Stuart’s story
Stuart first thought he had flu and headed off to bed to rest. A few days later, he was sent to his local hospital with a swollen stomach and was finding it difficult to breathe.
Tell us about you
I’m Stuart, I’m 61 years old and I live on the Shetland Islands with my wife, Karen. I work at a college in Health and Social Care and Karen works in the charity sector. We have a daughter, Freya, who is 21 years old and studying French/Spanish so is often travelling with her degree.
In our free time we enjoy walking on the beach (usually wrapped up as it’s often windy and cold up here!) and we’re quite involved in our local community groups/events too.
Can you remember when you became unwell?
On Sunday 11th December Karen and I were walking back home from lunch with friends and I remember complaining of indigestion. It was snowing, so I thought I had the flu and once home, Karen gave me a hot water bottle and I tried to rest it off in bed.
On the Wednesday morning, I was in the bath and Karen said, “Your stomach looks really swollen”. Karen called the doctors and explained that I was breathing differently and I was a funny colour, so they booked me an appointment. The doctor said, “I think you have pneumonia”, so they sent me to our local hospital.
Our local hospital ran some tests and found that I had acute pancreatitis, and they kept an eye on me through Wednesday and into Thursday morning. The hospital were keeping in touch with Karen and at first, they didn’t think they’d need to transfer me to a specialist hospital in Scotland, but in the early hours of Thursday morning, they did. Karen hopped on a flight and got there before I was even transferred!
Karen tells me how hard it was for her to believe that I was as seriously ill as the medical team were telling her, because I was so ‘well’ and chatty on the Wednesday.
Can you remember much of your time in hospital?
I spent 33 days in intensive care, which I remember nothing of. When I woke, I thought I’d been asleep for a few days. I had some vivid nightmares about drowning or not being able to breathe that still feel real, but it must’ve been harder for Karen than it was for me. At one point Karen spoke with another woman whose husband was in intensive care. The woman was explaining that her husband had been in for nine months, with multiple-organ failure and so many complications. Karen asked, “What caused it all?” and the woman replied, “Pancreatitis”. It was scary, and we know it was hard on Freya visiting hospital too.
I was in hospital from 15th December to the 3rd February. We are fortunate to have such supportive friends and family, who stepped in to help and even helped Karen out with an apartment in the area.
Talk us through your road to recovery
When I woke in hospital, I couldn’t believe I’d been there so long. I’d lost 3.5 stone, and I was desperate to get home. I knew in order to get home I had to be able to walk again, wash myself and all the other day-to-day things we all take for granted.
I definitely pushed myself too much, as when I was back home, the occupational therapist was telling me to take it easy. I had a couple of other hiccups along the way that landed me back in hospital very briefly. It was the lack of energy that affected me the most, the realisation of how much energy the smallest of tasks take up.
How are you now?
As I tell this story, it has been eight months since I was discharged from hospital and I’m now feeling better than I ever have. We’ve just returned from visiting Freya in Spain. Guts UK has helped enormously along the way, from the consultant directing Karen to Guts UK’s information on pancreatitis, to us calling them when I returned home. They explained what happened in my body and the correct way to take prescription pancreatic enzymes.
I’m now swimming a few times a week and feel the best I’ve felt since I was 25 years old! I think I weigh the same as I did back them too! My energy levels are back and I’m maintaining my weight. I’ve also started eating healthier and don’t drink anymore.
What are your hopes for the future?
You read the news or watch the telly and there’s always something on there about the heart or about cancer, but the pancreas, and our guts, aren’t talked about. It affects so many more people than we imagine though, probably because people don’t like to talk about it.
As soon as we returned home, our friends Anette and John organised a huge fundraiser for Guts UK. They sold fish and chips and it was so busy it was taking people two hours to get their food! Our community of 900 people raised over £3,000, which was incredible. We were so happy to support a charity that had helped us, and that the people around us were so supportive.
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.
