1. < Inflammatory Bowel Disease (IBD)
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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

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

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iloveacoustic | @iloveacoustic | Apr 18, 2025
In reply to @rosiet1976 "I was just diagnosed with microscopic colitis. I had diarrhea all the time. Since taking budesonide..." + (show)
Profile picture for rosiet1976 @rosiet1976

I was just diagnosed with microscopic colitis. I had diarrhea all the time. Since taking budesonide I don’t have diarrhea anymore. It’s a really good drug. My stomach pains have subsided. It’s a temporary drug. I hope the diarrhea doesn’t come back once I finish the budesonide. Ask your doctor about this drug. I hope things work out for you. Good luck

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I have the same diagnosis. I’m also taking the budisonide, though I wonder about the side effects. It has improved the stool, though certainly not normal yet. I’m tired, and my existing arthritis is worse, and not able to take any nsaids or meloxicam while using this. Well, nothings perfect right, at least the diarrhea is gone after 3 months of that😳.

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iloveacoustic | @iloveacoustic | Apr 18, 2025
In reply to @debe13 "I've been struggling for over four years with collagenous colitis and still have not found resolve...." + (show)
Profile picture for DebE13 @debe13

I've been struggling for over four years with collagenous colitis and still have not found resolve. I tried an elimination diet about a year ago for about 4 months and saw minimial improvement in symptoms and no improvement with the trips to the bathroom. I did not cheat and am very aware of all the hidden sources of gluten. This particular "diet" I eliminated all processed foods, and anthing with dairy, wheat, and yeast. How long did it take for you to notice that it helped? I am regretfully back on prednisone for the MC but have terrible eye burning and puffy feeling around my eyes along with dull stomach aches which I keep wondering if it's related to gluten sensitivity. I thought I would have noticed something within four months, now I'm begining to wonder if maybe I didn't stick with it long enough. I've been tested several times for celiac and it all comes back negative.

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I know this is an old post, but I’m curious to see if you’ve had any resolve. I have recently been diagnosed with collagenous colitis.

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free73kja | @free73kja | Apr 20, 2025
In reply to @rosiet1976 "I was just diagnosed with microscopic colitis. I had diarrhea all the time. Since taking budesonide..." + (show)
Profile picture for rosiet1976 @rosiet1976

I was just diagnosed with microscopic colitis. I had diarrhea all the time. Since taking budesonide I don’t have diarrhea anymore. It’s a really good drug. My stomach pains have subsided. It’s a temporary drug. I hope the diarrhea doesn’t come back once I finish the budesonide. Ask your doctor about this drug. I hope things work out for you. Good luck

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Well, while I agree it's a great relief from diarrhea from micro. colitis.....for me
after years on it, it began to damage my adrenal glands which almost shocked my doctor; as it's not supposed to involve other organs. SO, my body had to fight very hard to combat this. Consequently I can not take long term again. SO, I am in line to begin Remicade infusion.
I beg you all please insist on regular monitoring if you'll be taking Budesonide, especially long term

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free73kja | @free73kja | Apr 20, 2025
In reply to @iloveacoustic "I have the same diagnosis. I’m also taking the budisonide, though I wonder about the side..." + (show)
Profile picture for iloveacoustic @iloveacoustic

I have the same diagnosis. I’m also taking the budisonide, though I wonder about the side effects. It has improved the stool, though certainly not normal yet. I’m tired, and my existing arthritis is worse, and not able to take any nsaids or meloxicam while using this. Well, nothings perfect right, at least the diarrhea is gone after 3 months of that😳.

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Be careful, don't become complacent and read my remarks above!!

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rosiet1976 | @rosiet1976 | Apr 21, 2025
In reply to @free73kja "Well, while I agree it's a great relief from diarrhea from micro. colitis.....for me after years..." + (show)
Profile picture for free73kja @free73kja

Well, while I agree it's a great relief from diarrhea from micro. colitis.....for me
after years on it, it began to damage my adrenal glands which almost shocked my doctor; as it's not supposed to involve other organs. SO, my body had to fight very hard to combat this. Consequently I can not take long term again. SO, I am in line to begin Remicade infusion.
I beg you all please insist on regular monitoring if you'll be taking Budesonide, especially long term

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Thank you for letting me know. I had no idea it could damage your adrenal glands. Thank you for responding.

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free73kja | @free73kja | Apr 21, 2025

In addition, my gastroenterologist brought this up at one of the group's regular meetings. His associates were as surprised as his was, as Budesonide is touted as staying with the cofines of the colon. Little did they know, long term use would "allow" it to move outside of those colon walls.
However this may be a "fluke" as we say, I urge you all to be open and honest with your provider. Let them know that it did happen in Omaha NE.
I feel your issues with Microscopic Colitis, that's why I am so concerned for all of you (us)
Take care all.

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iloveacoustic | @iloveacoustic | Apr 21, 2025
In reply to @free73kja "Be careful, don't become complacent and read my remarks above!!" + (show)
Profile picture for free73kja @free73kja

Be careful, don't become complacent and read my remarks above!!

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Wow, ok thanks for the input. I hope you navigate that.

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free73kja | @free73kja | Apr 21, 2025
In reply to @iloveacoustic "Wow, ok thanks for the input. I hope you navigate that." + (show)
Profile picture for iloveacoustic @iloveacoustic

Wow, ok thanks for the input. I hope you navigate that.

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👍

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ndough | @ndough | Nov 6, 2025
In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)
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 don’t see any postings about CC or microscopic colitis on here.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 6, 2025
In reply to @ndough "I don’t see any postings about CC or microscopic colitis on here." + (show)
Profile picture for ndough @ndough

I don’t see any postings about CC or microscopic colitis on here.

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@ndough - hi, and welcome to Mayo Clinic Connect. I thought you might like to join this existing discussion on microscopic colitis, so I moved your post here. Hoping you can meet members such as @esra @cathyas @ncb @anjalima @rozy288 and others.

Will you share some of your story or the story of your friend or family member with microscopic colitis?

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