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Does anyone suffer from Crohn's or colitis?
Autoimmune Diseases | Last Active: Nov 17 8:48am | Replies (111)Comment receiving replies
Hello, I was treated for IBS 12 years without success. 2023, flair prohibiting even leaving my home, CT indicating inflammatory colon, Crohns, IBD or cancer supported by testing. Colonoscopy repeated, pathology- Microscopic Lymphocytic Colitis. Budesonide 20 weeks due to relapse (I did well on Budesonide 3 mg/ daily however providers will not prescribe due to adverse effects). Curently taking Cholestryramine, 3 x daily. I have had 3 second opinions on treatment. All say remain on Cholestryramine. I have followed everything, diet, stress reduction, pre and probiotics and I am not doing well. Liquid stool, intolerable pain, fatique. Seeing counselors. Family little support. My quality of life is dismal. I am reluctant to try biologicals due little research, poor efficacy and high adverse effects. I am open to input. I am grateful for this forum and hope to hear back.
Replies to "Hello, I was treated for IBS 12 years without success. 2023, flair prohibiting even leaving my..."
I add my welcome @lss111. I moved your post to this existing discussion so that you can read previous posts and connect easily with others living with Crohn's and colitis. See this link:
- Does anyone suffer from Crohn's or colitis? https://connect.mayoclinic.org/discussion/does-anyone-suffer-from-chrons-or-colitis/
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Oh sweetie I hear you. I was diagnosed in 2023 with a Yersinia infection and received antibiotic. That gave me C-Diff, so in September, 23, I received a new antibiotic. Still with diarrhea, my new Gastro doc scheduled a colonoscopy and I was diagnosed with the other flavor of Microscopic colitis - collagenous colitis. For me, the medication triggers seem to be non steroidal anti inflammatories (ibuprofoen) and proton pump inhibitor (nexium) - [identified by
stopping those and a Couple of other known triggers and then adding them back one at a time. ]
I was given Budesonide - a colon-specific steroid that doesn't have the generalized side effects of other steroids. It was a miracle delivered in 9 weeks
Life was great. For the first time in almost a year I was confident in leaving the house.
But I have relapsed almost 3 months ago - possibly due to nsaid eye drops for a month after cataract surgery - or as my Rheumatologist with a PharmD believes - due to nothing specific. Budesonid didn't work this time. So while i was waiting for an appointment with my Gastro, I researched in National Institute of Health (NIH) for treatment research in cases of MC relapse when budesonide fails to help.
They researched giving three 262mg Pepto Bismol capsules three times a day and a restrictive diet of very low fiber, fat, and sugar - think white bread, scrambled eggs, white rice, bananas, soft cooked, low fiber veggies like green beans, white or sweet potatoes, carrots - all no fat (tho I use some plant based butter in small amounts). Drained, no sugar added canned fruit (like peaches and pears) Or stewed apples, no sugar and no peel. I eat small amounts of soft cooked white chicken, baked salmon or mild white fish. I can also have a ground turkey patty and I get baked lean ham from the deli i can roll up to have with eggs or rice. I bought a rice cooker and make rice every other day.
This is my diet and it plus the pepto bismol has helped tremendously. I would eat gravel if it helped. I see my Gastro tomorrow - i will let you know what his thoughts are. But i strongly recommend considering a colon calming diet and Pepto Bismol.