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.

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@debhammel

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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That is my stance.

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@pb50

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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My original course of Budesonide was like yours, and by the time I was down to 3 mg I relapsed. I don't recall the dosing schedule for the second attempt, but I relapsed after 5 days on 6 mg. Current attempt is 10 weeks at 9 mg, 6 weeks at 6 mg, and then we'll see what happens to determine if/how long I'm on 3 mg. I'm to check in with my GI doc at the end of May and report how I'm doing on 6 mg (I'm 7 days in and doing well so far). She may want to reduce the dose to 3 mg at that point. I'm also on no NSAIDs except low-dose aspirin, gluten-free since the second relapse, and being very careful about raw veggies (I can eat a salad for lunch once or twice a week, but not two days in a row). I'm almost caffeine free (my morning coffee is about 15% caffeinated - just enough to make it taste better than fully decaf. Also, I have a little red wine twice a week with dinner on the weekends. I've learned in many cases that moderation is the key. If I can't taper off Budesonide this time, or at least get to a low dose, I will change my diet further.

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EDITED to say that the hopes of controlling this new situation by stopping the nsaid eye drops and taking Imodium didn’t happen. I began to freak when my reality shifted to four nocturnal episodes of not quite making it to toilet and having four changes of sleepwear on the shower floor in the morning. My flashbacks were so horrid i was literally sobbing on the bathroom floor. And then like any cross between a Marine and southern princess, I cleaned the Bathroom, showered, started a load of laundry, and called my Gastro. SO…. I’m 4 days on Budesonide again. Im improved in terms of episode frequency - but still feel very vulnerable about going out in the evening.

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@debhammel

My original course of Budesonide was like yours, and by the time I was down to 3 mg I relapsed. I don't recall the dosing schedule for the second attempt, but I relapsed after 5 days on 6 mg. Current attempt is 10 weeks at 9 mg, 6 weeks at 6 mg, and then we'll see what happens to determine if/how long I'm on 3 mg. I'm to check in with my GI doc at the end of May and report how I'm doing on 6 mg (I'm 7 days in and doing well so far). She may want to reduce the dose to 3 mg at that point. I'm also on no NSAIDs except low-dose aspirin, gluten-free since the second relapse, and being very careful about raw veggies (I can eat a salad for lunch once or twice a week, but not two days in a row). I'm almost caffeine free (my morning coffee is about 15% caffeinated - just enough to make it taste better than fully decaf. Also, I have a little red wine twice a week with dinner on the weekends. I've learned in many cases that moderation is the key. If I can't taper off Budesonide this time, or at least get to a low dose, I will change my diet further.

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Thats encouraging. My doc planned for this to be an abbreviated course of budesonide but the diarrhea has a mind of its own. Im eating a BRATS diet, taking peptobismol capsules (that work better for me than imodium), gas-x, and only a quarter cup of coffee. Im going to a play today and have had a piece of dry toast and 1-2 cup of rice that i realized too late had some sunflower Oil on it. Now im panicking that will be my undoing. I so hate the stress of colitis.

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Thank you, that’s good to know. I was diagnosed with Microscopic Colitis years ago, I used to have problems with diarrhea, now at 78yrs I have problems with constipation. I take Tylenol every night and as far as I know it is not the cause of any of my problems.
It is good to know these things, it may help others to recognize a connection.

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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 have tried EVERYTHING. heres my guaranteed method if I have appointments or God forbid something fun like the play i went to see yesterday. .

I had two events - one was a 10:00 Church service and the second was a 3 hour play plus an hour of total travel time.

I start Prep the day before
By taking 2 liquid filled Pepto Bismol capsules at 8:30pm and another 2 at 9:30. I had a baked sweet potato for dinner.

My son picks me up at 9:45 Sunday morning so I repeat the 2 capsules at 8:30, have a piece of dry toasted white bread and the second two pepto capsules at 9:30.

I got home at 11:15. I have a cup of boiled white rice with no butter and at 12:00 I take two pepto capsules, 2 Gas-X, and leave for the theatre.

I was home by 5 and had seared tuna with steamed veggies and rice at 6.

I left this lengthy to emphasize how I have to plan and execute for a couple of simple outings. It was a LOT of pepto Bismol but within guidance. I had bad dreams about not being able to get to the end of the row of seats To get to the ladies room and pooping over someone. I was terrified.

By 3:00 i was confident I would make it. No twinges at all _ and the 3 People between me and the end of the row didn't show up - so I took a breath and relaxed.

Most days it isn't worth it. Yesterday it was.

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Update to add that the nsaid eye drops triggered full blown colitis and all that implies - weeks of not being able to leave the house, watery diarrhea, mid-night incontinence - all as bad as the original condition over a year ago. I am back on the Budesonide regimen and improving.

But I’m warning you, if NSAID is your trigger, tell your surgeon you cannot take nsaid drops!!

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@emyliander

Thank you, that’s good to know. I was diagnosed with Microscopic Colitis years ago, I used to have problems with diarrhea, now at 78yrs I have problems with constipation. I take Tylenol every night and as far as I know it is not the cause of any of my problems.
It is good to know these things, it may help others to recognize a connection.

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My lymphocytic colitis started last August and I’ve had 2 nocturnal flares since. After each episode, when diarrhea stops, then the constipation begins and I have to take Miralax. My normal problem has always been constipation before colitis started. I’m still experimenting with foods. Thanks to everyone for your comments and suggestions.

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@emyliander

Thank you, that’s good to know. I was diagnosed with Microscopic Colitis years ago, I used to have problems with diarrhea, now at 78yrs I have problems with constipation. I take Tylenol every night and as far as I know it is not the cause of any of my problems.
It is good to know these things, it may help others to recognize a connection.

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Try Magnesium. Its a good supplement and helps with constipation.

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@pb50

Try Magnesium. Its a good supplement and helps with constipation.

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I’ll look into it, thank you.

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