Matthew’s story – Primary Sclerosing Cholangitis (PSC)
"Around the time of my diagnosis, my doctor said, “You may be unlikely to see your children grow up.” I remember walking back to the car after in complete shock."
Tell us a little bit about you
“I’m Matt and I’m 40 years old. My wife and I live in Birmingham with our children, and I work full time as a betting shop manager. In my spare time, I love doing martial arts and supporting others in the chronic illness community, as I have several diagnoses.”
Talk us through your journey to diagnosis of Primary Sclerosing Cholangitis (PSC)
“In 2006, I was diagnosed with ulcerative colitis, which is a form of inflammatory bowel disease (IBD). Between 2007 and 2009, I was on immunosuppressive drugs for this, which kept my disease in remission. Regular blood tests, however, showed that this medication had lowered my white blood cell count too much and I had to come off it. From late 2009, I started to experience insomnia and bad itching. Blood tests showed that my liver function was abnormal. I had no other symptoms of PSC.
I had every test going and it was uncertain if I had PSC or auto-immune hepatitis. A biopsy revealed that levels measured to diagnose PSC were high. I received a diagnosis of PSC in 2013 but doctors believe I may have had it since around 2010. Most people with PSC also develop IBD at some point in their lifetime, but less the other way round.”
Have you experienced any complications of PSC?
“In PSC, bile cannot flow out of the liver properly due to narrowing in the bile ducts. I developed complications and my bowel shut down in 2019. Alongside this, regular liver scans also revealed liver scarring (cirrhosis), the most severe and extensive pattern of scarring.
This was a scary time for me filled with anxiety. My medical team wanted to form a stoma (bring the end of my small bowel out of my stomach to form an ileostomy) but because of my liver complications, I was told it was unsafe and risky. However, had a liver stent fitted and several weeks later, I had stoma surgery.“
Is there anything that sticks out to you from your journey?
“I remember my consultant telling me, “It helps to see your health conditions like jigsaw pieces that make up the bigger puzzle”. Liver function tests are one thing, then dealing with my fatigue is another element. It helped me break things down.”
How does PSC affect you in day-to-day life?
“Out of all my conditions, PSC impacts me the least. Besides fatigue, it’s more the mental impact. If I start to experience itching, this is usually a sign my PSC is aggravated. You’re always thinking ,“Is it my liver?” and it’s like a grey cloud always looming over. I almost expect the worst and think backwards from that, and this really helps me. I often think, “My body is trying to kill me”, then realise that my body is doing what it needs to do to protect me.”
How is your PSC monitored?
“I have an ultrasound scan every six months and blood tests every three to six months. It’s a fine balance between trying to stop my body attacking itself (as PSC is an auto-immune condition) versus it working too well. There are no easy roads, but this is the road I’m on and I try to look at the bigger picture.”
What are your hopes for the future with PSC?
“Ideally, a cure! It would also be great to see things developed to help quality of life with PSC. I have seen more awareness of PSC in hospital wards which is promising.
On my journey, I met a guy who had a liver transplant over 40 years ago now. He must be around 75 years old now and he’s doing fantastic. He’s always sharing photos, living life to the full with grandchildren. It empowers me even more so to instil hope into others too.“
Why are you sharing your story today?
“It has always been the same reason for me. To help others. I was diagnosed young and felt quite lonely. It was another lifelong diagnosis I was given, and I have had no choice but to manage it. Supporting people means a lot to me. I don’t want anyone to feel how I felt.
I think Guts UK is doing a great thing and helping many people, especially by talking about PSC. It’s a heavy story to explain and a lot of people do get upset reading PSC stories. But that’s my truth and others’ truth too.”
Anything else you’d like to add?
“Around the time of my diagnosis, my doctor said, “You may be unlikely to see your children grow up.” I remember walking back to the car after in complete shock. I remember thinking that from this day, I will appreciate every moment, every day and every holiday. I’m still here and the odds weren’t in my favour, but you’ve just got to do your best to keep progressing.”
Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.
People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that.
With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.
