My PSC story

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.

What a roller coaster ride. I like what you said about having learned ways to cope with this I think that the mental fight is crucial too. That helps with being flexible and retaining a sense of humor, both of which are hard to find at times.

ERCPs have a high percentage of causing pancreatitis-glad yours was mild.

How is your bloodwork?


I am so sorry about the ‘travel’ to get your diagnosis. as I discover new issues I am diagnosed with in addition to PSC, because unfortunately one autoimmune disease begets another, I try to be some smart about the disease. while learning and dealing with PSC, it can get a bit easier. I’ve modified my eating habits, document every pain, twinge, difference in body functions (including emotional ones), determined what my pain threshold is, carry a thermometer in my purse and make sure that each specialist is aware of current PSC status.
Finding and having found a way to cope is exhilarating. don’t stop, so much to live for…try not to let it overtake you.

My last LFT’S were ALT 252 ALP 389 AST 223. Never consistent…always up and down but never in the “normal range.”

Good idea, Tracy. I’ll start documenting every symptom or problem I have so I can discuss them with my liver specialist in January. (I was scheduled for an appointment today with him and a few weeks ago it got rescheduled for December and then that one got rescheduled for January. Oy vey!)

I’m 34 years old and with my 7 year old daughter and husband by my side, I’ll keep fighting. I’ve learned to listen to my body and when it says it’s enough, it’s enough. I volunteer at my daughters school a few days each week to keep me busy so I’m not home by myself thinking about things.

Awesome Brandy! We’re here for you and your family