I am looking for others diagnosed with microscopic colitis

Boy, you're lucky piemonte that you have a GI doc who listens! I saw my GI twice: once before Colonoscopy and tests and once after. Since then they don't check up on me. I have to call and it's like a fortress of anti-phone call. He's really good at what he does but he treats someone and moves on. When I read there were two types of MC, I called my GI to ask which one and they said there is only one. I should try someone else but our area is limited and they're so booked out. So I've been on my own. I'm now on Budesonide 3mg every 2 days. I'm weaning myself off. Then we'll see. I haven't changed my diet except that I try to eat as much as possible because I weigh 97 pounds but used to weigh 105-110. I go up and down ounces but have been at this weight forever. I live with frequent mild stomach ache. I exercise moderately.
Aren't you majorly constipated not eating any fiber? I don't go as often as I should, but I'm not constipated.
My MC showed up in my colonoscopy. He took a sample for 3 parts of my colon. Sometimes it doesn't show up?

Your GI should have taken samples for biopsy when you had your colonoscopy. Colitis will not necessarily show up in a colonoscopy.

I have recently been diagnosed with Microscopic inflammation of the colon on top of EPI. Doctors are not convinced I have EPI after a year being on Creon.
I have been put in a steroid, Budesonide 3 mg, for two months. Haven’t started taking it yet. Has anyone been on this snd what are the dude effects? Have been told to continue taking Creon.

I was diagnosed with lymphocytic microscopic colitis in June 2025. Before the diagnosis was confirmed, I tried keeping a very strict diet, no dairy, low fiber, chicken, fish, gluten free. It was extremely limiting and didn’t stop the explosive diarrhea.

I started taking budesonide in July. The symptoms immediately stopped. Currently I am on a maintenance dose of 3mg budesonide 4 days per week. This dosage is controlling symptoms. I am still eating a low fiber but have reintroduced low gluten sourdough bread.

I will see my GI doctor in December to discuss how to move forward. My GI doctor and the PA work closely together and listen to me.

The Microscopic Foundation has been a helpful resource. There hasn’t been a lot of robust research, which is very unfortunate for those of us who have MC.

@fmsvi did you even read my post? I’ve had MC for more than 35 years. 35 years ago most GI’s didn’t know what it was and/or how to diagnose it. The research that discovered it was in the late 80’s, maybe five years before I developed it. What was strange was that I developed it at an early age. I eventually did find out what it was through a colonoscopy where a GI did took several biopsies, but this was years later.

Ulcerative colitis definitely shows up in a colonoscopy.

Boy, you're lucky piemonte that you have a GI doc who listens! I saw my GI twice: once before Colonoscopy and tests and once after. Since then they don't check up on me. I have to call and it's like a fortress of anti-phone call. He's really good at what he does but he treats someone and moves on. When I read there were two types of MC, I called my GI to ask which one and they said there is only one. I should try someone else but our area is limited and they're so booked out. So I've been on my own. I'm now on Budesonide 3mg every 2 days. I'm weaning myself off. Then we'll see. I haven't changed my diet except that I try to eat as much as possible because I weigh 97 pounds but used to weigh 105-110. I go up and down ounces but have been at this weight forever. I live with frequent mild stomach ache. I exercise moderately.
Aren't you majorly constipated not eating any fiber? I don't go as often as I should, but I'm not constipated.
My MC showed up in my colonoscopy. He took a sample for 3 parts of my colon. Sometimes it doesn't show up?

@ndough I'm sorry, I did wonder about that. I know research into microscopic colitis is fairly recent.

Sorry meant to say what are the side effects?