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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Profile picture for lpockat @lpockat

@barb1954 So sorry to hear this. I have also been on Bdesonide for about the same time - actually down to 2 pills a day, and maybe try 1 pill a day soon. I eat almost everything - greasy, fresh veg. and spicy in extreme moderation. I just read about cortisol elevation, and I have some of the symptoms - like thin skin and high stress levels - but then I've always had high stress levels. Thank you for making me aware of these symptoms. I really don't have any suggestions - wish I did. Can I ask your age- born in 1954? Then I'm your age as well.

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@lpockat I am 92 years old and have been diagnosed with colitis as result of taking Celebrex for many years. It has improved in the last two months and hesitate to have a colonoscopy due to my age and also hesitant to start on a medication like Budesonide at my age. All medications have side effects I now realize. I am careful with my diet no longer eating some salads, Alright with fruit in moderation. Unfortunately, I am now paying the price for taking Celebrex for so many years now taking blood pressure medication and being careful of my diet. Hopefully time will help.

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I'm sorry to hear you have colitis. I would say that in my experience with budesonide I haven't encountered any side effects, though I don't think you're wrong about everything having side effects. the one drawback of budesonide is that eating too much tryptophan according to one new study reduces the effectiveness of budesonide.
here's to feeling better!

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Profile picture for margaretamelia @margaretamelia

@lpockat I am 92 years old and have been diagnosed with colitis as result of taking Celebrex for many years. It has improved in the last two months and hesitate to have a colonoscopy due to my age and also hesitant to start on a medication like Budesonide at my age. All medications have side effects I now realize. I am careful with my diet no longer eating some salads, Alright with fruit in moderation. Unfortunately, I am now paying the price for taking Celebrex for so many years now taking blood pressure medication and being careful of my diet. Hopefully time will help.

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@margaretamelia Thank you for replying to my message. I have not had any bad side effects from the Budesonide- at least not yet. I am trying to cut back on it. I developed colitis after using an ointment (mupirocin) to get rid of MRSA before a surgery many years ago. I kept trying to get rid of it, and the ointment, putting it just inside the edge of my nose kept giving me diarrhea. The pharm. told me to stop using it - and to read the little paper that came with the ointment, as it says this med can cause colitis! About 6 months later I had microscopic colitis! I wish you well in handling all this.

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Profile picture for hoops17 @hoops17

I'm sorry to hear you have colitis. I would say that in my experience with budesonide I haven't encountered any side effects, though I don't think you're wrong about everything having side effects. the one drawback of budesonide is that eating too much tryptophan according to one new study reduces the effectiveness of budesonide.
here's to feeling better!

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@hoops17 thank you for your sharing your experience. I will keep an open mind on having a colonoscopy and looking into treatment for the colitis. I have been fortunate in having good health except for arthritis. Celebrex was great for keeping me active but can no longer take it- only medication for pain is Tylenol which is not very effective. I am careful with what I eat and that helps. I'll give it a few months to see if being careful with what I keeps it under control.
thanks,

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Profile picture for margaretamelia @margaretamelia

@lpockat I am 92 years old and have been diagnosed with colitis as result of taking Celebrex for many years. It has improved in the last two months and hesitate to have a colonoscopy due to my age and also hesitant to start on a medication like Budesonide at my age. All medications have side effects I now realize. I am careful with my diet no longer eating some salads, Alright with fruit in moderation. Unfortunately, I am now paying the price for taking Celebrex for so many years now taking blood pressure medication and being careful of my diet. Hopefully time will help.

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@margaretamelia Thanks. I too am getting off of Escitalopram after many years. Hoping that that will do the trick. doing Lactaid, sourdough bread, limiting coffee and Liquor. The hard one is avoiding onions and garlic. who cooks without these ingredients!

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I have had MC for 18 years. Was on Budesonide 15 years, which is the main go to for Gastroenterology. Its a steroid with many side effects. Thinning of skin, easy brusing, bloating, some research link to thining of bones in the lower back and more, but it does help. Thinning of bone in lower back and other side effects is why I got off it. I control most of it with diet. Most MC patients are gluten sensitive and some are dairy sensitive. I suggest you read Wayne Persky's book Microscopic Colitis and also his Microscopic diet book.

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Have you read Wayne Persky's books, Microscopic Colitis and the Microscopic Diet book? You might start there.

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Profile picture for donnagail @donnagail

I have had MC for 18 years. Was on Budesonide 15 years, which is the main go to for Gastroenterology. Its a steroid with many side effects. Thinning of skin, easy brusing, bloating, some research link to thining of bones in the lower back and more, but it does help. Thinning of bone in lower back and other side effects is why I got off it. I control most of it with diet. Most MC patients are gluten sensitive and some are dairy sensitive. I suggest you read Wayne Persky's book Microscopic Colitis and also his Microscopic diet book.

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@donnagail I'm sorry it's been so long for you. I haven't read Wayne Persky; we have "Microscopic Colitis Diet Cookbook" by George R. Wilson and Soren Redfield's Colitis Cookbook. I haven't been pursuing a special diet as I've been told by medical professionals to eat whatever I'd like to eat, though I have drastically all but eliminated alcohol. Budesonide is working fairly well for me at the moment. thanks for the Persky reference - I'll check it out.
here's to improving health for everyone.

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Profile picture for hoops17 @hoops17

@donnagail I'm sorry it's been so long for you. I haven't read Wayne Persky; we have "Microscopic Colitis Diet Cookbook" by George R. Wilson and Soren Redfield's Colitis Cookbook. I haven't been pursuing a special diet as I've been told by medical professionals to eat whatever I'd like to eat, though I have drastically all but eliminated alcohol. Budesonide is working fairly well for me at the moment. thanks for the Persky reference - I'll check it out.
here's to improving health for everyone.

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@hoops17 Gastros know nothing about diet. They only write prescriptions. The Persky MC book had a website listed called Enterlab. I ordered a gluten test from them. It was $400 + $50 to ship the specimen from the US to the UK. They rate gluten in units. Normal is 10 units or under. Mine was 23! Best $450 I could have spent! Most MC patients have a major problem with gluten and some dairy.

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Profile picture for carolyne @carolyne

Hello, I’ve been diagnosed with collagenous colitis, similar to MC. It’s a terrible to have, a lot more than diarrhea and cramping, body aches, weight loss and extreme fatigue. None of the conventional medications worked for me. I’m now on Entyvio infusions every 8 weeks and its brought my symptoms under control and I’m feeling better.
I know what you’re going through, gastro intestinal issues are the worst!!!!
Be persistent with your gastroenterologist until you find something that works for you.

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@carolyne
I’ve was diagnosed with microscopic colitis in June 2025. I took a 90 day course of budesonide which controlled the symptoms.

I did not stay in remission. I’ve tried to stick to a gluten free, dairy free, low fiber diet to no avail.

I’m seeing my GI doctor today. I think we will talk about a biologic drug.

You seem to be doing well on Entyvio. Was there an adjustment period?

Thank you!
Elaine

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