocoa plus glucose powder 1:1), yoghurt, clear apple juice, grape juice, jello and anything else that is extremely low fibre. You might get away with eating mousse, custard, soya puddings, and such like. You might be allowed a few pieces of chocolate each day and some boiled sweets or wine gums. However, you should not eat too much sugar. Glucose is better for you than table sugar (sucrose). You need to sit down with your mother and plan your liquid meals. You are not allowed anything with "bits" in it - everything must be strained. The "bits" will rub up against the Crohn's ulceration and exacerbate your Crohn's. Strain soup, etc.

There is a book called "Beat Crohn's! Getting to Remission with Enteral Nutrition" by Oppenheimer at Amazon.com. It might be a good read.

A caveat is that if you drink the sip drinks too quickly and without following a sip of drink with a sip of water, you can experience gastric dumping, which will exacerbate or cause diarrhoea and negate the benefits of the enteral nutrition.

With respect to the variability of your lactose intolerance, hidden lactose in various foods plus the changes in severity of your Crohn's from day to day would explain that. For example, hard cheeses contain less lactose than soft cheeses and yoghurt contains relative low amounts of lactose. Keep eating the dairy. If the intolerance gets worse, you can do as I do and crush lactase tablets into your milk or take a lactase tablet with your drink or meal.

I know that this is all a pain in the proverbial and I am sorry that you are having to go through all this. However, I would encourage you to approach this as a challenge and as a great opportunity. An opportunity to go medicine free, gain remission and to grow rapidly. It should be possible for you to gain over a pound a week. This is critical at your stage in life. Otherwise, you are going to end up stunted with a much delayed puberty. You have the power to change this! The first couple of weeks will be hell, but thereafter it will get easier. Please stick with it and please keep a diary. This will enable you to better discuss everything with your doctor.

Remember: there are no such things as problems in life - only challenges!

All the best,

Lydia D.

Benefits
by: Anonymous

Hi Lydia,
Yes I do have lactose intolerance, confirmed by my colonoscopy last year. However, my lactose intolerance is strange: it randomly acts up but for the most part I have no problems with Dairy. I began the liquid diet partially on Tuesday and fully today. I managed it pretty well with regards to school. During breakfast, I took a bottle of Pediasure and just drank it in the bathroom, which is the only place in school where no one would see me. During lunch, I had some chicken soup with jello afterwords. I then took another Pediasure during the day. My question is, if the liquid diet even pays to do because it is quite difficult to do and anyways relapses right when I start eating again. I will not grow a significant amount in 4 or 5 weeks, so what benefit will it provide for me? Also, how many Pediasures do I have to drink a day? Are there any liquids I should NOT be drinking? Milk? Orange juice? Also, do I have to do the diet 100% or can I "cheat" a bit by having some smashed banana or some jello?

I am just having a hard time with the liquid diet and I just need some tips.
Thank you so much again,
Harry

Liquid Diet
by: Lydia D.

1 of 2

Hi Harry,

I think that your doctor has made a very wise decision.

The PEN diet involves inserting a nasal tube every evening when you come home from school. However, this is just one variation on the theme and only your doctor knows what he is actually going to do. He should have explained this at your appointment, but he might be doing more research and discussing your case with colleagues to work out the best way of moving forwards. Ideally you should talk to your nutritionist who will contact your doctor to discuss the diet strategy.

I suggest that you watch the video of the young Crohn's'd girl inserting her own nasal tube in the evening (my previous e-mail), if you haven's already done so. She mentions that she has grown significantly. You might like to contact her through YouTube to find out how she copes at school.

It is true that Crohn's in remission through a liquid diet does relapse once the diet is stopped. However, it is critical that you use the remaining growth period available to you to its maximum. I reiterate that young men normally stop growing at the (average) age of 16 so you don't have much time left. You mentioned previously that your bone age reveals that you are biologically much younger so you might have 18 months or 2 years of growth left if you are lucky. However, you are only going to grow if your Crohn's goes into remission and if it happens now.

You have shown that you are resistant or overly sensitive to the medication (so am I) and the treatment is not working. They could not keep you on steroids because you will end up with osteoporosis and they stunt growth, cause skin thinning, muscle wasting, etc. Even though you had a growth spurt whilst on the steroids, without the Crohn's and the steroids you would have indubitably grown more. So the liquid diet strategy is eminently sensible.

continued...

Liquid Diet
by: Lydia D.

2 of 2

With respect to managing at school, I understand completely that you don't want anyone at school to know what is going on. I recommend that you discuss this issue with your parents. I suggest that you make three columns on a piece of paper and label them: options, pros and cons and see what ideas you come up with with the support of your parents.

Here are a few options to start the ball rolling: - going home for lunch or to a neighbour or relative; home schooling; biting the bullet and saying that you have food intolerances which are interfering with your growth and your doctor has put you on a liquid diet. If your friends are friends then they should accept you as you are. However, I do know how cruel and stupid people can be. I did open up at one place of work and all I got was that they only had my word that I was feeling so tired all the time. Never again!

You can hide the Boost by decanting it into a thermos flask and then dilute it with mineral water just before sipping it. Unfortunately the drinks make great growing media for bacteria and funghi, so you have to be very careful and make sure that they do not lie around warm. If there is any doubt as to its potability then do not drink it. Sterilise the flask each evening by, for example, soaking overnight in a hot bicarbonate solution. Your doctor should give you instructions as to what you have to do to ensure that the treatment works.

Have you been checked for lactose intolerance? A lot of Crohn's and ulcerative colitis patients are lactose intolerant - over the usual 25% of the Western population. Some 75% of the Asian population are lactose intolerant. Normal milk also contains a lot of bacteria - usually not harmful to healthy people. Crohn's patients, that are not lactose intolerant or have milk protein allergies, generally do a lot better on UHT milk. OK, it tastes rough, but it has a lot lower bacterial count. I drink UHT milk with a crushed lactase tablet in it because of my lactose intolerance.

All the best,

Lydia D.

Liquid Diet
by: Anonymous

Hi Lydia,
So my doctor decided to put me on a liquid diet. Can you please explain to me all about the liquid diet. I dont understand why I will do it because I heard that Crohn's comes back when you start eating again. How can I manage it with school? Won't everyone notice that I'm not eating anything. How will I just eat Boost or Pediasure all day without anyone noticing? What can I eat what can't I eat etc... I am really hesitant about this whole thing because I can barely stand 1-2 Pediasures a day, and now NO food and JUST pediasure...? Can you please just give me an overall way how to manage my day with this diet please?
Thanks a million once again,
Harry

Liquid Diet
by: Anonymous

Hi Lydia,
So my doctor decided to put me on a liquid diet. Can you please explain to me all about the liquid diet. I dont understand why I will do it because I heard that Crohn's comes back when you start eating again. How can I manage it with school? Won't everyone notice that I'm not eating anything. How will I just eat Boost or Pediasure all day without anyone noticing? What can I eat what can't I eat etc... I am really hesitant about this whole thing because I can barely stand 1-2 Pediasures a day, and now NO food and JUST pediasure...? Can you please just give me an overall way how to manage my day with this diet please?
Thanks a million once again,
Harry

Liquid Diet
by: Anonymous

Hi Lydia,
So my doctor decided to put me on a liquid diet. Can you please explain to me all about the liquid diet. I dont understand why I will do it because I heard that Crohn's comes back when you start eating again. How can I manage it with school? Won't everyone notice that I'm not eating anything. How will I just eat Boost or Pediasure all day without anyone noticing? What can I eat what can't I eat etc... I am really hesitant about this whole thing because I can barely stand 1-2 Pediasures a day, and now NO food and JUST pediasure...? Can you please just give me an overall way how to manage my day with this diet please?
Thanks a million once again,
Harry

What happens after you take medication for Crohn's Disease?
by: Lydia D.

There is a clinical trial that is set to start this year for which you would be eligible for. It involves PEN versus EEN. It has not yet started. http://clinicaltrials.gov/ct2/show/NCT01728870

They write here that TEN or EEN suppresses inflammation whereas PEN does not. I suggested in my e-mail PEN, but with no solid food. In the paper they allowed the PEN group to eat whatever they wanted to. The action of solid food on the Crohn's inflammation in the gut is to irritate and exacerbate the inflammation.

Treatment of active Crohn's disease in children using partial enteral nutrition with liquid formula: a randomised controlled trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856067/

There was a wonderful video on YouTube about a young guy who was on EEN and his coping strategy was to cook for the family. He found that handling the food made it easier to accept the not eating it part. It also made him very popular with his family. Unfortunately, I can't find it and it may have been taken down.

There are a number of videos on enteral and parenteral feeding at YouTubes:
Placing your nasal feeding tube:
https://www.youtube.com/watch?v=YJIFOCbPTjo
Enteral feeding
https://www.youtube.com/watch?v=TwjKravpygQ
15 year old on Remicade every 8 weeks - growing again!
https://www.youtube.com/watch?v=otCQBFasL4g

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

Sorry to hear that the medicine is not working.

Research has shown that exclusive enteral nutrition(EEN or elemental feeding - nasal tube into stomach) is highly effective in getting children into remission. It is the preferred treatment for paediatric patients with Crohn's in Japan. However, remission is maintained only for the length of the treatment and the disease relapses as soon as the enteral feeding is stopped: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846248/
http://www.nestlehealthscience.com/newsroom/press-releases/wcpghan-2012

TPN (total parenteral nutrition) is the overnight feeding - usually 12 hours - on a drip with a port usually in the chest for home feeding. The risk of CVC (central venous catheter) infection is high. I have had Pseudomonas aeruginosa sepsis as a result of CVC infection (after 6 days on TPN). Swimming will not be possible initially with a CVC: http://www.oley.org/Swimming.html

Long-term risks include liver and kidney failure. Thus, TPN should be given for the shortest term possible.

You need a good doctor to talk you through the pros and cons. Naturally, if you wear a nasal tube everybody is going to know that you are ill.

If it was myself, based on what I know now, I would opt initially for partial enteral nutrition (PEN) for six weeks with careful monitoring. There would possibly be the option of drinking the astronaut polymeric drinks (Ensure or equivalent) or elemental drinks during the day and then getting rigged up to a nasal feed in the early evening (partial enteral nutrition or elemental feeding). It would mean that you would have to place the nasal feeding tube yourself (with the help of a parent), if this is allowed by your doctor. This would have to be carefully monitored and the decision made after six weeks whether or not to put you on TPN. If PEN works then I would stay on it for as long as you can.

I do agree that liquid feeding (no solid food at all) is the best way to go to. It would best supply you with the micronutrients vitamins, minerals, etc., that you need to grow. At this stage of your life growing is important as is avoiding osteoporosis and other diseases caused by malnutrition.

EEN is better than TPN for promoting or maintaining remission.
http://www.crohnsforum.com/showthread.php?t=23607

All the best,

Lydia D.

6MP Not Working
by: Anonymous

Hi Lydia,

Unfortunately the MRI result was still not the greatest. It was still better than my initial diagnosis, but the ilium was still inflamed. So my doctor said that it seems that the 6MP is not working for me. Appetite is not great, and increase in height isn't that great either. He said we have a few options that we could do. Either we can do the 4 or 6 week liquid diet, or the process where you get extra nutrition in middle of the night, or I have to go to the harsh biological medicines. I do not want any of these.. What should I do?

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Dear Harry,

Sorry to hear that all is not as hunky dory as it should be. Your new symptoms are indicative of 6-Mercaptopurine (aka Purinethol) side-effects which can cause loss of appetite through to anorexia in certain patients. Look under "Gastrointestinal" here: http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=73780

I am assuming here that you are taking your daily multivitamin. However, there is no guarantee with Crohn's that a multivitamin will cover the daily requirements.

Please note that micronutrient deficiencies can cause inflammation. Raised SED rates just indicate inflammation in the body and they are not specific for any disease. http://labtestsonline.org/understanding/analytes/esr/tab/test

Another MRI is a very good idea. I am having one this Thursday. I am currently in the process of changing my diet to very low residue in readiness.

My thoughts on your current situation (to be discussed with your parents, doctors, and, if possible a nutritionist) are as follows:

1) If your appetite continues to decline (in the direction of anorexia) the dose will have to be reduced at the risk of your Crohn's flaring up. Weight loss has been shown to reduce wound healing in the body: http://www.medscape.com/viewarticle/711879_7

Sorry to lump you in with the kids (but you are not fully grown yet), apparently paediatric patients with Crohn’s disease should take an absolute maximum oral dose of 75 mg daily.http://www.drugs.com/monograph/purinethol.html

2) Drink more fluids to wash the toxic by-products of the 6-Mercaptopurine out of the body. This will also reduce the side-effects of the medication and, thus should theoretically increase your appetite.

3) With respect to the SED rate remaining high, it would be useful if you had your thyroid function tested. If you have a higher than normal TSH, but normal T3 and T4, this indicates a sub-clinical or latent hypothyroidism. A latent hypothyroidism can result in higher than normal SED rates (see Point 5).

4) I would also suggest that your vitamin D, vitamin B12, and folic acid blood levels are tested, together with zinc and calcium. This, together with the thyroid function tests, would indicate whether you still have micronutrient malabsorption due to the active Crohn's and despite the daily multivitamin tablet.

You might like to consider taking a vitamin B-complex, plus extra vitamin C (e.g. the latter in your breakfast fruit juice diluted 1:1 with water) in addition to the multivitamin tablet. This will double your vitamin B intake. The upper limit for the B vitamins is determined as 100 mg of vitamin B6 per day (according to the FDA).

continued...

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Page 2 of 2

5) Selenium deficiency is frequently found in Crohn's patients and in some parts of the population. There are over 30 enzymes in the body that require selenium to function, and about 50% of the body's selenium is found in the thyroid gland. Selenium is anti-inflammatory, but only required in microgram quantities. One or two Brazil nuts contain enough selenium for one day. http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

6) You might also not be getting quite enough iodine which is also necessary for thyroid function. Like selenium, this micronutrient is only required in microgram quantities and is usually found in the normal diet. However, you might like to supplement your diet by sprinkling powder Nori over your food every second day or by eating sushi once a week. I make home-made Crohn's sushi using cooked carrot sticklets (julienne), smoked salmon, avocado - no wasabi or raw fish for Crohn's patients in a flare. http://www.davidj.org/docs/homemade_sushi.html

7) Zinc deficiency is also commonly seen in Crohn's patients. Zinc is required for wound healing. The WHO recommend 20 mg zinc supplemented daily for paediatric patients with chronic diarrhoea.

8) I suggest that you eat every couple of hours. Highly nutritious foods with plenty of vitamins and micronutrients. Fortify foods with cream, cheese, oil, anything that it calorific but not too much sugar and chocolate and red meat (acidic and pro-inflammatory). Increase your astronaut drinks and sip these alternately with water, tea, or tomato juice or diluted (1:1) fruit juice. But, I do know that you can end up feeling very nauseous with the above.

9) Try and follow the anti-inflammatory diet more closely: http://www.webmd.com/food-recipes/features/anti-inflammatory-diet-road-to-good-health
http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

These are the first things that come to mind. If I think of anything else I will let you know. I can only stress the diet. I do know how difficult it is to eat when you have no appetite and I empathise with your current situation.

I have just had potato and celery root broth for breakfast with a side-serving of boiled egg and am going to break open my first Fresubin of the day. I have a rice and soya sausage broth organised for lunch. Dinner is not decided because I need to go shopping today, but it will be colourless slop.

I don't do the MRI prep drink protocoll because of my short bowel syndrome. My intestinal transit time is very short and I dehydrate massively with the prep. Thus, I am doing it by myself which is far more pleasant. I just have to ensure that I am totally cleaned out or else they will be diagnosing me with egg tumours, etc.

All the best,

Lydia D.

SED Rate
by: Anonymous

Hi Lydia,

How are you,

I recently had an appointment with my GI doctor and when the results came back the SED Rate was a little high-32. Because of this, both my GI doctor and my endocrinologist felt that the growth-hormone evaluation test would not be accurate. So my GI doctor recommended we do another blood test checking if the SED Rate might have lowered.Unfortunately, it didn't budge. It remained at 32. The 6MP levels were good. Liver functions were also very good. Supposedly I gained about 5 pounds and grew about an inch, but I don't feel as much appetite as I'd like. Also, because it is a bit past a year after my initial diagnosis, my GI doctor recommended that we do another MRI to just see what happened over the last year (if the ilium is still severely inflamed etc.)

My pleasure.
by: Lydia D.



Hi Harry,

Yes, time does fly. It has been a pleasure guiding you through the morass of dealing with Crohn's disease and with doctors - not all of whom act intelligently and in our best interests.

I don't profess to be a medical doctor, but I am a very experienced patient and I am very pleased that I have been of some support to you. Like everything in life, it has definitely been a two-way street. I reiterate that I am on invalidity benefit and, as a result, I don't feel at all useful the majority of the time. Thus it is nice to be able to help others in as far as I am able. It is naturally even more rewarding when the other person taken everything on board, acts on the information given, and provides feedback.

I have been very impressed with the amount of study work and research that you have put in to fully understand what is happening to you. And I know that I have referenced some very complicated medical scientific papers, which you have obviously worked through. In my opinion, having a solid grounding in the mechanism of the disease makes it far easier to manage both the disease and the doctors. Unfortunately, some of the doctors do tend to make it up as they go along and you will occasionally have to correct them.

Keep an eye out for new symptoms with the increase in 6-MP. Your doctor must take bloods every few weeks to check that it is not poisoning your system. However, I assure you that you will be the first to know this. Should you suffer new pains, sweating, fever, cramping, vertigo, etc., go to your doctor or, if severe, hospital straight away.

Enjoy your life as much as you can and keep growing - daily multivitamin and the three S's (sleep, study and sport) are a must.

All the best for 2013 and beyond!

Lydia D.

Thanks!
by: Anonymous

Wow Lydia,

What a year it's been. If you haven't realized I was diagnosed almost a year ago. Time flies. My parents and I wanted to thank you so much for all the help you've given me to know everything about this disease.. Any question I had you always helped me with and you always gave me the right tips on everything. I want to wish you a healthy and amazing 2013.

Happy New Years!

Just to wish you well.
by: Lydia D.


Hi Harry,

I would like to wish you a happy, healthy and successfull 2013.

I hope that your health remains stabile, and everything else that you wish for comes true.

Best wishes to you and your family,

Lydia D.


All OK.
by: Lydia D.

Hi Harry,

It is great to hear from you. I am still chugging along, thanks for asking. I haven't had any repeat episodes of the June events and I don't intend to. I have a referral to see my cardiologist, but the first available appointment for non-emergencies is next April. So, it is a question of waiting and seeing. I am sure that I will be OK.

Well done on the growth spurt. You are obviously doing everything right: a balanced, anti-inflammatory diet with plenty of protein, supplementing with the right micronutrients, lots of exercise and fresh air, sleep, etc.

As we have discussed previously young men generally stop growing vertically around 16 years old. So, continue making the best of the time left and I am sure that you will surpass the 5'7'' mark. Sleep is also very important - growth spurts take place at night when you sleep. Everyone shrinks during the day, that is why you should always measure your height in the morning.

Perhaps, the Crohn's put you in a sort of year-long hibernation mode and you will keep on growing beyond 16. I hope so. It is generally been shown to be the case that the taller you are (as a man), the more successful you will most likely be.

Your heart pains could be due to costochondritis, but, personally, I think that the dehydration or reflux theories are more likely. If you weren't doing exercise when the pains started then it is unlikely to be costochondritis.
https://en.wikipedia.org/wiki/Costochondritis

I still would recommend that you do lots of aerobic sport. It should be non-contact as contact trauma can cause/increase inflammation in the healthy individual. I swear by my mini-trampoline - I can walk a few minutes at a time on those days where I am too exhausted to leave the house. For you - adding wrist and ankle weights would give you a great work out. Sometimes I think that a punch bag would be a great idea to rid myself of pent-up frustration with this illness, but I just do not have the energy for it and it could exacerbate the Crohn's. Please discuss all changes to your lifestyle with your doctor(s) and parents.

All the best,

Lydia D.

All is going well
by: Anonymous

Hi Lydia,
How have you been doing recently? I've been doing pretty great recently, as a matter of fact I grew about 2 inches since the summer!! I was also seen by an endocrinologist she said this growth was amazing, but it can maybe be due to accelerated bone growth which isn't what we want. We want to keep the bone age as low as possible before puberty kicks in. So we got a bone-age and it turned out to only be 13 year old bone when I'll be turning 15 in a few months! So thats a 2 year bone delay, which increases my height expectancy to be 5"7+ which is great for me. The SED rate was at a record low of 9, and everything is great including stools. Regarding the heart atack-like symptoms my gasto said it can be something to do with cartilage or bone or something in between the ribs. I've also had to increase my 6mp dosage to 50mg.
Just wanted to let you know how things were going and wonder how you are.
Harry

My Apologies
by: Lydia D.

Hi Harry,

Just to clarify - I did not read your reply to my post of the 23rd September. I must have received notification, but assumed that it was telling me that I had posted and I just archived the notification instead of checking the site. Sorry about that. These things happen frequently when one gets older. I wasn't ignoring you on purpose or anything like that.

I have been putting off going to the cardiologist, but will make an appointment this quarter for a check-up with him.

In the meantime here is a hopefully interesting reference for you:

A Guy With Crohn's
http://aguywithcrohns.com/tag/intestinal-failure/

I hope that you are feeling OK and are able to keep up with your schoolwork - a necessary evil as a prerequisite to a career.

All the best,

Lydia D.

My Medication
by: Lydia D.

This is absolutely everything that I am taking at the moment. Bear in mind that I have smouldering Crohn's ileitis, intestinal failure with ileostomy and also loss of the terminal ileum (required for absorption of vitamin B12 and fat-soluble vitamins). I am very medication sensitive and petite - 1.62 m and 53 kg. I struggle to maintain my BMI between 20 and 21. I have up to 3 litres of diarrhoea each day, hence I am on a high vitamin regime, which you do not need. I also eat very healthily with no fast food, chips, etc., (within reason), but still do not obtain what I need from my food.

Please note: I always discuss my supplements together with medication with my doctors and obtain their OK for any additions or changes. Supplementing can be dangerous and can result in death in the unwitting.

Crohn's
- Budenofalk (Entocort) capsule 3 mg (1-0-0)
- Tincture of Opium (1 g/ml) 6 Drops (1-0-1)

Malabsorption and hence Crohn's anorexia
- Fresubin Energy Drink 200 ml, 300 kcal, 1-2 sipped slowly per day
- Iron tablets (14 mg with vitamin C 180 mg, folic acid 200 μg, vitamin B6 4.5 mg) (1-0-0)
- Zinc Plus Capsule (5 mg Zn++ with B-complex 100% RDA) (2-2-0) with meals
- Medical copper bangle
- Magnesium 200 mg fizzy tablet (1-0-1)
- Calcigen D forte fizzy tablets (1000 calcium mg/880 I.E. vitamin D) (0-0-1)
- Fat-soluble vitamins (vitamins A 100,000 I.E., D3 10,000 I.E., E 100 I.E., K 10 mg in groundnut oil) injected monthly
- 6 mg Vitamin B12 (6 mg/500 ml) infusion every 3 months

Dehydration/acute diarrhoea
- ORS (oral rehydration salts; NaCl 2.6 g, NaHC03 2.5 g, KCl 1.5 g, glucose 13.5 g per litre) up to 0.5 litre daily

Hypothyroidism (sub-clinical - high TSH, T3 and T4 normal)
- Selenium 100 μg (1-0-1)

Reflux (GERD)
- Sodium bicarbonate tablet 0.85 g dissolved in 200 ml water (2-0-2) or in powder form as required
or
- Omeprazole capsule 20 mg (1-0-1) as required

Pain (Analgesia)
Paracetamol (aka Acetominophen) 500-1000 mg (maximally 1-1-1-1) as required

Travelling/On the Road (always with me)
Glucose tablets (5.75g) as required
Salt tablets (250 mg) as required
Bottle of tap water

What could be of interest to you is the ORS on very bad days and a travel kit for when you are out of the house.

If you are taking your vitamin tablets, are not experiencing any major cravings, and your bloodwork is OK then you are not likely to need the rest of the supplements. EXCEPT: you should alwaysy take calcium and vitamin D when on steroids (Prednisolone, Budesonide, etc.). It is always advisable to take a multivitamin tablet when you are on Azathioprine or 6-Mercaptopurine.

The medical copper bangle is necessary when one is taking zinc supplements long-term. Without the bangle I end up copper depleted and my joint problems increase significantly.

I hope this helps. If you have some anomalous bloodwork, I am quite a dab hand at explaining what you should discuss with your doctor.

All the best to you and your family,

Lydia D.

What happens after you take medication for Crohn's Disease?
by: Lydia D.


Hi Harry,

I am doing OK. I have had no major incident since June.

I think that a couple of Boosts, etc., each day will really help you. The secret is to only sip them and inbetween one sip of Boost take a few sips of water. Otherwise they can exacerbate diarrhoea and they can cause nausea.

You still have a couple of years of growth left - vertically that is. I agree with your doctor about the eating, but it must be highly nutritious: I can't stress the micronutrients and protein enough, the carbohydrates and good fats - salmon, sardines, etc.

I reiterate that smoking, alcohol, street drugs, and a typical teenager diet (cola, sweets, fried food. etc.) all stunt growth. Smoking in particular has been shown to trigger Crohn's. Just to prove that I am not (personally) out to completely spoil your enjoyment of life, here are a few references on the subject:

Top 10 Ways to Make Your Crohn's Disease Flare
http://ibdcrohns.about.com/od/basicscrohns/tp/crohnsflare.htm

The stress of my dad's divorce brought on my Crohn's disease, reveals RICK PARFITT JNR
http://www.dailymail.co.uk/health/article-1248995/The-stress-dads-divorce-brought-Crohns-disease-reveals-RICK-PARFITT-JNR.html

Naturally, the emphasis is on moderation and there is nothing to stop you from having a few sweets once a week or so.

Be aware that just being short of one essential micronutrient can cause increases in the general inflammatory parameter ESR - it does not have to be Crohn's. However, if you feel Crohn's'd then it probably is down to smouldering Crohn's which indicates that your Crohn's is still bubbling away despite the medication.

There is a school of thought that indicates that the medication just slows the course of the disease. The long-term outcome cannot be influenced as such. However, I think that that is difficult to prove. You can read more at medscape.com.

All the best,

Lydia D.



How Are You Feeling
by: Anonymous

Hey Lydia,
I was wondering how you are. Are you in the hospital? How is your heart?

6MP
by: Harry

Hi Lydia,
About that I surely will take that into consideration about being hydrated. Also, my mom just bought be Boost and Breakfast Essentials, maybe they will have a better taste that Pediasure or Ensure. Also, my gastro called about the most recent blood work and said that the SED Rate was high-21. He said since 2 blood tests ago it came up as 35 (the whole thing of thinking maybe it's a virus or something) was probably Crohn's activity. He suggested one of either two things. One, either we can go another 3 or 4 weeks with just Pentasa and eat lots and lots and lots, because he said if you eat lots and lots then it will tell the brain to start making the body grow, which is really my only main symptom. Or we can just start with 6MP. We held it off until now, but I have a feeling that I will need 6MP and hopefully it will help. By the way, what medications are you on now?
All the best,
Harry

What happens after you take medication for Crohn's Disease?
by: Lydia D.


Dear Harry,

I have been thinking about your heart pains and I don't know why I didn't mention this in my first reply, but dehydration can cause angina (heart pain), which indicates that the heart is in trouble or irritated. The thicker the blood, the more the heart has to struggle to work. IBD patients are at great risk of thrombosis (clots) due to dehydration. This might be another explanation for the intermittent pains. So be careful and keep drinking. This is really important when one has [acute or chronic] diarrhoea.

By way of a postscript, I wanted to mention that I had a couple of [mild] heart attacks in June this year. So if I suddenly stop replying, you know where I am. I am sure that you will find another Crohn's mentor should I suddenly go AWOL. However, you have all my favourite and really excellent references that you can draw on. I am probably not going anywhere soon, but the incidents took me somewhat by surprise because the symptoms were so typical - feeling of impending doom and crushing pain in chest - in women that is not always the case and symptoms can be very nebulous.

I have a referral to my cardiologist to discuss the existing valve damage (due to previous sepsis) and to determine if there is anything new. However, I am fairly certain that they were brought on by acute dehydration. It was fairly hot in June and with my intestinal failure it is very difficult for me to keep hydrated. I have not had anything since apart from the usual angina. I have also learnt that long-term angina is generally a forewarning of an impending heart attack. I have had angina for years now.

Have a good semester.

All the best,

Lydia D.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

I am pleased to hear that the appointment went well.

Nexium is one of the treatments for reflux and it is a PPI (proton pump inhibitor). If you consult the list of references I forwarded in a previous posting then you will see that the FDA has issued a warning about the long-term treatment with PPIs and recommends a maximal 14-day therapy.

I take Omeprazole which is a sister drug and also a PPI. I reiterate that I have been on PPIs since 2003 and I have reduced them to about once every couple of weeks and the rest of the time I am on a low-acid diet and bicarbonate of soda.

The fact that you have gastritis (inflammation of the stomach) that is not Crohn's inflammation would indicate to me that you have over-acidification of the body. I suggest that you modify your diet further to anti-inflammatory and alkaline or low acid. Unfortunately, every thing that over-acidifies that body tastes great: red meat, pop and colas, sweets, chocolate, fizzy water, citrus fruits, spices, coffee, tea, etc. Of course, I don't need to mention the adverse effects of alcohol and cigarettes here.

http://well.blogs.nytimes.com/2011/11/07/tired-of-feeling-the-burn-low-acid-diet-may-help/

http://articles.chicagotribune.com/2012-06-13/health/sc-health-0316-high-acid-food-20120613_1_protein-diets-acid-reflux

http://www.livestrong.com/article/292174-low-acid-diets/

Good news that you are growing. Keep on eating high protein, lots of vitamin- and mineral-enriched foods. You still have the best part of a couple of years to go before you stop growing.

Ask your mum to roast you a pumpkin. She can cut the top off, scoop the seeds out, stuff it with par-boiled vegetable savoury rice with soya granules or similar. It is a great meal and can be eaten skin and all. http://kitchen-parade-veggieventure.blogspot.de/2007/10/how-to-roast-whole-pumpkin.html

All the best,

Lydia D.

P.S. Keep me posted - every six months or so is fine - no stress. And, enjoy yourself as much as you can without neglecting your school work.

Update
by: Anonymous

Hi Lydia,
I had a GI apptmnt yesterday and all went great. I asked my doctor about the pains so he told me it could be many things. He said since it lasts for maybe a few seconds it could be a muscle or something of that sort. I asked if it can be reflux, so he answered it may be reflux however if nothing comes up he doubts it's reflux. He said since I have inflammation in my stomach (not granulous or something) so I can try some Nexium. I grew about one inch over the summer. I'll keep you posted about the blood work.

All the best,
Harry

Probably GERD
by: Lydia D.

Page 1 of 2
Hi Harry,

I am pleased to hear that you have seen a nutritionist. You can increase your calories by drinking a couple of cans of Ensure or equivalent. I am sure that the nutritionist told you that. I am also on a 2500 to 3000 kcal diet. I know how difficult that is especially because I cannot eat high sugar and high fat foods - I am intolerant and lose a kilo or so after indulging. I am sure that you were also told that you need plenty of protein and sport for a final growth spurt. And please keep on taking the multivitamin on a daily basis.

I am going to cross swords with you with the reflux issue, although I naturally cannot give you a diagnosis. Reflux comes and goes in the healthiest of people. You will not necessarily have symptoms every day. It is a very individual thing. You certainly don't want chronic GERD on top of everything else you have and at your, but intermittent acute GERD cannot be discounted at this stage. However, I hope that my theory is disproved and that you find out what the pains are due to.

As an aside: I hope that your school term has started well and that you feel well enough to tackle everything.

My symptoms are sore throats, acidic taste in my mouth, laryngitis and occasional ear ache (laryngopharyngeal reflux). I virtually never get heart burn. When I have had heart burn, then it has been severe and feels as though I am having a heart attack. My GERD is chronic and I have particularly bad night-time GERD. Other people have symptoms only during the day.

I reiterate that reflux is called the silent killer. EGD (esophagealgastroduodenoscopy) will only detect oesophagitis, gastritis, peptic ulcers, Barrett's oesophagus, gastric tumours, etc. Reflux is measured by monitoring oesophageal pH http://www.medicinenet.com/esophageal_ph_monitoring/article.htm

(continued....)

Probably GERD
by: Lydia D.

Page 2 of 2

If you have had intermittent pains prior to your diagnosis then, to my mind, reflux is still very high on the list of possibilities. On the other hand, pleurisy is a lot lower on the list. I am not trying to trivialise these symptoms because there are a myriad of other possibilities such as costochondritis, diaphragmitis, etc. (Peri)Carditis, myocarditis, etc, have been eliminated by the cardiologist's diagnostic tests.

Please keep a record for your doctor when you have these episodes - time and duration; how long after a meal or sport; what the meal consisted of;
anything else that may be relevant. One can exacerbate GERD by not eating properly - so remember lots of small balanced meals throughout the day.

Another word of warning, fizzy drinks, including fizzy water, stimulate the stomach to overproduce acid. The stomach thinks that the bubbles are food.

I am pleased that you have come of the Budesonide - as you know corticosteroids also stunt growth. I also reiterate that your lack of previous growth was likely due to malabsorption due to the active Crohn's.

I know that it sounds trite, but try not to worry too much about the acute, intermittent pains. Keep an eye on the situation and record when it happens. Crohn's patients always have something going on and the doctors are frequently unable to say exactly what is happening to us. Just don't let them fob you off with the old "psychosomatic", which really translates into "I'm a doctor and I don't have a clue what is wrong with your". That is what they did with me and I lost my colon as a result.

All the best,

Lydia D.





Probably Not GERD
by: Anonymous

Hi Lydia,
What you said about having GERD.. I doubt that for a bunch of reasons,
1) Nothing comes up or burping or anything of that kind
2) I already had an EGD done in December along with my colonoscopy. No GERD found.
These pains are also not due to medications because this was a problem about a year before I even knew what Crohn's was.
Also these pains are nothing to do with food it happens at random times ( not after I eat ). I am now taking just Pentasa for Crohn's. I take a multi-vitamin and one iron tablet for low ferritin. Also, recently I went to a nutritionist. Me and my mother sat there for about two and a half hours! She discussed exactly how and when I should eat my food and more importantly, which foods. She told me I should have a caloric intake of approx. 3000 calories per day, and hopefully I'll be able to grow better. I think I have grown a bit over the summer, but I'll see at my next gastro appointment. The doctors said that I should wait until about December/January to see if I start growing at a faster rate. If I wont, I will most likely take that 3 hour growth hormone stimulating test.
All the best,
Harry

Reflux References
by: Lydia D.

Reflux References

Ten Lifestyle Changes for Acid Reflux and GERD Relief
http://www.medslant.com/acidreflux-lifestyle-changes.html

Lifestyle Changes That Can Prevent Heartburn
http://heartburn.about.com/cs/prevention/a/lfestylechanges.htm

Diet/Lifestyle Changes for LPR/Reflux
http://www.drjoshuazimm.com/conditions-acid-reflux-diet-ent-doctors-manhattan-new-york.html

Treating Acid Reflux Disease With Diet and Lifestyle Changes
http://www.webmd.com/heartburn-gerd/treating-acid-reflux-disease-with-diet-lifestyle-changes

My beloved chocolate gave me ulcers, heartburn and caused me to lose half my body weight
http://www.dailymail.co.uk/health/article-2144409/Chocolate-gave-ulcers-heartburn-lose-5-stone.html

Combating Acid Reflux May Bring Host of Ills
http://well.blogs.nytimes.com/2012/06/25/combating-acid-reflux-may-bring-host-of-ills/?src=me&ref=health

"...Be aware that the OTC proton pump inhibitors should only be used as directed for 14 days for the treatment of frequent heartburn. If your heartburn continues, talk to your healthcare professional. No more than three 14-day treatment courses should be used in one year..."

http://www.fda.gov/drugs/drugsafety/postmarketdrugsafetyinformationforpatientsandproviders/ucm213206.htm

Those on PPIs would be well advised to take magnesium, lots of dietary calcium, vitamin D, vitamin C, etc. Those on long-term PPIs will eventually need vitamin B12 injections or sublingual vitamin B12.

Broccoli is full of calcium http://www.ehow.com/facts_6916704_juice-bone-health.html

It is wise to follow one's (healthy) cravings http://www.naturopathyworks.com/pages/cravings.php

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

I had a very quiet summer and managed to get a couple of household projects out of the way (balcony, wardrobe clean out), thank you. I am pleased to hear that camp was successful.

Sorry to hear about your new symptoms. I really need an up-to-date list of everything that you are taking including all vitamin/mineral/herb/voodoo treatments/etc. in order to make an educated guess as to what is going on. However, I will have an initial go without this information.

The stabbing pains could indeed be an infection, it could be a side-effect of medication/supplements or it could be GERD or GORD in our part of the world (gastro-oesophageal reflux disease - aka reflux).

If it was pleurisy, you would have severe symptoms on a daily basis and be very, very sick https://en.wikipedia.org/wiki/Pleurisy#Signs_and_symptoms

However, I cannot rule anything out - only your doctors can really help you with a diagnosis. I can only give you a few ideas to discuss with them.

I suspect that the heart pains are most likely to be due reflux in your case. And not just because I have chronic reflux - the majority of the population have it some of the time (acute reflux due to over-indulging and/or over-eating when celebrating, etc., and around 25% have chronic reflux.

I also suspect that you may have gastritis from a general over-acidification of the body.

In reflux the acid in the stomach flows into the oesophagus and sometimes up into the throat and mouth, and middle ear. I always had ear infections as a child and this has been linked to chronic reflux. Babies have chronic reflux because the oesophageal sphincter - the muscular ring at the bottom of the oesophagus (food pipe) which separates the oesophagus from the stomach - is not fully developed.
(continued...)

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Page 2 of 2

There is literature for Crohn's that indicates that our intestines, on average, are somewhat shorter than the general population and that various sphincters don't work as they should in out dysfunctional bodies is probably not a big surprise.

There are lifestyle (including dietary) changes you should make but, because of your medication, these are unlikely to completely solve the issue. Steroids, such as Budesonide aka Entocort, and many other medicines in addition to certain food, drink, street drugs, etc., relax the oesophageal sphincter and enable reflux to occur. I will forward you a list of references under separate cover.

Reflux is not a good thing because it leads to oesophagitis (-itis - inflammation - of the food pipe). The oesophagus lies adjacent to the heart and when it is inflamed it presses on the heart, irritates the heart and causes heart pain. Hence, the term heartburn. Reflux can also cause Barrett's oesphagus, 3% of patients go on to develop cancer of the oesophagus (the so-called silent killer). Budesonide and other medication could also cause peptic ulcers.

The usual diagnostic procedure for GERD and gastritis is a scope (gastroduodenoscopy) to look at the food pipe and the stomach.

I have a suggestion that you should discuss with your parents if (prior to seeing a doctor) you feel like experimenting on yourself again: dissolve an eighth (absolute maximum a quarter) of a flattened teaspoon of bicarbonate of soda in 100-200ml water and, for the next couple of days only, sip before you go to bed. (Mums use bicarb in baking.) Note the results of your experiment in your diary to discuss with your gastroenterologist. The next time you have the pains you can also sip a bicarb solution. It should have a fairly immediate effect if it is GERD.

Caveat: Do not be tempted to increase the dose or your body will end up too alkaline and then you will start collapsing all over the place. I currently take bicarb morning and evening because I am trying to give up PPIs (proton pump inhibitors, Omeprazole, Pantaprazole, etc. - inhibit production of stomach acid) completely. However, I don't think that you should take an adult dose of anything. You still have a couple of years of growth left.

Another caveat is that temporarily neutralising the acid in the stomach can interfere with the absorption of medication. Thus, bicarb should be taken a few hours after your last medication.

If I think of anything else, I will let you know.

All the best,

Lydia D.

Pleurisy
by: Anonymous

Hi Lydia,
How was your summer?
I had an enjoyable summer and now am back in school. Something that has bothered me a bit was these random stabbing pains in my chest near the heart. They happen very randomly; it could be two weeks in between when it happens, it can be two days. Basically the pain feels like a very painful stabbing pain and gets worse as I breath in for air. However the pain goes away in about 5 seconds. However, the pain is very serious, and has been happening on and off for the past year and a half at least. About a year and a half ago, my mother suggested we see a cardiologist. He took pictures of my heart (I forgot what this process is called ECG possibly?). And said you're heart is perfectly fine, don't worry about it. It happened again recently so I tried running a google search about it. I saw something about pleurisy and I decided to check out the facts about it on Wikipedia. I came across causes and saw IBD as one of them. Could it be I have this condition?
Thank You Again,
Harry

Camp
by: Anonymous

Hi Lydia!
I am going to camp soon. My "plan" will be to try taking my meds by myself in my room, and if someone sees I'll tell them I am taking medicine for a infection. If I see that it is a bit hard by myself, I will seek help from the nurse. Another point is that thank god my SED Rate came back as 13! So I will Not be put on 6mp :) I won't be able to post for about another month so have an enjoyable summer!!
Harry

Camp
by: Anonymous

Hi Lydia!
I am going to camp soon. My "plan" will be to try taking my meds by myself in my room, and if someone sees I'll tell them I am taking medicine for a infection. If I see that it is a bit hard by myself, I will seek help from the nurse. Another point is that thank god my SED Rate came back as 13! So I will Not be put on 6mp :) I won't be able to post for about another month so have an enjoyable summer!!
Harry

SED rate
by: Lydia D.

1 of 2

Hi Harry,

I am soldiering along, thank you. The weather is great here and that makes on generally feel chirpier.

I don't want to burst your consultant's bubble, but I am not a great believer in total remission, especially not in ileocolonic Crohn's. Most Crohn's (temporary) remission is achieved by surgery.

There are some lucky patients that have an isolated and localised flare and that is it. The singer Anastacia may be one of these, although that doesn't exclude the possibility of her Crohn's flaring in a few years/decades time. She was also operated on and her terminal ileum removed to achieve her remission.

It is very true that the SED goes up and down in a healthy person as they react to the environment. However, at a guess, the range will normally be around 5-15 for fighting day-to-day bugs and viruses.

My CRP has only been high once in the last 10 years. Between 2006 and 2008 my SED was 40-55 and my CRP was less than 0.5 (normal). In February my SED was 30 and my doctors have given up on CRP in my case. SED indicates general inflammation in the body and is usually not seen as a good indicator for Crohn's. The real indicator for Crohn's is how well the patient is feeling. I suggest that you use the CDAI has a barometer for your Crohn's http://www.ibdjohn.com/cdai/

You can dazzle your consultant with the results, which will vary from day to day, from week to week, etc.

Your current therapy with steroids - immunosuppressants - means that you are immunocompromised and thus are susceptible to far more (secondary) infections that your healthy companions. So it might indeed have been an infection. However, you are the best judge of where your Crohn's is at and appetite loss is a key indicator of gut infection and/or Crohn's and many other things. It is all so very complicated.

It is probably no coincidence that your doctor lowered the Budesonide (and rightly so because of the growth-stunting side-effects) dose several weeks ago.
(continued...)

SED Rate
by: Lydia D.


2 of 2
I can only recommend that you keep on looking after yourself well and don't push the envelope too far. http://www.phrases.org.uk/meanings/push-the-envelope.html

Long-term cytostatics/chemotherapy (Immuran, 6-MP, Methotrexate, etc.) are used as part of steroid-sparing strategies. Most doctors refer to them as immunomodulators to disguise the long-term chemotherapy aspect of the treatment. It would be worth a shot, but, as you are well aware, they do carry some risks with them - as do all medications. I think that I can safely say that all medication and (street) drugs have an associated (future rather than immediate) cancer and other risk. Many street drugs are associated with a risk of thrombotic disease, and mental health issues (depression, schizophrenia) in later life.

I can only advise you to keep on looking after yourself well, get plenty of sleep, fresh air, watch your diet and keep on taking the multivitamin. Try any new food and natural therapies that you want to, but make sure you record the results. Lots of (natural) therapies actually cause gut problems, so be aware.

Unfortunately, Crohn's is not an illness, where you pop a few pills and then you go into remission. It is, in most cases, an ongoing struggle that lasts until the first/next operation thereafter one has a few weeks or months quiet and then it all starts over again. With ileocolonic Crohn's an operation is not a good idea because eventually there will be nothing viable left.

Sorry, I can't be the bearer of better news, but it is really important that your consultant and your family have a grasp of the reality of the disease. There is nothing worse than those around you thinking/believing that you are cured (no such thing in our case) when you feel absolutely terrible and rock bottom.

I hope that you are gearing up for camp. I may have forgotten to suggest that you take Ensure or Boost with you for those days on which your appetite is not as good.

I wish you and your family all the best.

Lydia D.

SED Rate
by: Anonymous

Hi Lydia, how have you been?
For me, over the past two or so weeks I'd say my appetite went down a bit and my stools have gotten maybe a bit looser. About last week, I went for a well visit to my gastroenterologist. He took some blood work , as usual, and told me based on my symptoms in general, I am clinically in remission. He also gave me my first dosage of Testosterone as my endocrinologist prescribed. Today, he called regarding the blood work and unfortunately it wasn't the greatest new at all. My SED Rate went up to a staggering 30+, whereas about 12 last time. However, he said, the CRP was OK so it could have just been a virus of some sort that went by unnoticed. He also set up an appointment for an extremely good endocrinologist in about two weeks for me. She will also take some blood work, an if the SED Rate is still high, he will put me on 6MP :(

Probiotic Yoghurt
by: Lydia D.


Hi there,

I would like to suggest that you eat live yoghurt every day. The small 125 ml pots are expensive, but I stretch them by making my own yoghurt. A couple of helpings of live yoghurt a day will sooth your gut, balance your gut flora and fauna, and supply you with additional protein and calcium. I think that I can guarantee that you will feel better if you do so.

Astound your mother by making your own too. The recipe is in part 2 of this posting.

You can make at least 4-7 days worth of yoghurt eaten twice a day from one portion of starter yoghurt depending on your portion size.

Enjoy!


Homemade Yoghurt Recipe
by: Lydia D.

Homemade Yoghurt

This is what you will need:

- 0.9 litre 3.5% UHT-milk* at room temperature,
- 100 ml lactobacillus plain supermarket live yoghurt at room temperature,
- 1 litre thermos flask**,
- 0.5-1.0 litre glass preserve jars and their respective lids***,
- 2-3 tbsp sodium bicarbonate for sterilising,
- Food thermometer.

*UHT-milk is a safer bet for IBD patients as it has fewer live bacteria spores in it. Do not use lactose-free milk because the bacteria need lactose to ferment to make the yoghurt,
**A thermos flask with a steel outer casing will last a lifetime
***Save peanut butter jars or other store-bought glass preserve jars

Important Preparation
Sterilise and clean the thermos flask by mixing 1-2 tbsp sodium bicarbonate with boiling water, pour into the thermos flask and leave for an hour or so. Empty out and rinse thoroughly prior to filling with plain boiling water and set aside for at least 45 minutes or longer. This ensures that the thermos flask is as clean and sterile as possible.

Making the Yoghurt
First take the starter yoghurt out of the refrigerator to warm up a bit. Place the milk in a clean glass heat-resistant jug (loosely covered with a microwave-resistant plate or similar) and heat to 60-80oC in a microwave. Check the temperature every 2 minutes. You can also eat in a pan on the stove - you could boil a little water in the pan for 20 minutes or so to steam sterilise the pan and lid prior to putting the milk in it. Allow the heated milk to cool down to 45oC in the microwave (or closed pan taken off the heat).

Empty the boiling water out of the thermos flask.

Take the 45oC milk out of the microwave and gently mix in the starter yoghurt. Pour into the thermos flask. Close the lid securely and place in a safe place for 24 hours. Do not move the thermos flask in this time.

After 24 hours

Thoroughly wash and clean the glass preserve jars and lids. Rinse off, but do not dry and place in a wet state in the microwave and microwave for 1 minute only or they will break. Do not microwave the metal lids. Leave the glass jars in the microwave with the door closed until they have cooled down and you are ready to use them.

Open the thermos flask and using the handle of a long, clean, plastic or wooden kitchen spoon or similar gently stir the yoghurt in the flask. It will still be disappointingly runny at this stage. Decant into the glass preserve jars and place in the bottom (coldest part) of the refrigerator to set. Move to the top of the refrigerator after the yoghurt has set.

Alternative Medicine
by: Lydia D.

Hi Harry,

Thank you very much for the recipe. Tumeric is very good for us as it is anti-inflammatory and olive oil has also been shown to have some positive effects in IBD. I am all for trying alternative medicine, but it should never be taken instead of prescribed medication and one's doctor should always be informed of anything adventurous.

Unfortunately, I have GERD (gastrooesophagal reflux disease) and tumeric exacerbates it. I am trying to control the reflux by diet and lifestyle changes alone - occasionally I have to admit defeat and take an Omeprazole, especially if I have sinned (doesn't happen very often), but the PPIs (proton pump ihibitors) have long-term side-effects which include bone loss and femur fractures, especially in older women. That said, with your and your aunt's permission, I would certainly like to pass the recipe on to a few Crohn's'd friends.

If you are on 3 mg Budesonide, it will take some time for the facial oedema to disappear. If you are on 6 mg, it might not go away until you reduce the dose.

I wanted to give you a couple more tips regarding camp:

First, I forgot to mention astronaut drinks, such as Boost or Ensure, which you can use as emergency sustenance. The caveat is that they must be sipped slowly over a couple of hours. I find that diluting 1:1 with (lactose-free) H-milk (H-milk is safer for us) and adding some soluble gelatin, and splitting into 4 portions placing 3 in the refrigerator makes it more palatable. It is a great growing ground for bacteria and other nastier, so anything that has been lying around for a several hours should be discarded.

Second, in the unlikely event that you lose your documents, it is a good idea to scan everything into your computer and then write yourself an e-mail(s), which you then save in draft form. In this way you can access the electronic files any time through your internet e-mail - you will find someone with a computer or internet mobile phone. You should include copies of your Health CV, insurance documents, copy of health insurance card or certificate, camp information, etc. This is additional to leaving copies with your parents, just in case they are not contactable or out of the house and do not have your documents to hand.

I hope that the end of term goes quickly for you and they you will be free to enjoy your summer.

Best wishes,

Lydia D.

Alternative Medicine
by: Anonymous

Hi Lydia, how are you doing,
I've been pretty good so far, except my puffy face hasn't yet gone down.
I know Crohn's has hit you a bit hard, so I'd like to help you for once. My aunt said that where she lives, a newscaster came out that she has Crohn's- however for her she has been in remission for years and years from just taking an alternative medicine. My aunt wrote it down and gave it to me, and I'd like to give it to you. Although I don't know if you eat these ingredients, but we'll see.
So the recipe is: Prepare hot water with lots of lemon juice.
Take one tablespoon of olive oil and mix it with one teaspoon of ground tumeric.
Mix them together very well and then eat/drink it. Immediately after, drink the glass of the lemon water.
Hope this helps you!

Harry's Summer Camp Preparation - To Do List
by: Lydia D.


I am good at to do lists, so here it is:

Harry's Summer Camp Preparation - To Do List

1) Record details of the nearest gastroenterologist,

2) Record details of the nearest hospital,

3) Record details of local CCFA* contact (for insider information),

4) Check that repeat prescriptions can be used in the particular state you are holidaying in,

5) Organise a repeat prescription for your medication (check that repeat prescriptions can be used in the particular state you are holidaying in),

6) Update your health CV with all the details required for a visit to a new doctor (see previous posts) - put it in a sealed envelope and mark "Only to be opened by the treating physician/paramedic". I place a copy in my hospital bag and update it as necessary,

7) Write and ask for information about the medical/first aid and medication storage facilities at the camp**,

8) At the same time inform the camp administrators about your food intolerances and extra protein requirements, ask if your requirements can be met,

7) Put a first aid kit*** together to take with you when you are hiking/boating, etc.

8) Put together a checklist**** of things to take to camp, including extra food items and medication, etc., this will help you pack,

9) Leave copies of all written information with your parents.


* http://www.ccfa.org/chapters/?LMI=8
** http://www.allgacamps.org/summer-camp-search-checklist.php, http://www.microsoft.com/canada/home/productivity-and-planning/articles/create-a-summer-camp-checklist.aspx
*** Include imodium, acetaminophen (we are not allowed aspirin because of risk of bleeding and gut perforation), hydrogen peroxide and alcohol wipes are important, http://camping.about.com/cs/advicetips/a/checklist06.htm http://familycampingmemories.com/first-aid-checklist-checklist-for-your-first-aid-kit/ http://www.firstaidkitbags.com/lib/outdoor-first-aid-kits.html
**** http://checklist.com/summer-camp-checklist/ http://www.microsoft.com/canada/home/productivity-and-planning/articles/create-a-summer-camp-checklist.aspx

If you are jittery about camp, the CCFA run the Oasis Camps, which you might like to read about: http://www.ccfa.org/kidsteens/camp_calendar

You don't have to give any third party details about your illness, but if you do it would be worth accompanying it with the following description: http://www.crohns.org/congress/submission01/appiv.htm


Height and weight
by: Lydia D.

1 of 2

Well done on the BMI and there is still hope for your height because the year is not yet over.

Basketball every day for about a half hour and twice a week for about 45-60 minutes would be very good.

The best way to do additional exercise is to incorporate movement into your day as a matter of routine. For example, cycle as much as you can, take stairs two at a time, take the stairs instead of the elevator, refuse rides and walk at a brisk pace everywhere, race your friends home from school, organise friendly football matches or kick abouts, while you are on the phone/drying the dishes/brushing your teeth jog up and down on the spot or do some stretching. Volunteer to do as many lifting and carting tasks around the house that you can - your mum is going to appreciate this. Remember that adequate amounts of sleep also makes you grow taller.

With respect to camp, it is usually the case that if you have food intolerances or allergies, you have to let the camp organisers know in advance. I suggest that you put a list of foods that you have identified as a problem for you together, discuss it with your parents, and then attach it to the camp application form - include suggestions for alternative food sources that you tolerate.

If the food is not good once you get there that would be a challenge. However, I suspect that it won't be too unhealthy because the chef will have worked out what growing teenagers need. It might be a bit too soon for you to start experimenting with spices and this could be an issue as chilli dishes are popular in the USA.

You might have to ask your parents for some extra pocket money so you can buy some additional protein sources: milk/soya milk, cheese, tinned chicken breast, tuna and sardines, etc, and fruit and crackers. Additionally, you could pack some tinned sardines and chicken, soya sausages, carrot or banana cake (for the first week), crackers, rusks, dried fruit (apricots, raisins), walnuts, almonds, etc., - whatever you tolerate.

I will also allow you a small square of 85% chocolate with a couple of walnuts each day as additional therapy if you tolerate them. They are very life giving with walnuts having lots of really good fats.

I suggest that you also locate the nearest gastroenterologist to the camp just in case. Stomach infection could be a problem - be very careful about washing your hands and food.
(continued...)

Height and Weight
by: Lydia D.

2 of 2

Red meat is difficult to digest and may be a problem. However, don't ruin your holiday by being too abstemious, everybody is allowed to sin occasionally and even the occasional cheese burger is of some nutritional value. I would be more concerned about fizzy (acidic) drinks, sweets and tonnes of chocolate, and alcohol, drugs and smoking. The trick is to avoid bad influences.

When travelling, you should always take your medication in the original packaging. Make sure that you take plenty with you and always carry your medication in your hand luggage (rucksack) and keep a close eye on it. I think that it would be a good idea to store it in a water-proof box, e.g. Lock and Lock (they have a good press here in Germany). This is also a good idea for a camera or any other electronic items you might carry.

I would be concerned about you leaving your medication in your bag where someone might get curious and tamper with it. There must be a nurse or first aider on duty and it might be wise to leave the bulk of your medication at the nurse's or first aid station which must have a lockable cupboard.

It might be wise to get an extra (paper) prescription, that your parents can post to you, should anything happen to your medication. However, I know that if you are crossing state lines, you might not be able to cash a prescription in. Check up on this.

Diabetics have to store their insulin in a refrigerator and the camp will have plenty of experience with dealing with children's medication I am sure. Again, this is something that you will have to discuss with your parents and the camp organisers. The more you organise upfront, the smoother your holiday will go.

With respect to taking your medication, you will have a water bottle with you and you can use the same approach that you used at your friend's house when you stayed over.

If I have any more ideas, I will let you know.

Height and Weight
by: Anonymous

Hi,
I think that when my Crohn's started to be "noticeable" my height and weight dropped on the curve which was then under the third percentile. As I've told you my weight and appetite has increased significantly over the past months, and I think my BMI is about 19.5 which is already great. I beleive my BMI was like 14 when I was diagnosed! However my height was not as successful as my weight because that 2cm that I grew, I believe was all I grew this whole year. Hopefully, in the near future as my Crohn's "quiets down" I can grow a lot.
In reference to sports, would basketball every day for about a half hour be good, and twice a week for about 45-60 minutes? Also, I get home very late, and I only have a couple of hours to get things done such as study, and do homework. What is a good excersice that takes very short?
On a different subject, the summer is coming and I plan on going to camp. How should I take my medicine etc. Also, if there isn't the healthiest foods there what should I do about that?
Thanks,
Harry

Testosterone -- No more steroids
by: Lydia D.

1 of 2

Very well done! You are obviously doing everything right - growing at a tremendous rate and beating the Crohn's.

A caveat is that the steroids must be taken down very very slowly and, as soon as you start having symptoms again, they might even need to be increased again.

Have you managed to negotiate a high protein diet (the best bits of the Sunday roast) with your parents? Keep on drinking lots of milk for your bones and teeth. Save sweets, chocolate, cakes and biscuits for treats once a week. Unless you eat carrot/banana/apricot cake fortified with soya flour and made with reduced sugar, and oil instead of butter or margarine.

I also suggest that you remove margarine from your diet and drizzle olive oil or sunflower oil on bread instead. Margarine is not good for anybody because of the trans fatty acids in it.

I would also encourage you to join a sports club or team - get in with the healthy set and not in with the druggy set (you have enough experience of drugs to date).

Karate, football, basketball, circuit training, aerobics, gymnastics, jazz/street dancing, anything that involves impact and moving in multiple directions. Impact sports stimulate bone growth. Running and cycling only condition certain muscles and should be complemented with other forms of vigorous impact exercise. Swimming is good if you are not well enough to do anything else and it is very good for the joints, but it does not impact and thus stimulate bone growth as much, although vigorous swimming will build muscle which will stimulate bone growth to a certain extent. Weight lifting should be carried out in conjunction with impact sports.

Naturally, all sporting activities should be carried out after previous consultation with your doctor and ideally under the supervision of a suitably qualified trainer.

You need calcium (milk, broccoli, spinach), magnesium (nuts, ), sunlight and lots of dietary vitamins for bone growth. 50% of the body's magnesium is found in the bones. Do not think that the vitamin tablet will provide you with all your vitamins - the tablet is only there as a top up because your (active) Crohn's does not allow you to absorb vitamins adequately (selective malabsorption).

Crohn's disease predisposes one to osteoporosis regardless of gender. And, yes, men do get osteoporosis.

A friend's husband is a keen canoeist and he had to start taking calcium and vitamin D supplements at 40 despite spending a lot of his time in the sunshine (vitamin D). Canoeing is not an impact sport and he was losing bone mass at an accelerated rate because he was not complementing his hobby with an impact sport.

http://www.ehow.com/facts_4843773_healthy-diet-teenagers.html

http://www.yalemedicalgroup.org/stw/Page.asp?PageID=STW001113
(continued...)

Testerone-- No More Steroids
by: Lydia D.

2 of 2

I know that I am harping on about protein but it is important. Even a brief illness can lead to loss of muscle mass. They need to be used every day and there will be micro-ripping, micro-tearing which the body needs to repair. The body cannot store protein to mobilise to repair working muscles and thus you need to ensure that you are eating well over the 45 g recommended for your age.

I would like at least a quarterly report on how much you have grown, how much you weigh and what your BMI is (references below). I think that it would be worth you plotting the values on graph paper - you might be able to use it as leverage to get even more of the Sunday roast.

BMI chart
http://www.bcm.edu/cnrc/bodycomp/bmiz2.html

Boys' height
http://www.teengrowth.com/growth_chart/gchart_detail.cfm?i=boysheight_3_18.gif

Boys' weight
http://www.teengrowth.com/growth_chart/gchart_detail.cfm?i=boysweight_3_18.gif

Keep on writing your diet as you are making changes to your therapy. Again, this will allow you to keep track of any side-effects or flaring of your Crohn's diease. Believe you me, it is still there - smouldering away - just waiting for the opportunity to flare again. A nutritious diet and a healthy sporty lifestyle will help in its management. Also please ensure that you take the vitamins every day - but only one, because the fat-soluble vitamins (A, D, E, K) are poisonous in high doses (Antarctic explorers -> ate seal liver which is extremely high in vitamin A -> hypervitaminosis A -> sickness and even death)

https://en.wikipedia.org/wiki/Hypervitaminosis_A#Toxicity_from_eating_liver

Wishing you and your family all the best,

Lydia D.


Testerone-- No More Steroids
by: Anonymous

Hi Lydia, how are you?
The doctor called and said my SED Rate was 13 which is good. He also said I can now get off the steroids and now only left with Pentasa and a multivitamin (and iron for low ferritin)!
He also said that the endocrinologist I went to, who said I should be given those testosterone shots, told him that the dose which the testosterone will be given is low, which will have minimal effects on the bone plates.

Testerone-- No More Steroids
by: Anonymous

Hi Lydia, how are you?
The doctor called and said my SED Rate was 13 which is good. He also said I can now get off the steroids and now only left with Pentasa and a multivitamin (and iron for low ferritin)!
He also said that the endocrinologist I went to, who said I should be given those testosterone shots, told him that the dose which the testosterone will be given is low, which will have minimal effects on the bone plates.

Growth Hormone / Testosterone NEW
by: Anonymous

1 of 2

Hi Harry,

I am pleased to hear that your recent bone analysis gave a better result - 13.5 years. A lot of the time with medical images, it is a question of interpretation and that has a lot to do with the expertise of the reader. I suspect that your endocrinologist does this sort of thing every day so you can be fairly confident about the result.

I didn't tell you that I was on HGH (human growth hormone last year) for suppression of hyper-secretion (intestinal failure). I had to inject myself in the leg and belly. I had bad side-effects because it interacts with 9 mg Budesonide (aka Entocort). It kicked in quickly but the effects wore off after a couple of days and the dose was raised. Even then the results were not consistent and we did not pursue the treatment. http://www.drugs.com/mtm/somatropin.html

Your testosterone, etc. levels are low because of the year-long Crohn's malnutrition and adrenal suppression due to the steroids. https://www.caresfoundation.org/productcart/pc/male_fertility_cah.html
http://growingtallerguide.com/index.php/591/how-to-grow-taller-during-puberty-essential-nutrition-for-teenagers/

What is very good news is that you are growing. If you work out 2 cm every 10 weeks for ease of calculation that means 10.4 cm per year. If lads stop growing at 16 (see previous posts) then you have a good chance of growing as tall as your dad if you make the right lifestyle choices (no alcohol, no smoking, no teenage diet, etc.).

I suggest that you discuss drawing up a diet plan with your parents and that they measure you each month to keep track of what is going on. Perhaps, they wouldn't mind sacrificing a doorframe for this. My parents used to write on my bedroom door frame to keep track of how fast I was growing.

I would work on growing tall with lifestyle changes: primarily diet and lots of sport and lots of sleep. One grows in one's sleep and everybody is taller in the morning than in the evening due to spinal compression when standing or sitting up. Most teenagers need to sleep a lot because of the exhausting process of growing at such a high rate.

Please read through my previous posts on diet and growing tall and do your own research. Ideally, you need to eat 5-6 smaller balanced meals throughout the day, including loads of protein. I think that it would be worth consulting a nutritionist unless your endocrinologist has given you a diet plan/sheet.

Healthy teenage diet
http://ezinearticles.com/?Healthy-Teenage-Diet&id=4327409

This is a great article on cravings. I suggest that you print it out and put it in the kitchen somewhere where everyone can see it:
http://www.naturopathyworks.com/pages/cravings.php

You might like to investigate whey (milk) protein isolate:
http://www.dailymail.co.uk/health/article-1317927/Body-builder-protein-powder-increase-life-expectancy-10-years.html
(continued...)

Growth Hormone / Testosterone NEW
by: Lydia D.

2 of 2

I don't agree with your doctors' takes on your pain. Growing pains are pains in the bones and muscles due to growth spurts in children. I never had them, but I certainly had stomach pains. Hang on to the fact that you proved that your "back" pains were kidney pains by your scientific approach. Thus they were most likely due to medication side-effects.

You will just have to adjust to that fact that sometimes doctors just say the first thing that comes into their heads. Another fact is that most doctors have no idea about the side-effects of medication and their potential severity. I have been quite amazed all along that they put you on maximum adult doses of the medication.

I am still soldiering on. I have had my day and my intestinal failure (aka short bowel syndrome) means that I will never be able to work full time again. I am just pleased that I looked after myself, did a ton of sport (cycling, fitness training - weights,etc., swimming, scuba diving), studied very hard, got a couple of science degrees and an MBA, travelled the world, learned a few languages, had really good jobs, etc., when I had the opportunity. My hobbies including watching films especially foreign language films in the original language (generally with subtitles), assiduously taking my medication and supplements, sleeping and finally trying to reach my Sofa-Nirvana each day.

Best wishes to you and your family,

Lydia D.

Growth Hormone / Testosterone
by: Anonymous

Hi Lydia,
Last week I went to the endocrinologist and he said he doesn't think I would need growth hormone. He also said since most probably Crohn's is the culprit for my short stature, since I am showing great results to the medications, I will most probably grow taller than my expected height ( 5 ft 5 1/2 in ). My mom brought along the bone-age X-Ray and he took a look and said it looks more like 12 and 1/2 years old (rather than 13), which is good. He took some blood work to check my testosterone etc. levels. They came back a bit low.

This week I had a check up with my gastoenterologist. I grew a little more than 2 cm and gained about 7 pounds since last time (which was about 7 or 8 weeks ago). My endocrinologist said I might need to take testosterone shots, however, said my gasto, this will also close my growth plates faster, and I might be able to grow even taller with out the shots then with them (in the long run). Regarding my pains, my doctor said it was mostly due to me gaining weight and getting stronger.
BTW, how are you doing?

What happens after you take medication for Crohn's Disease?
by: Lydia D.

I think that the kidney pain was due to a combination of your medication plus some dehydration due to the stress of moving around. The more you move around, the more your gut peristalses and the more fluid you lose over the bowel. The main culprit appears to be Pentasa (see below), but the drug interactions are very individual.

Your doctor should report your side-effects to the FDA. However, most doctors do not do this because of the time involved. An alternative would be for you to report it as a consumer. This will help other young people like yourself. Bear in mind, that all the references I have supplied you with are based on data gathered from adult patients and juvenile patients will react differently (more sensitively) to the medication. https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm.

Pentasa Side-effects
Renal
http://www.drugs.com/sfx/pentasa-side-effects.html

"...Renal side effects have included decreased creatinine clearance (less than 3%), interstitial nephritis, minimal change nephropathy, nephrogenic diabetes insipidus, nephrotic syndrome, elevated blood urea nitrogen and serum creatinine, and renal failure (acute and chronic). Renal impairment (including minimal change nephropathy, acute and chronic interstitial nephritis, and, rarely, renal failure) has been reported with products that contain mesalamine or are converted to mesalamine. Renal tubular dysfunction has also been reported, although a definitive causality has not been established. Interstitial nephritis has also been reported during postmarketing experience..."

http://www.drugs.com/sfx/budesonide-capsule-side-effects.html

Use the wording in the above references to fill out your Health CV (or Crohn's'd CV).

Don't forget that you can influence the course of the disease and your overall well-being by diet and lifestyle choices. Keep on writing that bullet point diary - this will help you communicate effectively with your doctors.

Pains are gone!
by: Lydia D.

That's good news! I'm very pleased for you.

A rule of thumb is that any new symptoms you develop while on medication is most likely due to the medication. The doctors do tend to play it down, but they are not the ones that have to suffer. Here in Germany, they guesstimate that some 45,000 patients per year die of side-effects.

I would like to suggest that you put Budesonide down on your health CV under the "intolerances" section and make a note that the higher doses caused specific side-effects: Medication - dose - Dates - Side-effects experienced.

I am also on 3mg Budesonide (since 2006 with a few increases in dose) and, as I mentioned previously, I do not tolerate higher doses.

I believe that I said at the very beginning of our correspondence that I thought that your Crohn's was wide-spread. This is what has caused the decrease in growth through year-long malabsorption (see Jeejeebhoy - diagram). I still think that enteral feeding would be beneficial to you (the Japanese approach to Crohn's in young people). However, it would make life difficult at school. It would mean that you could come off the steroids that also stunt growth.

A possible strategy would be to do the enteral feeding over the summer holidays. You can always say that you are on a diet. When I drink my astronaut drinks I tell people that my doctor says I have to put on some weight (which is actually the truth).

I am sure that the endocrinologist will help you. It might help if you can prepare some questions for him/her. This is the kind of information they will want to know: http://www.magicfoundation.org/www/docs/11.1176/

Thanks for the update, I appreciate it. I hope that everything continues to go well for you.

All the best,

Lydia D.

Pains are gone!
by: Anonymous

Hi Lydia,
I just wanted to give you some good news ; my pains in the morning are gone. I am not 100% sure why but I am almost certain that it is because my dose of Budesonide was lowered to only 3mg instead of first 9 then 6mg. Also, at first after my dose was lowered my face was still very puffy; even for three or four weeks, even. Just in the past week or two, I'd say, the puffiness has gone down. :)

Just wanted to keep you updated. I am also going to a great endocrinologist next week for the first time after being diag. with CD.

All the best,
Harry

What happens after you take medication for Crohn's Disease?
by: Lydia D.

I just wanted to come back to you about your bone analysis. Your current result is not too bad. I suggest that you work consequently on improving it.

The bones require calcium, magnesium, copper, zinc, manganese, vitamin C, vitamin D, vitamin K, impact sport (any sport that involves running and jumping plus some weight lifting), and some sunshine. Thus, I suggested the mini-trampoline (with a bar to hold on to if you are too ill to balance properly) in an earlier post.

Caffeine, smoking, colas and sodas, poor diet, lack of exercise and sunshine, all lead to breakdown of bone structure.

I reiterate that steroids stunt one's growth. Thus, it is necessary to work with your doctor to come off the Entocort (aka Budesonide).

You should try and modify your diet to obtain the necessary nutrients instead of adding more supplements. A multi-vitamin capsule a day plus LoSalt should be all that is necessary at the moment unless you have severe diarrhoea.

Have a look at this bodybuilder's diet:
http://www.dailymail.co.uk/femail/article-2128219/The-way-I-look-makes-hard-meet-men-UKs-biggest-female-bodybuilder-reveals-shes-single-years.html

Please read the following on healthy bones:

http://voices.yahoo.com/how-build-strong-bones-fight-osteoporosis-3837598.html
http://www.nichd.nih.gov/health/topics/bone_health.cfm
http://www.bbc.co.uk/health/treatments/healthy_living/nutrition/life_adolescence.shtml
http://www.betterbones.com/betterbody/teenagersbones.aspx
http://news.bbc.co.uk/2/hi/health/221100.stm
http://www.nutraingredients.com/Research/Magnesium-for-teenagers-may-boost-bone-health
http://www.spine-health.com/wellness/nutrition-diet-weight-loss/calcium-needed-strong-bones
http://thehealthykey.com/?p=647


What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

I suspect the fact that you are taking the medication earlier is playing a part in not having kidney pain. However, now that you don't have the stress of dashing to school and from class to class, you will be more hydrated without having to drink more than usual. Sleep also allows the body to rest and heal. When your gut is healed/healing it will allow less of the Entocort and Pentasa into the bloodstream. Both of these meds are designed to stay in the gut and work locally.

I think that it is the combination of all three factors: timing of meds, less day-to-day stress, more sleep. Unfortunately, as soon as you go back to school I think that you will find that the pains may start back up again.

Have a good Easter hols. Plan in something nice and stress free. I like films and will watch a few over the weekend. Cleaning the kitchen will probably not happen.


Back Pain
by: Anonymous

Hi Lydia,
For the past couple of days, I've been taking my meds at around 7-8pm instead of much later and so far my pains have been gone for these past days! I haven't been drinking lots and lots of water and still.. Also, right now I'm off from school so I also get to sleep longer... So now I don't know which one is causing the pains to stop?
Thanks a million again

What happens after you take medication for Crohn's Disease?
by: Lydia D.


Harry,

I would like you to contact this poster who is 13 years old. She has been put on Boost and water and is having a positive result. However, reading between the lines, she might also be on Entocort. At the moment it is not so clear what is happening with her. Perhaps, you can swap notes with her.

http://www.crohns-disease-and-stress.com/overweight-with-crohns.html

With respect to your question about height, I refer you to my first post to you on the 19th December and subsequent posts. Please read through the old posts as I still stand by them. I know that it is a lot of information to take in and that I have bombarded you with important details and references.

The most important thing is a nutritious, high vitamin and high mineral diet with no fast food and rubbishy snacks. Ideally you should aim for 6 small well-balanced meals throughout the day and never ever skip meals. You should always have a supply of Boost or Ensure in the house. Then if you are unable to eat through tiredness or pain, you can always sip Ensure in between sipping about 3-4 times as much water.

I would recommend discussing my previous posts on nutrition, together with the references supplied, with your parents and making an appointment with a nutritionist with IBD experience.

I would recommend writing down everything you eat for a couple of weeks prior to an appointment with a nutritionist or endocrinologist. This will allow you to work out how much protein, etc., you are actually eating. Without sufficient protein, carbohydrate, good fats (vegetable oils, but not margarine because of trans fatty acids), micronutrients, fibre, sport, etc., you will not grow.

Another tip is to eat slowly and chew very well. This will enable you to obtain the most out of your food.

If you have your diet sorted out, only then will you be able to concentrate on getting the Crohns and medication optimised. Then you will start to heal and grow. Healthy boys your age require at least 52 g protein/day. You will need more than this http://www.livestrong.com/article/482312-kids-protein-supplements/

Your family should be helping you by not storing any sweets, chocolates, crisps, sodas, colas, etc. in the house. If you want to eat something sweet, then stick to carrot/banana/peach/apricot cake with reduced sugar or glucose instead of sugar. Vegetable oil should be used instead of butter or lard or margarine. Ideally you should be cooking your own meals to make you more aware and to better manage this part of your life.

As mentioned previously, corticosteroids stunt growth in particular as you developed the hamster-face of Cushings disease on 9 mg Entocort. It is in your best interests to reduce the steroid by starting on the immunomodulation with 6-Mercaptopurine and reducing the steroid over 6 months.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

OK, I think that you have proven by your experiment that it is definitely your kidneys and that overnight drug clearance is not happening as it should.

It would indicate to me that your medication is overloading your kidneys or you are not drinking enough. However, I would be extremely worried about you drinking over 2.5 litres of fluids per day because the steroids already cause hypokalaemia (low potassium) and this can cause serious heart problems to heart failure and/or sudden death.

Can you guesstimate how much you drank on those days or could you keep a diary including how much you drink and how much "kidney" pain you have in the mornings. Because it does seem to be your kidneys, you are going to have to see a urologist if the pains persist. I am concerned that long-term damage will be done and this is only the beginning. I refer you to the references in my previous post.

I reiterate that pain is an indicator that something is not right despite all the doctor's tests being negative. You now need to convince the doctor that it is your kidneys and not let him fob you off again that it is early morning muscle pain.

Tomato juice is a good source of potassium as are fruits and vegetables in general. However, they can really mess up your intestine with the Crohn's. Please ask your mum to buy LoSalt or its equivalent and use sparingly in cooking and for salting meals.

You seem to be on adult doses of medication. I emphasise that I am no medical doctor. However, I am concerned about these apparent adult doses. In particular in the light of your recent bone analysis, which indicates that, because of the Crohn's, you have not developed as you should have. I think that you are receiving too much Pentasa and because of your wide-spread active Crohn's more of the drugs than usual are entering your bloodstream. Most medical doctors are not aware of this phenomenon because the data that Entocort is ~10% systemic has been obtained from healthy volunteers and not Crohn patients where over 20% of the Entocort has been found in the blood.

"...In patients with active Crohn's disease, the systemic availability after a single dose ranges from 12 to 20%. In healthy subjects the corresponding figures are 9 to 12%..."
http://www.medsafe.govt.nz/profs/datasheet/e/Entocortcap.htm

Patient Information Sheet Entocort (Budesonide)
http://www.medicines.org.uk/emc/medicine/9144

Use this voiding/micturition diary template from Pohl Boskamp to help you set up a similar document to record: fluid intake, pain, medication, vitamins and other supplements, etc.
news.eformation.de/v3/client/media/203/data/15023.pdf

I suggest that you watch this video, which emphasises what can happen through bad nutrition:
1 SUPERSIZE VS SUPERSKINNY KIDS S01E04 P1
http://www.youtube.com/watch?v=F3dSSS72Uzk&feature=plcp&context=C4e29889VDvjVQa1PpcFOjQQik1SfpHXLgbztW9GEuJ5O5hGdFMtc%3D

Bone Age
by: Anonymous

Hi,
So I thought about what you hypothesized about the pains in my back, so I tried drinking basically throughout the entire day. I was drinking, drinking, drinking, just like you told me to. The next morning I actually had no pain. The next day I wasn't able to drink that much water but still a lot of water and the next day it hurt; yet a bit less than usual. My question is so what do you think now, and also it's almojst impossible for me to constantly drink like that, so how should I deal with that? And also my doctor checked my liver, kidneys etc in a blood test; all came back okay.

On a different topic, I just recently had a bone-age because my doctor recommended one, and came back with 13 years old and I am currently 14 years 2 months. In IBD patients os this a considerably good amount or is it a little bit old? (Remember that I am still < 3rd percentile in height I think). Do you think I'll still be able to grow to a normal height? Does the average short IBD patient? Well my dad is 5'9 and my mum is 5'5, and my brothers ( none with IBD ) turned out alright so far. Also, my doctor said that the test in order to moniter growth hormone production will not come out accurate if I am not yet in remission. How do most short kids with IBD and used growth hormone turn out? And also without?
Sorry for such a long post.
Thanks so much again, all the best.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Hi Harry,

I still think that theory 2 holds for the time being, but I have some references for you wrt the side-effects of your medication. Keeping hydrated will help significantly reduce the side-effects.

Please record duration and intensity of your back pains on a daily basis. I want you to be aware, but not get too freaked out because it may or may not be a sign of early renal toxicity (nephrotoxicity - kidney damage). Any damage may be done well before the doctor detects in in his tests: http://www.ehow.com/about_5374684_kidney-function-tests.html

I am sorry that you are having to go through this. Unfortunately, you will experience the fact that most doctors do not consider medication side-effects when dealing with patients' symptoms. Indeed, it is my experience that they trivialise pain, when pain is actually the body's way of indicating that something is wrong.

You might like to print some of the references/abstracts out and take them with you next time, if your pain persists/gets worse. I think that if it were muscular, then it would last a lot longer and occur throughout the day. Try to remember to sit up straight as much as you can and not lean back or slouch to the side. You could talk to the school nurse and talk about the possibility of lying down during your breaks to rest and recover somewhat.

1) Pentasa

Acute kidney injury in a girl with ulcerative colitis and cytomegalovirus-induced focal segmental glomerular sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/21874614

Mesalazine interstitial nephritis presenting as colitis ulcerosa exacerbation.
http://www.ncbi.nlm.nih.gov/pubmed/17168131

5-Aminosalicylates and renal function in inflammatory bowel disease: a systematic review.
http://www.ncbi.nlm.nih.gov/pubmed/17243140

Renal effects of long-term treatment with 5-aminosalicylic acid
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694651/

Seek medical attention right away if any of these SEVERE side effects occur when using Pentasa
"...blood in the urine; bloody diarrhea; bloody or coffee ground-like vomit; change in the amount of urine; chest pain; dark urine;..."
http://www.drugs.com/sfx/pentasa-side-effects.html

"...Musculoskeletal

Musculoskeletal side effects have included muscle aches (21%), arthralgia (up to 5% or greater), hypertonia (5%), myalgia (up to 3%), joint disorder (2% or greater), arthritis (2%), back pain (up to 1.2%), gout, leg cramps, and rheumatoid arthritis..."
http://www.drugs.com/sfx/pentasa-side-effects.html

Pentasa and so many side effects
http://www.healingwell.com/community/default.aspx?f=17&m=1677648

What happens after you take medication for Crohn's Disease?
by: Lydia D.

2) Budesonide aka Entocort

"...Back pain; dizziness; dry mouth; headache; nausea; nervousness; stomach pain or upset; stuffy nose; throat irritation; tiredness; tremor; trouble sleeping; vomiting..."
http://www.drugs.com/sfx/budesonide-side-effects.html

"Musculoskeletal

...Musculoskeletal side effects of oral enteric-coated budesonide have included back pain and arthralgia..."
http://www.drugs.com/sfx/budesonide-side-effects.html

"Metabolic

Metabolic side effects of oral budesonide have included hypokalemia and weight increase..."
http://www.drugs.com/sfx/budesonide-side-effects.html

(Lydia comments: Hypokalemia is potassium deficiency, hence I suggest that you use LoSalt instead of table salt).

"Genitourinary

Genitourinary side effects of oral budesonide have included dysuria, increased micturition frequency, nocturia, urinary tract infection, intermenstrual bleeding, and menstrual disorder..."

Immunosuppression by Budesonide leaves you open to secondary infections. The kidneys, bladder and urethra are especially vulnerable to infection. If you do not drink enough, the small amount of urine, which is produced, stagnates and infection can enter through the urethra. Particularly when you sleep or lie down for prolonged periods of time an urethra infection can work its way up to the kidneys. The system needs to be flushed out regularly by drinking lots of fluids.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

I actually don't agree with your doctor's theory. I think that it is your kidneys - dehydration and vitamin and mineral imbalance will all play a part. However, you should still do as much sport as your current health condition permits.

If you still have some diarrhoea then I recommend that you take your vitamin tablets on a daily basis - just after breakfast. Vitamin tablets should not be taken in the evenings because they will give you a "vitamin high" and you will not sleep restfully. Supplements should not, as a rule, be taken on an empty stomach.

Concentration, or rather lack of, is a problem with any illness but especially with Crohn's. My tips would be to keep yourself hydrated and eat 5-7 small balanced meals throughout the day (don't starve yourself). You have to ensure continual input of vitamins, minerals and food. I get very ill and aggressive if I don't eat continuously throughout the day. When I go out, I always have something to drink and eat with me. I also carry glucose tablets and an astronaut drink with me. You might find that slowly sipping Ensure or Boost alternating with several sips of water throughout a bad day would help you.

I have mentioned tomato juice a couple of times. My Crohn's Prof. (consultant) swears by tomato juice. However, I have reflux (GERD - gastrooesophagal reflux disease) and tomato juice exacerbates it. I get round this by adding a couple of pinches of bicarbonate of soda to neutralise the acid. However, it still upsets my gut, so I don't drink it as often as he would like me to. It is full of potassium and magnesium, etc.

Something that happens to us all is, what I call, the Crohn's zombie state. This happens due to the medication side-effects, inflammation, plus vitamin and mineral imbalances. I have periods of absence and can lose half a day and can hardly remember what I did yesterday. The steroids cause mineral imbalances and the diarrhoea causes vitamin, mineral and other nutrient imbalances. I can only guess at what you are eating and I know how difficult it is to eat healthily when you are out of the house. I have also worked out that potassium deficiency can cause a temporary paralysis, which is reversed on eating a banana or taking a potassium supplement or using LoSalt (66% KCl, 33% NaCl).

What happens after you take medication for Crohn's Disease?
by: Lydia D.

I really recommend that you discuss your inability to concentrate with your tutors. There are provisions at every education establishment to help sick students (educational equity). For example, when I did my MBA in the UK, I had to stop after 6 months because I was so sick and I went distance learning. They were very supportive giving me an open-ended extension to complete the degree, in addition to awarding me a financial grant from their welfare fund. They also allowed me to sit my exams separately. I took a massive picnic with me and ate, drank and took my medication throughout my exams. I didn't do as well as I would have, had I not been ill, but I didn't fail.

Obviously, if you can't concentrate, then you are not going to be able to retain as much as your classmates. You need to ask your tutors for their support in order to help you to keep up with your healthy classmates. It is important that those around you don't put you under undue pressure because this will definitely make you sicker. Of course, this doesn't give you a "licence to slacken off". Just try and do the best that you can under the circumstances without making yourself sicker and learn to ask for help in a timely fashion.

I suggest that you look at the ccfa site; print out the documents for teachers; and set up a meeting with your parents and year tutor.
http://www.ccfa.org/kidsteens/?LMI=9

I don't know if this previously sent link will also help you:
http://www.crohns.org/congress/submission00/appendix4.htm

I appreciate what a horrible situation you find yourself in, but with the necessary support from others you will get through it. You can still set yourself life goals - just make sure that they have adequate in-built flexibility. I don't want you to lose heart completely at this stage of the game. It is hard, but it is possible to manage it all and pull through. It is also a good idea to build up a support network and find people to talk to.

Keep an open dialogue going with your parents and, if you feel really despondent, discuss it with them. Don't bottle things up.

Concentration
by: Anonymous

Ok.
I've already ruled out number 1 because I've slept in a couple of other beds and still had the pains. I will try to be more hydrated throughout the day and especially before night. With regard to the multi-vitamin, I do not take one every day but maybe every other day or two. Another thing I was wondering just about Crohn's disease in general is can it make you not concentrate? For example I sometimes can't concentrate during class and get "lost". I don't know because I once read on Wikipedia that this is a thing sometimes paired with Crohn's.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Well, I'm giving it to you straight - 6-Mercaptopurine is a cytostatic (chemotherapy/immunomodulating) drug. Long-term lower-dose chemotherapy is used in autoimmune diseases like rheumatoid arthritis, lupus, multiple sclerosis, Crohn's, etc. You will not lose your hair. However, I recommend that you do take a multivitamin tablet a day - only one a day because the fat-soluble vitamins (A, D, E, K) are poisonous in higher dosis. Walmarts vitamins are fine - you do not need expensive vitamin preparations. They are most likely all manufactured by the same manufacturer anyway.

Remicade and Humura, etc., are anti-tumour necrosis factor antibodies (proteins). This is why they need to be infused every 8-12 weeks - if you took them orally, they would be broken down in the gut and thus inactivated.

Your doctor should start you on the 6-Mercaptopurine while you are still taking the Entocort (aka Budesonide) and then slowly titrate the latter down over 6 months. It can take up to 6 months for the 6-MP to start to work. So you can't just stop taking the steroids and then start the chemotherapy. As mentioned previously steroids stunt growth and interfere with bone growth, etc.

The most important thing is that you have regular blood checks. My recommendation would be every two weeks for the first 4-6 weeks and then monthly thereafter. Like all cytostatics, 6-MP can cause fatigue, malaise, stomach upsets, hepatitis and pancreatitis, etc. http://www.drugs.com/sfx/mercaptopurine-side-effects.html This can manifest itself as yellow skin and yellow eyes, acute pains in the right hand side of your abdomen (usual site of the liver), etc. It is dosed per kg body weight. I was on 50 mg for my 54 kg.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

With respect to your pains, I have a few theories. First theory, assuming that your doctor is right about the origin of your bilateral lower back pain, then I think that your mattress may also be one of the culprits and not just muscle weakness and lying in one position for too long because of the medicated sleep. Mattresses should be changed every 10 years and you should buy a high quality mattress and flip it over (head to tail) every time the linen is changed to stop it wearing down in one place. Try flipping your mattress today and see if you notice a difference over the coming week. If your mattress is noticeably sinking in the middle, then this is very unhealthy and it is time to buy a new one. I suggest that you buy a medium 7 zone mattress (latex if possible - very expensive). That is what I have just bought to renew my 10-year old mattress and it has made a difference to my back pain in the morning. You should try and sleep on your side. If I remember correctly, lying on the right side aids digestion and lying on the left side minimises reflux.

My second theory: IMHO, your lower back pains sound exactly like kidney pains to me. The fact that the blood tests show that your kidneys are fine is irrelevant. You will learn this as you get to grips with your disease. The blood tends to homeostasis (a steady state) and early-stage organ dysfunction is nearly always detected by the patients years before the doctors detect it using their standard "tools of the trade". Thus, patients frequently report that it took years to get a diagnosis.

I suspect that you may have a bit of "grit" (crystallised breakdown products - usually calcium oxalate and some uric acid) in your kidneys. These act like seed crystals for kidney stones, which, believe you me, you do not want. http://en.wikipedia.org/wiki/Kidney_stone

What happens after you take medication for Crohn's Disease?
by: Lydia D.

This fine "grit" (for want of a better word) is settling in your kidneys overnight. Your big breath in the morning, pushes down on the abdominal contents and causes the momentary pain, but also helps the grit clear from the kidneys and move down to the bladder. This would suggest to me that you are not properly hydrated when you go to bed. I suggest that you drink a glass of water immediately prior to going to bed and another one as soon as you get up. In addition, please ensure that you are hydrated throughout the day - drink, drink, drink. This is especially important for you because of the medication and the risk of thrombosis due to dehydration due to the disease. In addition, your body is trying to do a lot of things at the moment. It is trying to grow, enter puberty (slowed down currently by the disease and the steroids), get rid of the breakdown products of food and the meds., meet the demands of every day life, etc. Water is required for all these processes.

You will not get hydrated on colas and sodas. Please try and eliminate them from your diet. Drink a glass of diluted (1:1) fruit juice in the morning with breakfast if you tolerate it. Tomato juice is an excellent source of minerals, but you might not tolerate it. Still water is the best. I drink the German tap water, soups, limit (diluted) fruit juice to breakfast, drink my astronaut drinks (like Boost or Ensure), loads of water, lactose-free milk, banana smoothies.

You can reduce the risk of kidney stones (a risk associated with Crohn's) by eating low oxalate foods. Check your food diary for foods that are high in oxalate and eliminate them temporarily from your diet. Do not eliminate any calcium from your diet. You need to eat/drink loads of calcium-rich foods for your bones. The steroids can cause osteoporosis if you are not getting enough calcium. http://courses.washington.edu/bonephys/hypercalU/oxalate.html http://www.buzzle.com/articles/high-oxalate-foods.html

Ask your mum to cook low salt and low oxalate meals for the next few weeks to see whether or not it makes any difference. It also means that you have to give up take-aways, fast food, chips and crisps, etc. I also suggest that she buys some LoSalt http://www.losalt.com/losaltintheus.html and uses it sparingly instead of table salt.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

My third theory would be vitamin and mineral deficiency. If you are not already taking a multivitamin tablet then it will not harm you to do so. You need to keep your diet as natural as possible to reduce the toxic overload on your system. No packet foods - everything fresh from the butchers, fish market and grocers. Try and eliminate all sodium monoglutamate, artificial flavourings and colourings, in addition to sodas from your diet and you will immediately start to eat healthier.

You can try drinking a magnesium-rich drink prior to going to bed and see if that helps you. I think that tomato juice might be a bit lethal. However, a banana smoothie with yoghurt and lemon juice might do the trick.

Try recording your CDAI and your "back" pains for the next few weeks. http://www.ibdjohn.com/cdai/

I suggest that you plot a graph of pain (X) against time (Y) and record when you made any changes, e.g. drink prior to bedtime, start of low-oxalate diet, multivitamin tablet, etc. Then you can show your doctor what you have done. Doctors love graphs especially if they are in colour.

Well, it looks as though you have another load of homework from me. Good luck with that. Unfortunately, we have to do a lot of the research and testing work ourselves because the doctors nowadays do not have the time to get to the root cause of everything. I hope that one or all of the above helps.

P.S. Well done for using the comparative pain scale - it makes it a lot easier for me to "visualise" your pain. I also know how disturbing it can be to experience pain of an unknown origin.

6MP and Pains
by: Anonymous

Hi again.
My doctor said at the last appointment that he'd like to stop the budesonide soon (to stop the use of the steroids) He said he'd like to use 6MP instead. Is is tolerated well? Are there lots of side-affects? And also this drug is an immuno-suppressant right? And also is 6MP like alot of these strong drugs people say they take like Humira, Remicade, etc.?

On another note, ever since I started taking the budesonide/Pentasa, when I woke up in the morning and took a breath, I would feel pain in my lower back on the left and right. This pain would be like a 2 or 3 or the pain scale and it goes away after about 30 seconds/ a couple of breaths. I asked my doctor about this and he said this was not the kidneys and he checked the kidneys in the blood test he took. He said this was most likely muscle pain and I should do some excercise before I go to bed. I have been working out my abs for a strong core like you and he recommended and also some planks for my back. I have been doing this for a little while but still the pains in the morning. Do you know what else this can be, or how I can get rid of it? And should I let my doctor know the pains are still there?

6MP and Pains
by: Anonymous

Hi again.
My doctor said at the last appointment that he'd like to stop the budesonide soon (to stop the use of the steroids) He said he'd like to use 6MP instead. Is is tolerated well? Are there lots of side-affects? And also this drug is an immuno-suppressant right? And also is 6MP like alot of these strong drugs people say they take like Humira, Remicade, etc.?

On another note, ever since I started taking the budesonide/Pentasa, when I woke up in the morning and took a breath, I would feel pain in my lower back on the left and right. This pain would be like a 2 or 3 or the pain scale and it goes away after about 30 seconds/ a couple of breaths. I asked my doctor about this and he said this was not the kidneys and he checked the kidneys in the blood test he took. He said this was most likely muscle pain and I should do some excercise before I go to bed. I have been working out my abs for a strong core like you and he recommended and also some planks for my back. I have been doing this for a little while but still the pains in the morning. Do you know what else this can be, or how I can get rid of it? And should I let my doctor know the pains are still there?

Ty
by: Anonymous

Thanks

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Harry,

I just wanted to bring these videos to your attention. They will make you understand why a healthy lifestyle is so important for everybody.

I hope that everything is still going well for you.

Epigenetics
http://www.youtube.com/watch?v=kp1bZEUgqVI
http://www.youtube.com/watch?v=Xjq5eEslJhw&feature=related

The Epigenetics of Identical Twins
http://www.youtube.com/watch?v=AV8FM_d1Leo

The Ghost in Your Gene
http://www.youtube.com/watch?v=toRIkRa1fYU&feature=related


What happens after you take medication for Crohn's Disease?
by: Lydia D.


That's a good idea - it is the maximum effective dose for an adult, so it is a pretty high dose for you.

I think that you will feel better for it - you should sleep better anyway. I would encourage you to keep on writing the e-diary. This is particularly important if you experience a worsening of diarrhoea, which would most likely indicate that the Crohn's was flaring again. If you still have the numbness in your leg(s), it should resolve as you reduce the dose. All of this is worth writing down for future reference.

Keep fighting the good fight. Please let your mum know if you feel as though you are getting down or developing depression. It is a very normal response to the shock of diagnosis and one can go into post traumatic shock.

I would encourage you to also contact young people of your own age with Crohn's. You can compare notes and help each other ride the Crohn's waves.

The good news is that you responded well to the medication. There are some patients that do not tolerate that standard medication and that makes therapy very difficult.

All the best.

Lowered Dose
by: Anonymous

Hi,
So I went to my dr today and he said because of the puffy face he will reduce the Budesonide dosage to just 6mg a day.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

It is true that Crohn's can affect fertility but most Crohn's patients have no difficulties conceiving provided they are healthy and not flaring.

Trying to conceive when you are moderately to severely ill is also probably not going to work. Female Crohn's patients in a severe flare frequently stop having their periods as the body shuts down the non-essential organs to divert resources to fighting the disease. Male Crohn's patients will probably not produce sufficient viable sperm to be able to conceive when in a moderate to severe flare.

You should not attempt to conceive when on certain medication, for example, the cytostatics: Azathioprine (Imuran), 6-Mercaptopurine (6-MP or Purinethol), Methotrexate, etc. These medications when taken by either the man or the woman can cause birth defects. You should always discuss plans to conceive with your gastroenterologist.

You can perhaps console yourself with the fact that a lot of healthy people have difficulties conceiving. I attribute a lot of this to lifestyle issues, for example, the increased number of obese parents and, if they are not obese, extremely unhealthy diets, alcohol and cigarettes.

I emphasis again the need for an extremely healthy lifestyle: an excellent "non-teenage" diet, lots of sport (obviously when you are fit enough) and also enough relaxation and sleep. You should forget alcohol (growth stunting and interacts adversely with most medication, reduces fertility), cigarettes (growth stunting, cancer causing, reduce fertility), street drugs (increase risk of strokes, sudden death syndrome, depression - even in teenagers), fast food/colas/sodas/sweets (allowed ever so occasionally as a treat in the holiday season).

There is a real danger of passing the disease on to your children. The possibility of a child of yours having Crohn's disease will be between 8 and 33% - so either a one in twelve or, a one in three chance.

I suggest that you read Imao's "The Mourning Process in Chronic Disease" and discuss it with your parents. You are going to go through these periods where you worry and get anxious, perhaps even depressed - it is very normal and part of the rich tapestry of Crohn's. I can assure you that you will always bounce back.

I think that it is extremely beneficial that you read about your disease and learn all of these facts. This will make any future decisions easier for you.

Fertility?
by: Anonymous

Hi again,
So I've read all over the internet how Crohn's can affect a man's ability to well, uhm, conceive. Does this mean men with Crohn's cannot have a child or just like "low sperm count" or something? (I know I cant as of now, but thats maybe just because my body is a little behind my age) I am really worried about this.
Thanks once again!

Fertility?
by: Anonymous

Hi.
So I've always seen on the internet about how Crohn's can affect a man's ability to well, uhm, conceive. Is this true? What does this excactly mean? I will be able to have children, right? I don't think I can right now, but maybe that's because my body is slower than my age. I am really nervous about this. Thanks once more

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Tell your mum that it is my pleasure to be able to help you and it is very nice to receive such positive feedback. I still remember how lost and alone I was on diagnosis and it is nice to be useful.

With respect to natural remedies/supplements, they tend to be overpriced, promise a lot and most of them will not do you any good at all.

It is worth knowing that a lot of supplements have gastrointestinal side-effects. For example, aloe vera can cause/exacerbate diarrhoea and it is used as a laxative: http://nccam.nih.gov/health/aloevera

Iron supplements can cause cramping:
http://www.livestrong.com/article/294722-the-gastrointestinal-side-effects-of-dietary-iron-supplements/

The FDA (Food and Drug Administration) have issued a warning about fish oil tablets and have put a cap of 3g/day because of the mercury content. http://www.livestrong.com/article/224807-what-do-fish-oil-capsules-do-for-the-body/
http://ezinearticles.com/?PCBs-and-Mercury-in-Fish-Oil-Capsules:-A-Warning&id=6839141

The actor, Jeremy Piven, ate sushi four times a week for 20 years and he ended up with mercury poisoning. http://voices.yahoo.com/jeremy-pivens-mercury-poisoning-know-2370322.html

Crohn's patients need to be on a good diet for all of their lives; they need to keep hydrated to prevent thrombosis; they need to do lots of sport to make sure they build themselves up and strengthen their immune systems.

Instead of spending your money on fish oil capsules, I recommend eating a small portion of oily fish twice a week. http://en.wikipedia.org/wiki/Oily_fish

Read up on supplements here: http://ods.od.nih.gov/
http://www.fda.gov/Food/DietarySupplements/ConsumerInformation/ucm110417.htm
http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

Red meat is difficult to digest, so I suggest restricting that to once a week and eating chicken, turkey, tofu, etc., as protein sources instead. Milk and cheese are full of protein. Avoid soft ripened, and unpasteurised cheeses - they can be full of fungi and bacteria and are bad for us. Young cheeses, like pasteurised cottage cheese are OK.

Herbs have loads of vitamins in them and are great for pepping up dishes. I love this Pumpkin risotto with crispy sage recipe: http://www.bbc.co.uk/food/recipes/pumpkinrisottowithcr_13723

continued.......

What happens after you take medication for Crohn's Disease?
by: Lydia D.

That said, it would be beneficial you taking a sublingual multivitamin tablet when you have diarrhoea. If your gut is working OK and you are eating healthily, then this will not be beneficial.

I am not a nutritionist, but the diets for you would ideally be a combination of the Mediterranean diet: http://en.wikipedia.org/wiki/Mediterranean_diet and the anti-inflammatory diet: http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

I suggest that you avoid all artificial food additives, colourings, flavour enhancers, aromas, etc.

Olive oil is indicated to be good for Crohn's patients. However, please make sure that you do not cook with extra virgin olive oil. This will cause unhealthy trans fats to form. Use this oil only for drizzling over salads and dipping bread into. The normal (non-virgin) olive oil may be used for light frying. For deep pan frying you need to use, such as sunflower or peanut oil.

I don't use margarine (trans fatty acids) or butter (well, perhaps very occasionally), but instead drizzle olive oil on my bread - even with jam. I make oil pastry, use oil instead of butter when I bake cakes, etc. I cook from scratch and even made some bread yesterday (2/3 finely ground wholewheat flour to 1/3 plain flour).

The caveat is that you have to determine what works for you and you will find, for example, that on one day you can tolerate salad and on the next day you can't.

Most people start taking supplements because they have developed a disease after abusing themselves for many years (alcohol, cigs, streetdrugs, no sport) and they think that pills are going to be a quick fix. Unfortunately, it doesn't work like that. The secret is to look after yourself, eat well, do lots of sport, etc.

Naturally, for someone that has had multiple operations, like myself, then some supplements are necessary. However, I need infusions and injections because sections of my small intestine, including the terminal ileum, have been removed and this means that I cannot absorb vitamin B12 and the fat-soluble vitamins (A, D, E, K) at all. Supplementing with especially vitamin B-complex is recommended for all old people and generally women over 50 need to take calcium and vitamin D.

There is also research that indicates that certain medication causes malabsorption/prevents the uptake of certain micronutrients. So you have to keep an eye on that and you should have your blood levels of minerals and, perhaps, vitamins B12 and D checked periodically.

How your medicine could be draining vital nutrients from your body by Suzy Cohen
http://www.dailymail.co.uk/health/article-1395028/How-medicine-draining-vital-nutrients-body.html

Suzy Cohen's book
http://www.amazon.com/Drug-Muggers-Medications-Essential-Nutrients--/dp/1605294160/ref=sr_1_2?ie=UTF8&qid=1329845050&sr=8-2

Alternative Medine?
by: Anonymous

Thank You again,
So my mom just wanted to know your opinion on natural remedies and things like that. Like Omega-3, fish oils and certain diets etc. My mom also wanted to thank you so much for helping me with everything and giving me so much info I couldn't find on my own! Thanks!!

What happens after you take medication for Crohn's Disease?
by: Lydia D.


Great news! I am pleased to hear that your stay-over went well. I think it is wise that you don't tell absolutely everybody about your disease and medication regime. Healthy people cannot understand what it is all about.

When I was first diagnosed, some of my so-called friends started saying that they thought they may have Crohn's every time they had a spot of diarrhoea. Anyway that got boring, so now I only tell on a "need to know" basis.

The puffy face is most likely due to a combination of putting on weight because of the intestine absorbing more nutrients as it heals plus possible side-effects of the medication. You are not used to having such a full face but this is the new you. I am sure that you look healthier because of it.

Budesonide (aka Entocort) does have side-effects and may cause retention of water (hamster-like face of Cushing's syndrome). However, the medication is less harmful than Prednisolone because only about 10% is absorbed into the blood (it is 10% systemic) - the rest stays in the intestine and acts locally. With Prednisolone approximately 90% is taken up into the blood stream (it is 90% systemic) and this steroid causes patients a lot of anguish with its numerous side-effects.

Caveat: I am very sensitive to medication and was put on 9 mg Budesonide last year. I ended up with a type of narcolepsy and was only able to sleep all day. So, we reduced the dose to 6 mg. After a few days I woke up one day with the urge (not the wish) to kill myself. As my dog hadn't died and my husband hadn't left me, I was certain that it was due to the medication. I rang my doctor up, who was concerned (he was just about to set off on holiday) - he wanted to send me to a walk-in psychiatric clinic. However, I reduced the dose to 3 mg and was then as right as rain.

So, please be aware that the medication can cause apparent mental health problems (a sort of chemical reprogramming) that can be resolved by reducing the dose. I spoke to my Prof. last week and he said that it is not well documented but it happens. The majority of doctors think that Budesonide does not have any side-effects, but we know better. I suspect that what I experienced is classed as psychosis under CNS here: http://www.drugs.com/ppa/budesonide.html

Puffy-ish Face??
by: Anonymous

Hi,
So the friends house went nicely( with your tips!). Just recently I realised that I am gaining weight (finally) but just my face seems a little fattish/ puffy. I am not sure if this is from the Budesonide or just because I am gaining a little bit of weight? Before taking the medicine my face was extremely skinny, so maybe it's just getting a little fatter? Just wanted to hear your thoughts. Its always nice to hear what you say! Thanks!!

What happens after you take medication for Crohn's Disease?
by: Lydia D.


I am pleased to hear that you are feeling better - keep on taking the meds.

I recommend that you buy a small pill box that you can decant a day's worth of pills in and stick in your pocket. You could use a really small lock bag, if they exist. There is naturally a problem with this because if the medication falls out of your pocket then a small child may think that they are sweeties when they are not. So you have to be careful. I recommend that you buy a small padlock for your medicine bag if there are small children in the house.

Prior to or after a meal, just say that you have to wash your hands and take the tablets in the bathroom. There are lots of diabetics that have the same strategy. Naturally, it is a bit easier for women with their handbags, but James Bond manages to carry all sorts around with him without anyone else finding out - until they die that is.

You could also always carry Tic-Tacs around with you and then people would get used to the sound of rattling in your pockets. You can offer them around, but I would be wary about eating too much of them yourself.
Good luck and enjoy your break with your friend.

Social
by: Anonymous

Hi, I am feeling good. I just wanted to ask how I should take my medications while at a friends house or something. I don't really want him to know I have Crohn's and I'm staying by him for like all meals and all. So how excactly do I take 12 pills with food wirhout my friend realising? Thanks again.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

I am pleased to hear that your inflammatory parameters have been lowered.

I don't agree with your doctor about the numbness being fine, but I am not a doctor. I have long been of the opinion that when doctors say "This will not hurt" or similar, that it actually means that it will not hurt the doctor. Keep an eye on your symptoms including the numbness, please and make a daily record of severity. Remember that you can always get a second opinion.

If it gets worse then you should go back to him. Numbness can be a sign of neuropathy (nerve damage). I reiterate that you should keep hydrated to make sure that your liver and kidneys are able to do their thing. You could try gently massage in an upward direction (to the heart) and see if that improves circulation and feeling in the area.

Pentasa can also cause peripheral neuropathy.
http://doublecheckmd.com/EffectsDetail.do?dname=Pentasa&sid=2201&eid=2089

Budesonide aka Entocort
http://doublecheckmd.com/EffectsDetail.do?dname=Entocort&sid=33422&eid=2089

Budesonide can also cause hypokalaemia (low potassium), so don't forget the bananas and LoSalt http://www.losalt.com/losaltintheus.html

I suppose you can always sue the pants off him, if the numbness proves to be harmful. This is also where the daily diary keeping comes into its own.


Sed Rate!! :)
by: Anonymous

Hi, doctor said the numbness is fine. He took another blood test to look at my SED Rate and came back with an incredible 13!! It was 35 when I was originally diagnosed! I guess the medicine is kicking in and working!!

What happens after you take medication for Crohn's Disease?
by: Lydia D.

I agree that you should discuss this with your doctor and you must be very careful about keeping hydrated.

If you do not drink enough your liver and kidneys will not be able to remove medicine and its breakdown products plus the usual metabolic by-products from the body. This will lead to a build up of toxins in the body and eventually signs of poisoning. I suggest that you always have something to drink with you and that you drink it.

In addition, IBD patients are at higher risk of strokes than that healthy population. Teenagers are not exempt here. I know of someone who had a stroke at age 19. Dehydration can cause blood clots to form in the blood.

Magnesium and potassium are very important for muscle function. Bananas are a very good source of both of these minerals. Try drinking a banana smoothie with a half of lemon squeezed into it every morning with breakfast - add water and yoghurt and a little salt. You might persuade your mum to buy LoSalt (also has potassium in it).

You might find that doctors are not aware of these particular side-effects of Budesonide. I suggest that you print out and highlight this area: "...tingling or numbness of the arms or legs..." http://www.drugs.com/sfx/budesonide-side-effects.html

Budesonide is the prefered steroid because it is only about 10% systemic, i.e. only 10% enters the blood stream and the rest stays locally in the gut. Most doctors appear to think that this means that it doesn't have any side-effects. I get very annoyed when they say that to me.

Prednisolone, by comparison, is over 90% systemic with only about 5-10% remaining in the gut. On this steroid, most patients put on masses of weight and suffer very severe side-effects.

When you write your diary, indicate how your disease and symptoms are affecting your every day life, e.g. getting up, going to school, hobbies, interacting with others, etc. (see previous posts). This helps the doctor to understand how ill you are. Normally IBD patients look perfectly well and it is difficult for healthy people to relate an apparently healthy appearance to any sort of illness. Many people think that we are putting it on.

Keep a record of what you spoke to the doctor about and plan for your appointment by writing bullet points for items you need to discuss with him/her. File all these together with any print outs that you may have shown them.

The key is to find the right dose and right medication combination for you without reducing your quality of life further through side-effects.

Good luck with your doc.

Leg Pain
by: Anonymous

Hi, so recently I've been having this weird feeling in my leg.. I wouldn't call it pain. It's something that feels like a numb-like sensation. I read somewhere on the web that this is a SEVERE side affect of the Budesonide I am taking. I am going to the doctor this week so I'll mention this to him.

Leg Pain
by: Anonymous

Hi, so recently I've been having this weird feeling in my leg.. I wouldn't call it pain. It's something that feels like a numb-like sensation. I read somewhere on the web that this is a SEVERE side affect of the Budesonide I am taking. I am going to the doctor this week so I'll mention this to him.

Ty
by: Anonymous

Ok thanks! No they are not floating and they are formed and normal color. I think it was just something random for like time. I heard this has to do with not being hydrated enough.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

I forgot to comment on the greenish tinge. This might be due to bile in the stool. Bile varies from yellow to green to brown in colour depending on how long it has been stored in the gall bladder and what it is mixed with.

If you have disease at the terminal ileum, where most of the bile that entered the duodenum from the gall bladder is reaborbed, more bile will enter the colon. This also applies if you have severe diarrhoea. However, food can colour the stool as well and, unfortunately as we IBDers have to spend a lot of time examining such things we become experts in such matters.

If the stool floats, this is called fatty stool and is due to fat and bile not being absorbed at the terminal ileum. In this case you do not have diarrhoea, but steatorrhoea. This condition can result in deficiency of the fat-soluble vitamins (A, D, E, K) and lots of other things.

Write everything down in your diary.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Pleased to hear that you are doing well.

The white dots are, as you thought, due to your 5-ASA (5-aminosalicylic acid).

The tiny beads of medication inside the Pentasa capsules break open and the contents spill out in the intestine. Many patients notice the presence of the beads in the stool - the casings are made of the biopolymer ethylcellulose and don't break down immediately. Hence the so-called "delayed release" mechanism.

The presence of medication in the stool is not a bad sign because you are taking grams of the stuff and it means that there is some active medication reaching the colon.

Pentasa is normally only effective from the upper gut to the first part of the colon: http://www.drugs.com/pro/pentasa.html

The slight pressure below your right rib is not as easy to identify. This is where your patient diary comes into its own. Keep an eye on the irritated area - use the comparative pain scale. It might be just be due to you lying on your right hand side for protracted periods - this happens when one is ill. Normally, we move a lot in our sleep, but when one is ill and medicated this movement can be significantly reduced. Try and go to sleep lying on your left side and when you lie on the sofa do the same to see whether or not this makes a difference.

If you have discomfort/pain you may change your posture to relieve the discomfort. This can lead to discomfort/pain at a remote site (referred pain). For example, patients with abdominal pain can end up with bad back pain due to a change of posture (bending forward to relieve abdo pain puts pressure on the back). So, watch your posture - keep your back straight.

Again I recommend putting a mini-trampoline (for indoors) and some weights (hand, ankle, wrist) on your birthday wishlist.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

However, now that I have fobbed you off with something harmless, you are right, it may be due to your medication or tightness due to healing of your insides, etc. Please keep an eye on the whites of your eyes and your skin colour (to check for jaundice - ask your parents to look at you and check you out a couple of times a day if they don't do so already). If you start having pain on the RHS (right hand side) and/or you start to look a little yellow then consult your doctor immediately.

Drug-induced hepatitis (inflammation of the liver - "-itis" indicating inflammation) can happen to any patient on most medication (or street drugs). Every patient on medication should know this. It does not happen often, however, it indicates that the dose must be reduced or the drug stopped to allow the liver to recover. The liver is important because inter alia it removes toxins from the body.

The best ways to monitor the liver, are to measure the level of liver enzymes in the blood http://en.wikipedia.org/wiki/Liver_function_tests and ultrasound will show up any parenchyma damage http://en.wikipedia.org/wiki/Parenchyma if present.

As usual I am being completely honest with you. However, I don't want you to freak out about the liver thing. Write everything down in a daily electronic diary - you can use a draft e-mail to log your discomfort and any pain plus anything else you notice. You only need 10 minutes or so each day to log everything.

Your doctor should be dosing you on a mg/kg body weight basis. However, there are individuals who react more sensitively to medication and these patients require lower doses than usual.

Both Pentasa and Budesonide can cause liver problems with or without jaundice:
http://www.drugs.com/sfx/pentasa-side-effects.html
http://www.drugs.com/mtm/budesonide.html

Stool
by: Harry

Hi. I am doing well. I am just wondering. After I took the medicine, I am noticing white dots on my stool. This is NOT mucous. They are TINY. They look just like the medicine inside capsules if you would break them open. My stool also has a little of a greenish tinge to it. Another little problem I am encountering is right below my right rib, I feel a very very very mild "pushing down" sort of feeling. Can this , God forbid, be a stricture or something? Because it's not pain, just a mildly uncomfortableness. Can this just be bec of the crohn's or and the medine? Again, I appreciate it a lot.

What happens after you take medication for Crohn's Disease?
by: Lydia D.


If you are feeling somewhat better, then it is definitely due to the medication. They do work. I think that it is unlikely that you are going into spontaneous remission. I reiterate that mild to moderate disease is a lot easier to get under control. Just make sure that you keep on taking the medication and don't get complacent as you start to feel better.

With respect to ileostomies/colostomies, I really don't know what percentage of patients end up with one. The stats are that 66-75% of Crohn's patients will eventually need surgery of some kind, but there is no breakdown of the type of surgeries. http://www.ccfa.org/info/surgery/surgerycd

I have had 9 Crohn's-related surgeries since the diagnosis nearly 20 years ago. However, I am in the minority and there are others who have far worse fates than I. There is a lady with Crohn's who had over 20 operations, spent 2 years in hospital on total parenteral nutrition and then had 8 organs transplanted in Berlin, Germany. www.wjgnet.com/1007-9327/12/4431.pdf Now that frightens me.

I have 2 friends who have Crohn's and neither has an ostomy. However, I do and I needed one on diagnosis when I was 32 because no one believed that I was ill and the disease was fulminant and the medication did not work. Believe you me I was on my knees begging for the operation. It saved my life. If I had refused it, I would not be writing to you here.

Getting back to yourself, don't forget that nowadays there is a lot more clinical information available, the doctors have more expertise and access to better medication means better therapies. You have mild to moderate disease that appears to be responding well to medical treatment. You now have to take good care of yourself, eat well, do lots of sport, be a compliant patient, and avoid Crohn's triggers (see earlier posts).

It is good that you know what may happen, but I suggest that you try to avoid unnecessarily worrying about what may not happen to you. Read up about the disease, keep the dialogue going with your doctors, family, etc., live your life on a day to day basis and above all enjoy yourself. Somebody wrote that over 90% of what we worry about never actually happens anyway. I think that it was Dale Carnegie.

I hope that you do well in your exams. Good luck.



?
by: Anonymous

By the way, I am freakin out because everyone on the internet is saying..."oh yeah i had this amount of my indides removed, and I have this ileostomy..." I am freaking out because I don't want either of these. What is the percentage of people who need surgury and or an ileostomy. I REALLY don't want one of those:(((

Crohn's Disease
by: Anonymous

Hey, sorry I haven't posted in a while (I am studying for my midterms). I actually think the medicine is starting to kick in and working!! I already feel that I have more appetite! Can this actually happen, or is it phsycological?

What happens after you take medication for Crohn's Disease?
by: Lydia D.


Sorry, I used ping out of context, I did mean post here.

Your doctor has said to you that you don't need to go on a special diet, but in the same breath said that you should avoid high fibre. So, he has put you on a special diet.

The Japanese put children/young patients on enteral feeding and swear by its (short-lived) success. Unfortunately, most young people don't want to walk around with a feeding tube up their noses and 500 ml liquid feed in their backpacks and it is not done so automatically outside of Japan.

I suggest that you join Medscape (portal for the continuous medical education for doctors), where you can log in as a patient (Consumer/Other) and have access to everything that your doctors should know. There does not appear to be a lower age limit in their Terms of Use. There are some great articles on the site.

Existing Dietary Guidelines for Crohn's Disease and Ulcerative Colitis
http://www.medscape.com/viewarticle/744684

Crohn's Disease Diet Plan
http://www.webmd.com/ibd-crohns-disease/crohns-disease/creating-a-crohns-disease-diet-plan

Crohn's Disease - Dietary Considerations
http://www.essortment.com/crohns-disease---dietary-considerations-26522.html

Nutritional Considerations in Crohn's Disease
http://www.danoneinstitute.org/objective_nutrition_newsletter/on62.php

Nutrition Tips for Inflammatory Bowel Disease
http://www.ucsfhealth.org/education/nutrition_tips_for_inflammatory_bowel_disease/index.html

Existing dietary guidelines for Crohn's disease and ulcerative colitis.
http://www.ncbi.nlm.nih.gov/pubmed/21651358

Here are hundreds of links, including Crohn's in teenagers and a guide for parents:
http://www.nlm.nih.gov/medlineplus/crohnsdisease.html

Thanks
by: Anonymous

Thanks, I dpn't have "ping" or whatever, so in the future can I just post questions on the forum and wait a couple of minutes till you see it? Thanks a lot!!

What happens after you take medication for Crohn's Disease?
by: Lydia D.


The ESR (erythrocyte sedimentation rate) is a general measure of inflammation in the body, but there is a latency in inflammation tests. This means that inflammation does not show up in the form of increased ESR immediately, there is a lag phase of hours or days depending on the individual and the extent and localisation of the inflammation.

The ESR does not a measure of Crohn's activity. You can have active Crohn's inflammation, ulceration, abscesses, etc., in the body and a low ESR. Unfortunately, most doctors set great store on the ESR and CRP tests as a measure of inflammatory parameters, forgetting that a negative result can still mean that even severe gut inflammation can be present.

I can supply you with several scientific references for this phenomenon wrt Crohn's.

I was a weedy child, but I managed to grow to average height for a girl. I have always been very thin and I do attribute this to smouldering Crohn's throughout my childhood and teenage years. I did not feel well even as a child and never enjoyed parties or energetic activities.

If I was a betting woman, I would put my money on you having had smouldering Crohn's for a few years (relapsing and remitting, but never severe enough to make you ill - perhapy, just somewhat tired).

You can only guess at how tall you should (eventually) be. Ideally, you would get to be as tall as your dad. However, genes don't always work that way because it depends on which genes you have also inherited from your mum's side of the family and your dad might also have passed some "short" genes on to you.

Unfortunately, you can't sue your parents for making you too short or giving you diseases. I have spoken to a lawyer about this and was informed that you would have to prove negligent or wilful (they did it on purpose) action. You can imagine what would happen if it would be possible - nobody would dare to have children or the continuation of the human race world would be dictated by eugenics and someone has already (unsuccessfully) attempted that in the past.

I would encourage you to do your own research on how to grow tall with a healthy lifestyle.

Good luck with the meds. Ping me if you need to talk in the future. Caveat: I don't read the forum every day, so you might have to wait.

Crohn's Disease
by: Anonymous

Thanks for not getting annoyed by my questions. You are right, I didn't start off with the 6MP but rather Pentasa and Bumesodine. Another thing I am curious about is that I've seen an endocrinologist, maybe a month previous to the gastroenterologist. Now I see that one of the blood tests she took was a sedimentation test ( for inflammation in the body ) and it came back normal (16 I beleive) and yet about a month later when I went to the gastroenterologist my SED Rate was 35 or 36. I am afraid that this Crohn's is REALLY recent and I was just always short and skinny?

What happens after you take medication for Crohn's Disease?
by: Lydia D.

No, I never get annoyed by intelligent questions. You are a bright and articulate young man who is approaching this difficult crossroads in his life in a very calm and collected, and intelligent manner.

I agree with your doctor that you should not worry unduly about your Crohn's. This is naturally based on the assumption that your doctors are giving you the best possible therapy, are taking you seriously, listening to your concerns and acting on them as appropriate.

Be aware that nearly all doctors have little to no knowledge about the effect of nutrition on Crohn's. This was not part of, or only a negligible part of, their medical syllabus. Thus, the field of nutrition is dealt with by nutritionists who have years of focussed study in this area.

I have had nearly 20 years of dealing with doctors wrt the Crohn's diagnosis. Some are great, some are very mediocre and some are downright dangerous. There are very few allrounders. In the end, it is the individual patient that should become their own expert and look after their own health.

If you want to grow as tall as you can with Crohn's, then you definitely need to focus on diet, as we have previously discussed. So, I, as an expert patient with a focus on (adult) nutrition, do not agree with your doctor here. You need to talk to someone specialised in paediatric nutrition with a focus on inflammatory bowel disease in teenagers.

If you research on childhood Crohn's, every scientific paper mentions stunted growth, significantly below average weight, delayed puberty, missed schooling, depression, etc. So a modified "non-teenager" diet is important. Your current height and weight would indicate that you have had active disease for months if not years prior to your diagnosis. I had symptoms over 25 years prior to my diagnsosi - I was always told that I was psychosomatic - it happens to a lot of IBDers (inflammatory bowel disease).

That is why I suggest that you adopt a rigorous sport/bodybuilding approach to the world from now on. Anything that teenagers like, e.g., smoking, doing street drugs, drinking pop and alcohol, eating sweets, crisps and deep-fried foods laden with artificial food additives and spices is not going to enable you to manage your health and achieve an optimal height for your particular genetic make-up.

Perhaps, you can find a friend who is sporty and will go jogging, swimming, lifting weights, playing tennis/badmingtom/squash with you. I also put it to you that the majority of girls (I think that this is item 60 on your "To Do List") like sporty, muscular men.

Good luck with the therapy. I hope that you respond well to the 6-MP. Your doctor should have told you that it can take weeks or months to kick in and should have given you Asacol or something similar in the meantime. The fact that they have diagnosed the disease so early is good news and makes the prognosis a lot brighter.

Questions
by: Anonymous

Also I'd just like to ask you if you are annoyed by my constant questions, and if you are, I TOTALLY understand, I promise. I won't either get offended either. If you are not, I thank you immensly from the bottom of my heart.

Crohn's
by: Anonymous

Okay, I got the final report and I beleive I do have Crohn's in the stomach. My doc said I should not worry about my Crohn's and the medicine will help it go into remission. This cheered me up, alot. He also said I don't need to go on any sort of diet but i should just refrain from very high fiber foods like popcorn. I think i'm starting my first dosage of 6MP tommorrow for the first time..

Harry's To Do List - Items 1 to 4
by: Lydia D.


1) Print out all useful posts received to date, all relevant articles, etc., and file them together with the results of your own research to date,

2) Discuss the status of your diagnosis and what you know about the disease to date with your family. Show them your reference file. Involve them - don't shut them out. Learn to say: bowel movements, diarrhoea, cramping/stabbing/burning/background abdominal pain, extraintestinal manifestations of Crohn's disease (iritis, hepatitis, pancreatitis enteropathic arthralgias, pyoderma gangrenosum, erythema nodosum), malaise, exhaustion, depression, etc., without being shy. Determine how much information you wish to be known outside of the family and request that they respect your wishes,

3) Obtain all your medical reports and file these in chronological order (most recent at the top) in a separate file, together with any appointment notes you might have made,

4) Make an appointment to see a nutritionist and modify your diet to ensure you get enough protein and micronutrients. Take a current diet plan (what you eat on an average day) with you together with all your hospital notes and your Health CV (see point 5),

Harry's To Do List - Items 5 to 1000
by: Lydia


5) Put together a Health CV. This is all the information that the doctors will ask you in the future http://www.scribd.com/doc/5602521/New-Patient-form http://www.e-medtools.com/HCC_Questions.html

For example, a possible format would be: name, address, Tel., e-mail, health insurance number, blood group, next of kin/guardian (emergency contact), allergies/intolerances, major diagnoses (month/year), current symptoms, current medication/dietary supplements/OTC treatments (over-the-counter - non-prescription medication - e.g. cold medicine, aspirin, etc.), tabulated dates/in- or outpatient/symptoms-diagnosis-treatment. I can send you my template under separate cover, if you wish. However, I request that you copy in one of your parents if you write to my private e-mail. You are still a minor and everyone must be careful on the internet. My e-mail is yjr at hotmail dot de (just remove the spaces include the ampersand and yes, I am based in Germany/Deutschland - DE). I have my updated "Health CV" with me when I see my doctors. Instead of asking me loads of questions and me struggling to answer them, I just hand the document over and their faces light up. This document is guaranteed to make your dealings with the doctors easier in the future,

6) Be a compliant patient - take your medication consequently and keep a food/mood/symptom/medication diary. If you experience severe side effects or there is a sudden change in your well-being, contact your doctor or an emergency doctor immediately. If you are unable to talk to a doctor and have to do something that you really shouldn't do, then write to your doctor telling him what, when and why,

7) Discuss your concerns about your height and weight with your doctors and request to be refered to a paediatric (pediatric in American English) endocrinologist,

8) Contact your local Crohn's Colitis support group and request to be put in contact with someone of your own age,

9) Start a sport's programme, including body building exercises, that has been approved by your doctor. Caveat: some sport may aggravate the disease,

10) Find some relaxing and upbeat hobbies that don't involve blowing up and/or killing everything in sight,

11) - 1000) ...The rest is for you to fill out...

What happens after you take medication for Crohn's Disease?
by: Lydia D.


I didn't want to cause you any further anxiety with that statement. However, as you are aware Crohn's can hit anywhere in the gut - from the mouth to the anus. If we believe this Wikipedia entry, Crohn's patients are diagnosed thus: 50% ileocolic Crohn's, 30% Crohn's ileitis, 20% Crohn's colitis: http://en.wikipedia.org/wiki/Crohn%27s_disease

You are (like myself) in the 50% group with ileocolic Crohn's.

I reiterate, to confirm that you have Crohn's in your stomach, I would urge you to obtain the pathologist's report. This makes a trip to the paediatric endocrinologist even more relevant and your gastroenterologist(s) should realise this and refer you on.

It is obviously somewhat easier to manage Crohn's that is localised in a defined area of the gut. Anastasia has had her terminal ileum surgically removed and is able to bop about on stage. I did read that she spoke to reporters and said that her Crohn's was only in that area and that she was one of the lucky ones. She does, however, get tired and her mother travels with her to attend to her dietary needs.

Ileocolic Crohn's pops up all over the place, for example, on the tonsils, in the stomach, duodenum, ileum, colon, rectum, etc.

P.S. anything with "itis" on the end of it means there is inflammation present.


Crohn's in the stomach
by: Anonymous

Okay, I don't know if I have crohn's or gastritis, but I think it's crohn's because the Dr would have told me it was plain gastritis. What do you mean When you say if you have crohn's in the stomach ", then you certainly have drawn the short straw." does that mean it's really bad to have crohn's in the stomach?

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Crohn's is a serious, potentially life-threatening disease and thus, must be treated with strong and potentially dangerous medication. As I have mentioned in previous posts, you are in for a bumpy ride. Crohn's is not curable, but you can go into remission for long periods if you look after your health - diet, exercise and finding hobbies that are doable are all important here.

I recommend that you get hold of the paper "The Mourning Process in Chronic Disease" by Mayumi Imao. Losing your health will throw you into a mourning/grieving process. You will get angry/frustrated/depressed. It is important for you to understand what is happening to you and to realise that it is a natural process. I find Mr. Imao's thesis very plausible.

Please do not try and go this alone - get your parents to help you and keep talking to them. In addition, keep an open dialogue going with your doctors. The diary will help here. You don't have to give it to them to read, but it will help you prepare for appointments.

I suggest that you print this out and hand it to your parents who can pass it on to your headteacher, if you think fit. http://www.crohns.org/congress/submission01/appiv.htm

What happens after you take medication for Crohn's Disease?
by: Lydia D.

The positive diagnosis was foreseeable. What is important now is "to act and fight". I know where you are at and I know how difficult it all is. The advantage you have nowadays is the internet and the more advanced treatments that are available.

The inflammation and ulceration is very normal for Crohn's disease. This is why we can look "slim", fit and healthy, but feel like death. This makes it difficult to convince others that we are actually ill. The scientists have identified over 30 different genes involved in the disease and it is hereditary.

If you have Crohn's in the stomach, then you certainly have drawn the short straw. However, it may be gastritis. Please request a copy of the final medical report (may take a few weeks until it is written - see Prometheus comment) to clarify this. Read it and discuss it with your parents and then file it in a safe place for future reference. Also remember to write down, when you got the diagnosis, which doctors you spoke to, so that, in the future you can refer to the information. There is nothing worse than trying to piece together what happened 10 or 20 years ago.

You have the advantage that your disease is mild to moderate and, as such, should respond to medication. The 6-MP (aka 6-Mercaptopurine or Purinethol) is a cytostatic (oral chemotherapy drug) and is recommended for long-term treatment of Crohn's disease. Ideally, you should take it for at least 4 years. However, you must go for regular blood tests - it can irritate the liver and surpress white blood cell formation in some patients. http://www.drugs.com/pro/mercaptopurine.html

I would encourage you to write a diary and record your symptoms/medication/mood/food. See previous post(s).

The Prometheus Labs in the USA have devised a test to determine the levels of TPMT (breaks down and hence aids in the elimination of 6-MP from the body) whether or not a patient will tolerate the treatment. Without sufficient levels of the enzyme TPMT, the 6-MP can build up in the body and reach dangerous levels. This test is done prior to taking the drug. http://www.prometheuspatients.com/Products_Diagnostics.asp

The chances of you tolerating 6-MP are a lot higher because it is the actual active substance. http://en.wikipedia.org/wiki/Azathioprine

Your doctors are wise to start you on 6-MP. However, it takes anywhere between 2-6 months for the drug to kick in, so they might start you on steroids (Prednisolone or equivalent) in the meantime.

Steroid therapy in children and teenagers affects/stunts growth. It is because of this that they want to start you on 6-MP. Steroid treatment can affect mental health because the medication can cause psychosis, depression, mood swings, personality changes, etc.

I officially have Crohn's Disease. :(
by: Anonymous

The dr called and said I have Crohn's in the rectum, left side of the colon, ileum, transverse colon i think, stomach and that's it. He said it was overall mild inflammation, but in some locations there were ulcers almost bleeding. I am so overwhelmed.. I didnt know it would be All OVER MY GOD DAMN DIGESTIVE SYSTEM! :(( Please I'd like you to be honest, do you think this is a bad diagnosis? My doctor recommended a medication called 6NP is that any good? He also said I need to get a blood test to see which medications are best for me.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

It is a pleasure to be able to help you.

I have linked you to my favourite references, but I will post if I find anything else that might be relevant to your particular situation.

I will keep my fingers cross that the diagnosis is something less iniquitous, but the writing does seem to be on the wall - I don't want to instill any false hope here.

If you do get a Crohn's diagnosis, I would encourage you to find young people of your age who are Crohn's'd. I think that it would help you greatly. I have not got where I am today without a lot of support from fellow sufferers and understanding friends.


Thanks
by: Anonymous

Thank you so much! Looks like I've ran out of questions for you lol! You've basically answered all my questions for now, but I'm sure I'll have LOADS more if I actually have it and after I talk to the doctor, which is probally tomorrow because this Wednesday, it'll be two whole weeks since the procedure and the doctor said it will only take 5 days for the results! So keep me updated on more info in general thanks ill write another comment when I speak to the doctor. Thank you so much!

What happens after you take medication for Crohn's Disease?
by: Lydia D.



There is a great paper called The Physician's Guide to Short Bowel Syndrome, Sept. 2005, by Carol Rees Parrish. Ignore the title - it has excellent information on the gut and how to modify your diet to manage diarrhoea. I suggest that you find it, print it out and refer to it on a daily basis as appropriate.

Perhaps, this link will work: http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/September2005.pdf


What happens after you take medication for Crohn's Disease?
by: Lydia D.


It can be difficult to diagnose Crohn's disease, but I am sure that the holiday period is delaying the procedure somewhat.

Diet is a very individual thing, but there are a few basic rules if you have inflammation and diarrhoea and/or gut pain.

1) Base your diet on the BRAT (banana, rice, apple mousse, toast/tea - black) and introduce other food items one by one to check whether or not you tolerate them (food diary helps here),

2) Avoid acidic foods, such as pure sugar sources (sweets, honey, syrup, sodas and colas, etc.),

3) Avoid foods that are difficult to digest, such as red meat, high fibre fruit and vegetables, e.g. cabbage, peas, oranges and other citrus fruit, nuts, anything with skin and/or pips/stones,

4) Avoid spices including pepper and garlic - use herbs in cooking instead,

5) Avoid fatty foods, fried foods and all artifical additives and flavour enhancers (bang goes your crisp snacks),

6) Do not eat unpasteurised foods, such as unpasteurised milk or cheese, or soft cheeses with moulds in them, such as gorgonzola,

6) Imagine you had a 4 cm ulcerating raw and, perhaps, bleeding wound on your arm. Which foods would you want to rub into it, if you were forced to do so? I suggest trying yoghurt, mashed banana, steamed peaches/pears/apple, milk, hard cheese, processed cheese, pureed or well-cooked and well-chewed carrots/pumpkin/broccoli, aubergine flesh, avocado pears (caveat fatty), mushrooms, mashed potato, noodles, pasta, chicken, tofu, turkey, fish, shellfish, etc.

7) For something sweet eat carrot/banana/apple cake, yoghurt with steamed fruit, banana split with yoghurt,

8) Avoid foods that exacerbate diarrhoea: e.g. coffee, cocoa, chocolate, colas and sodas, aniseed, ginger, nettle, certain spices, fatty food, deep fried food, cream, mayonaise, cream cake, pork scratchings, etc.

The above only applies if you have diarrhoea, inflammation and/or pain. When Crohn's patients goes into remission, they can eat more or less anything they want to. The only caveat is that a number of Crohn's patients also have intolerances such as lactose/fructose/maltose intolerances.

You may also find that you can tolerate certain items listed when you are flaring. This will involve a lot of trial and error on your part. This is where writing a diary comes into its own. You will tolerate more if you eat smaller meals 5-6 times a day, rather than 2-3 big meals.

I would encourage you to show your mum or dad the information I have provided and to discuss it with them.

Crohns Disease
by: Anonymous

Thank you. I still am waiting for the biopsy results. I don't know what's taking so long.. Maybe it's because of Christmas and New Year's? I still need to wait for the doctor to tell me if I have Crohn's or not ( I hope i dont! ) and if I do what I can eat and what I can't. Can you please give me a bunch of foods I can and cannot eat. Thanks so much!!!!!!

What happens after you take medication for Crohn's Disease?
by: Lydia D.


I just wanted to bring to your attention that Anastacia has Crohn's disease, specifically Crohn's ileitis. She has had an operation to remove the inflamed section of terminal ileum.

J.F.Kennedy also had the disease, so you can go on to do great things even with the disease.

http://en.wikipedia.org/wiki/List_of_people_with_Crohn%27s_disease
http://crohn-colitis.hu/eng/famous-people-with-ibd.php

11 Things Not to Say to Someone With Crohn's Disease or Ulcerative Colitis
http://www.health.com/health/gallery/0,,20533275,00.html

Keep asking the questions. I have had the benefit of nearly 20 years Crohn's experience and am happy to help you. I can remember how I felt when I was going through the diagnosis procedure.

I would encourage you to make an appointment with a paediatric endocrinologist to discuss your concerns about your height. You have already noticed that you are smaller and thinner for your age and I really do think that they can do something for you. My concern is that it is a major concern for you and, thus, it must be treated seriously because as it is one of your key concerns it may have a severe impact on your mental health. And, the last thing you need is depression in addition to Crohn's. http://en.wikipedia.org/wiki/Human_height

However, I reiterate that with proper nutrition, it is still not too late for a few growth spurts, but you are not going to be able to do it on a normal diet. You really need to be on a body building diet. http://forum.bodybuilding.com/showthread.php?t=120615291&page=1

Boys stop growing at around 16 http://kidshealth.org/parent/growth/growth/growth_13_to_18.html

As you are over 13 years old, you are old enough to start body building. I recommend that you buy a few weights, ankle weights, arm weights, and an indoor trampoline (1 metre is fine, a slightly bigger one (~1.5 m) with a hand rail would be better). Then you can do some impact sport if you are too ill to go outside. You don't need to jump, you can walk, jog, march, or just stand on it, judder and rock from side to side. You can lie on it to do sit ups, you can stretch on it. http://www.lovemytrampoline.com/page/trampoline-health-benefits

Tennis, squash, badmington, swimming, cycling and walking are also good. You should aim to do an hour of exercise a day if you can.

You need to keep a dialogue going with your doctors. This is the only way that you will get the medical help that you require. You should also discuss an exercise programme with your doctors for their OK.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

A flare up is when a disease gets worse from a baseline of either remission (i.e. no disease detectable) or a steady disease state, e.g. from mild to moderate.

FYI: Severity of disease is classified as mild, moderate, severe or fulminant (completely out of control) disease.

Pain is less likely with Crohn's disease than with ulcerative colitis. Be thankful that you don't have any pain at the moment. It indicates that the severity of your disease is most likely mild to moderate. Pain is frequently experienced with severe or fulminating Crohn's, and/or stenosing (narrowed length of intestine) or stricturing (narrowed ring of intestine) Crohn's.

I refer you to the dietary information here:
http://www.umm.edu/altmed/articles/crohns-disease-000043.htm

The problem is that different parts of your intestine are responsible for the absorption of different nutrients. There is the duodenum, the jejunum, the ileum and the colon. The colon is primarily responsible for reabsorbing water and minerals. http://en.wikipedia.org/wiki/Human_gastrointestinal_tract

I suggest that you print out the first diagram in this scientific paper, which indicates approximately where what is absorbed in the intestine: http://www.cmaj.ca/content/166/10/1297.full

Inflammation in the terminal ileum is a big problem because it is here that the bile, fatty acids (fats), the fat-soluble vitamins and vitamin B12 is absorbed. You only need to be short of one micronutrient to cause a metabolic imbalance. So, yes 4 cm of inflammation at the terminal ileum could cause your problems. However, I think it very likely that you have other patches of inflammation up higher in your intestine.

I completely understand your concerns. I recommend that you talk to a paediatric nutritionist and take your mum along. She needs to understand that you need twice as much protein as the rest of the family and you should increase your calcium intake - milk, yoghurt, fish, egg, cheese, leafy green vegetables, etc. The only caveat here is that you might not tolerate specific food groups. This is a very individual thing and only you can determine what is right for you.

Eat protein at every meal and every snack, but vary the protein source. It is better if you eat 5-6 small meals throughout the day.

Crohns
by: Anonymous

Thank you for your previous post. Im actually keeping all those links you sent me in a folder. I looked at some and they gave me a little bit more information.:) I just have a couple of more questions, if you don't mind. I was just wondering, what is a flare up? I don't understand this(or even that maybe I have Crohn's) because I NEVER get abdominal pain and doesn't like EVERYONE who has Crohn's have a LOT of abdominal pain? Also, an MRI result and the colonoscopy showed that there is moderate inflammation in the ilium. That was only like a 4cm segment, so is it possible that only about 4cm of my gut is making me SO short and SO skinny? I am almost 14 and I am VERY short and VERY skinny. How come the rest of my intestines doesn't absorb MOST of the nutrients? Thank you and I hope you understand my concerns.

What happens after you take medication for Crohn's Disease?
by: Lydia D.


I suggest that you play it by ear and work out what is best for you. In the meantime you can say that the docs found some inflammation in the gut and are sorting it out. Alternatively, you can keep it low key and not divulge anything. It is your medical health and, as such, it is a personal thing.

Check out the short summary of Crohn's and the link to the comic and other links I sent you in the previous post.

There are some lucky Crohn's patients who just have one flare up in their lives. Needless to say these are very rare. Unfortunately, some of these patients seem to think that they have found a cure for Crohn's and don't understand that it is just a quirk of nature and their genetic make up.

I was without medication for 12 years and am now on maintenance levels of steroids because it relapses all the time now.

When your disease is in remission you might not have to take maintenance medication. It is a really individual thing and your doctors should help you here.

I can understand that you are nervous and are worrying about what is coming your way. I am afraid to say that you will have to ride the waves. The disease is a real test of resilience, but it is doable. With any luck you will find people of your own age to talk to - your local Crohn's/Ulcerative Colitis support group should be able to help here. http://www.ccfa.org/printview?pageUrl=/about/global_partners

You also have to understand that the (temporary or otherwise) loss of one's health triggers a mourning process. Google the PDF paper "The Mourning Process in Chronic Illness". This will help you better understand what you are going through. However, there is no doubt that you are in for a bumpy ride if the diagnosis is Crohn's.

I suggest that you print out all the references I have linked you to and put them in a folder for future use. These are the best that I have found in the WEB, but there are thousands more. You have to become an expert in order to manage the doctors properly.

The side-effects of medicines can be found here: www.drugs.com www.rxlist.com

They will probably put you on Prednisolone or Entocort (aka Budesonide), Asacol or Pentasa and, perhaps, Loperamide (aka Imodium) in the first instance. Other meds include Azathioprine (aka Imuran), 6-Mercaptopurine (aka 6-MP or Purinethol), Methotrexate, Remicade, Humira, Thalidomide, etc.

Keep a file for all your medical reports and doctor's letters.

I must also point out that having Crohn's and an ileostomy has not prevented me from getting a few degrees, travelling the world, scuba diving, motor biking, weight training, etc. I was a tad slow getting the last degree due to the Crohn's. I did meet a fellow diver in Glasgow who told me he had Crohn's and he was over 6 foot tall. He was about 20 years old.

???
by: Anonymous

Do you think I should begin telling my friends or should I keep my disease on the "down low"? And can you please give me a brief summary of the side affects of the medications for crohn's? And also how often will I take these medications? I also read that most people's Crohn's go away for a long period of time and then come back at an older age. During that period, will I need to still take medicine? Thanks a lot., im just nervous about having Crohns.

What happens after you take medication for Crohn's Disease?
by: Lydia D.

Sorry to hear that you have ileitis. The pathologist will confirm whether or not it is Crohn's ileitis.

In the interim, there are things that you can do to help yourself:

Learn how to communicate with your doctors
http://ibdcrohns.about.com/od/diagnostictesting/a/15minutes.htm

Research the "Anti-inflammatory diet"
http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

Keep a patient food/mood/symptoms/medication diary. I refer you to the following:

http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

Crohn's daily activity index
http://www.ibdjohn.com/cdai/

The Bristol Stool Scale http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The Comparative Pain Scale: http://www.tipna.org/info/documents/ComparativePainScale.htm

Crohn's Disease
http://www.mayoclinic.com/health/crohns-disease/DS00104

Doctor's respond very well to charts, graphs, tables. So a scientific approach will help you get the best treatment your doctors are able to give you.

The following articles might help you get across to your friends what it is all about. You have to steel yourself for a bumpy and often lonely ride ahead.

Very good short description of Crohn's.
http://www.crohns.org/congress/submission00/appendix4.htm

Comic - Everything you never wanted to know about Crohn's disease
http://ventedspleen.com/blog/2007/10/22/24-hour-comic-everything-you-never-wanted-to-know-about-crohns-disease/

You have to manage your disease and the doctors, which is difficult when one feels so ill. A patient diary will help both you and the doctors. You don't need to show the doctors your diary, but you can use it to track your progress and to record what you can eat (tolerate) and the changes in your symptoms with the different therapies.

You are going to have to eat like Mr Universe, but you may often feel like a 90-year old man. Be prepared for some real challenges ahead. Be also aware that a lot of people are frightened of illness and some might back off, others might be downright rude. Any bullying should be recorded in your diary and discussed with the adults around you.

Keep an eye on your symptoms and ensure that any new symptoms are addressed by the doctors.

Patients on long-term medication frequently experience side-effects. These can be found here: www.drugs.com www.rxlist.com. Caveat: What you read is a list of all side-effects experienced by all patients in clinical trials. Not all patients experience side-effects, a minority of patients experience severe side-effects and have to stop the medication. The doses are usually adjusted to the patient's weight, e.g., mg/kg patient weight.

I wish you a lot of luck and strength for the following months and years. A further tip would be to start collecting copies of all your medical notes in a file, so that you can keep an eye on the doctors.

It went great but...
by: Anonymous

Hi, the colonoscopy and endoscopy were great! Didn't feel a thing and I just woke up in the recovery room. However the dr did see some inflamation in the ilium and took some biopsies and Im just waiting for the results.

What happens after you take medication for Crohn's Disease?
by: Lydia D.


I wish you loads of luck and sincerely hope that you don't have Crohn's disease. Please report back to let us know how the tests went.

Here's hoping you receive a more pleasant diagnosis.

Thank you
by: Anonymous

Thank you very much! Im getting my colonoscopy and EGD tommorow I hope all goes well and I dont even have Crohn's!

What happens after you take medication for Crohn's Disease?
by: Lydia D.

If the Crohn's medication kicks in, it will allow you to start growing again, but it may not necessarily allow you to reach the hight you would have been if you had not had childhood Crohn's disease. So you may be short of a few inches/cms.

What is important alongside the medication is a really good diet. You will not grow eating a diet of sweets and crisps because they lack protein and essential fatty acids, vitamins and minerals. The secret of growing tall is: "tall" genes (look at your parents and their parents), a healthy balanced diet with lots of protein/vitamins/minerals, lots of sport and outdoor exercise.

The Chinese are far taller than they were some decades ago because increased affluence and the part adoption of the Western diet has increased the protein in their diets.

http://grow-taller-secret.blogspot.com/2006/06/12-basic-tips-for-healthy-nutrition.html

http://lotuslove19.hubpages.com/hub/Food-that-makes-you-tall

With Crohn's you need to eat an exceptionally good diet for the rest of your life. If you have problems eating (nausea, loss of appetite, etc.) then sipping Ensure or an equivalent astronaut drink throughout the day and taking a children's vitamin tablet each day should help you, but you must discuss all this with your doctor first.

Crohn's and Nutrition
http://www.youtube.com/watch?v=xg1m9jF_6Mo

http://www.youtube.com/watch?v=EeAmYqn81PQ

Pediatric Crohn's Disease
http://www.youtube.com/watch?v=Q_pWr2cMrxA

Teenager with Crohn's Disease
http://www.youtube.com/watch?v=891vb1XyyEk&feature=related

Speaking with a Social Worker
http://www.youtube.com/watch?v=P_O2PKNLsn8

Alcohol, smoking, fatty fast food, bad diet, etc. all stunt growth.

You need to get a referral from your primary care physician or gastroenterologist to a paediatric endocrinologist for proper assessment and treatment. I understand that if you are significantly short for your age that an endocrinologist would treat you with synthesised human growth hormone (HGH), e.g. Somatropin and Octreotide. This requires careful medical supervision.

http://www.drugs.com/fda/recombinant-human-growth-hormone-somatropin-ongoing-safety-review-possible-increased-risk-death-13015.html

Keep up the good work. If you want anymore references I can point you in the right direction. Put a folder together with categories: Crohn's, nutrition, endocrinology, etc.

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