Kim was only 16 when she was diagnosed with primary sclerosing cholangitis and ulcerative colitis, which affected her quality of life, studies and friendships. Now 29, and following surgery, she lives a ‘fairly normal’ life and has peace of mind. Thank you for sharing your story, Kim
From a young age I had headaches, tiredness and stomach pains. A paediatrician diagnosed growing pains and stress, while the headaches were put down to sinusitis and an eye test was suggested. When I was 16 the symptoms and pain became severe and I started acting really erratically – I thought everyone was my enemy and I hated all my teachers and no one could understand why my behaviour had changed so much. I was admitted to hospital and after numerous scans and tests primary sclerosing cholangitis and ulcerative colitis were confirmed.
Having two chronic conditions was devastating. They affected what I could do on a daily basis and it was very difficult for people to understand that they wouldn’t get better. I’d been a gymnast for eight years but had to give it up and my teachers and friends at college were concerned because I kept complaining of headaches and falling asleep. I missed so much of my course that I got put back for a year which also caused me to lose friendships. The illnesses had a great impact on my family too, my mum had to stay in hospital with me for nearly two months, supported by my dad and brother, which caused her difficulties at work.
Support from British Liver Trust
I was determined not let these illnesses rule my life and I got a lot of support from my clinical nurse and youth worker. I also joined the British Liver Trust’s PSC support group and the Children’s Liver Disease Foundation and gained a lot of support from both. They are there for me and my family when we need them.
It took me three years, but I eventually finished college aged 19, then completed an access course to get into university and a physiotherapy degree which took seven years due to my health. 
In my first year at university I was in and out of hospital with infections and when I got one in my liver it would upset my bowels and vice versa. By now I’d been on steroids for six years and my doctors were running out of treatments. I had infusions every eight weeks at the hospital, but they didn’t make any difference, after six months they tried something called Humira where I had a loading dose of five injections and would then inject myself every two weeks. That didn’t really help much either, so they upped it to every week, but again there was no improvement.
As I was recovering from the surgery my liver function started getting better
I was now quite poorly and had no quality of life. I was on NG feeding and would try to eat more, but the nausea was bad and I knew it would upset my bowels so I was underweight and couldn’t maintain my muscle. Wherever I went I had to plan carefully to make sure there was a toilet and it got to a point where I couldn’t leave the house because I was having accidents which was horrible and embarrassing.
My doctors said I could either stay on the Humira and see if it would have an effect or try surgery. Between the surgeons, IBD nurses and me we decided on the surgery and I had a subtotal colectomy where they removed my entire colon and replaced it with a stoma bag. I opted for elective rather than emergency surgery to avoid any issues and complications.
As I was recovering from the surgery my liver function started getting better and now my liver has calmed right down and I have managed to stay out of hospital for three years. I don’t have to worry any more about there being a toilet if I go out and have an app on my phone that alerts me as to when the stoma bag is getting full, which is good for my peace of mind.
My liver is bad, but also good
I now have an MRI, FibroScan and ultrasound every year and go to clinic every six months. The sonographer told me that while my liver is bad, it’s also good, which means that while it doesn’t look like a normal person’s liver it’s doing quite well considering the PSC.
I’m now 29 and living a fairly normal life. My main symptom is itching and they’ve tried a few things for that, but since I’ve been on Maralixibat for the last year I’ve noticed the difference. There’s always the possibility that I might need a transplant, but there’s a lot of research and drug trials into PSC and the liver where they’re looking at either slowing the progression of the disease or finding a treatment that works so a patient doesn’t need a transplant, so that’s a good thing.
If you’re diagnosed with PSC look at all the options. Communication is the most important thing. Talk to your family about it and don’t be afraid to ask any kind of questions of your consultant, even if you think it might sound stupid.
