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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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

anjalima | @anjalima | Aug 23, 2023
In reply to @luannr "I, too, have a diagnosis of microscopic colitis. Your post is informative and I will look..." + (show)
@luannr

I, too, have a diagnosis of microscopic colitis. Your post is informative and I will look into the Facebook group and this book.
I have found that cholestyramine first thing in the morning and one Imodium in the afternoon helps me. I agree on the fewer fruits and vegetables.

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I was diagnosed in April ( mild but OMG where is the nearest bathroom?) I used a half Imodium every 2-3 days which held me to “ normal” without a diet change. I really wanted was the cause of this out of blue onset. I reviewed ALL supplements with Doc and turns out I was taking Lipo Flavenoids for tinnitus ( which helped that) years ago and when I felt a new twinge of recurring tinnitus I began again. Turns out it’s a trigger for MC. Totally coincided with that restart of lipo flavenoid. I stopped and all MC symptoms abated by 7-10 days. Been a few months now. Ear not too bad either.

Check your supplements! If flavenoid is in your routine see if eliminating it will help.

Good luck

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rozy288 | @rozy288 | Aug 24, 2023
In reply to @ncb "My newest gastroenterologist in CO suspects microscopic colitis and prescribed Cholestyramine as needed, i.e., when urgent..." + (show)
@ncb

My newest gastroenterologist in CO suspects microscopic colitis and prescribed Cholestyramine as needed, i.e., when urgent diarrhea occurs. Unfortunately, scheduling of an upper endoscopy and a colonoscopy isn't until mid-November - when hopefully there will be confirmation of his suspicion or identification of some other diagnosis. [I have a long history of IBS with chronic diarrhea, polyps, SIBO, GERD, esophageal nodules, gastritis, hiatal hernia.] One thing that has helped me control diarrhea in the past was OTC activated charcoal (2 capsules) when Imodium, Pepto-Bismol, Kaopectate, etc. did not

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You sound like me … I have everything you have plus … 1000’s deep wet belching and constant churning gut . I’ve tried everything in 10 years. I mean everything!!! Many diagnoses, plus it affects my heart ♥️ palps . I can’t eat anything ( and I eat so clean and healthy) w/o suffering every day and night .
I’ll see my 6 th Gastro Dr in Oct . Praying 🙏 some how we can ease my suffering.
I’m sorry for any of us that have to go thru life like this . Takes all Joy out ….

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1 reply
ncb | @ncb | Aug 24, 2023
In reply to @rozy288 "You sound like me … I have everything you have plus … 1000’s deep wet belching..." + (show)
@rozy288

You sound like me … I have everything you have plus … 1000’s deep wet belching and constant churning gut . I’ve tried everything in 10 years. I mean everything!!! Many diagnoses, plus it affects my heart ♥️ palps . I can’t eat anything ( and I eat so clean and healthy) w/o suffering every day and night .
I’ll see my 6 th Gastro Dr in Oct . Praying 🙏 some how we can ease my suffering.
I’m sorry for any of us that have to go thru life like this . Takes all Joy out ….

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What misery! So sorry you are going through all of these awful conditions.

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cathyas | @cathyas | Aug 26, 2023
In reply to @ncb ""Uneasy" is definitely the operative word that I relate to and always with an eye out..." + (show)
@ncb

"Uneasy" is definitely the operative word that I relate to and always with an eye out for how far the nearest bathroom is, how far I'm traveling (we live in the Rocky Mtns), how quickly can I navigate, etc. etc.

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I can relate to traveling, but so far this year I have been to France, Tucson and Las Vegas - but still on Budesonide every two days - with no problems. But I always know where the bathrooms are. Cathyas

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cathyas | @cathyas | Aug 26, 2023
In reply to @magluchi "Diagnosed last fall with the same. Gastroenterologist put me on Budensonide x 3 per day and..." + (show)
@magluchi

Diagnosed last fall with the same. Gastroenterologist put me on Budensonide x 3 per day and then titrate s l o w l y down when diarrhea subsides. I am still taking 1 Budensonide per day for maintenance. Hope this helps.

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Thanks, this is helpful.

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cathyas | @cathyas | Aug 27, 2023

I am fairly new to this group also, but it has helped me knowing others are experiencing basically the same diagnosis. I am able so far to eat most foods, but I am still on Budesonide. I will be having a sigmoidoscopy next month and am hoping for some good news. I hope this group can help you and that you are able to handle this disease well.

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esra | @esra | Oct 27, 2023

Hello, I partially received this diagnosis. Actually, it is said to be partial, but the results showed that it was mild, I also had IBS, the doctor is not sure. Diarrhea increases these days, but turns into constipation in the afternoon. I recently had gastroenteritis and I still don't know how to resolve my diarrhea, IBS attack, or microscopic colitis. The pathology report is out and the result says this: Slightly increased levels in sections of ascending colon, colon mucosa samples, surface epithelium and crypt epithelium.
Lymphocyte entry is monitored. With trichrome, there is a slight increase in collagen in the subepithelial region. No additional findings regarding mucin were found. Although the findings are 'partial' support, if they are clinically compatible, it can be considered collagenous colitis. HK: Mucin, Trichrome. What awaits me now? The doctor prescribed Bizpomen. I am so afraid. I'm worried if it will turn into IBD.
The doctor didn't talk clearly but he said it came out once and we can't rule it out.

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