Repeat Collagenous Colitis "flare"

Posted by fdixon63 @fdixon63, Jul 14 2:21pm

I was first diagnosed with C. colitis (confirmed by a colonoscopy) in Feb. 2022 and was put on a 3-month treatment of Budesonide. It worked great. Two years later (March 2024) I had what seemed to be a "flare" of the same. No colonoscopy done. My GI doc again prescribed 3-months of Budesonide. Relief came within a couple of days. Now I am having the same symptoms--loose stools (4-5 a day), lots of gut sounds, urgent trips to the BR, etc. Has anyone experienced similar recurrence so close together. I thought if it could be controlled for two years, that would not be so bad. I don't know how my GI doc will feel about doing another round of Budesonide since I just finished a round May 30th. Thanks.

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@fdixon63

@astaingegerdm - Thanks for your input regarding your experience regarding Collegenous Colitis. You said having Methotrexate injections weekly X 4 weeks worked...and it did not return. Did you just do the 4 weekly injections and have not had to take them again? Sounds great. Also was the Imuran not ever used for C. Colitis? Just the other GI autoimmune condition? Sounds like you incorporated the Pepto Bismol along the way. Did you have to use it very often or just until you were able to discontinue it once you were given Methotrexate. Again, thanks.

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@fdixon63
I only needed the initial treatment with the 4 injections. However, the doctor mentioned that if the colitis returns I could take methotrexate orally.
The other autoimmune condition I had did not go away with Budesonide- better though. I decided that I wanted to try Imuran. It definitely suppresses your immune system- I ended up having several different infections, getting worried. I quit after 7 months. I had regular blood tests to monitor blood counts.

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@astaingegerdm

@fdixon63
I only needed the initial treatment with the 4 injections. However, the doctor mentioned that if the colitis returns I could take methotrexate orally.
The other autoimmune condition I had did not go away with Budesonide- better though. I decided that I wanted to try Imuran. It definitely suppresses your immune system- I ended up having several different infections, getting worried. I quit after 7 months. I had regular blood tests to monitor blood counts.

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I'm glad to say that the Budesonide (after 8 days) seems to be helping. I would be very concerned to take another med (i.e. imuran) that would suppress my immune system as I have four bacterial lung infections and lichen planus. Thanks, I appreciate your input.

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@pb50

My GI doc called in a script for Budesonide a week after I relapsed Sadly this time it did nothing. So I’m left with only anti diarrheals

The open question we will start drilling into next month is
*is microscopic colitis relapsing, or
*is the current issue another variation of bowel inflammation

The “colon calming” diet i am on is to create the best intestinal state possible to further assess.

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Hi, what's a colon calming diet and is it a diet you are on all the time? Thx

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@bettwils16

Hi, what's a colon calming diet and is it a diet you are on all the time? Thx

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@bettwils16

This is the google search where I found it.

colon calming diet for IBD or colitis

It brings up several pages I found useful.

This has been my north star for several weeks and it is really helping. I eat a piece of white low fiber toast w/Manuka honey first thing on morning. Two hours later i eat one scrambled egg with no butter and half a piece of toast. For lunch I have two slices rolled up of black forest ham and a bowl of plain white rice, salt only with one serving of canned diced peaches no sugar added, drained. For dinner I have a grilled turkey patty with steamed new potatoes no butter and overcooked green beans (I get the individual serving cups and microwave them).

I have been religious and i am much better but I am still taking 6-9 capsules of pepto bismol a day to get the benefit of its anti bacteria/anti inflammatory properties.

From the google link:

A colon calming diet for inflammatory bowel disease (IBD) or colitis can include different foods depending on whether you're experiencing a flare-up or not:

During a flare-up
Low-fiber foods are easier to digest and less irritating to the gut. You can try:
White grains or starches with less than 2 grams of fiber per serving
Well-cooked vegetables like green beans, carrots, mashed potatoes, asparagus tips, and pureed squash
Canned or soft fruits like peeled apples, bananas, cantaloupe, honeydew, and watermelon

Between flares
You can try eating a wide variety of foods, including:
Fruits and vegetables
Whole grains
Lean protein like lean meats, tofu, fish, and eggs
Low-fat and nonfat dairy products
High-calcium foods like yogurt, kefir, collard greens, and milk if you can tolerate lactose
Foods with probiotics like yogurt, tempeh, kimchi, miso, and sauerkraut
Healthy fats like omega-3 fatty acids, olive oil, and canola oil

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Thank you! Very interesting, alot to learn.

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@pb50

My GI doc called in a script for Budesonide a week after I relapsed Sadly this time it did nothing. So I’m left with only anti diarrheals

The open question we will start drilling into next month is
*is microscopic colitis relapsing, or
*is the current issue another variation of bowel inflammation

The “colon calming” diet i am on is to create the best intestinal state possible to further assess.

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Update to add that I am two weeks into a 9 week course of 9mg a day and my symptoms are much improved this time.

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Just as an update, i met with Gastro and after extensive symptom review, he reinstated Budesonide 9mg x 8 weeks and then we will taper from there. I am still following my low fiber, low sugar, low bulk diet. Between the two i have now gone 4 days without an anti-diarrheal. I am very hopeful!!

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