Repeat Collagenous Colitis "flare"

Im having same. I was diagnosed Sept 2022 and was on a 12 week course of Budesonid that was entirely successful. I quit taking PPIs and NSAIDs
No issues until end of April when i was having cataract surgery and taking nsaid eye drops every 4 hours for four weeks for each eye. And i began to have diarrhea again. It has been progressively worse - complete with incontinence and nocturnal episodes.
I did get budesonide again but it hasn't worked this time. I am tapering off and will quit this week. I see my GI doc the end of this month and we are going to explore what else it could be. Very depressed about it all.

Thanks for the response pb50. I'm going to contact my GI group tomorrow and see what they have to say. I'm concerned because I can't keep my weight at a healthy level. Am afraid to eat anything. Also, it affects daily living--hard to go anywhere because of potential embarrassing "problem." I had even asked my doc earlier this year if it's possible to stay on Budesonide but she said that is not an option.

I would like to know what your GI doc has to say when you go for your next visit. Hope you get some good answers.

I'm not losing weight now because it seems most of the colon calming food is higher carbs than my typical diet.

This is pretty much what I eat now

*Canned fruit not fresh
*Bananas
*Plain white rice
*Plain Potatoes
*White bread -low fiber (some have added fiber)
*Well cooked green beans, carrots, and other low-fiber cooked veggies
*Small amounts of soft or ground white chicken, turkey or fish
*Eggs made with minimal oil or fat

One more thing -if I take three liquid filled capsules of Pepto Bismol three times a day, I can make it well enough for a couple of hours after taking a dose to go to grocery store or doctor appointment and sometimes Church.

I was diagnosed last October and while Budesonide seems to control my symptoms, I have not been successful tapering off of it. I’m currently in my third attempt and am alternating 6mg with 3 mg. The best I have felt was while on 6 mg daily - I felt totally normal. I had forgotten what that feels like. It’s been very frustrating.

pb50 - Did you come up with the effects of taking Pepto Bismol capsules by trial and error or did your doc or someone else suggest it. I've been taking imodium PRN but will try the Pepto caps. Thanks. Faye

debhammel - Could you clarify how you weren't able to taper off Budesonide? Was it because symptoms returned? You said third attempt, did you go through to the end of the 3 months. The best I felt was the first 30 days (9 mg--3 caps/days) but I don't think it's possible to stay on that level. It was great--energy, no issues with BM, etc.)

Yes - on the first taper diarrhea returned after 5 days on 3 mg, although I really didn’t feel good while on 6 mg. The second time, I flared two weeks into being on 6 mg. This time, I was on 12 mg a full 3 months, then on 6 mg for 2.5 months and was on 3 mg with 1 Imodium at night from 6/16/24 but just didn’t feel good. My doctor suggested alternating days with 6 mg and 3 mg beginning July 1. Two weeks in and no diarrhea but my gut doesn’t always feel normal - somewhat achy and gassy. I’ll be contacting my Gastroenterologist on Monday to see what she thinks. We had considered putting me back on 6 mg on July 1 but I wanted to try alternating doses.

I researched National Institutes of Health to see what might have been studied as a treatment when relapsing after Budesonide

I will find the link and post it

Here you go. I have copied
The key points and insert here first. Then i included the link to the study. Lots of reading but I found it interesting

3 × 262 mg tablets po tid × eight weeks

Antidiarrheals

Bismuth subsalicylate
Bismuth subsalicylate is an over-the-counter agent used for various gastrointestinal complaints. It has been studied for the treatment of microscopic colitis, and been found to improve both clinical and histological activity of the disease over the short term, without significant adverse events (6,7). The long-term benefits of this medication are unproven, but it likely can be used effectively to treat patients with relapsing disease. There is a theoretical potential for bismuth toxicity with continuous use, so a regimen of intermittent use is preferred (8).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661290/