PSC--any info?

Hello again,
I just wanted to re-post this topic in case any new, fresh eyes would see it! Does anyone have any info on PSC (primary schlerosing cholangitis)? I was diagnosed with it at the age of 16 (with my UC diagnosis..I am now 21) and have been on Ursodiol ever since. My liver levels have remained stable. I am wondering what may happen to me long-term--for example, is there a high chance i'll need a liver transplant, etc etc. My doctors never talked about the disease in the long run (perhaps because I was so young when diagnosed) so now that I realize it is serious, i'm starting to get worried!

Thanks so much

Post Edited (emilee9182) : 9/30/2012 9:25:18 PM (GMT-6)

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killcolitis said...
http://stanmed.stanford.edu/2011spring/article6.html

That was a great find, terrific article.

vancomycin

stanmed.stanford.edu/2011spring/article6.html

I keep posting that article when I hear of people with PSC dxs. I don't know how many follow it up but the one I know who did for their 11 year daughter (who was dxed with both UC and PSC at age 4 and was facing colectomy) is now a good friend of mine. Her daughter is "healed". Both of her diseases are in complete remission and this has been the case of all of the children treated at Stanford for UC/PSC by the Dr in the article. If it were me or my child, that's where I would be headed. Most docs, of course, don't know about this and send patients off for liver transplants/colectomies instead. There's no guarantee of course but they're having excellent results so far.