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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