Sclerosing Cholangitis

I am 27 and  I was diagnosed with Primary Sclerosing Cholangitis last June 2007 after an abnormal blood test.  I have been told that I am at the early stages of this disease & that I have nothing to worry about!

However I can't not worry as  I have had surgery to remove my large intestine due to Ulcerative Colitis & also I suffer from Ankylosing Spondylitis another auto immune disease.  

I have read up on PSC but I would like to know if any other people have gone through this and could you tell me how this disease has affected your quality of life?  I know I'm jumping the gun a bit but I would rather know what is ahead of me than being stuck in the dark.

I'd appreciate any help and information.

[mikesimon]

I don't have PSC but I was transplanted for HCV in 2000 and a woman who had PSC got a liver around the same time. We became friends and still stay in touch. I spoke with her 2 weeks ago and I believe she is doing well. She is 55 years of age.
I certainly don't want to upset you but I have to question what your doctor means when he says you are at "the early stages...and have nothing to worry about". PSC is a progressive disease which should be monitored closely and regularly.
Are you taking any medication - Urso or steroids? Is your bile flow unobstructed?
I assume you have read enough about PSC that you know the possibilities. My friend also suffers from ulcerative colitis and has to monitor that closely. I believe that her transplant immunosuppressive drug regimen (which I think includes steroids and tacrolimus) has a beneficial impact on her diseases. Since she hasn't mentioned any recent problems I assume she is doing very well because we are always candid about our medical issues.
I wish you well Marley.
Mike