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Collagenous Colitis Relapse. Your experience with this?
Inflammatory Bowel Disease (IBD) | Last Active: Jan 10 6:43am | Replies (23)Comment receiving replies
Hi again. I'm a nurse so read everything out there on collagenous colitis. Initially, started on 9 mg/day for 4 weeks, then 6 mg/day for 4 weeks but only made it 2 weeks so GI started me back on 9 mg/day for 3 weeks. Just started 6 mg/day last week, suppose to be for 3 weeks also but pain and diarrhea slowly sneaking in. If it continues, I'll need to call and see what I need to do. What a nighmare. The fatigue is brutal. Nurses are use to running for 8+ hours!! I'm still working on diet. Can't have any dairy at all and very little of my "evening" sips of red wine. I buy immodium by the bucket load because I can't go out to dinner without taking it 1-2 hours before we eat. After all I see, I am thankful it's not worse. 🌻
Replies to "Hi again. I'm a nurse so read everything out there on collagenous colitis. Initially, started on..."
This go round I was put on 9 mg for 2 months and then we will try to taper. I stopped all NSAIDs when all of this started last September. Went off dairy for about a month with no improvement. With my latest relapse I decided to go gluten free and see if that allows me to taper off the Budesonide or at least get to a lower dose. Seemed like it took the 9 mg dose longer to really take effect this time.
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I had 7 mos of house arrest from it. Couldn’t get enough control with lomotil or Imodium to risk going out. Had C-diff along the way. But I’m one of the lucky ones in that Budesonide worked within 5 days. I stayed on the 12 wk course and haven’t needed it again. But I also stopped all of the key known medication triggers NSAIDs, PPIs, SSRIs, , and haven’t relapsed. Good luck!!