Hi all, and happy holidays!
After 29 years with my j-pouch I received a new diagnosis last week, and am wondering if there is anyone else out there who's been diagnosed with it. It's called collagenous pouchitis, and we've only found one other case in the literature search, described by Dr. Shen (of course) back in 2006. It's normally a disease that is restricted to the colon, from what I can understand, but they found it in my pouch.
I see Dr. Sandborn in San Diego, and this was diagnosed by scope biopsies, after about 1.5 yrs of increased watery frequency (15-20/day), and many other negative test results for Crohn's, etc. We're following Dr. Shen's medication protocol for it, as it's the only guideline available (Cipro + Tinidazole for a month), and his patient got better (biopsies and symptoms). When it's in the colon it's called collagenous colitis, and responds to different medications. I'm currently on Simponi for ankylosing spondylitis, and that's going well for the joint pains, but not helpful for the gut.
It's only been a week on these antibiotics, and I haven't noticed a change yet. In addition, after using fluoroquinolones for pouchitis for most of those 29 years, I recently developed tendonitis in several areas, after a bout of Levaquin, and had to discontinue it, so am not sure I'll make it to a month with Cipro...but fingers crossed.
Is there anyone else out there who's had this diagnosis and if so, has a treatment protocol that worked for them? I'll keep you updated on my progress, anyway, in the hope that this could be helpful to someone else, sometime.
Thanks so much!
Renee
My history:
J-pouch for ulcerative colitis 1988, recurrent antibiotic-responsive pouchitis (until this collagenous thing), dx ankylosing spondylitis 2015