I was diagnosed with psc 4 years ago and initially since I was in a foreign country they told me I had liver cancer. I came back to the states and was diagnosed with psc but my ca-19's were double normal and my enzymes were almost 400. I have responded well to ursodial and last May had an ercp which gave me pancreatitis as well. Since then I have had much more upper right quadrant pain than normal and now my gall bladder functions at 29%. At times the pain is excruciating and my asthma cough makes it worse. Since the ercp my enzymes are steady at 200 and I have been able to maintain body weight and the rest of my blood work is all normal for the first time in years but I have been having bouts with IBS and weird limb pain as well as bone pain. I think I am finally about to part ways with my gall bladder as many of my family have. Thank all of you for the feedback and if anyone is really having lower bowel problems please insist on getting tested for C-DIFF, as this is a horrid bacterial imbalance that will cause all kinds of problems.
By the way, I have also been diagnosed with the small bile duct version of psc.