1. < Inflammatory Bowel Disease (IBD)
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How to manage microscopic (lymphocytic) colitis?

Posted by ferguson23 @ferguson23, Nov 9, 2022

What is the best strategy for handling this rare(?) condition? I have been diagnosed with this and have been given very little information as to how to manage the symptoms. Are flare ups usual? Can symptoms be controlled with medications? My biggest complaint is pain and have been investigated for pelvic floor pain, urologic type pain and MSK pain all to no avail. I think it is the colitis that is the cause of my unrelenting pain. Your thoughts? Suggestions?

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jsalkeld0 | @jsalkeld0 | May 16 12:12pm

I've been dealing with lymphocytic colitis for more than 20 years. None of the treatments (budesondide, Entyvio, lomotil, Infliximab, colesevalam, mesalamine, azathioprine) worked well.
Doctors kept telling me it would go away - it got worse.
Kept searching medical literature and discovered a couple of case studies of women with LC that didn't respond to other treatment doing very well on RINVOQ.
Got my doctor to prescribe it, have been on it 4 weeks and it works like a miracle drug. A real life changer for me. No more pain and frequent dashes to the bathroom, accidents etc.
Good luck.

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hoops17 | @hoops17 | May 16 2:02pm

@jsalkeld0 thanks for letting me know. how great that RINVOQ is working so well! I've been lucky enough so far with the Budesonide, but no one will make any guarantees about the length of remission, which makes it great to know about RINVOQ. here's to it continuing to work for you!

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cows1806 | @cows1806 | May 17 8:02am
In reply to @barb1954 "I have had lymphocytic colitis for 3-4 yrs now. I did well on Budesonide for the..." + (show)
Profile picture for barb1954 @barb1954

I have had lymphocytic colitis for 3-4 yrs now. I did well on Budesonide for the past 2.5 yrs but my sugars were going up due to cortisol elevation. this past September I was taken off the budesonide and started on Entyvio infusions. Since then I can't see much improvement. I now have incontinence 3-4x/month and diarrhea 4-6x/day. I was just started on Colestid today so can't really comment on that. But really frustrated that I am unable to find a means of managing this. I am trying my best to make Fodmap work but the dinners are pretty bland as garlic and onions really cause symptoms. any suggestions would be appreciated.

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@barb1954 I agree . the food is boring. but trying to get used to it and begin to realize how much junk food we really eat. begin to see food not as a pleasure but as a necessity

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barb1954 | @barb1954 | May 18 8:59am
In reply to @jsalkeld0 "I've been dealing with lymphocytic colitis for more than 20 years. None of the treatments (budesondide,..." + (show)
Profile picture for jsalkeld0 @jsalkeld0

I've been dealing with lymphocytic colitis for more than 20 years. None of the treatments (budesondide, Entyvio, lomotil, Infliximab, colesevalam, mesalamine, azathioprine) worked well.
Doctors kept telling me it would go away - it got worse.
Kept searching medical literature and discovered a couple of case studies of women with LC that didn't respond to other treatment doing very well on RINVOQ.
Got my doctor to prescribe it, have been on it 4 weeks and it works like a miracle drug. A real life changer for me. No more pain and frequent dashes to the bathroom, accidents etc.
Good luck.

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@jsalkeld0 thanks for the information about Rinvoq. I am on Medicare now and am not certain if insurance will cover it. But definitely worth pursuing. I take it your insurance did cover it. It looks like you had to fail at least 2 generics prior?

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barb1954 | @barb1954 | 1 day ago
In reply to @anniegk "How many of you suffering with Microscopic Colitis had your Gallbladder removed before being diagnosed with..." + (show)
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How many of you suffering with Microscopic Colitis had your Gallbladder removed before being diagnosed with MC?

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@anniegk I still have my gallbladder and was diagnosed with 5 yrs ago with Microscopic colitis.

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hoops17 | @hoops17 | 1 day ago
In reply to @anniegk "How many of you suffering with Microscopic Colitis had your Gallbladder removed before being diagnosed with..." + (show)
Profile picture for anniegk @anniegk

How many of you suffering with Microscopic Colitis had your Gallbladder removed before being diagnosed with MC?

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@anniegk no gallbladder issues or removal. sorry to hear those who had problems following gallbladder surgery.

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rebe410 | @rebe410 | 1 day ago
In reply to @anniegk "How many of you suffering with Microscopic Colitis had your Gallbladder removed before being diagnosed with..." + (show)
Profile picture for anniegk @anniegk

How many of you suffering with Microscopic Colitis had your Gallbladder removed before being diagnosed with MC?

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@anniegk

I did.

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pichulita | @pichulita | 3 hours ago

Had gall bladdre removed in 1991 and diagnosed with LC in 2024.

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