Collagenous Colitis Relapse

Posted by debhammel @debhammel, Feb 17, 2024

I was diagnosed with Collagenous Colitis last October. Was prescribed 9 mg daily of Budesonide and did really well on that until I was on the second week of the taper at 3 mg a day when I relapsed. Was returned to 9 mg daily on 1/6/24 and started taper to at 6 mg on 2/6. It's two weeks later and I have relapsed again. Original dosing schedule was 9 mg daily for 6 weeks, 6 mg daily for 2 weeks, 3 mg daily for two weeks. What has been your experience with this version of microscopic colitis and tapering off Budesonide? What dietary changes helped you? Any other thoughts/suggestions? Thanks!

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@lethbridge
I have sourdough not gluten free bread with my eggs so not a problem. Also, hard cheese is not a problem for me but cream cheese is a problem. I eat Lactose free milk, yogurt and sour cream. Other than what ive listed here is trial and error. Rich foods eg all forms of chocolate, ice cream, creamy soups, sauces, anything rich. I limit beef and eat fish, chicken and vegetarian. I also found deep fried foods and all caffeine are problematic. Hope this hel

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Oh that is super helpful. I'm wondering if others find eggs a problem. Thank you for any and all replies.

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I don’t know of any associations with dairy. If you’re in the midst of it, I suppose it could worsen symptoms. But I don’t believe it either causes or arrests the condition.

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Profile picture for sharleneh @sharleneh

@lethbridge
I have sourdough not gluten free bread with my eggs so not a problem. Also, hard cheese is not a problem for me but cream cheese is a problem. I eat Lactose free milk, yogurt and sour cream. Other than what ive listed here is trial and error. Rich foods eg all forms of chocolate, ice cream, creamy soups, sauces, anything rich. I limit beef and eat fish, chicken and vegetarian. I also found deep fried foods and all caffeine are problematic. Hope this hel

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Yea what she said makes sense. Stay away from rich things that are gassy or that worsen diarrhea under ordinary circumstances

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Profile picture for lethbridge @lethbridge

I too am recently diagnosed and just finishing 28 days at 9 mg. Next up is 28 days at 6 mg, followed by 28 days at 3 mg. I've been scouring the posts for ideas about diet choices, as my GP just said to eat normally. That is causing all sorts of cramps and gas, plus very soft stools. My question is, could eggs be a food trigger? I eat them daily and have not read in any post that eggs could be a problem. Still losing weight and I just plain need the protein! Second question is, if I'm limiting dairy, are hard cheeses a problem? Many thanks for any and all advice on these 2 questions.

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Everyone has different triggers so eggs might be yours. The only way to tell is to go off them and see if you get any improvement. If nothing changes you’ll know it’s not eggs. If that’s the case, I’d suggest going gluten-free for a couple of weeks. I have read that this is a trigger for a lot of people with microscopic colitis.

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Profile picture for lethbridge @lethbridge

I too am recently diagnosed and just finishing 28 days at 9 mg. Next up is 28 days at 6 mg, followed by 28 days at 3 mg. I've been scouring the posts for ideas about diet choices, as my GP just said to eat normally. That is causing all sorts of cramps and gas, plus very soft stools. My question is, could eggs be a food trigger? I eat them daily and have not read in any post that eggs could be a problem. Still losing weight and I just plain need the protein! Second question is, if I'm limiting dairy, are hard cheeses a problem? Many thanks for any and all advice on these 2 questions.

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I was thinking about your post - do you eat raw vegetables, beans, or a lot of broccoli or other cruciferous veggies? I have found that raw vegetables can be a problem and beans for me are a definite no unless I cook dried beans after a 24 hour soak.
Just something else to consider

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Thank you all so much, I am still learning and your comments are so helpful. So eggs might be a trigger, but I can check that. I'm avoiding raw fruits and veggies, only well cooked for now. But I miss green salads so much!

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Really appreciate all the shared experiences. I was diagnosed with Collagenous colitis a month ago after a bout of C. difficile.

Trying to navigate a reasonable path without giving up on everything I’d normally eat. It’s a struggle.

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I have collagenous colitis and was also diagnosed after a onset of diarrhea, followed by stool sample which showed a bug I have since learned many of us walk around with, associated with undercooked pork. But my doc treated it with antibiotics, which worsened symptoms and resulted in C-Diff. Following treatment for that a colonoscopy with random biopsies revealed Collagenous Colitis.

I was started on Budesonide - and had positive results in days but completed a multi week course weaning down as you described. From first symptom to post steroid result was the better part of a year - a hell scape of a year. But I had my life back!!

Until I relapsed. I did an abbreviated course of Budesonide and it was effective again.

Until I relapsed. Now I am on a daily 3mg maintenance dose. So far so good.

But I always am …
Waiting for relapse. I keep disposable bed pads in my car for my seat in case I feel vulnerable. Every time my stomach twinges I catch my breath.

But I am so blessed by modern medicine and chastise myself to recognize that blessing.

As for diet, I instinctively avoided roughage- though I am not convinced that diet is a factor in the condition once you have abated it with Budesonide. . I would maintain some fiber to balance carbs but not go overboard. But after almost a year on minor variations of a BRAT diet anything was good to me.

Good luck

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Profile picture for ccnewbie @ccnewbie

Really appreciate all the shared experiences. I was diagnosed with Collagenous colitis a month ago after a bout of C. difficile.

Trying to navigate a reasonable path without giving up on everything I’d normally eat. It’s a struggle.

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Have you started Budesonide? If not, my regiment was 2 Capsules of liquid Pepto Bismol every 6 hours and diet was essentially BRAT - Bananas. Rice, Applesauce and white toast. But I skipped the applesauce. That was based on old country learning that scraping the peel of an apple provides pectin - which helps with diarrhea. Applesauce isn’t the same and I thought worsened diarrhea.

So no whole wheat or fiber to speak of - just to calm things down. Then add simple foods back one at a time. Some do ok with yogurt.. some don’t. Everyone is different. I would have sold my soul for a salad. But you need treatment more than salad right now.

Good luck!!

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