Mark’s Story

In October 2016, my wife Kell and I returned home from an outing. I felt fit and well. Two minutes later, I was vomiting, dripping wet with sweat and collapsed on the floor with horrendous pain. The pain was like nothing I had ever experienced before. I have had a number of invasive surgical procedures for other health issues, but the pain surpassed them all.

After my wife insisted to the ambulance crew that this was not food poisoning and I was not making it up, I finally made it to the hospital where I was left in the most horrendous pain. The ambulance crew had told the hospital on handover that I was ‘making a meal of it’. Then, the bloods came back and suddenly I went from having no one in the cubicle, to being surrounded by doctors and nurses.

I was told I was very ill and had pancreatitis which was infected. Although I had heard of a pancreas, I never really knew what it did, it’s size or location within the body. I only remembered that pancreatic cancer was very hard to treat due to Patrick Swayze, but I thought ‘okay, give me something for the pain and infection and I’ll crawl out of here to get back home’. However, that wasn’t happening. After being transferred to a ward, I very quickly went downhill and a CT scan showed I had over 50% necrosis (the death of most/all of the cells in the pancreas).

I spent the next two to three weeks barely aware of my surroundings, hallucinating and had lost over three stone in weight.

After a month, I was released from hospital. But within a week, I was back in hospital as I was unable to eat, not even a spoonful of soup. I had developed a massive pseudocyst on the pancreas, which was so big it was causing the stomach to compress, which explained I was unable to eat or drink anything. I had a drain put through my stomach and into the cyst to drain the infected fluid. Within the first hour, four litres of fluid had been removed.

A few days later I was sent home, but within two hours of being discharged, I went back into hospital with sepsis and a dislodged drain, which had come out of the cyst. I spent another three weeks in hospital.

In total, I spent just over three months in hospital during my first attack.

I have been in since for pancreatitis but fortunately for no more than a week at a time. I now have chronic pancreatitis and type 3c diabetes, needing insulin.

What shocked me the most was the lack of knowledge people had about the pancreas and diabetes, especially people in the medical profession and the lack of support available. I would ask questions and no one could answer me, so I ended up researching for myself and found trusted information from reliable websites such as Guts UK.

I started to try and find social media groups for support but found they were all nearly dominated by sufferers overseas. I wanted a group that was for people using the services of the NHS, so we were all experiencing similar approaches to treatment. That’s when I set up Pancreatitis UK Facebook Support Group. The group has a large number of members now and is there to offer support and information to sufferers, family members and carers and hopefully allow others to see just how complex and important the pancreas is and that many things can cause pancreatitis. Mine was caused by medication, but it has a number of causes. This is also the reason I am sharing my story to try and raise awareness of pancreatitis and to show the amazing work that Guts UK do.

Guts UK is the only UK charity funding a research fellowship into pancreatitis.

We are dedicated to finding an effective treatment for this devastating 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.