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.

@ejo
Your report is very interesting. What else are you doing to build bone density? I am facing similiar challenges of trying to balance osteo with microscopic colitis issues.

Thank you!!

@sgibson385 I do regular weight bearing exercises at a nearby gym. I take Barre, Pilates, and water fitness classes, using hand weights for all of these. I also do a short weight lifting routine at home on weekends. Latest DEXA showed a small decrease in bone density in my hip but I am still within range for Osteopenia and my doctor is not concerned.

I've had microscopic colitis for about 10 years; it wasn't a problem until after I got Covid and then Norovirus 3 years ago, with the start of flares. I began 9 mg Budesonide 12/24, tapering to 3 mg over several months. I tried going off it a year ago but flares started after 2 weeks. Turns out it was aggravated by AREDS2 that my eye doctor prescribed; I went off that in December. I've been off Budesonide for 2 months so far, no flares but not quite normal (loose but minimal liquid and 1x/day). I recently determined that I'm sensitive to coffee (along with GF cuz of celiac, and minimal oligosaccharides and legumes). Food logs are useful, and even things that you have been eating/taking for a long time could be new triggers. Controlling stress, sleeping enough, and aerobic and resistance exercise are also important. Budesonide side effects were mostly thinning my hair and the skin on my forearms (fine now). Pelvic floor exercises are useful for strengthening your pelvic and diaphragm muscles (gives more time to find bathrooms). If you haven't lifted weights before, getting a personal trainer allows you to gradually build up your strength, flexibility, and balance. Too many people at gyms lift incorrectly (I'm 72 and started lifting around 35 years ago). Great for bone density and preventing back and other injuries.