I was diagnosed with UC in July 2011. I had my gallbladder removed on 11/11/11 and was diagnosed with fatty liver disease. In May 2014, I went to the ER with severe upper right quadrant pain. Ct scan showed a 9mm lesion on the right lobe of my liver. My GI doctor got the results the next day and sent me for an MRCP. After my GI doctor got those results, I was sent for an ERCP. No one was telling me anything. All I knew about was the lesion. After I was prepped for surgery, the doctor came in to introduce himself and told my husband and I they were going to check my bile ducts. We were completely confused since we knew nothing. I was scared as they wheeled me back to the surgery room where I was greeted by a room full of doctors.
When I woke up in recovery, the doctor told my husband and I what he had found...PSC. We were floored and had no idea what PSC was. The doctor said my main bile duct was diffusely abnormal, found it bruised, bleeding and "raggedy". There was a severe focal stricture of the mid main bile duct as well as the distal main bile duct. There was a moderate stricture in the upper common bile duct. There were long moderate strictures in my left and right hepatic ducts. Focal strictures were found in my right and left intrahepatic ducts with segments of dilation. (2 weeks later my brushings came back rare atypical cells.)
Once my husband and I got home, we researched PSC. I was freaked out and scared out of my mind. After more research, I found this website and learned I wasn't the only one fighting this rare disease. Reading the stories of others, I have learned ways to cope and accept my diagnosis.
Within the last year, I have also been diagnosed with Gastroparesis, dysmotility, Gastritis, a subcentimeter cyst in my left kidney, and in general, bad luck. August 2015, I had another ERCP. PSC was progressing. Strictures were found measuring up to 10mm. Portions of my ducts were dilated. Some of the contrast from the ERCP got in my pancreatic duct and I ended up in the hospital for 3 days with mild acute pancreatitis. The brushings from this ERCP came back a few atypical cells present, favor reactive changes.