I am looking for others diagnosed with microscopic colitis

Posted by Kristi Motch @kristimotch, Jun 1, 2012

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.

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Profile picture for ndough @ndough

@mcdcm That’s the first thing I thought of. Unfortunately, our house is old and there are no outlets in the bathrooms. ( There’s probably only one or two per room!) We would need to have the entire bathroom rewired. The lights are over sink and there is an outlet on the side of lights, but it only works when you turn wall switch on. And then there’s the 3 foot above floor minimum for bidet outlet rule. I don’t think we can afford it. It would be cheaper (hah) to buy a regular bidet.

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@ndough You only need power if you want heated water. Tap water temperature is fine. A splitter comes with the bidet seat and connects to the feed for the toilet.

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Is fresh water being used or water from the toilet/tank?

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Profile picture for ndough @ndough

@mcdcm That’s the first thing I thought of. Unfortunately, our house is old and there are no outlets in the bathrooms. ( There’s probably only one or two per room!) We would need to have the entire bathroom rewired. The lights are over sink and there is an outlet on the side of lights, but it only works when you turn wall switch on. And then there’s the 3 foot above floor minimum for bidet outlet rule. I don’t think we can afford it. It would be cheaper (hah) to buy a regular bidet.

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@ndoug
Someone sent in a message indicating the electric connection is used only to warm the water, suggesting that you could decide to put up with room-temperature water for cleansing. I don't know if this is true, but you might ask the manufacturers on the internet (try Amazon?).

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Profile picture for mcdcm @mcdcm

@ndoug
Someone sent in a message indicating the electric connection is used only to warm the water, suggesting that you could decide to put up with room-temperature water for cleansing. I don't know if this is true, but you might ask the manufacturers on the internet (try Amazon?).

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@mcdcm Yes, I do want to find out because what a wonderful thing to have! I guess I want to know if the water is tap water (brrrrrrr) or toilet tank water (not the cleanest). A conundrum 🙃

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I have recently been diagnosed with lymphocytic colitis. Nor unsurprisingly the gastroenterologist just wanted to give me a prescription for steroids (which I haven't filled) and made no mention of diet. Does anyone have a recommendation?

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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.

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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.

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Sorry meant to say what are the side effects?

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Profile picture for volleyballfan @volleyballfan

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.

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@volleyballfan I too have both Microscopic Colitis and EPI. My doctor couldn’t believe that I could be unlucky enough to have both. I am on Creon and take 3 mg Budesonide 3 times a week. This seems to keep the diarrhea at bay. This is my routine after 18 months of finding the correct maintenance dose of Budesonide. Started out at 9 mg a day.

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Profile picture for ndough @ndough

@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.

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

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