Cornelius’ Story – Ascites and pancreatitis
"I went from being an active person, working and always on the go, to struggling to walk from one room to another. I couldn’t do anything, and my family had to do everything for me."
Tell us a little bit about yourself
“My name is Cornelius. I’m 50 and work as an installation electrician. I love sports, especially rugby, and I’m a proud Saracens season ticket holder. I live with my wife, Vicky, and we have four children together.”
Can you describe when your symptoms started and what they were?
“My symptoms began about seven years ago with abdominal pain that typically occurred overnight. I’d warn my wife, saying: “I’m going to have a bad night,” as it would get to a point where I would be in extreme pain for hours, only to disappear by morning. I thought it was just a stomach issue since the pain wasn’t severe. I never thought much of it. When I saw my GP, they simply told me to monitor it and return if it happened again.
Everything changed after a 26-mile charity walk for Macmillan on 22nd May 2022. The following Sunday morning, I was in pain after having breakfast. Normally, I’d wait for it to pass, but my friends who are nurses insisted I seek help.”
Are there any hospital experiences that you particularly remember?
“I went to the hospital, where multiple CT scans revealed that half of my pancreas was dead due to necrotising pancreatitis (a serious complication of acute pancreatitis that occurs when part of the pancreas dies due to a loss of blood supply to the pancreas).
I don’t drink, and doctors think that a gallstone may have blocked my bile ducts, leading to pancreatitis (8 in 10 cases of pancreatitis in adults are caused by either gallstones or excessive alcohol consumption). I had numerous ultrasounds searching for gallstones, but nothing was found. The doctors labelled it idiopathic, meaning they couldn’t determine the cause.”
“That night, doctors from the Intensive Treatment Unit (ITU) came to speak with me. It all happened so quickly. They mentioned they might need to take me down for closer observation. I tried to reassure Vicky, forgetting she was a paramedic and knew the seriousness of the situation.
I ended up in ITU for eight days. The consultants were shocked as they weren’t expecting to see someone in my situation awake and talking. I was hooked up to machines, and the hardest part was when they revealed that my chances of survival were about 50/50 due to the trauma caused by pancreatitis.”
They couldn’t even perform scans initially because the damage caused meant scans weren’t clear and made it too challenging to see clearly. Eventually, they discovered a large cyst on my pancreas filled with fluid, which was compressing the portal vein (a blood vessel that carries blood from organs in the abdomen to the liver).”
How were you after returning home?
“My abdomen was constantly filling with fluid inside (known as ascites), creating pressure. For 10 months, I felt like I wanted to be sick, but I couldn’t get it out. Even simple tasks, like walking to the kitchen and back, left me needing to sit down. I struggled to eat, which led to me losing five stone.”
“My life revolved around frequent hospital visits for scans. The first hospital stay lasted two and a half weeks, but by the weekend, I was back in for pain management with prescribed morphine. This cycle continued: I would be home for a week, only to return to the hospital. It was horrible.”
How did they treat the ascites?
“They drained the fluid three times in total. The first time, they removed three litres, the second time, ten litres and the final time, thirteen litres of fluid. At that point, it felt like we had accepted this was my life: filling up with fluid, getting the fluid drained, then starting again.
Doctors carried out scans to try and find where it might have come from. Finally, one consultant suggested: “It might be a pancreatic sac putting pressure on the portal vein. Let’s release that pressure.” I was lying there and said: “Just do anything to get rid of this.”
“They placed a stent between the pancreatic fluid sac and my stomach, allowing the fluid to drain. Unfortunately, I experienced internal bleeding from this procedure. I collapsed in the hospital and required blood transfusions. But luckily, after the stent placement, the fluid sac disappeared.”
How did this impact you emotionally?
“I went from being an active person, working and always on the go, to struggling to walk from one room to another. I couldn’t do anything, and my family had to do everything for me. But they reassured me.”
“It was particularly difficult because a week before my pancreatitis attack, we had just had a funeral for Vicky’s mum who’d recently died. Fortunately, the people I work for were very supportive. As an installation electrician, I usually work hands-on, but they kept me engaged with paperwork. This really helped us manage our home during such a tough time.”
How are you now?
“I returned to work just a couple of weeks after the operation. I started back at the gym but had muscle wastage and had lost weight, so I had to slowly build myself up, following medical advice. Now, I need to take Creon (a prescribed medication used to treat people who cannot digest food normally because their pancreas does not make enough enzymes) with each meal, but I’d take that any day of the week over the symptoms I experienced.”
What is one thing you wish people knew about pancreatitis?
“Pancreatitis changes your life hugely. It’s something that isn’t widely understood. People hear about strokes, heart attacks, and cancers, but pancreatitis often gets overlooked. When I went to the doctor, it was missed many times.
I could’ve died from pancreatitis. We nearly lost our house due to me not being able to work. It changed everything. When I tell people I had a “pancreas attack,” they don’t really understand. If more people understood the impact of pancreatitis, maybe others wouldn’t have to go through the same thing.”
Why are you sharing your story?
“I want to help others understand what pancreatitis can do. It’s not just about me – it’s about raising awareness. More awareness amongst healthcare professionals in the early stages would have been so helpful as the signs were missed.”
Why do you support Guts UK charity?
“I have such a personal connection with Guts UK. People asked me: “Why not support a bigger charity? You’d probably get more money or sponsorship.” But for me, it’s about raising awareness for something that’s affected my life directly.”
“That’s why I want to spread the word. Pancreatitis is serious and needs more attention. Guts UK is helping with that, and that’s why I’m doing what I can to support them.”
How can YOU help to create a brighter future for those like Cornelius?
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.
Our guts have been underfunded and misunderstood for too long. Together, we can change that. Donate to our life-saving research today. Thank you.
