Sue’s Story

When Sue first began feeling unwell, her GP suspected it was COVID. This is Sue's pancreatitis story.

My name is Sue, I live with my dog and two elderly cats. I’m a home-based freelance editor. Sometimes I write books, and I do a lot of baking.

In May 2020, I had to have the 111 doctor out after a sudden, painful episode of ‘bloating’ and vomiting. He suggested I had a wheat intolerance. So, following his advice, I avoided bread for a couple of weeks. At that time, I also started having pain in my back, which I put that down to my ancient mattress. My GP ordered blood tests and I was diagnosed with coeliac disease, which was no surprise, as my sister had been diagnosed with that a few years before.

In the week after that diagnosis, I felt awful. Apart from the back pain, I also had a nagging little pain under my left boob, felt tired all the time and had horrendous night sweats. I put that all down to my new diet.

By the weekend, my bowel movements were either not happening or when they did, they were all bitty. I would sit on the toilet afterward, riding out painful spasms up my back.

On the Monday morning, I got up and had a shower, which wiped me out so I went back to bed. When I woke up it was early afternoon and I felt so much worse. I just about made it down the stairs and phoned the surgery. I could barely make it back up the stairs. I was breathless and shaky, so I went back to bed.

A while later my GP called and asked me a few questions. Then he said he’d come to see me. I can’t remember much of our conversation when he arrived, as I was in a bit of a fog. My GP was concerned because I seemed delirious. He called for transport to take me to hospital. He thought that I had COVID, because when we got to A&E I was wheeled to the COVID area.

There’s not much I remember about that night. I remember apologising to the ambulance people because they’d have to disinfect the rig. I remember someone using some kind of ancient scanning thing that looked straight out of the 1980s. I remember being too weak to climb off the gurney onto the scan table.

My next memory was being wheeled into another ward and I remember being hooked up to tubes. I was moved to the gastro-intestinal ward the next day. I’d have very vivid dreams, like a military plane landing on the air ambulance helipad, and waking to see the ceiling tiles green with mould.

I was told that I had pancreatitis and my pancreas tissue had begun to die (necrotise). I had been on the verge of sepsis.

I was in hospital for a month and had become so weak that I couldn’t wash myself. I needed help to get on a commode (no way was I using a bed pan, thank you very much).

My first trip from the bed to the bathroom felt like scaling Everest. I was on IV antibiotics for the whole month and I lost thirty pounds. All I wanted was to go home. I’d have a crying jag at least once a week, when they’d tell me I still wasn’t well enough. It took a consultant telling me that I could’ve died that finally got the message across; it was serious.

It was such a relief when I was back home, but it took months for things to get back to ‘normal’. Getting up and down the stairs was scary. The first time I didn’t have to sit down to dry myself after a shower was a triumph. It took me ages to get my appetite back, and just as long to get the dose of pancreatic enzymes right. I had a flare-up in October which left me in pain for weeks, and really affected me mentally. It was only after my son came home from university in December that I started to feel better physically and mentally.

The pancreatitis was idiopathic (no known cause). I hadn’t drank much for years. I’ve now put on a lot of the weight I lost, though I’ll be on pancreatic enzymes and other medication for the rest of my life. Managing diet can be tricky, particularly with having coeliac disease too and not being able to eat gluten.

I was one of the lucky ones. I hate to think what would’ve happened if my GP hadn’t sent me to hospital.

I had to laugh a few months ago. I was binge-watching Grey’s Anatomy and one of the characters told the surgical students, “eat when you can, sleep when you can, and don’t mess with the pancreas.”

My husband passed away from oesophageal cancer six years ago, so I’m interested in Guts UK’s work in this area too. It seems they prioritise the areas that are the most neglected.

"The work that Guts UK is doing to raise awareness of pancreatitis is vital. It’s not an organ we often think about until it turns on us." - Sue

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

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