From Diagnosis to Determination: Jessica’s Story of Battling PSC and Emerging Stronger
March 1, 2021
Everyone’s journey with primary sclerosing cholangitis (PSC) is different. A doctor once compared this journey to the path we take in an airport to get to the flight gate. Some walk, some ride the moving sidewalk or the extra fast-moving sidewalk and get there quicker while others end up riding in one of the golf carts and make it to their gate before everyone else. Regardless of how fast your PSC progression is, one thing that we all share in our journey is our ability to face the challenges that PSC throws at us and our ability to fight back.
I was 21, I had a boyfriend I had been dating for about a year and I was living in an apartment in Toronto, Canada with my best friend, Kailee. Life was simple and my biggest worry in life was studying for my courses and completing my degree in Tourism Management. I remember the day that everything changed. I remember going to the bathroom and looking into the toilet and seeing what looked like red water. Kailee, came with me to the walk-in clinic and I saw a doctor who told me I needed to go to the emergency room. I remember sitting outside of that walk-in clinic and crying while Kailee tried to console me. I had been healthy my whole life and never needed to go to a hospital for anything. This was uncharted territory.
Over the next few months, I had blood tests, scopes, and doctor visits to figure out what was happening to me. In the end I was diagnosed with Ulcerative Colitis (UC). After about a year of urgent issues and a constant fear of not making it to the bathroom in time, my UC was getting worse. Around this time, my Gastroenterologist (GI) told me I looked pale and sent me to get some bloodwork done (I remember thinking how funny this was… I was a redhead who never went out in the sun without sunscreen, of course I looked pale!). At my next appointment, my labs came back with elevated liver enzymes. As we were talking about the results, he mentioned there is a possibility it could be something (he did not say what it was), but said I’m not showing any other symptoms such as itching, bruising, etc. As he said this, I interrupted him, “actually I have been itchy and had some bruising”. He stopped talking. We repeated the blood tests and then came my PSC diagnosis.
A year later my UC continued to get worse and eventually I ended up having an emergency colectomy with a temporary ileostomy. This was my first time ever having to be admitted to hospital for any longer than just a few hours and I was on the other side of the country from any family. I did not realize it at the time, but I could have died. Another year later I had my life back! I decided to opt in for surgery to reconnect my ileum and that surgery was a success.
Life was good and my PSC symptoms didn’t start to affect my quality of life until my early 30s. I was working full time hours at a job I enjoyed. I had just been promoted to a supervisor position, but I was working rotating grave shifts and for the first time in my life my health was starting to interfere with my work. My doctor told me I wouldn’t be able to maintain working grave shifts for very much longer before it would become too taxing on my body, I was starting to suffer from fatigue and my work schedule was making things much worse. I decided to change my job and make changes in my personal life. My husband and I had just bought a house and we were looking at the possibility of having children. We moved into our house in January. I started my new job in April. About a week or two into my new job I ended up in the hospital for an emergency surgery to repair a perforated ulcer. I made it through the surgery and was discharged about a week later. I had escaped death once again! (I was starting to feel like a cat with 9 lives at this point).
I was only home for a couple of days before my skin colour and my fatigue sent me back to the hospital. My skin was so yellow that I looked like one of the Simpsons! I also did not have enough energy to stand in a shower and wash my own hair. The transplant team had been called and I was then placed at the top of the liver transplant list. Then something happened… My labs started to get better. I do not know how or why, but my liver managed to dig itself out of a deep hole and eventually my labs were back to the way they were before my ulcer.
After my last surgery, my labs were back to “normal” but it took a toll on my body. My fatigue was now a constant struggle, but it was one I could manage. Over the last seven years my fatigue continues to get worse and it now affects my day-to-day life. I must watch my salt intake and wear compression socks almost every day now. I also have frequent bouts of nausea, headaches, and the itching (which I used to experience only once in a blue moon) is starting to become a challenge. On paper, my labs are not great, but my MELD does not even put me on the liver transplant list, yet I’m walking a fine line between compensated and decompensated liver cirrhosis. A transplant is on the horizon, we are just not sure if it will be in the next year or the next five years, but it’s something I have to start planning for.


It’s such a strange thing, from being a kid who almost never got sick to becoming a young adult who was diagnosed with two non-curable diseases, to now, not even middle-aged, yet planning for a liver transplant. PSC and UC have taken away my ability to go after what I really wanted in a career, my possibility of ever having children, and my reliability to follow through with plans I make with friends and family. At the same time, I have learned at a young age that I am stronger than I ever thought I was. I have learned to appreciate the things I have, and not to take the days I have for granted. I have also learned to roll with the punches, to try to listen to what my body tells me, and not to sweat the small stuff. Life is hard, life with PSC is harder, but I have met some amazing warriors along the way, and I am one of them.
After being diagnosed with ulcerative colitis in 2003, Jessica was also diagnosed with PSC a year later. She has fought through 2 emergency surgeries and has a liver transplant on the horizon. Jessica talks about how life with PSC or any chronic illness is hard, but there are so many things to be thankful for and that she has learned along the way.