Anybody diagnosed with microscopic colitis?
Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie
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Follow up on my husbands collagenous colitis that no longer responded to pepto bismol. His doc said try Imodium. If it works just stick with that.
Gastroenterologist diagnosed me with lymphocytic colitis. This was after my 3rd colonoscopy and special test to detect blood which did show up microscopically. I had gall bladder surgery 4 years ago and have had persistent diarrhea since surgery. Also have had dramatic loss of weight from 130 to 98 plus extreme weakness. Would appreciate any sharing of treatment or medication that helps deal with this problem.
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1 ReactionHave you tried OTC Imodium. My husbands diarrhea subsided and hasn’t returned after three pills. Doc said if it works keep it up.
@petepat3234 - I was first diagnosed with collagenous colitis 10 years ago- out of the blue. None of the OTC meds did more than allowing me out of the house for a couple of hours. At one point it was so bad I could not leave my room/ bathroom. The GI doctor then treated me with methotrexate. I was also extremely weak from loss of fluids and electrolytes. I drank Gatorade and Pedialyte. The illness returned after a year or two- waxing and waning, leaving me very exhausted and weak at times. Budesonide took the edge off symptoms and prednisone made me feel normal- until I stopped it. Finally, 4 years ago, I was put on immunosuppressive Imuran for several months. It was rough but it worked.
I ended up with normal function, except IBS, but feeling extremely exhausted. In my mind it is the result of chronic”acute” stress for years when there was pain/ discomfort every day - like being burned out.
I was diagnosed with microscopic lymphatic cystosis after 3rd colonoscopy. This occurred about 3yrs after gall bladder surgery. Still have diarrhea, 3 to 4 times a day.
@petepat3234 - it sounds like you still have the colitis inflammation- especially if you feel weak too. Has your doctor discussed any immunosuppressive medications?
I've been wondering about the immuno-suppressive medications. I took budesondide for 2 or 3 years until my skin was so thin it would just peel off! I've gone off it, but the usual "col" what-ever-they're-called pills and powder just DON'T do the job. I've had this for about 20 years. I've had cancer twice, which is the reason I haven't done one of the new ones, but I'm wondering if you can take it anyway and just be closely monitored. I'd like to hear from anyone who might know about this conundrum. Thanks.
My GI docs (there have been several) have just seemed to try, over the years, different meds, sort of trial and error, but most don't help or have nasty side effects (budesonide). Does anyone think I'd do better to go to the Mayo clinic and get a full work-up, where they are absolutely up on the latest drugs, clinical trials, etc.? I'd be willing to go to Rochester (from Seattle) if it'll be worth it. After 20 years of this, I feel like I'm just giving up life altogether and not even trying to actually GO anywhere. I see most of you agree to how depressing it is. I would go there, also, to get more information on the plant-based diet, etc.
I had a similar experience with an anti-biotic...it set off my worst symptoms again. I'm still trying to get it under control. I took budesonide for a long time, until the side effects became too bad, and when I went off it I found out how your symptoms come right back. I'm working with my GI doc to try some less invasive stuff, but if that doesn't work, I'll probably go to the Mayo Clinic when the weather gets better.
I've had MCS (multiple chemical sensitivities) since 1990, which is related, in my experience to people who have Chronic Fatigue Syndrome, Fibromyaligia, and even Sjogren's syndrome, like my sister has. We share a lot of the same symptoms. I also took Aleve for a long time, which could have caused it. Unfortunately, the LC is linked into my incontinence, but ONE THING AT A TIME!