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Crohn's Disease Forum

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Joined
Nov 29, 2023
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Hello,

48 YO female here with 10 year history of chronic diarrhea (urgency, frequency, water consistency, waking me up in the middle of the night, etc.) I'm hoping someone on this forum may have some insight to help control my symptoms. Here's a run-down of (some of) my diagnoses/treatments over the years:
  • 1st colonoscopy in 2017 showed "moderately increased chronic inflammation" but no definite diagnosis.
  • Tested for SIBO (both methane and hydrogen positive) 2018 - and have been treated multiple times with Rifaximin with limited response.
  • 2nd colonoscopy in 2022 showed Collagenous Colitis. (Treated with Budesonide 9mg for 1 year (moderate response) - but was never able to wean down to 'maintenance" dose of 3mg without full symptoms returning. GI Dr started me on Cholestrymine to help wean off steroid, but that was ineffective. Started Mesalamine with Budesonide for major flare and sent IBD labs.
  • IBD labs showed 'Suggestive of Crohn's Disease with high risk of aggressive disease behavior' (gASCA = 80, ALCA = 63)
  • CRP (and all other labs) have always been normal.
  • MRI completed 2 months ago which showed nothing! (other than 'Mild thickening of the rectosigmoid colon is likely related to underdistention. No definite imaging signs of active gastrointestinal inflammation or stricture')
Of note, when MRI was completed, I was having my one and only time of 'remission' (ie I had a week of only 1x solid BM daily vs my current 15 watery BMs daily). I had just recovered from Covid and had finished a course of Paxlovid (since I was considered immunocompromised due to long term steroid use). Could the antiviral have put me into a short-term remission? Why are my labs indicative of Crohn's but my MRI is clear?

I'm miserable and at a loss (and so is my GI). Any ideas, suggestions, insight would be greatly appreciated!
 
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