Rob’s Story

I’m Rob, I’m 35 years old and I suffer from RAP (recurrent acute pancreatitis) that has been diagnosed as idiopathic (which means there’s no known cause).

I absolutely love my music, I also DJ in my spare time and I’m a massive movie buff.

My first attack:

I had my first attack of pancreatitis in 2015. I had a sudden excruciating abdominal pain, so I ended up going to A&E. I was told it was gastroenteritis and was sent home with anti-cramping medication.

My next attack was around a year later, but this was much worse than the first. I couldn’t move with the sharp stabbings pain, nausea and sickness. A CT scan confirmed that I had inflammation of the pancreas. This was the first time I heard the word ‘pancreatitis.’

Since being diagnosed, I have been admitted to hospital around once or twice each year. Each time is more serious than the last. I was eventually referred to a specialist in a different NHS trust in 2019, four years after being diagnosed. I managed to have 1 consultation with my specialist, with an ERCP planned for later that year. Sadly, COVID hit, and I didn’t manage to have this procedure. This was a major setback for me.

The big one:

Fast forward to August 2020 when I was at work, like any normal weekday. I suddenly felt very sick with the familiar stabbing pains in the centre of my abdomen. I knew the pain, but this time it was much, much worse.

Somehow, I managed to drive home. I walked through the front door and collapsed at the bottom of the stairs. My partner helped me upstairs and I thought this might be another flare. I took pain relief, had a hot shower and did the usual things. But nothing worked. My stomach felt like it was ripping apart. I was screaming with the pain, so we went to A&E. I was rushed straight through, as I couldn’t stand. I was on the floor with that much pain.

This time felt different. The pain was indescribable, there are no words. I was in tears and nothing was touching the pain.

I was placed on an assessment ward and my stomach was so swollen that I looked pregnant. A CT scan confirmed that I had necrotising pancreatitis (dying tissue) and two large pseudocysts.

I was in hospital for weeks. Consultants explained I would need to take pancreatic enzymes and work with a dietitian. I was discharged from hospital, after being told the fluid/cysts would absorb by themselves.

After being home for a couple of days, my weight began dropping rapidly. I could not eat or even keep fluids down. I was dripping sweat and constantly being sick. Just one week later I was readmitted to hospital, who immediately transferred me to a specialist trust by ambulance.

At the specialist trust, I saw my consultant straight away. I hadn’t seen him for a while, and he was very shocked at how critically ill I was. I really did look very unwell. Then things moved quite quickly; I was placed on a feeding tube and had some procedures to help drain the cysts and mass of fluid that had built up. I had procedures done to clear some of the dead pancreas tissue too.

Due to being so unwell, no doctors or nurses could insert a cannula into me or take bloods. I was sent for an alternative, straight forward procedure. This is where things went terribly wrong. I started throwing up huge amounts of blood and I panicked. I was told I was haemorrhaging. They needed to stop the bleed as soon as possible.

The next thing I knew, I woke up from an induced coma days later in Intensive Care. The scary part is I had no recollection of this. I had never been so frightened in my life.

Recovery:

After a stretch in Intensive Care, I was moved back onto a normal ward. I had to learn to walk again and I didn’t see anyone for over two months due to COVID restrictions. This was very difficult for me and I felt very alone. I actually thought I’d never see anyone again, including my son.

I was discharged home with a feeding tube. I weighed 12.7 stone when I was admitted and I was down to 9 stone. Five months later, the feeding tube came out – a huge milestone. Eating was still a struggle, but I managed small portions and began to gain weight, albeit very slowly.

There is hope.

I was able to return to work later this summer. I try to lead a normal life as much as I can, but I live in fear of my next attack, something I cannot bear to think about. I’m determined not to let pancreatitis spoil my life.

I’m due an ERCP and possible stent insertion into my pancreatic ducts, hopefully this year. To anyone reading this, please know there is hope. I do live a normal life, lifestyle changes have been made and touch wood, I haven’t had a major attack since August 2020. Fight on, never give up!

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

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

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.