David and his family share David's pancreatitis journey so far and how they were determined to turn their pain into power and something positive.
Tell us a little bit about you
“I’m Dave, I’m 47 years old from Thirsk and live with my wife Cath, daughter Isla (13), and son Toby (10). Cath and I have been married for 15, and Isla and Toby are really close.
In my free time I like to watch (not participate in!) sport like football and horseracing. I’m quite a keen cook too, and enjoy cooking a Sunday roast for the family.”
Can you remember the day your symptoms began?
“Like it was yesterday. On Wednesday 3rd August, I was picking Isla and Toby up from their grandparents. My stomach began to feel sore. I was aware it was swelling too, so much so I could see it under my shirt.
The next day, I hadn’t eaten because something about eating felt wrong. But I knew I should eat, so Isla made me a cheese sandwich. After one bite, the pain became intense quickly. It felt like terrible trapped wind. We called an ambulance, and a paramedic thought it might be bad trapped wind too. As she left, she told us to go to our nearest hospital for pain relief if it worsens. We did just that, with the kids in the back of the car. I felt near to passing out with the pain.”
What happened when you went to hospital?
“The hospital the paramedic told us to go to doesn’t have an A&E, so when we got there, they told us that they think I need to be looked at properly by a hospital with an A&E department. We set off driving. This must’ve been hard for my family, as I was screaming in pain at this point.
When we arrived, I was admitted into hospital and spent the weekend on the ward. I became much worse on Sunday, and they took me into intensive care. They found a gallstone had dislodged into my bile duct, causing acute pancreatitis. I had also developed pseudocysts (collections of pancreatic fluid).
Cath at this point knew the children should come and see me, so she took a photo of me in intensive care and took it home to show Isla and Toby. She explained how each machine, wire and drain was helping me before they visited. My consultant was glad to see them, explaining that if they’re left to their own imagination, the images in children’s minds are often more frightening than reality.
I spent two and a half weeks in hospital, and finally was discharged home as I could eat at this point. The hope was that my body would naturally drain the pseudocysts.”
During those few months, Cath, where did you find your information?
“The first thing you do is try and get answers. The NHS information was limited, and seemed as though most people would be fine, but Dave wasn’t. Guts UK’s website helped me figure out what was happening to Dave, with such in-depth, friendly and accessible information.”
Talk us through the next few months, Dave.
“Unfortunately from September 2022 to April 2023, we were waiting on the right time for my pseudocysts to be drained by the specialist hospital. I’d often spend days waiting, in agony. Two drains had to be cancelled because they weren’t confident with the size or position of the fluid build-up. This was a battle. It was like being lost in the woods, walking around in circles and thinking ‘I’ve seen this tree before’. It was so frustrating but there’s nothing anyone could do.
Finally in April I had the pseudocyst drained and the relief was instant. It was brilliant. I was kept in overnight and then was free to go home.
Sadly, the following day, I collapsed at home with an internal bleed. It turned out this hadn’t been caused by the procedure itself, but the fact the cyst had been pressing on a vessel. This was a hard experience as I was throwing up blood and they struggled for a number of days to find the bleed. But eventually, they did, and by early May I was back home with my three favourite people.”
How have you been more recently?
“We were waiting since May for me to have my gallbladder removed, and by the end of August 2023, I was finally well enough. After that, I’d felt really good for a number of weeks, almost back to normal. More recently, a milder pain has started back up again so the consultant is wondering if the pancreatitis could be chronic now, but investigations are under way.
In the Summer holidays of this year, Toby and Isla decided that because this year had been so difficult for our family, they wanted to turn it around into something positive.”
Toby, tell us about Miles of Smiles
“This Summer, Isla and I each walked 100 miles during the six-week holiday for Guts UK. We wanted to do something positive, happy and fun, and didn’t want it to feel like a ‘job’ or a chore. We set a target of £200 and ended up raising £1,000! We were shocked and it felt amazing. I was even given a certificate from Guts UK in my school assembly. It really helped us take our mind off everything that had happened, turning it into something positive, knowing we’re helping fund future research”.
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.