Unexpected trigger for flare of microscopic colitis

Posted by pb50 @pb50, May 3 5:46pm

After 7 months of house arrest due to diarrhea, Yersenia and C-Diff infections, i was diagnosed with Microscopic Colitis, Collagenous type in early 1923. After 12 weeks of a colon-specific steroid called Budesonide, life was normal. I did experiment with the four major known medication triggers - all of which I had taken for years (SSRIs, PPIs, NSAIDs, and Statins) and learned through trial and error that i am affected by NSAIDs but not the others. Thats a tough drug to avoid with multiple forms of arthritis, but I would avoid anything to avoid MC.

AND THEN .. two weeks ago i had cataract removal - one of two scheduled two weeks apart. Part of the post-surgical treatment are 12 eye drops a day - 4 of which are opthalmic NSAID drops. And over two weeks I absorbed enough to trigger a flare of my microscopic colitis. And I had the second eye done today so I’m in for two more weeks of nsaid drops.
GI Doc says do the best I can with Imodium and just get ton the other side of the eye treatment. If necessary he will give me a short course of Budesonide.

I wasn't expecting this at all - so thought it worth warning people with MC to be aware.

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

Good to know about the NSAID eye drops! I suspect my Collagenous Colitis (diagnosed last Fall) is the result of many years of NSAID use. . . . Did you discover any food triggers or is it just NSAIDs for you? I have had difficulty tapering off Budesonide and suspect food issues and am now gluten-free to see if the third attempt of tapering will be successful.

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Did you mean 2023 in first paragraph?

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@pearpie

Did you mean 2023 in first paragraph?

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Yea.. i didnt catch it in time to edit it.

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@debhammel

Good to know about the NSAID eye drops! I suspect my Collagenous Colitis (diagnosed last Fall) is the result of many years of NSAID use. . . . Did you discover any food triggers or is it just NSAIDs for you? I have had difficulty tapering off Budesonide and suspect food issues and am now gluten-free to see if the third attempt of tapering will be successful.

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I went off nsaid, ppi, ssri, and statin - and added them back one at a time. Ibuprofen was the clear culprit. But no food issues.

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@debhammel

Good to know about the NSAID eye drops! I suspect my Collagenous Colitis (diagnosed last Fall) is the result of many years of NSAID use. . . . Did you discover any food triggers or is it just NSAIDs for you? I have had difficulty tapering off Budesonide and suspect food issues and am now gluten-free to see if the third attempt of tapering will be successful.

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I know cause and effect is difficult to link but regarding your gluten question, I tried tapering three times without any luck. After an Enterolab test showed I had gluten sensitivity, I quit. After about nine months, I did a stool test with Genova that showed my Secretary Iga had returned to normal levels so I tried tapering again. I'm now three months in with no issues. So, after trying virtually everything (totally vegan, no medication at all etc,) I think gluten at the end of the day was the issue.

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@ejo

I know cause and effect is difficult to link but regarding your gluten question, I tried tapering three times without any luck. After an Enterolab test showed I had gluten sensitivity, I quit. After about nine months, I did a stool test with Genova that showed my Secretary Iga had returned to normal levels so I tried tapering again. I'm now three months in with no issues. So, after trying virtually everything (totally vegan, no medication at all etc,) I think gluten at the end of the day was the issue.

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Thanks for this info! Do you think you will try eating gluten again? I've found decent substitutes for most gluten-containing foods but do miss farina-based pastas, sourdough bread (I make a really good, heritage grain-based one), and struggle with having to be so careful when I eat at a restaurant. However, if gluten-free allows me to taper off or to a lower dose of Budesonide, and keeps me from flares, I'll do it!

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No, while my "house arrest" was not as long as yours, I never want to experience that again. And despite my three GIs' complacency about the long -term use of Budesonide, I don't want to be on it. (They can't show me any long -term studies to support their view - only anecdotal individual patient experience.)

But I agree, eliminating gluten is hard. Add to that the fact that I became a vegan after getting sick and quit coffee. I went plant based because all my readings suggest it is the path to a healthy gut even though many doctors say we should reduce, not increase, our fiber when suffering from MC. I chose to take a longer path and try to undo the damage of decades of meat, processed food, sugar, dairy and eggs.

You may wonder "why coffee?" One of my doctors said that while it isn't yet a recommendation, there is some emerging evidence that coffee plays a role in MC. From what I understand, coffee contracts the spleen and releases bile which has a diuretic effect. Since a bile acid suppressant is one of the treatment options, and since I'm very sensitive to caffeine, I gave it up. Again, I can't know which of all these strategies has worked, of if perhaps all of them combined have done the job, but something worked.

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I have found the same benefits to giving up gluten and nightshades and going vegan with no oil. I have tried Budesonide several times. But nothing seems to help the urgency issues which can lead to anxiety when venturing out if there isn't a bathroom close by. Has anything worked for anyone with bowel urgency issues which often leads to incontinence?

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@judithlynne

I have found the same benefits to giving up gluten and nightshades and going vegan with no oil. I have tried Budesonide several times. But nothing seems to help the urgency issues which can lead to anxiety when venturing out if there isn't a bathroom close by. Has anything worked for anyone with bowel urgency issues which often leads to incontinence?

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I am so sorry. Like I said, I had 7 months of house arrest - much as I’m in now- and in 4 days after starting 9mg of Budesonide a day, I began to get relief. I did also simultaneously stop the known causes (all four drugs) plus sugar and caffeine. I did add all back over time, other than NSAIDs, but in much reduced frequency and amount. All in all, that took about 6 months. But i had a very good result from budesonide and i feel badly that you did not.

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@debhammel

Good to know about the NSAID eye drops! I suspect my Collagenous Colitis (diagnosed last Fall) is the result of many years of NSAID use. . . . Did you discover any food triggers or is it just NSAIDs for you? I have had difficulty tapering off Budesonide and suspect food issues and am now gluten-free to see if the third attempt of tapering will be successful.

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What was your course? Mine was:

9 mg/day for 8 weeks and then
6 mg for 2 weeks then
3 mg for 2 weeks then
off the medication

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