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Crohn's Disease Diet


Message 18 of 27 Previous Next

Hi Cheryl! I'm new to this message board. I just read your message and my story is very similar to yours: I am a 47 year old woman who was diagnosed with Crohn's Disease in 1974, after months of tests for abdominal pain, diarrhea/ constipation, weight loss, nausea, loss of appetite. The tests kept coming back negative, so it seems like everyone was trying to tell me it was just all in my head. (If it was all in my head, then why did I go from 130 pounds before pregnancy to 90 pounds after pregnancy?) I had just given birth to my first child in Nov. when I was having all these symptoms, so my doctors kept thinking my problem was related to my pregnancy - female problems. It wasn't until they decided to do exploratory surgery (thinking they would have to do a hysterectomy) that they discovered I had Crohn’s Disease (back then it was called Regional Enteritis), and my intestines were perforated. They did a resection, removing about a foot and a half of my intestines between the small and large intestines. From the time of my surgery in 1974 until about 1989, I had chronic diarrhea, sudden urgent needs to have a bowel movement (excuse the graphics, but "explosive diarrhea" (many times right during the middle of a meal - what I was eating was just passing right through my system as I was eating it). I would also have a lot of pain with these bowel movements, with nausea and sweating. I had seen many doctors during that time (mostly Army doctors because my husband was in the Army during that time) and none of them were able to offer me any help. Then, after he got out of the Army and I got a job, many of my co-workers complained that I spent too much time in the ladies room, so after explaining my medical condition to my boss he suggested I get a note from my doctor. It was then that I was referred to the local gastroenterologist who explained to me the reason for my chronic diarrhea was that the part of my intestines that were removed were the part that absorbs bile salts, so now since my intestines didn't perform that function, the bile salts caused chronic diarrhea (this is referred to as “bile salts diarrhea”). So my doctor started me on Questran (a powder that you mix with liquids - orange juice was the best - specifically marketed to lower cholesterol) but it bound up the bile salts in my intestines so that my waste would stay in my intestines long enough for the liquid to be absorbed and then produce "normal" bowel movements. What a godsend!!! I love my gastroenterologist!!! The Questran was great for relieving my diarrhea, but it was a nuisance to have to mix the powder with liquid all the time - especially when away from home - and then my doctor said there was a new product that came in tablet form which he prescribed for me. It, too, is marketed initially for lowering cholesterol, but works as a binding agent on the bile salts. Its called Colestid. It's so much more convenient - especially when away from home. The only drawback - if you can call it that, is that they are huge tablets and I take two twice a day. But I swear by the stuff!! I'm also taking Asacol - 3 tablets three times a day. I've just gone through a very stressful time (separation from my second husband who was abusive) so the stress had exacerbated my intestinal inflammation, so my doctor had increased my dosage. I'll be going back to 3 tablets twice a day in about six months. The Asacol is great, too, as it really helps control the inflammation and thus cuts down on the irritation and pain. I am also border-line anemic, so I get Vitamin B-12 injections every month. Also, in case anyone is interested in knowing, I had my second child after my resection surgery, and I had no problems at all with the pregnancy. Well, that's my story - and I have quite a few experiences I could relate about awkward situations when I've had the urgent need to use the bathroom when away from home. I'm willing to relate them to anyone who cares to share experiences. My “favorite” experience that I like to relate was the time I went to New York City with some friends and we were in the subway. All of a sudden out of the clear blue, I got “the urge”. This was before I was on medication to control the bile salts diarrhea, so I needed to get to a bathroom....and fast!!! Well, wouldn’t you know it, the ladies room in the subway where we were was all boarded up. I couldn’t use it!! So one of my male friends that I was with went into the men’s room and told the men in there that there was a woman outside who had a problem and needed to use the restroom immediately and would they mind stepping out for a little while so I could go in and use the men’s room! Can you believe it!?....they all came out WITHOUT ANY COMPLAINTS OR SARCASM so I could go in to use the men’s room! Needless to say, it was filthy in there – the toilets were disgusting, and there was no toilet paper. There was an old dirty newspaper on the floor next to the toilet, so thinking very quickly that I could use that to cover the toilet seat to sit on, I used it as a seat cover. I think I had some tissues in my purse (never leave home without them if you have Crohn’s) but I only had a few and I knew I would need them for the “clean-up”. Well, that's my story. Would like to hear back from you .....and anyone else who has a similar story. I'm also interested in hearing from anyone who has thinning hair and think's its related to their Crohn's in any way (ie: result of surgery eliminating the part of the intestine that absorbs the vitamins and nutrients that promote healthy hair and nails, side-effect of any medication, etc.)Have you found anything that will help restore a full, healthy head of hair?


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