Hi there, I also have PSC. I don't get on here much anymore but saw your post and wanted to reply. I was diagnosed after my Jpouch surgery. At first it scared me to death but I am doing OK. I take one medication daily for it Ursodiol and my doctor monitors my liver numbers closely. I also have to get regular MRIs and ultrasounds as I have a gallstone they are watching. The main issue I have is itching but I hate the medicine for it so I don't take it. I have a lot of joint pain lately that I'm going to mention at my appointment. I think is related to this. I have had three ERCPs by well qualified doctors in SW Ohio and they couldn't get into bile ducts so they just leave them alone. There is a really good Facebook group that I belong to for PSC patients. Hope you are doing well.
38 year old Female from the Buckeye State. Initally misdiagnosed Crohn's Oct 2013. 2nd opinion at Cleveland Clinic rediagnosed Severe Pancolitis/Ulcerative Colitis Jun 2014. 3 recurrences of C-DIFF Spring 2014. Fecal transplant May 2014. PSC diagnosis 2017.
Failed Meds: Asacol HD, Prednisone, Humira, Flagyl, Vanco, and Dificid
Step 3 J-pouch surgery finished: February 2015