Help-newly diagnosed with crohns now primary sclerosing choleangitis??

I have both diseases PSC and Crohns, actually the ERCP is from what I understand the "gold standard" of tests for PSC.  I was diagnosed in 2002, yes I was scared but I have learned to try not to dwell on it.  I have had 2 liver biopsies, that is also another test they can do to see how extensive it is, if indeed you have it.   I think that there is a new test an MRCP (less invasive) that they can do, maybe you can ask your Dr. about that one.  I have only had the ERCP, I'm not sure that I can have the MRCP because I have a vena cava filter (for blood clots).

Chris, I went on Urso for several months it is very expensive, my Doctor finally said that it hasn't been proven to be effective in PSC just in PBC so he took me off of it.  I am currently in a study from Mayo Clinic so hopefully that medicine will prove to help.  Right now there really isn't any treatment besides the eventual liver transplant, at least that I know of.  I belong to another board that is for PSC, there are people on there that have had it for 20 years without transplant.  The doctors go by your "Meld score" which I believe is described on Mayo's site, when it reaches a  certain number they will begin to get you listed.  I am at a stage 2 to 3 (of 4) right now and I am not being listed at this point.  I was very scared when I was originally diagnosed because my doctor while looking at my liver biopsy results said "hmmm they say you have PSC, there's no cure for that, just a liver transplant for end stage".  Well, I left his office went home and researced it and saw that Walter Payton had it and died shortly after, OMG scared me half to death, but then I have heard that most people live for quite some time without to many problems. And like I said I have had it now for 5 years and I actually have had more trouble with crohns then PSC.  Strangely in some ways it has been a bit of a blessing to be diagnosed with both diseases because I no longer take life for granted, I am very thankful for each day, week, year that passes and I'm able to enjoy all of my family and friends it was certainly a wake call to stop stressing the small stuff.