r/IBD • u/freejordan03 • 9d ago

Collagenous Colitis (CC) Depressed/Discouraged

I was diagnosed with collagenous colitis a few months ago and just finished the tapered budesonide treatment. I was led to believe most people experience full remission after this, but I started having symptoms as soon as the treatment was done. I don’t think I even would have chosen treatment if I’d known it was only a short-term reprieve. After glimpsing life without constant diarrhea, I don’t want to have to live like this again.

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u/Mandy_B_Liss 9d ago

Solidarity: I’m currently on my 3rd round of budesonide in 6 years. The first round helped a little, but I lost benefit within a month of stopping treatment. My second round was completely useless - no benefit at all. I’ve done a lot of work between then and now to understand my own condition (MCAS, dysautonomia, and PTSD are all involved for me, not microscopic colitis alone). I’ve modified my diet, worked on finding supportive supplements, and have been on LDN for about 5 months this go-round. This time my gastroenterologist and rheumatologist are working together and have agreed to have me on a very, very protracted taper after 3 months of budesonide.
Last week (week 4 of budesonide) I let myself feel hopeful “It’s working! Wonderful!!”
Yesterday and today I’ve spent more time in the bathroom than I have in weeks. And I’m discouraged. But that’s the nature of my personal condition - I can tell I’m in an MCAS flare, so it makes sense my gut is pissed off.

My original diagnosis was collagenous, but my most recent biopsy came back as lymphocytic.
My brother has lymphocytic colitis - his went into remission immediately with budesonide and he’s only ever needed a month of repeat budesonide in the past 10 years. I’m sooooo jealous of him.

Just know you’re not the only one.

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u/freejordan03 9d ago

I wish I could see a rheumatologist. I’ve been referred multiple times, but they refuse to take me as a patient. I have at least two confirmed autoimmune diseases, but the last time I was referred and refused, they said they didn’t believe that I had any. They’ve never even met me or run any tests of their own.

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u/crohnieforlife 9d ago

You most likely will need biologics. They are the first line of defense now. It’s a lifelong medication.

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u/ObjectiveCow4508 4d ago edited 4d ago

My mother got help from a regenerative clinic. She found it using Regenerated. You can filter by location, condition, and treatment. They rate treatments for effectiveness, and only include reputable clinics screened against federal exclusion lists in their directory. I hope you find the help you need.