Tom’s story: “Being diagnosed with Primary Sclerosing Cholangitis was a shock”

Tom has always been interested in health and fitness and has a very healthy lifestyle. When he began to experience fatigue and itchiness he never imagined they were symptoms of a liver condition, until he was diagnosed with primary sclerosing cholangitis and a gallstone. Thank you for sharing your story with us, Tom.

I’m 32 and a dad of two, married with a pretty relaxed lifestyle, but I do have PTSD, anxiety and waves of depression. What’s always helped me through this and general life is fitness. Being a fitness and mindset coach isn’t just a job, it’s who I am.

The signs of liver disease had always been there for me, but I didn’t realise they were symptoms of anything. I downplayed the general fatigue and itchiness, thinking I was probably under the weather or a little bit tired and although my wife had been pointing out for a number of years that I looked quite yellow, I’d just say: “Don’t be daft”.

Then when I was 27/28 I kept getting chronic nosebleeds. My doctor suggested blood tests and one thing that continually cropped up was raging LFT levels. After a lot of further testing, being prodded and poked, sleepovers in the hospital for days on end, missing birthdays and family occasions I got a diagnosis of primary sclerosis cholangitis and another nugget of gold – a whopping gallstone. Also, during the ERCP (endoscopic retrograde cholangiopancreatography) procedure they nipped my pancreas and I developed pancreatitis. I was in hospital for almost a week and had two months where I wasn’t working – either I was in too much pain or I couldn’t stay awake.

I hadn’t experienced any pain at all before, or at least none that I could put my finger on. I just thought I might have eaten something that was past its date. Now the gallstone was also causing day-to-day pain and discomfort.

There’s no cure for the primary sclerosing cholangitis and one of the symptoms that I didn’t think would be linked is chronic indigestion. I have medication for that and I’m also trying ursodeoxycholic acid. I could make things significantly worse by poor lifestyle choices so was told I needed to maintain a healthy lifestyle, including regular exercise and a well balanced diet.

The pain from the gallstone can be exhausting

The chronic fatigue is grim though and it's hard to explain to people that I’m always in pain from the gallstone and at what level it gets too uncomfortable. The pain can be exhausting, but I’m really fortunate that my family are very supportive. I’m a typical bloke – I can bury my head in the sand or be quiet or a little bit snappy, but my wife is the best – she’s good at spotting when I’m having a bad day and my mood is low. She’ll say: “Why don’t you go and lie down and have a bit of a chillout.”

As I’m now more aware of my energy levels I have to be stricter with myself to switch off and recognise that some days will be better than others. Having two children as well means it’s not always a case of stopping and downing tools, you have to plan in advance a little bit.

I try to manage my health through good sleep, exercise and my diet. I’ve always lived by an 80/20 principle – so 80 per cent of the time I eat really well, but I’m human so sometimes I still want a slice of cake or whatever. Over the years it’s been a good balanced diet, but I’m now more aware of the fat content of what I’m eating because my body isn’t absorbing and breaking down food as efficiently as it should. I’m now trialling having smaller meals more frequently. It seems to be going well so far, but I’m only two weeks in.

The surgeon has been very honest and said there’s a higher risk of cancer if my gallbladder isn’t removed, so wants to get it out in the next couple of months. This should also help me manage some of the other day-to-day issues I face with PSC. I’ve got a whole booklet on what could happen and if things were to deteriorate, there could also be discussions around a liver transplant.

I didn't have a fatty diet so being diagnosed with a liver condition was a shock

Before the diagnosis I didn’t know a great deal about liver disease other than the basics of what you learn in school. When you qualify within the fitness industry you have to learn a little bit more, but it wasn’t overly extensive. My lifestyle didn’t warrant having a liver disease. I wasn’t a drinker, I didn’t smoke. I didn’t have a fatty diet or anything like that, so being diagnosed was a shock, but it’s part of who I am now and I just get on with it. And hope to raise more and more awareness to others in a similar situation to me.

What has been really positive over the last three months is improvements in my blood tests. The jaundice has cleared up, the itching comes and goes and because it’s not so constant I can manage it. I’m quite lucky in that sense. For the next three years I’ll have a check-up every six months and then it will go to twelve, but if anything were to change, I can contact the hospital and they will react to it.

When I was diagnosed I was given some leaflets and was told to visit the British Liver Trust website. I try not to over-Google things but it’s hard not to. My doctor’s been very helpful with any question I’ve had at any point and given me the information I need and constantly signposts me back to the British Liver Trust, which a credit to the service the charity provides.


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