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.

The post Tom’s story: “Being diagnosed with Primary Sclerosing Cholangitis was a shock” appeared first on British Liver Trust.

I stood up in the mailroom at work and could not sit down again because the stabbing pain in my lower abdomen was shocking and unbearable. It was so bad it made me sick, every time.

The pain had been moving around for two weeks, one minute under my breast, one minute in my breast, more recently it appeared to have settled, but not in a good way.

How I got the bus home I will never know. I was in agony. I took more useless ibuprofen which no longer worked and went straight to bed. My husband is a nurse and he thought it was liver pain. I rang the GP and was crying down the phone to the receptionist, who said there were no appointments for two weeks and I should ring the out-of-hours service. She said she would text me the number, but never did. I later found out I would have to ring the GP again the next morning to get an appointment.

My nose started to run – or so I thought. Imagine my surprise and devastation as the blood flooded out all over my beautiful bedding. I managed to sleep through the night but woke up screaming in pain. I kept ringing the GP service but getting no reply. 9am came, as did 10 and 11am and by this point we were both trying the out-of-hours service, the GP and the health centre. It was Good Friday and we all know that people do not take sick or die on a Bank Holiday, do we not?

I was screaming in agony and my husband rang 111 who advised us that an ambulance would be with us in two hours, asked if there was angina in my family and if I had any aspirin. They thought I was having a heart attack.

I ended up in A&, shaking with pain. I thought I was having the DTs

The ambulance actually came in ten minutes. They examined me and asked if I was normally yellow, if I needed a stretcher and did I have a bag, which I thought were strange questions for someone who only needed a painkiller. I ended up in Fairfield A&E in Bury shaking with pain. I thought I was having the DTs (delirium tremens). When I explained to the nurse about the pain in my back, she said the doctor would see me straight away. The doctor looked about 10 years old, maybe 20, but he was very nice. He asked the million-dollar question – how much I drank a week or a night.

“Too much” was my clever reply, thinking I’d got out of that nicely.

“How much is too much?”

My jaw dropped. Now I would have to tell him the truth, well sort of. It was two to three bottles of wine on a Saturday and six to eight cans of cider during the week.

I asked him if I was going to die and he said the words I will never forget: “No, not tonight, but if you keep this up you’ll be dead in two years.”

Because I wasn’t sleeping and in so much pain, I didn’t really take in what he said. I didn’t realise until I came out of hospital how poorly I had actually been.

I later had a chest Xray and a cat scan and was so tired I nearly fell asleep. Then I finally got my painkillers – two tiny codeine tablets that turned out to be better than sex…well, nearly.  I was asked if I was having regular periods and they insisted on a pregnancy test.

The doctors said I had hepatitis caused by drinking, but kept changing their minds and I was given three antibiotics via a drip.

My husband thought I had cirrhosis because I’d been scratching, waking up with bruises and would be drunk after a glass of wine

I was taken to Oldham hospital via the medical and surgical team – they thought I had an infection and something else with my gallbladder. When I rang my husband, he said he thought I had cirrhosis because I’d been scratching, waking up with bruises and would be drunk after a glass of wine. He said he’d seen it coming and it was his fault. Because I was on codeine, gas and air I just laughed at what should have been devastating news. I found out later that I had cholecystitis which is inflammation of the gallbladder.

Unbeknown to me I had started going yellow, but two ECGs showed I wasn’t having a heart attack – so every cloud! At 3am I was admitted onto a ward and I lay there frightened, alone and back in pain. In the morning I was told I would be on clear fluids, with nothing to eat. I would have water through a drip and to a jug and coffee, but no milk and apple juice.

I stayed in hospital for a week. The nights were the worst – the drips beeped at each other and some patients had the TV on dead loud, but all I cared about was the pain. The tablets knocked it on the head for a couple of hours, but I always knew when they were due. I called the staff nurses my drug dealers as they gave me my pain killers.

The doctors said they wanted to do more tests and one of the nurses said I should drink more fluids otherwise I would end up looking like a character from The Simpsons.

Then everything changed. The doctor told me my rubin levels were up but all I cared about was the pain. How hard could it be to get more painkillers! The jaundice was in my eyes by now – when my husband saw me I thought he was going to burst into tears. An ECRP specialist nurse told me the radiology team would put a camera down my throat and if they found a gallstone they would remove it. The pain was so intense that I wasn’t really listening. Thankfully my husband Sean was there and he asked all the questions.

I was allowed to eat up to 3am before the procedure at 9am – I had visions of patients stuffing their bellies at 2am, but that didn’t happen! I was asked about a pregnancy test and I told her I was 52! I was injected with a very strong painkiller and sedative and they put something in my mouth and on my hip. I shut my eyes as I didn’t want to see what was going on. I burped and burped while they did the procedure – that was gross but I was told this was normal. Then I heard them say it’s massive and something about a balloon, I was sick and the gallstone came out. When they took out the tube I think I started crying. Back on the ward I was told I could only have a light diet of soup and jelly.

I was told the procedure had gone well and that they’d found a 15mm gallstone and that I was young, fit and healthy but if it happened again, I would need to have my gallbladder out. I later found out that if they hadn’t removed it I would have been dead in 48 hours.

I was no longer a luminous yellow, but more of a magnolia colour. I asked the consultant if I could go home, he said yes, but on the understanding that I went to my GP and got my bilirubin levels checked.

A lady from the alcohol unit came to see me as I was being discharged. She was fuming because she said she should have been told about me when I was brought in, but that had been Good Friday and the hospital was understaffed. I wasn’t really listening to her because I just wanted to go home, but she talked about pathways and getting a sponsor.

My mum later asked me if they would let me keep the gall stone in a jar like they did in her day. Why would I want to look at it, much less keep it? It had tried to kill me after all.

I went home with the biggest antibiotics I’ve ever seen in my life. I kept coughing after taking them and something like a foam bubble bath was coming out of my mouth. I also had a rash all over my tummy and arms and later my legs. The GP’s nurse told me to get antihistamines and asked if I’d changed my washing powder. Of course I hadn’t, I’d been in hospital! I think it was an allergic reaction, but the nurse didn’t seem to be worried and the rash went away.

I do feel like a ticking time bomb because it could happen again at any time and the pain is worse than having a baby, but have I had a drink since? Yes, but not nearly as much as I used to. I’ve been given a second chance and, by God, I intent to take it!

The post Alison’s story: “I’ve been given a second chance and by God, I intend to take it’ appeared first on British Liver Trust.

It took a long time to diagnose AIH.

It started before Christmas 2013 with nausea and weakness. I was unable to deal with Christmas, the presents or cooking dinner. On the morning of 4^th January 2014, our 40^th Wedding Anniversary, I was sick. I went to the celebrations despite feeling unwell and unable to eat.

On 12^th January I awoke slightly jaundiced and passing dark brown urine. I saw the GP who examined me and diagnosed Obstructive Jaundice; I was sent for a blood test and an ultrasound scan. I had to wait a week for the scan, which was painful.

Unable to wait two weeks for the result I saw another GP the next day who felt my liver, it was swollen. He sent me to the EAU where I was tested for viruses, Hep A etc., bacteria and HIV. They asked if I had made a will. I was sent home, as they had found nothing.

Tests

My ALT had gone down from 2,600; they thought I was getting better. I still felt very ill and could hardly eat.  A follow up appointment confirmed there were no viruses and liver enzymes were going down although my bilirubin was still high. I was “getting better” they thought I had had a gallstone. They found too much calcium in my blood but didn’t treat it. Eventually I had a parathyroidectomy done privately and felt quite a lot better for a while. I also had a DEXA Scan and was found to have osteoporosis.

I got worse again, feeling continually sick; my husband took me to A&E numerous times. I had my bloods taken and was sent home.  On the morning of 7^th Feb 2014 I had a home visit, I felt too ill to go anywhere. The doctor said I was better off at home because of the risk of infection in hospital.

Next morning I couldn’t stop drinking water, I then vomited it all up. An out of hours doctor sent me to hospital. There I had a chest X-Ray, an ultrasound scan, a CT scan and eventually a gastroscopy. Afterwards I was sent home feeling ill. The follow-up appointment with a surgeon showed a gallstone. I saw the anaesthetist a number of times. He was becoming increasingly worried about operating because I have asthma and was getting weaker and needed a wheelchair to reach my appointments. At the next appointment the stone wasn’t there. Was it was someone else’s scan?

2016 I had another gastroscopy, a hiatus hernia, gastritis, and the possible remains of two peptic ulcers were found. My ALT continued to go up and down. A dietician was seeing me in a local hospital, as I could hardly eat. She put me on Fresubin because I was losing weight.

The doctor seeing me there thought it was all in my mind. I was on tablets for anxiety and depression. I became scared of being left on my own and begged my husband not to go out. By June I was shaking and staying in bed. The GP put me on an antipsychotic. It stopped the shaking, but left me like a zombie. The GP agreed I should stop. Continual blood tests were done, LFTs went up and down.

Diagnosis

2017 started reasonably. They were still thinking of removing the gallbladder. By April my ALT had gone up to 700. Jaundiced again, the hospital doctor who saw me locally admitted me to hospital they stopped my antidepressants. I had an MRI scan, an ERCP with sphincterotomy and was discharged on 4^th May. I was readmitted several times between May and July, during which time I had a painful liver biopsy, afterwards I had a vasovagal incident and was in recovery some hours. On 22^nd June I was diagnosed with autoimmune hepatitis (AIH).

Next day I had a psychotic episode and I was taken from home by ambulance, sectioned under the Mental Health Act and put in a secure unit.

Not eating, weighing 42.8kg I was re-admitted on 2^nd July to the main hospital with sepsis again. Once better returning to the secure unit I was still having psychotic episodes. It improved as the dose of steroids was reduced and immunosuppresants introduced. It hasn’t returned. Near the end of July my liver was getting better and I was starting to eat properly; I was allowed to go home at the start of September weighing 47.8kg.

I continue with blood tests, follow-ups and scans. I’m now under the care of another consultant at a different hospital as my doctor left. My life saved, for which I am grateful, it took a long time to diagnose AIH.

This badly affected my family who were worried, AIH being partly genetic my children, thought they could contract it.

I have since been told I have cirrhosis but that my liver is stable. I do feel however, whether rightly or wrongly, that I should have been thoroughly investigated the first time I was jaundiced.  Maybe, just maybe, cirrhosis could have been prevented.

The post Clare’s story: “The doctor thought it was all in my mind” appeared first on British Liver Trust.