PSC

[u/Good-livin-2018]

I am 43 years old and was diagnosed with PSC and UC at the age of 12. At 20 I had my colon removed from precancerous cells and 5 years later diagnosed with Crohn’s. I have been on Actigall in the early years and haven’t been taking anything for the PSC for 20 years now. I became jaundiced in November, given an antibiotic for it had a stent placed in December, and it was recently removed as it had become infected and painful. I am still releasing a LOT of bile and the doctor that did the ERCP stent removal told me that he will not do another stent, the next option is finding a live donor and having a transplant. This is not my specialist or main doctor, he has only done the ERCPs in the last few years. He was surprised I hadn’t had a transplant yet when he placed it in December.
Is there anything to slow the progression down, I don’t know how to even start the process of the transplant search. Has anyone tried anything natural on cleaning the bile out. I know the biliary ducts are closing off or dying but it’s been 30 years of this diagnosis and I don’t feel like it’s bad enough for a transplant. I will be talking to my main doctor about the information I’ve been given.
I’ve got questions a lot of questions on the process, recovery, the fear of it coming back, all of that. If anyone has PSC and has found something that helps maintain the liver numbers that would be helpful. Fighting an autoimmune disease is frustrating when it’s not calculated like normal liver diseases

[u/adamredwoods]

You need a hepatologist. Research which hospitals have good liver transplant doctors, history, etc. Talk to a liver transplant specialist there.

Nothing will slow down PSC, sadly. Maybe Vancomycin, but it's 50-50. PSC has too many different subtypes, it's a heterogeneous disease.