Collagenous Colitis Relapse

Oh how frustrating and disappointing that must be! I went through that collagenous colitis ordeal in November of 2022 after 7 months of misery. The
budesonide took months to step down to nothing and I have great fear of relapsing. What does your doc think?

The doctor who did the colonoscopy and diagnosed the collagenous colitis prefers a longer time on the 9 mg dose. The PA in the GI practice who has been my primary care provider seems to prefer a shorter period. I messaged her this morning and mentioned his preference for a longer starting phase, so we'll see how she responds on Monday. I don't have a problem with being on Budesonide long-term if that's what it takes but it sure would be nice to get off of it altogether.

From my GI doc at the time…

The goal of budesonide is to take 9 mg for 8 weeks and then 6 mg for 2 weeks then 3 mg for 2 weeks then off the medication.

I’m sure there’s a medical downside to long term use … but there’s personal downside to being a prisoner in your own home because you can’t be more than 10 feet from a toilet.

I'm in my second round of decreasing budesonide. Never made it to 1 cap, 3 mg, a day. Down now to 2 caps, 6mg, a day for 3 weeks. Waiting for the other show to drop! I found this forum by accident. What's it called so I can find it again? Thx

Look at the top of your screen. It says connect.mayoclinic.org and so that’s how you get back here. The title of this thread is “Collagenous Colitis Relapse”.

So how long have you been on budesonide? You started at 9mg a day for 3 weeks then 6 mg a day for 2 weeks etc? And you couldn’t go to 3mg a day without symptoms returning?

Hi again. I'm a nurse so read everything out there on collagenous colitis. Initially, started on 9 mg/day for 4 weeks, then 6 mg/day for 4 weeks but only made it 2 weeks so GI started me back on 9 mg/day for 3 weeks. Just started 6 mg/day last week, suppose to be for 3 weeks also but pain and diarrhea slowly sneaking in. If it continues, I'll need to call and see what I need to do. What a nighmare. The fatigue is brutal. Nurses are use to running for 8+ hours!! I'm still working on diet. Can't have any dairy at all and very little of my "evening" sips of red wine. I buy immodium by the bucket load because I can't go out to dinner without taking it 1-2 hours before we eat. After all I see, I am thankful it's not worse. 🌻

I had 7 mos of house arrest from it. Couldn’t get enough control with lomotil or Imodium to risk going out. Had C-diff along the way. But I’m one of the lucky ones in that Budesonide worked within 5 days. I stayed on the 12 wk course and haven’t needed it again. But I also stopped all of the key known medication triggers NSAIDs, PPIs, SSRIs, , and haven’t relapsed. Good luck!!

Thanks! What do you take for acid refux? I hate to think GI is going to take me off omeprazole. They told me to keep using it for now but I might keep it every other day. I did stop NSAIDs. Here's to a remission! Glad for you.

This go round I was put on 9 mg for 2 months and then we will try to taper. I stopped all NSAIDs when all of this started last September. Went off dairy for about a month with no improvement. With my latest relapse I decided to go gluten free and see if that allows me to taper off the Budesonide or at least get to a lower dose. Seemed like it took the 9 mg dose longer to really take effect this time.

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.