Anybody diagnosed with microscopic colitis?

Posted by bobthebuilder54 @bobthebuilder54, Oct 12, 2011

Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie

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Profile picture for mcdcm @mcdcm

@ndough You should look into a toilet-seat bidet, which is easy to install and hugely helpful. I've had mine for three years with no problems. They ran about $300 when I bought it -- could be more now. But if I had to replace mine, I would gladly pay 3 or 4 times that much. Truly a lifesaver for anyone with MC. Cleans gently and completely both front and rear. Check it out on the internet.

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@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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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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Profile picture for Kristi Motch @kristimotch

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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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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Profile picture for Kristi Motch @kristimotch

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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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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Profile picture for Kristi Motch @kristimotch

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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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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Profile picture for Kristi Motch @kristimotch

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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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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Profile picture for Kristi Motch @kristimotch

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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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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