When Scott first noticed pains, he put it down to his back problems and kidney stones. He could never have imagined a few months later he'd be four stone lighter and in severe pain from pancreatitis.
“My name is Scott, I’m a retired mental health nurse. Having spent 30 years in the mental health sector, I’d say it’s left me with an odd sense of humour. I now live in rural Wales with my partner Teym. I love being so close to the countryside with him and our dogs.
I can’t pinpoint when I first noticed symptoms, because I had ongoing spinal problems, so I was already on quite heavy pain control. This made it tricky for me to spot new pain. I had several episodes of pain under my rib cage and around my bowel area, but I was already so used to being in pain I just managed it.
One morning I decided I better tell my GP about this. I didn’t think anything would really come of it. I started to plan my day out as normal. I rang the GPs who prescribed me some medication for my bowel. I then went to my volunteering job, had a haircut, and did the food shop for the week. It wasn’t until I got home that things started to kick off. After I had my partner’s lasagne (I still say to him today it was his lasagne!) I just dropped like a stone. I was violently sick and experiencing pain I’d never felt before. The only way I can describe it is it was like something was trying to cut me open or eat me. I still say to this day pancreatitis pain is in a league of its own. I thought I’d experienced pain before, but never like this.
I told Teym, “You’re going to have to call me an ambulance”. There was a 6 hour wait, so we got into his car and I screamed out in agony the whole way there.
At hospital I collapsed from the pain. I was lucky that the consultant recognised something wasn’t right. I was admitted to the ward attached to A&E for 3-4 days. I was later taken to the surgical ward where a stent was put into my gall bladder to prevent further stone issues, as it was discovered that gallstones had been the cause of my pancreatitis. It became apparent I had acute necrotising pancreatitis. I was later admitted to intensive care for almost three weeks. I hadn’t realised until afterwards, but the hospital had told Teym to be aware I may not recover. They thought I was going to die.
For a long time, it was constant scans, surgeries, and tubes. I lost four and a half stone in weight. During my initial admission and when stabilised I was transferred to another hospital and was lucky enough to have a fantastic consultant. He was able to provide supportive treatment and surgeries which aided the breakdown of the necrotic (dead tissue) pancreas so that the surgeon could clear it over several procedures.
Despite everything, I felt lucky at both hospitals. There wasn’t a specialist pancreatic ward, but all the staff really took care of me. They were in constant contact almost daily with the nearest specialist hospital. I can’t thank the staff enough. They were always so honest with me about what was happening. Doctors would draw the pancreas and explain what was happening to me, and nurses would laugh with me. Holding a good sense of humour was a saving grace for me. I truly believe it kept me going. The nurses would always ask, “How can you laugh?” I used to say, “What is happening to me is so bizarre, what else am I going to do? I can’t scream or cry anymore.” When you’re unwell people assume you’re miserable all the time, but I had to stay positive for my own mental health.
I surprise myself with what I managed to remember whilst in hospital. Some parts, I’d rather forget. I couldn’t even bathe myself some days, others I was so alert. I remember listening to BBC Radio 2 and hearing Steve Wright ask for song requests. I ended up asking for a song for the hospital staff. The fact I could text and make a request from intensive care still amazes me.
Life after being discharged can be equally as difficult as being in hospital. The constant appointments and lifestyle changes. For me it was the constant infections and anaemia. I now have type 3c diabetes too. I feel a twinge of pain and I’m on red alert.
I feel our pancreas is the lost organ. I see our pancreas as the reactor, and our body is the nuclear power station. If faulty, the whole building around it can implode. One thing that really helped me when I was unwell was keeping a list of things I want to do. I kept telling myself I had to stay well to visit Venice again, to get to the wedding we were supposed to go to in Majorca, see my family, friends, our pets. I know that can’t save your life, but when everything else is so out of your control, staying positive and planning gives you back some basic level of control again.”
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.