Ray’s Story

My name is Ray and I’m 53 years old. I’m married to Jackie and I have a son named Daniel and his partner Bethany. I love singing, playing guitar and racing cycles.

In December 2019, I ended up in A&E three times with severe pain under my ribs. I was treated for Irritable Bowel Syndrome (IBS) and sent home.

In March 2020, I suffered pain like never before. At hospital, it was discovered I had gallstones. My bile duct had become blocked by a gallstone. A stent was inserted to allow bile to pass, and hopefully the gallstones too. Due to COVID restrictions, removing my gallbladder completely was not an option. But a large stone became stuck and entered the pancreas itself. This is when the pancreatitis started. I’d never heard the word ‘pancreatitis’ before.

During my first stay, I contracted COVID and found myself in intensive care needing oxygen. I lost 3 stone in weight. I would never have known that this would begin a 15-month-long struggle for my life. I had 19 hospital stays and all the while, I was out of work with no income.

Each time I returned home, I ended up back in hospital days later, only worse. I became severely infected and was placed on antibiotics along with a drain to the gallbladder. I developed sepsis and I became critical. A pseudocyst grew on my pancreas, restricting blood flow, my appetite, and my ability to digest food. My weight loss continued at a rate of 1kg per week. The pain was so severe that the strongest painkillers available made little difference. My mental state was at an all-time low. I spent a lot of time crying and panicking because of the weight loss.

By August, my pseudocyst had reached the size of a small melon and my pancreas was suffering necrosis at 96%. My wife Jackie and I said our ‘proper’ goodbyes four times. I tried to stay brave in front of her, but I knew I was dying. This is a position I never want us to be in again, nor anyone else should have to experience.

I weighed just 7 stone and had sepsis for the fourth time. Doctors and consultants politely suggested I get my affairs in order. Even with a feeding tube into my boweI, I was losing weight. There had been times when I wanted to pull the cannulas from my arm and drift away.

The pain when wrenching to be sick was like a knife in my gut. The mutual decision was to transfer me to a London hospital, where my pseudocyst was removed, a drain inserted to remove fluid and dead pancreatic tissue. The risks were high. I’d lost 6 stone in weight at this point and could barely walk.

Then, the miracle started to happen. My body began to accept food after the pseudocyst removal. I could now consume pancreatic enzymes to help me digest food. A month after surgery, I added 1kg to my body weight! This may not seem like much, but to me it felt like I had just moved a mountain. I cried with happiness.

Things were looking positive. It was tough to watch my wife Jackie suffer, as she watched her husband fighting, trying not to die.

My last admittance to hospital was in November 2020, eight months on from developing pancreatitis. The consultant looked at my notes and said ‘I’m not sending you home until we’ve fixed this. You may spend Christmas here, is that ok?’ I was happy to do this, as long as I was alive.

I was discharged one week before Christmas. Jackie and I were exhausted and mentally drained. Despite spending Christmas day penniless, we were together. We were holding one another. We couldn’t believe I’d escaped. In April 2021, my gallbladder was removed. I have had no ill effects since.

I now weigh 12 stone and work out in the gym with no further re-occurrences. I ride my bike regularly and plan on track racing at the ‘worlds’ in two years’ time. I still require pancreatic enzymes, but have somehow escaped diabetes.

The greatest thing is that I’d survived to become a grandad in September to our beautiful one month old granddaughter, Isla Rae.

I see my future to be positive, but I realise how lucky I am, and so I enjoy every minute of my life. I try to help other sufferers where I can and I genuinely feel that Guts UK do a fabulous job of raising awareness.

There is no effective treatment for pancreatitis. There is no cure

Guts UK is the only UK charity funding a research fellowship into pancreatitis. We are dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition.

People are suffering, people are dying, all because of a lack of knowledge about our guts. Join our community and champion our cause by donating to our life-saving research today.