Microscopic Colitis

@pichulita
I don’t know how my message doubled it’s self….. But THANK YOU for your response! It seems all the Drs I have seen don’t know what to do and they don’t know what to do. I was diagnosed in 2022 and Dr seems to hardly understand…..
Before the MC suddenly hit in August 2022 I am THANKFUL I had put on some extra weight. I have lost 55 pounds and I pray I don’t loose any more. If I do…. I suspect I will be in the hospital and little they will know to do or possibly that might be the only way I will get nutrition help. It’s hard to thrive when we lack nutrients that are obvious to everyone aside the Drs we see.
And most are hard to get an appointment with. I tried an appointment with the Mayo Clinic but was denied as my insurance is out of network…..
Good luck to you. You found hope….. surely I will too.
Sincerely
Teresa

I feel I am getting PTSD or certainly extreme anxiety!!!! I don’t understand why MC is so underrated by GI specialists and PCPs when they have eyes and scales and see we are loosing weight so much!!!!!
I eat gluten free/including soy of course ….. plus no dairy, no eggs (sensitivities). I panic if I seem to think a flare is in the making!!!!! Oh me Oh my……
Thank you friend….
Teresa

Good morning, Margot! Thanks for the food list. It's helpful to see what others can tolerate.
My diet has been more on the carnavore side because vegetables and fruit seem to tear me up. I miss my salads!
If I can manage to get to the point of remission, my gastro wants me to stay on 3 mg budesonide per day. The good news is that after all these months, I'm starting to have some good days. There is hope! (But last night I had a setback, so we'll see where it goes)

I am 68 and was diagnosed with collagenous colitis 5 1/2 years ago. Was put on Budesonide which helped a lot. Did the gradual taper from 9mg to 6mg to 3mg and then none. Did ok for a couple of weeks or so but relapsed and did the whole routine again with an even longer taper. Relapsed again and have been on 3 mg daily ever since.
Have read that long-term use is ok, but wish I could get off it completely. My gastro dr is pleased with my status and doesn't want to mess with the status quo. She said if you go off it and then go back on, it might not be as effective. I did some research and found that stated - the efficacy can decrease.
I am wondering if anyone has experience with going off Budesonide and then back on again, and are there other long-term Budesonide users out there. I have not noticed any concerning side-effects while using it.

Hi Sarah,
I guess I am a Long-term Budesonide user.
I developed frequent diarrhea about 2 years ago, had a colonoscopy, was diagnosed with microscopic colitis (October 2023) and was put on Budesonide 3 mg daily. It was amazing, and I had almost immediate relief. I have been on this same dose daily since that time. I have occasional short term flares (1 - 2 days) but recover quickly. I usually have 1 BM in the morning, normal type, and am free to live a bathroom-free day after that. The only side-effect I have is some bruise-type red areas like a bruise, but without any pain, on my arms. I was told this was because Budesonide is a prednisone. Since it does not bother me, I have not tried to get off B. but just live with it. Margot (85 yo F)

Hi Sarah,
I guess I am a Long-term Budesonide user.
I developed frequent diarrhea about 2 years ago, had a colonoscopy, was diagnosed with microscopic colitis (October 2023) and was put on Budesonide 3 mg daily. It was amazing, and I had almost immediate relief. I have been on this same dose daily since that time. I have occasional short term flares (1 - 2 days) but recover quickly. I usually have 1 BM in the morning, normal type, and am free to live a bathroom-free day after that. The only side-effect I have is some bruise-type red areas like a bruise, but without any pain, on my arms. I was told this was because Budesonide is a prednisone. Since it does not bother me, I have not tried to get off B. but just live with it. Margot (85 yo F)