Anybody diagnosed with microscopic colitis?

@lisalucier Yes. I’ve had cc for over 35 years now. When it first struck (literally), I was a young mom, in my 30’s. Our son was about 5 or 6. The GI I saw was, and still remains, the very best GI I have ever seen, and I’ve seen a lot. (Why do GI’s hate women?). He was very thorough and even looked for other causes as well, like Lyme disease, etc. He said, to the best of his knowledge, I had some type of colitis, but not ulcerative. Definitely not IBS. He performed a colonoscopy and couldn’t find anything wrong. His suggestion was that it might be autoimmune. Fast forward over the years and every single GI I saw refused to believe I had colitis. Every colonoscopy came out perfectly healthy. Every diagnosis was “allergic to food” (I am lactose intolerant, but always have been and know to stay away from anything containing lactose) “IBS”, “you are acting like a hysterical female”, etc. The last GI I saw decided to biopsy several different sections of my colon while dong my colonoscopy. It came back showing I have collagenous colitis, most likely for years and years. I recently found out that it wasn’t until the late 80’s that scientists began researching different types of colitis. Before that the premise was that ulcerative colitis was the IBD in the lower bowel.
Mine has different triggers, and these can even change over time. At first for me, stress was the main trigger, and every summer if when it would come out of remission. Heat stress is the worst stress you can put on your body and I was car pooling around little dudes to their soccer games, tennis, swimming, etc.
My last GI wanted me to take Budesonide, but my pharmacist called me at home to discuss the many reasons why I should not take it. Women over 55 should not take it. Women with osteoarthritis and/or osteoporosis should not take it. Women with Hasimotos thyroiditis should not take it. All of the above are autoimmune disorders, and if you have any others, don’t take steroids! Also, there is a 50% chance of it working on mc and it normally takes 2 weeks before it kicks in. My flare ups last about 2 weeks, then they go back into remission.

So, when it does flare up (and there are so many things that can trigger a flare up, not just in me but everyone), I simply have to ride it out. It’s similar to the effects of the stuff you drink before a colonoscopy for me, but 24/7 for 2 weeks or more. I just drink a lot of Pedialyte, eat green bananas (that’s what I seem to tolerate this year, it’ll change), and I will absolutely lose 20-30 pounds in 2-3 weeks. It’s a horrible way to live.

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

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?