Crohns Disease question.

by Cathy
(Maryland)

I was diagnosed in 1968 at the age of 16 with ulcerative colitis. Had ALL the surgeries ie:total colectomy..etc. In 1990, was diagnosed with Crohns Colitis. I had to have 17 surgeries that year to repair the bladder/vaginal wall, because of the crohns. I now have advanced crohns.....have had all the meds out there, such as Humira, Methatrexate,6-MP, Asacol...and, multiple others. I even had ostomy revision surgery in 2006, which was botched by the surgeon. This was to bring the intestine out a little further....however, things didnt go has planned and I was operated on a second time 2 days later, because the intestine gangrened. 4 months later, another surgery because the site from the first two developed a horrible infection. That surgery has never healed. I ended up in the hospital, again, for MRSA. I am totally frustrated, angry at times, and, just plain sick and tired of the whole thing. ANYONE out there, gone through anything as this? I am tired and 60 years old and retired last summer because I just couldnt work. I need support from anyone because I feel all alone with these issues. My friends/family try to be supportive, but, they dont have these problems. My doctors want to operate, again. NEVER EVER will I go through anything like that again.
If anyone has any thing to offer, please do. Thank you.

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Education NEW
by: Anonymous

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Crohns Disease question. NEW
by: Lydia D.

I am also standing calf deep in dust and overdue paperwork. I don't like it, but I have learnt (somewhat) to let go. Otherwise I get extremely unhappy. I hope everyday that I can summon up the energy to tackle a chunk of it.

I will send you a e-mail sometime because we have a fair few things in common that I would prefer to discuss in private.

In the meantime, keep on writing that patient diary as you include the various supplements into your daily regime. The aim should be to reduce the sleeping tablets (3/4 -> 1/2 -> 1/4). However, you can only do this if your vitamin and mineral intake, nutrition, etc., is adequate. I am fairly certain that your lack of sleep is due to malnutrition due to the SBS. I was in the same state a few years ago and was wired up all the time with my heart banging like a drum and skipping beats (extrasystolic beats). I thought that I was going to go insane through lack of sleep.

Another aim should be to come off the AF drug. Once you have your magnesium, potassium, sodium, vitamins and other minerals, etc., levels sorted out, this should stabilise. This assumes that there has been no long-term damage because you have been medically neglected for so many years.

I was put on anti-depressants in my late 20's and I realise now that what I had was severe depression due to the (undiagnosed) Crohn's malabsorption. They didn't do any blood tests despite me looking like a 16 year old at age 28 years old. I took a week's worth and then chucked them away because I was sure that there was something else going on. I was taking a multivitamin at the time, but I was most likely short of some B-vitamins (causes depression), calcium (causes depression), etc.

I still teeter on the verge of Crohn's anorexia especially if I physically exert myself.

By the way, hard cheeses especially parmesan and emmerthal cheeses, plus goat's and sheep cheeses are lower lactose. Probiotic yoghurts are a good idea to stabilise the gut flora in addition to giving you a calcium source. The risk of osteoporosis is extremely high when one has chronic diarrhoea.

You and I are in the maintenance phase of SBS - in 2005 after my 30 cm ileal resection for gangrenous ileum I had 5 litres output a day and the doctors didn't bat an eyelid. Because we were not treated in the early stages, it is virtually impossible for the gut to stabilise as it surely might have done with prompt and appropriate treatment. Doesn't it just make you want to knock their heads together?
http://emedicine.medscape.com/article/193391-overview#a0104


Lydia NEW
by: Cathy

Lydia,
I am the oldest of 4 children and was the child that was the "perfectionist", overachiever, picking lint off the rug on my hands and knees, couldnt stand it if a lampshade was tilted, etc. I carried that over into my marriage, but, as my crohns progressed, and, children came along, I found that I couldnt keep it up. As I have aged, I now know that dirt wont kill me, hahah, and, that if I dont dust until the weekend, the earth will still revolve. Learning to relax has been very difficult for me.
I will check out the links you sent....CBN 700 Club, too! Sounds interesting.
Thank you for taking the time, once again, to encourage me. I appreciate it so much.
Am heading out to the livingroom to be a slug and watch Dancing with the Stars! haha...dont laugh!
Cathy
Crohns Disease question. NEW
by: Lydia D.

I was always a high achiever, perfectionist and fitness addict (but no athlete). It is really difficult now that I have turned into a sloth with an IQ of about 60.

Well done on the weight loss. You might find that your stoma changes shape after you have reached your desired weight. I would encourage you to try other stoma appliances if this is the case.

I wanted to bring a few more references to your attention. Again these are just random references that I have found on the web. I have not bought Suzy Cohen's book yet, but I am toying with the idea of buying it.

Cardiac Arrhythmias May Be Caused by Nutritional Deficiencies
http://dearpharmacist.com/?p=1598

CBN 700 club
Book by Suzy Cohen: Drug Muggers
https://www.youtube.com/watch?v=nsCtMlJtXeU&feature=related

Suzy Cohen - Natural Health Tips - Set 1
https://www.youtube.com/watch?v=X6DjpSApgRA

Suzy Cohen - Natural Health Tips - Set 2
https://www.youtube.com/watch?v=mOMDoftqRLU&feature=related

I believe an old aunt of mine had Crohn's and my grandmother was always clutching her stomach because of her reflux disease. I have GERD that I try and keep under control by a strict diet and minimal medication (does not always work especially when I sin).

Have fun doing your research and experimenting with all the supplements. I hope that you at least have some moments in the day where you feel somewhat better. I call these moments my Sofa-Nirvana because that is where I experience my best moments.

Epigenetics explains why some people have a gene(s) coding for a particular illness but may never develop the disease.

Epigenetics
https://www.youtube.com/watch?v=kp1bZEUgqVI

The Ghost in your Genes - BBC Horizon
https://www.youtube.com/watch?v=toRIkRa1fYU
Lydia NEW
by: Cathy

Lydia,
I do understand what you mean about the emailing and if someone else is can benefit by what you write, or anyone for that matter, then, by all means, please continue on the forum.
I can understand the malaise feeling. I am exhausted most days, and, do try to rest and not overdue. However, coming from a long line of women that push themselves beyond what they are capable of, I, too, find that I have done that in the past. I am not so much like that, anymore. There is still the occasional day where I feel I must do something or the dudy will take over.
I, too, had a complete hysterectomy in 1986 when I was 34, because of the "beloved" crohns. I do have 2 children, so, am blessed. They are in their early 30's now. They only knew me as a sick mom and not a healthy one. I often felt sad that I couldnt go on the school field trips with them, or do more as they were growing up. However, that guilt has been dealt with and put behind me.
I know from doing research, myself, that crohns is hereditary. I found out about 10 years ago, that crohns was on my biological father's side of the family. Apparently, there was an uncle and several cousins with, either crohns or ulcerative colitis. None of which, that I know of, have had to deal with the extremes that I am going through now.
Anyway, thank you for the extra info. regarding the supplements, and, pain medications. I am trying very hard to lose the weight from the prednisone. So far, I am down 17 pounds in 7 weeks.
Rest and take care. More later.
Cathy
Crohns Disease question. NEW
by: Lydia D.


I had actually started writing something but in my current state, I find it really difficult to finish things. I am also way behind with my personal paper administration and must get that out of the way first. The tiredness/exhaustion/malaise gets in the way and I also have back and knee problems as a result of not being able to do any sport for the last 7 years. I was a fairly sporty person prior to all this and I miss not being able to freely move around.

I forgot to write down iron and vitamin C (should be taken together) in my list of supplements in my post on 18th April. Also you should aim for 5-6 smaller meals each day and eliminate fast food and packaged food, artificial food additives, spices (including pepper), etc., from your diet.

I am also on daily:

2 x 6-8 drops Tincture of Opium (ToO),
3 mg Budesonide,
20 mg Omeprazole.

If I don't take my hormone replacement therapy I spiral down into a really black depression. I am taking the absolute minimum and am trying to reduce this further, but it is difficult without oestrogen. Because of the damage due to year-long Crohn's inflammation and benign tumours and an endometrial cyst the size of a small grapefruit, I had to have all internal female organs removed in 2002. In 2001 a doctor missed diagnosing the cyst on ultrasound because she thought that it was a shadow cast by the ileostomy (?§!$!%!"§).

*Not paregoric http://www.drugs.com/ppa/opium-tincture.html

You might do better on ToO because you can fine-tune the dosing depending how your gut is on a given day. My doc told me I could take a maximum of 45 drops in one day and the sub-dose can be taken every 8 hours, i.e. 4 times a day. If I increase the dose over the daily 16 drops, I end up with a completely paralysed intestine which obviously is not good. With Imodium, my gut instantly seizes up - I reiterate that I am very sensitive.

Thank you for giving me you e-mail address. I prefer, at the moment, to continue to correspond over the forum because then, perhaps, other people are helped - you know for the greater good. There is also less pressure on me to respond and if I am too unwell or unable to respond then someone else might be in the position to do so.

Anyway, all the best.

Lydia
Lydia NEW
by: Cathy

Lydia,
With as much knowledge that you have, have you considered writing a booklet to help others? You may have no desire or the time, but, I would certainly back you up 100%. You've helped me more than anyone in the 29 years since my ostomy surgery.
Okay, am off of the computer for now. If you would like to email me, please do:

teacher598@aol.com

More later!
Take care,
Cathy
Crohns Disease question. NEW
by: Lydia D.

I am pleased to have been of some help. I sincerely hope that your quality of life improves over the next few months.

Good luck with stabilising your metabolism and getting rid of your AF.

A nice weekend to you too.

Lydia
Lydia NEW
by: Cathy

Lydia,
Thanks for your note. I have consulted with enterostomal nurses. Infact, they've come out to my house and helped me, showed me, etc. They are as perplexed as I am. They said the shape of the stoma is very odd and since it is a result of surgeries gone bad, that I have to work around it. Of course, thats what I do. I adjust the wafer as best as I can, use paste, belts, etc. You name it...its on me! haha....I can still maintain my sense of humor, at times.
Thank you, Lydia for taking the time to write to me. I wish I could express how much it means to me that you are so understanding and helpful.
Have a nice weekend.
Cathy
Crohns Disease question. NEW
by: Lydia D.

Cathy,

As you are having problems with your appliance, I suggest that you ring up the manufacturer's and ask to speak to the stoma nurse or appliance specialist. They will send you the relevant samples. They will need to know the size of the stoma and discuss your particular challenges with you before deciding which free samples to send you. http://www.ostomy.org/ostomy_info/suppliers.shtml

I kept a calendar of what happened when I wore particular products. I find the Convatec products just fall off - it has everything to do with individual skin composition and reaction to the glues used.

I have similar skin problems to yourself. I believe it has a lot to do with the voluminous and very caustic output. For the first time in nearly 20 years, I had an abscess under the baseplate last year. I do well on Coloplast products. I place a Curagard ring (Coloplast) under the concave Assura baseplate and generally only have leaks about once a week.

Good luck with your DIY treatment. I think that it is particularly important that you get the atrial fibrillation under control. I still have them, but they are nothing like what I experienced in the past when my metabolism was totally out of control.

I have to point out that in the SBS papers, it is always stated that you need vitamin B12 and folic acid, however, when you read other literature it is emphasised that if you substitute one B vitamin, then you should substitute all 8, i.e. the vitamin B complex.

Interestingly, I do not absorb tablets unless I crush them between 2 spoons, but I do OK on capsules. With enteric-coated tablets they come out with the writing intact.

Please let me know how it goes. Don't expect miracles - you might notice some improvement within the first week or so, but it is more likely to take a few months. You will have to experiment with respect to the doses you require. As your output is not as high as mine, then you will get away with taking fewer B-complex vitamins.

I also have an underfunctioning thyroid gland due to selenium deficiency. This is frequently seen in Crohn's patients. http://ods.od.nih.gov/factsheets/selenium-HealthProfessional/
Lydia NEW
by: Cathy

Lydia,
I think, too, I have the short bowel syndrome. When I had the 2 surgeries back to back in 2006, the docs shortened my bowel even more. I dont have a large intestine due to the ostomy. I know I dont absorb/disgest capsules, so, am always careful to get "pills"....I can absorp those.
My output of diarrahea is a large amount, but, dont think, everytime, its as much as yours. I do take Lomotil 4 times a day, otherwise, I have major issues with my ostomy...I leak frequently, resulting in changing the appliance 2-4 times a day. Other days I dont leak and can wear the appliance up to 3 or 4 days. I do break out and have a rash with blisters. However, this is mainly due to the odd shape of my stoma, a result of the surgery.
Anyway, I will read all the links you sent.
Thank you from the bottom of my heart for taking the time to help me. I would give you a hug if you were closer to me!! hahah
Thanks, Lydia, your encouragement has been a blessing.
Cathy
Crohns Disease question. NEW
by: Lydia D.

Supporting references

Please note that I try to find the most recent and appropriate references, but these are only suggestions. There may be better references or more current references in the Internet that I have not yet come across.

Do not buy your supplements over the internet - stick to Walmarts or equivalent. Expensive vitamins are just the same as cheap vitamins and they work for me.

SBS (not to be confused with Shaken Baby Syndrome)
I am using SBS instead of intestinal failure because it is more frequently referred to in the literature.

http://rarediseases.info.nih.gov/GARD/Condition/1502/Short_bowel_syndrome.aspx

http://ukpmc.ac.uk/abstract/MED/16207689/reload=0;jsessionid=ou9O6h3jkVzXV8LTKxgt.4

http://www.patient.co.uk/doctor/Short-Bowel-Syndrome-%28SBS%29.htm

http://www.uptodate.com/contents/management-of-the-short-bowel-syndrome-in-adults

http://www.springerlink.com/content/y862j57l70788201/

SBS USA clinical guideline: http://www.gastrojournal.org/article/PIIS0016508503000520/fulltext

Eight vitamin Bs
http://www.wisegeek.com/how-do-i-choose-the-best-foods-with-vitamin-b.htm

What cravings mean
http://www.wikihow.com/Avoid-the-Temptation-to-Eat-Unhealthy-Foods

Vitamin D and atrial fibrillation
http://www.livestrong.com/article/489912-vitamin-d-atrial-fibrillation-problems/

Magnesium and potassium deficiency and atrial fibrillation
http://www.ncbi.nlm.nih.gov/pubmed/15334158
http://www.livestrong.com/article/485033-vitamins-minerals-and-a-fib/
http://www.easy-immune-health.com/atrial-fibrillation-cause.html
http://www.mgwater.com/laf.shtml

Multiple deficiencies and atrial fibrillation
http://www.afibbers.org/atrial_fibrillation.htm

Iodine and atrial fibrillation
http://fibrillationatrial.com/

Shortness of breath
http://voices.yahoo.com/shortness-breath-vitamin-deficiency-2864123.html

Oral rehydration salts/solution/therapy
https://en.wikipedia.org/wiki/Oral_rehydration_therapy
http://rehydrate.org/solutions/homemade.htm
http://www.netdoctor.co.uk/medicines/100001940.html
www.who.int/ medicines/ publications/ pharmacopoeia/ Oralrehydrationsalts.pdf
Crohns Disease question. NEW
by: Lydia D.

1 of 2
Cathy,

Don't expect anything from the doctors. It is my year-long experience that they are next to useless when it comes to the nutritional aspects of Crohn's disease. Furthermore, most of them have never heard of short bowel syndrome (SBS)/intestinal failure/high ileostomy output syndrome/ileostomy diarrhoea/decompensated bile loss syndrome. I prefer the term intestinal failure to SBS because everyone thinks that SBS means that you have hardly any bowel left. According to Parrish (see last post - SBS article)you don't actually have to have any intestine missing to develop SBS. But, here again, the doctors are clueless. Chronic illness is very much a DIY job, although my new consultant has really made a tremendous belated effort to help me.

Gum bleeding, mouth ulcers, flaky skin, horizontal lines/white spots on nails, vision problems, tiredness, etc., can all be signs of selective malnutrition.

I just want to add that you should sit down and go through your medical notes and tabulate what they have done to you (Date/in- or outpatient/symptoms/diagnosis/treatment). If your terminal ileum is missing then you will need injections and infusions (see my last post). Even if you still have your terminal ileum, you may still need the injections and infusions.

The gold standard way of determining whether you have intestinal failure is by measuring output over 3 days and then measure the fatty acid content therein. There are very few centres that do this. http://medical-dictionary.thefreedictionary.com/Stool+Fat+Test

If you have more than 600 ml daily ileostomy output then you have a degree of intestinal failure (see Parrish). I reiterate that I have 1.7-2.7 litres output. For normal mortals, diarrhoea is generally over 200 ml fluid faeces. They did a stool fat analysis last year and I lose 5g fat per 100g stool - approximately 100g fat lost each day - this is steatorrhoea and not diarrhoea. I suspect that you are in the same boat - the not being able to eat chocolate (full of fat) is a clue.

I suggest that you buy a cheap plastic measuring jug and some Napisan or equivalent sterilising fluid/powder and measure your output over a week or so to determine what is happening. It is about the world's worst job, but somebody has to do it.

Generally doctors sit up and take notice when you present them with figures and charts. However, I repeat that virtually none of the doctors have heard of SBS. So you will have to take the supporting literature with you and highlight it with a marker pen. (continued...)
Crohns Disease question. NEW
by: Lydia D.

2 of 2

You most likely have smouldering or otherwise active Crohn's as well as everything else. It might be worth trying Entocort/Budesonide. For SBS in Crohn's ileostomy patients, 3 mg Entocort should be taken with every meal and not early in the morning as with the normal steroid regime because the modified regime takes advantage of the drugs anti-secretory effect. http://www.ncbi.nlm.nih.gov/pubmed/15714248 Unfortunately, I can only take 3 mg with breakfast because any more either gives me narcolepsy or makes me suicidal.

I want to emphasise that you should never take several multivitamin tablets in a day because the fat-soluble vitamins (A, D, E, K) are poisonous in fairly small quantities (over the daily recommended intake) - Google polar bear liver, vitamin A and dead explorers. However, this is not a problem if you don't have a terminal ileum - in this case you can throw the capsules straight into the toilet because the lack of bile resorption will prevent the uptake of the fat-soluble vitamins in viable quantities. If you have lost lots of ileum, this is a bigger problem than if you have lost your jejunum. The ileum can adapt, the jejunum cannot.

The water-soluble vitamins (8 B vitamins plus vitamin C) are not stored in the body to any great amount (except vitamin B12 in the liver 1-3 years worth) and shed in the faeces and urine. I mentioned the upper limit of 50-100 mg vitamin B6. You don't, thus, need to exercise the same caution with these vitamins.

http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

I think that I can guarantee that you will notice an improvement in your health over the next 6 months if you stick to a daily supplement regime and the required injections/infusions. Obviously your doctor should help you with this.

Lydia... NEW
by: Cathy

Lydia,
I am very touched by your concern and suggestions, and, the information that you sent to me. I must say that your information and seeing the meds you are on, is the first time, anyone and I mean, anyone, has suggested vitamins, salts for rehydration, etc. I take Lomotil 3 to 4 times a day, because of diarrhea. I, too, can not eat chocolate and pretty much what you listed.
I will definitely take your advice and read the articles. I am so grateful to you for sending them. I think I am surprised that my own doctors have not suggested to me, what you have.
Thank you very very much for caring. I wish you didnt live so far away. Perhaps someday, we will meet.
I look forward to hearing from you, again.
I will look up the articles now.
Cathy
Crohns Disease question. NEW
by: Lydia D.

1 of 2

Cathy, I am located in Europe.

I must point out that I have developed a mild dyslexia because of my meds (Opium, Budesonide aka Entocort, Omeprazole) and the intestinal failure (aka short bowel syndrome - SBS) which I think you have. Bear with me wrt loony sentences.

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. http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/September2005.pdf

Budesonide has been shown to help Crohn's patients with high intestinal output syndrome. http://www.ncbi.nlm.nih.gov/pubmed/15714248

I would like you to look up the side-effects of all your medication and list those that you are now experiencing. For example, Ambien could be causing some of your current symptoms. http://www.drugs.com/sfx/ambien-side-effects.html

Personally, I believe that your neuropathy is due to vitamin and mineral deficiencies. Vitamin B12 deficiency in particular causes neuropathy and any damage done may be irreversible if not addressed in a timely fashion.

You might recognise some of your symptoms here:
http://www.dailymail.co.uk/health/article-1197979/Heartburn-pills-wrecked-life-How-antacids-effects.html

If you are missing your terminal ileum or have disease at the terminal ileum, you will not be able to absorb vitamin B12 in the gut. A way around this is to take it sublingual form (Amazon). You will also likely not be absorbing sufficient fat-soluble vitamins and fats. It would be useful to have your blood values checked, but you will read in the literature that blood values do not necessarily reflect what is going on in individual organs.

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

I despair of the doctors, most of which have little to no understanding of the effect of operations on intestinal absorption, nor the effect of diet on (most) illnesses and also of illness on specific nutrient uptake.

There is also the detrimental effect of medication on the uptake of nutrients from the diet to consider. For example:
http://www.dailymail.co.uk/health/article-1395028/How-medicine-draining-vital-nutrients-body.html

I am certain that you can increase your quality of life, but it needs you to change your diet and to start taking a whole load of supplements. I think that I can guarantee that you will feel better if you start taking supplements, but it may take weeks or months for the body to right itself after a prolonged period of bad nutrition.
(continued...)
Crohns Disease question. NEW
by: Lydia D.

2 of 2

I have about 2 litres (1,7 - 2,7 l) stomal output each day and am on the following:
- daily oral rehydrate salts (pharmacist),
- 400% daily vitamin B complex (8 B vitamins),
- daily vitamin C,
- daily 1000mg calcium plus vitamin D,
- daily 20 mg zinc (WHO recommendation for chronic diarrhoea),
- daily magnesium,
- daily copper (Sabona bangle),
- daily selenium (underactive non-Hashimoto's thyroid)
- 3-weekly fat-soluble vitamin (A, D, E, K) injections,
- quarterly vitamin B12 infusions,
- 1-2 Boost/Ensure astronaut drinks.

As listed previously, I eat small nutritious meals throughout the day, no sweets or white/milk chocolate (a small piece of black chocolate allowed), no colas/sodas/fizzy water, no fresh fruit or vegetables.

I take half the B vitamins after breakfast and half after lunch. If you take vitamins later in the day you will not sleep.

It is likely that your atrial fibrillation may be due in part to potassium deficiency. I suggest that you buy LoSalt (www.losalt.com) and eat bananas. It is recommended for those with diarrhoea to base their diets on the BRAT (banana, rice, apple mousse, toast/tea) diet.

Your lack of sleep is likely to be due to your poor diet and avitaminosis. You are suffering from malabsorption. Most morbidly obese patients suffer from malabsorption because of their bad diets. I have had a better quality of sleep since I worked out which vitamin and mineral supplements I needed to take (doctors are mostly useless here).

For years I was having to get up in the middle of the night to make myself another meal. Now, if I am careful, I can sleep 4-7 hours in a stretch without having to get up. I am chronically tired/exhausted, but my quality of life is higher than it was.

You need to have a source of calcium in your diet. I suggest that you buy lactose-free dairy products. I am sure that Walmart has them. If you are eating fish and chicken daily, then you will be getting some calcium. However, a supplement is likely to be necessary.

Calcium deficiency does not only lead to osteoporosis - frequently seen in Crohn's patients with chronic diarrhoea and steroid treatment - but it also is one of the many causes of depression.

I recommend that you consult a nutritionist who has experience with Crohn's and knows Dr. Jeejeebhoy's publications.
Lydia NEW
by: Cathy

Lydia,
I am not on any crohns medications. They were stopped several years ago, because they were not effective at all. Humira injections, methotrexate injections, all the crohns meds, you name it...I was on it.....didnt work. So, my docs stopped them. They only made me feel like crap...to be blunt.
I am on pain medication for crohns neuropathy that has developed in my legs and feet. I take heart medication for atrial fibrillation, and, also, take ambien because I wasnt sleeping. I average about 3-4 hours of sleep at night.
I am lactose intolerant, so, you know that I dont eat/drink any dairy. I can tolerate some cheese.
I limit red meat, because I, too have trouble with the digestion aspect. I stick with bread products...2 reasons: bulk me up and the diarrhea slows down, and, I can eat it and it doesnt make me sick. Chicken is okay, potatoes are limited...etc. I dont eat much, but, am dealing with weight issues becauses of being on prednisone (steroids) for many many years...from 1968 until 2004. A very long time.
Anyway, again, thanks for the information. I will check it out. I really appreciate your help, Lydia. Do you mind if I ask where you are located? I am near Baltimore, Md.
Talk to you soon.
Cathy
Crohns Disease question. NEW
by: Lydia D.

It is a pleasure to be able to help you. I am just sorry that you have been messed around so much.

You might want to also consider the following. Ideally you should discuss everything with your doctors, but it is my experience that they know nothing about nutrition and Crohn's. Nutrition is key in Crohn's and I can't help wondering how much of our food is making us sicker:

- Calcium and vitamin D*,
- Magnesium (essential for bones)**,
- Iron and vitamin C (blood),
- Fish oil capsules (fat-soluble vitamins)***,
- LoSalt****,

*Do not overdose on calcium as this can lead to calcium deposits in the arteries. If you eat dairy and do not have much diarrhoea, the calcium supplement will not be necessary - or take only have a fizzy tablet.
**Can exacerbate diarrhoea.
***Caveat: the FDA says no more than 3 g per day. However, consumer tests have shown that few of the fish oil capsules contain mercury.
****http://www.losalt.com/LoSalt-Merchandise.html

I have to puree all my food. I can't eat read meat because it is difficult to digest. I avoid the following: all artificial food additives, spices, colas/sodas/fizzy water/sweets/chocolate.

I base my diet on chicken/fish/shellfish, potatoes/rice/noodles/couscous, broccoli/cauliflower/pumpkin/parsnip/turnips, lactose-free milk/tomato juice with bicarb added to neutralise the acid.

This is almost a Crohn'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

If you come back to me with a list of meds and a list of current symptoms (use the CDAI as a guide), I can have a think about what could help you. Obviously, I can only help you from the experienced patient point of view and give you some suggestions of points to discuss with your doctor.

Look up the clinical practice guidelines in your country for IBD/Crohn's. For example:
http://www.worldgastroenterology.org/global-guidelines.html

I also recommend this paper on "The Mourning Process in Chronic Illness": www.human.ritsumei.ac.jp/hsrc/resource/series/01/pdf/01_96.pdf

If you have some spare time, then I suggest working your way through this thread. I have responded to a poster and given him all the references that I would like to give you: https://www.crohns-disease-and-stress.com/what-happens-after-you-take-medication-for-crohns-disease.html
Lydia NEW
by: Cathy

Lydia,
Thank you for your note. I can see that you are dealing with issues similiar to mine. Having this disease since 1968, I think I have had just about everything/anything that can be associated with it. Dealing with an ostomy that wasnt done correctly in the first place (1983), and, then, having many many surgeries due to other complications connected with the Crohns, has made me a bit of a skeptic and very unhappy due mainly to the lack of "understanding" and patience. You touched, briefly, on this, and, I must agree that chronically ill patients are not dealt with properly. I have decided to be even more careful what I eat. Most "raw" foods cause blockages and a great deal of pain. Therefore, I dont eat uncooked foods. What I can eat is very limited and I feel like I am always eliminating something from my diet. Anyway, thank you for the suggestion of the B6...etc...vitamins. I will check them out at the Health Food Store nearby.
I appreciate the time you took to write to me.
Cathy
Crohns Disease question. NEW
by: Lydia D.

Dear Cathy,

I've had Crohn's symptoms ever since I can remember, but was only diagnosed at age 32 - prior to that I was diagnosed with psychosomatic disease. At diagnosis it was clear that my colon needed to be removed and a year later it was. So I have a permanent ileostomy. I have also had fistulas including enterovaginal and the disease has caused severe damage to my ovaries and uterus.

I also ended up with gangrenous intestine due to smouldering Crohn's and adhesions. I have had a total of 9 operations - 5 of them major. I now have intestinal failure or short bowel disease and, like yourself, am struggling and at a loss with most of my doctors. There is very little interest in chronically ill patients because we are too complicated and don't result in any success stories.

Is MRSA your main problem at the moment? Is that what they hope to operate out or have you severe Crohn's symptoms as well? The combination of MRSA and severe Crohn's would be my worst nightmare.

The Japanese put children on a liquid only diet - Boost or Ensure equivalent. I can recommend that you take a vitamin B complex for pregnant ladies. That should strengthen your immune system and you don't run any risk of overdosing because the maximum dose is dictated by vitamin B6 (50 to 100 mg per day). It may take months before you notice an effect. Zinc is also important for the immune system. The caveat is that zinc removes copper from the body and I wear a non-magnetic Sabona copper bracelet to counteract this (Amazon)

http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

This paper has excellent information on the gut and how to modify your diet to manage diarrhoea. http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/September2005.pdf

Patient diary
Keep a patient food/mood/symptom/medication/supplement diary. This will help you better monitor your health and help you to communicate with your doctors. http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

CDAI
http://www.ibdjohn.com/cdai/

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

The comparative pain scale (no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm
Response to Adam's comments NEW
by: Cathy

Adam,
Thank you for taking the time to post. I have had an ileostomy since 1983, which was a disaster from the start. However, I must add that it was somewhat "better" than what I am dealing with since 2006. There are numerous things I cannot eat, due to blockages, so, am very cautious/careful about what I put into my mouth. Due to being on steroids for many years, the pounds packed on, and, now I struggle to get them off. Being the age I am, its much harder, but, I am trying!
Thank you for taking the time to send the link and to send some encouragement.
The specialist I saw at Hopkins(home away from home) is now at Mercy Hospital in Baltimore and suggested surgery....as did my gastro guy. NO way will I ever do that, again. I have seen many many doctors over the years and everyone has told me I am "the one case that is not the norm". hahah....figures....anyway, thanks, again. I will check out the site.
I wish you well, too, in your dealings with the "beloved" Crohns.
Cathy
Diet helps NEW
by: Adam

I was diagnosed with Crohn's at 17, I am now 40. I have had 2 surgeries. After reading your post, I have come to realize that I am very lucky to have minimal symptoms, and can live a halfway normal life. I am suprised that the doctors want to do surgery again. I have seen several different doctors through the years, the last thing they want to do is operate and remove more intestine. I had a fareup last year and had to be admitted to the hospital(internal bleeding). I started doing some research on IBS,Colitis, and Crohn's, and how nutrition plays a big part in how your gut works. I foud an article on the website below, and it has seemed to help me. I also take a probiotic every day(Acidolphilus). That balances out the good bacteria with the bad bacteria in your gut.

How much intestine do you have left? Do you have a colostomy bag? I can relate to what you are going through, although it seems you have a much worse case of Crohn's. Take a look at the link below & see if it is of any help. The problem with Crohn's, is the doctors don't know what causes it, so they just want to push medications to suppress your immune system, which is never a good thing.

Hopefully this link will help you out, I know it helped me, & after reading your post, I see that I have a pretty mild case of Crohn's. It can't hurt

http://www.karenhurd.com/pages/healthtopics/specifichealthconcerns/ht-shc-thewhitediet.html

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