1. < Digestive Health

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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debhammel | @debhammel | Jul 16 7:27am
In reply to @fdixon63 "Thanks for the response pb50. I'm going to contact my GI group tomorrow and see what..." + (show)
@fdixon63

Thanks for the response pb50. I'm going to contact my GI group tomorrow and see what they have to say. I'm concerned because I can't keep my weight at a healthy level. Am afraid to eat anything. Also, it affects daily living--hard to go anywhere because of potential embarrassing "problem." I had even asked my doc earlier this year if it's possible to stay on Budesonide but she said that is not an option.

I would like to know what your GI doc has to say when you go for your next visit. Hope you get some good answers.

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You may want to consider a second opinion on the long-term use of Budsonide. It is considered safe for long-term use in controlling Collagenous Colitis. My GI doc has many patients taking low doses of Budesonide to manage this and has told me many times that this is a common treatment.

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1 reply
fdixon63 | @fdixon63 | Jul 16 9:35am
In reply to @pb50 "Here you go. I have copied The key points and insert here first. Then i included..." + (show)
@pb50

Here you go. I have copied
The key points and insert here first. Then i included the link to the study. Lots of reading but I found it interesting

3 × 262 mg tablets po tid × eight weeks

Antidiarrheals

Bismuth subsalicylate
Bismuth subsalicylate is an over-the-counter agent used for various gastrointestinal complaints. It has been studied for the treatment of microscopic colitis, and been found to improve both clinical and histological activity of the disease over the short term, without significant adverse events (6,7). The long-term benefits of this medication are unproven, but it likely can be used effectively to treat patients with relapsing disease. There is a theoretical potential for bismuth toxicity with continuous use, so a regimen of intermittent use is preferred (8).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2661290/

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I picked up some Pepto this morning. I'd taken Imodium already today so I'll wait until my symptoms return to give it a try. I'll also go to the link you sent. I appreciate your help.

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pb50 | @pb50 | Jul 16 9:51am

Everyone is different but Imodium just was not effective for me. I hope Pepto helps you as much as it did me. There aren't a lot of other options

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1 reply
pb50 | @pb50 | Jul 16 10:00am
In reply to @debhammel "You may want to consider a second opinion on the long-term use of Budsonide. It is..." + (show)
@debhammel

You may want to consider a second opinion on the long-term use of Budsonide. It is considered safe for long-term use in controlling Collagenous Colitis. My GI doc has many patients taking low doses of Budesonide to manage this and has told me many times that this is a common treatment.

Jump to this post

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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3 replies
fdixon63 | @fdixon63 | Jul 16 10:08am
In reply to @pb50 "Everyone is different but Imodium just was not effective for me. I hope Pepto helps you..." + (show)
@pb50

Everyone is different but Imodium just was not effective for me. I hope Pepto helps you as much as it did me. There aren't a lot of other options

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Thanks. I will be trying it.

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fdixon63 | @fdixon63 | Jul 17 7:26pm
In reply to @pb50 "My GI doc called in a script for Budesonide a week after I relapsed Sadly this..." + (show)
@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.

Jump to this post

pb50 and debhammel - After some back-and-forth (by portal) with my GI CRNP yesterday we decided that we would try Budesonide (3-months) again and if the results is not longer lasting than a month or two, that I'll go into the office and discuss other options. She said that even though she does not prescribe daily Budesonide she has ordered the 3-month treatment i.e. 3 times in a year.
I like one of the options pb50 offered, "*is the current issue another variation of bowel inflammation." This is very plausible. Thanks all. Faye

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1 reply
pb50 | @pb50 | Jul 18 4:37am
In reply to @fdixon63 "pb50 and debhammel - After some back-and-forth (by portal) with my GI CRNP yesterday we decided..." + (show)
@fdixon63

pb50 and debhammel - After some back-and-forth (by portal) with my GI CRNP yesterday we decided that we would try Budesonide (3-months) again and if the results is not longer lasting than a month or two, that I'll go into the office and discuss other options. She said that even though she does not prescribe daily Budesonide she has ordered the 3-month treatment i.e. 3 times in a year.
I like one of the options pb50 offered, "*is the current issue another variation of bowel inflammation." This is very plausible. Thanks all. Faye

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Good luck! I will tell you that after about six weeks of Budesonide, my GI suggested that I augment this round of Budesonide with the Pepto Bismol as necessary to be able to leave the house. That was when i researched alternatives to Budesonide when it fails. I taper to zero tomorrow.

For me, that first time miraculous result w/ Budesonide is just not there this time.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jul 19 3:25pm

I was diagnosed with collagenous colitis 2008.
The GI I saw then prescribed Methotrexate injections weekly x4 weeks. It worked and it did not return.
However, i developed another autoimmune GI illness and ended up going to Mayo for it. Was on Budesonide on and off for years.
Eventually, I was treated with Imuran- it worked. However, that’s a very powerful drug that probably is not appropriate for collagenous colitis.
PeptoBismol has an anti inflammatory effect too.

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1 reply
fdixon63 | @fdixon63 | Jul 21 1:05pm
In reply to @astaingegerdm "I was diagnosed with collagenous colitis 2008. The GI I saw then prescribed Methotrexate injections weekly..." + (show)
@astaingegerdm

I was diagnosed with collagenous colitis 2008.
The GI I saw then prescribed Methotrexate injections weekly x4 weeks. It worked and it did not return.
However, i developed another autoimmune GI illness and ended up going to Mayo for it. Was on Budesonide on and off for years.
Eventually, I was treated with Imuran- it worked. However, that’s a very powerful drug that probably is not appropriate for collagenous colitis.
PeptoBismol has an anti inflammatory effect too.

Jump to this post

@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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1 reply
joy4trees | @joy4trees | Jul 22 5:02pm

Hello,
A helpful resource is the Microscopic Colitis Foundation | 10242 Darrs Creek Rd | Bartlett, TX 76511 US,
Wayne Persky: wayne@perskyfarms.com
Rosalyn Upson, Newsletter Editor: rosalyn.upson@gmail.com
Access it by the email of Wayne Persky.
There is a newsletter, blog and social media that is helpful with questions and answers from participants.
The Microscopic Colitis Foundation has been most helpful to me.
Also see: https://www.mayoclinic.org/diseases-conditions/microscopic-colitis/symptoms-causes/syc-20351478 to see the detail of collagenous and lymphocytic colitis under microscopic colitis.
My gastro doctor prescribed Cholestyramine when I had times that I could not stop the diarrhea. I only needed to take it briefly, 2-3 packets (dissolved in 6 oz. water), and not needed it often.
However, one time the problem was significantly affecting me and I used the diet the M.C. Foundation suggests which is low fiber, comfort foods.
When I was diagnosed with celiac disease, I also was diagnosed with Microscopic Colitis, (the lymphocytic kind.

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