Harry's Summer Camp Preparation - To Do ListNEW 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
May 20, 2012
Height and weightNEW 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...)
May 20, 2012
Height and WeightNEW 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.
May 19, 2012
Height and WeightNEW 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
May 19, 2012
Testosterone -- No more steroidsNEW 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.
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.
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)
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.
May 18, 2012
Testerone-- No More SteroidsNEW 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.
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.
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...)
May 10, 2012
Growth Hormone / Testosterone NEWNEW 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.
May 09, 2012
Growth Hormone / TestosteroneNEW 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?
May 01, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
"...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..."
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.
Apr 30, 2012
Pains are gone!NEW 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.
Apr 26, 2012
Pains are gone!NEW 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
Apr 17, 2012
What happens after you take medication for Crohn's Disease?NEW 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
What happens after you take medication for Crohn's Disease?NEW 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.
Apr 04, 2012
Back PainNEW 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
Mar 25, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
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.
Mar 25, 2012
What happens after you take medication for Crohn's Disease?NEW 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
Mar 25, 2012
Bone AgeNEW 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.
Mar 19, 2012
What happens after you take medication for Crohn's Disease?NEW 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
Mar 19, 2012
What happens after you take medication for Crohn's Disease?NEW by: Lydia D.
...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.
Mar 18, 2012
What happens after you take medication for Crohn's Disease?NEW 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).
Mar 18, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Mar 18, 2012
ConcentrationNEW 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.
Mar 18, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Mar 18, 2012
What happens after you take medication for Crohn's Disease?NEW 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
Mar 18, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Mar 18, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Mar 18, 2012
6MP and PainsNEW 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?
Mar 18, 2012
6MP and PainsNEW 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?
Mar 12, 2012
TyNEW by: Anonymous
Thanks
Mar 12, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
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
Mar 06, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Mar 06, 2012
Lowered DoseNEW 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.
Feb 28, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Feb 28, 2012
Fertility?NEW 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!
Feb 28, 2012
Fertility?NEW 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
Feb 22, 2012
What happens after you take medication for Crohn's Disease?NEW 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.......
Feb 22, 2012
What happens after you take medication for Crohn's Disease?NEW 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
Feb 21, 2012
Alternative Medine?NEW 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!!
Feb 21, 2012
What happens after you take medication for Crohn's Disease?NEW 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
Feb 20, 2012
Puffy-ish Face??NEW 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!!
Feb 09, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Feb 08, 2012
SocialNEW 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.
Jan 27, 2012
What happens after you take medication for Crohn's Disease?NEW 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 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.
Jan 27, 2012
Sed Rate!! :)NEW 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!!
Jan 24, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 24, 2012
Leg PainNEW 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.
Jan 24, 2012
Leg PainNEW 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.
Jan 19, 2012
TyNEW 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.
Jan 19, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 19, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 19, 2012
What happens after you take medication for Crohn's Disease?NEW 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
Jan 18, 2012
StoolNEW 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.
Jan 15, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 15, 2012
?NEW 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:(((
Jan 15, 2012
Crohn's DiseaseNEW 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?
Jan 09, 2012
What happens after you take medication for Crohn's Disease?NEW 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
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
Jan 08, 2012
ThanksNEW 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!!
Jan 08, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 08, 2012
Crohn's DiseaseNEW 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?
Jan 06, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 05, 2012
QuestionsNEW 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.
Jan 05, 2012
Crohn'sNEW 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..
Jan 05, 2012
Harry's To Do List - Items 1 to 4NEW 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),
Jan 05, 2012
Harry's To Do List - Items 5 to 1000NEW 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...
Jan 05, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 04, 2012
Crohn's in the stomachNEW 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?
Jan 04, 2012
What happens after you take medication for Crohn's Disease?NEW 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
Jan 04, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 03, 2012
I officially have Crohn's Disease. :(NEW 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.
Jan 03, 2012
What happens after you take medication for Crohn's Disease?NEW 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.
Jan 02, 2012
ThanksNEW 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!
Dec 31, 2011
What happens after you take medication for Crohn's Disease?NEW 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
Dec 31, 2011
What happens after you take medication for Crohn's Disease?NEW 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.
Dec 31, 2011
Crohns DiseaseNEW 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!!!!!!
Dec 29, 2011
What happens after you take medication for Crohn's Disease?NEW 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.
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.
Dec 29, 2011
What happens after you take medication for Crohn's Disease?NEW 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.
Dec 28, 2011
CrohnsNEW 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.
Dec 28, 2011
What happens after you take medication for Crohn's Disease?NEW 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.
Dec 23, 2011
???NEW 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.
Dec 23, 2011
What happens after you take medication for Crohn's Disease?NEW 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:
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.
Dec 21, 2011
It went great but...NEW 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.
Dec 21, 2011
What happens after you take medication for Crohn's Disease?NEW 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.
Dec 19, 2011
Thank youNEW 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!
Dec 19, 2011
What happens after you take medication for Crohn's Disease?NEW 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.
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
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.
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.
