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Diagnosed with Primary Sclerosing Cholangitis January 2022

I was originally diagnosed with Crohn's Colitis on 31/12/2003. After lots of issues, flares, extra-intestinal problems with hearing, eyes, joints, etc. and my disease out of control I had my large bowel removed and an ileostomy formed in September 2018.

Getting my life back was great, no more spending all my life near, or using, toilets and no more steroids! All was well, but I got a surprising revelation later in 2018, when I was informed that the histology on the removed bowel gave a diagnosis that it was more likely to be Ulcerative Colitis instead of Crohn's Disease. What appeared to be an issue at the end of my small bowel was 'ileal backwash'.

Fast forward to September 2021 and I started to bleed from around my stoma. My stoma was not the same as my wife's - hers is a loop ileostomy, but the skin around it is flat and normal colour. My stoma often looked like it had a large bruise around it, together with some slightly raised veins. No one had ever commented on it, so I just thought it was normal. However, I was to learn that the raised veins were varices caused by portal hypertension. On my first bleed I lost around 10-12 stoma bags full of blood over a 14 hours period.

Following morning my stoma nurse came to see me and to check that I hadn't injured my stoma to cause the bleeding. She told me it looked like I had caput medusae around the stoma and that my stoma itself was healthy and uninjured. She suggested I speak with my gastro consultant as a matter of urgency to get confirmation.

As a bit of additional info - my liver function test results had always been abnormal, from before diagnosis in 2003 and continue to be so now. In 2011 my gastro had a liver biopsy carried out. The result from that were mild steatosis and possible NAFLD from the medications I was on at the time. I had always found it odd that my ESR and CRP blood tests were always pretty normal even while flaring, but my LFT results became more deranged and then improved as the IBD settled back down.

An urgent CT scan later and it was confirmed that I had signs of portal hypertension, varices, enlarged spleen and possible cirrhosis of the liver. I then used my private insurance to see a consultant hepatologist at the Cromwell Hospital in Kensington in October 2021. After 3 months with MRI scans, ultrasound scans, gastroscopy and a liver biopsy, I had a diagnosis of PSC, grade 1 oesophageal varices, stomal varices and cirrhosis. Approximately 70% of my liver was cirrhotic and not functioning, but the remaining part was compensating remarkably well despite the PSC.

I now have annual MRCP MRI scans, 6 monthly abdominal ultrasound scans, annual gastroscopy, annual flexi sigmoidoscopy on my rectal stump and regular blood tests including cancer markers as my surveillance for complications such as cancer of the liver, gall bladder, etc.

I still have bleeds, none as bad as the first one, and still from around my stoma. Managing the bleeds has become easier as I know how to get them under control quickly. I was told to attend my local A&E (Medway Hospital) with every bleed, but after the experience of my first bleed and the local A&E dismissing it I won't be bothering with that route. Any issues means I will be travelling a little further to Maidstone Hospital if it is too severe to get to Kings Hospital.

I did complain to PALS about my treatment, or lack of, for the first bleed and haven't heard anything in 2 years, so assume it is as important as correctly dealing with a severe bleed. The local outpatients services are ok, and the one time I spent as an inpatient due to a bad flare up in 2009 was ok. My previous experience of A&E had been ok, but since the COVID pandemic, I'm better off going to my GP or local chemist to get the materials to treat things myself.

PSC was something I read about as a rare consequence of IBD years ago and never thought it would affect me. Then again, dry eyes, joint pain, neuropathy, auto-immune hearing loss and osteopenia were also things that I didn't think would affect me.