Microscopic Colitis Relapse Rate Question

The biopsy taken during my last (second) colonoscopy showed this condition. I had a few instances of diarrhea, but mainly constipation. I was given the option to go on that med, but opted to hold off, since I’m not currently having symptoms. My episodes were infrequent and I haven’t had any since the biopsy. And, I still have 2 coffees per day, a couple of glasses of wine on the weekends and some gluten. I do limit raw veggies, which set it off in the beginning.

I have been taking Budesonide for just over a year for Collagenous Colitis and experienced relapses during attempted tapers from 9 mg to 6 mg. We took the last taper attempt more gradually, alternating 6 mg and 3 mg doses and I was able to get to a 3 mg daily dose this past September. Since then, I've had two flares that I managed with Imodium and lasted no more than a day. My GI considers me in "maintenance" right now, with the daily 3 mg of Budesonide and 1/2 of an Imodium tablet daily at night. I avoid gluten, minimize alcohol consumption to a small glass of wine on weekends and only with meals, and am very careful with raw vegetables. I also need to watch beans - they will set me off unless I soak dried beans for 24 hours and then cook them so that they are very soft. My recent retest for fecal calprotectin showed that my inflammation is now in "normal" range. All in all, I'm grateful. My test GI appointment is in March and we will likely address whether to attempt to get me off Budesonide then.

Thank you for sharing. I was able to get to 3mg every other day and stayed there for a year before getting off completely. My only caution is to challenge the doctors who say Budesonide is safe for long-term use. They have no clinical proof of that beyond a couple of years - only anecdotal evidence. In my case, I did a bone density scan when I started the drug and another after two years. I lost 12% of my density during that short period which is significant and if allowed to continue, dangerous. Make sure you are monitoring for that if you decide to stay at 3mg for the long term.

Thank you for sharing. Your experience is encouraging!

Because I have osteopenia, I have been getting DEXA scans every two years. The last one, done this past April, showed an improvement in my bone density after 6 months on Budesonide. On my doctor's recommendation, I have been supplementing with 1500 mg calcium daily since starting Budesonide. For the first time since I started getting DEXA scans in 2012, my T scores are normal everywhere except in my left wrist. Next scan will be in April, 2026.