Tom didn't sleep for seven days in hospital. He was discharged with a bottle of painkillers and no information.
Tell us a little about you
“I’m Tom, I’m 52 years old and live in Manchester with my wife, Helen. I’m a big Manchester United fan, and for most of my life I worked in mechanical engineering sales which I enjoyed. My mother was a linguist and my father a scientist, so I like to think I have mixture of their minds!”
Can you describe the symptoms you first started experiencing?
“My first pancreatitis attack was over ten years ago in September 2013. It was a Sunday night and I woke with excruciating pain, like nothing I’d ever felt before. I knew it was serious, so I got the first morning bus to hospital.
I lived bang in the middle of two hospitals. That morning I turned right towards one hospital. Little did I know, the hospital on the left was a specialist centre for pancreatitis.
At hospital the diagnosis of acute pancreatitis was quick. The pain kept getting worse, and I didn’t sleep for the seven days they kept me in hospital. I was discharged with just a bottle of painkillers and no information. I felt lost and traumatised. My doctor signed me off work for four weeks but I worked from home. I didn’t realise how poorly I was. My energy was drained and I’d lost a lot of weight. It was ten weeks until I was able to make it back to work and a full eight months until I was myself again.”
Talk us through your second attack
“In June 2014, I’d just recovered from the first attack when pancreatitis landed me in hospital again for another week. By now I’d done my own research and organised to see a private consultant, so I knew more. I was sensible, and took 12 weeks off work. My employer wasn’t happy. They questioned why I couldn’t work from home, and all I had to show them was the NHS website on acute pancreatitis.”
Did you ever find out the cause of your pancreatitis?
“After my second attack, I was being seen by my local specialist centre who thought I had recurrent acute pancreatitis. That was, until I continued having the attacks, with 2016 being a particularly relentless and tough year. I’d lie awake unable to sleep from the pain, on page 700-odd of Google researching pancreatitis! Eventually they discovered my pancreatitis was genetic, as I carried one of the cystic fibrosis CFTR gene mutations. I was diagnosed with chronic pancreatitis too. “
How do you find living with chronic pancreatitis?
“I’ve lost my job due to the time I’ve had to take off work with chronic pancreatitis. Things that were once straightforward, like eating or visiting people’s houses, aren’t anymore. Even if I’m well enough to go, I’m uncomfortable at the thought of having to use their toilet or having to leave as soon as I’ve got there.
I feel lucky to live closer to a specialist centre, and to have found a pancreatitis community online on Facebook groups. I found a specialist pain team in 2018 and asked for a referral. I saw them for the first time in 2019 and have found this very helpful. Their expertise is invaluable to the other doctors involved in my care.”
“You don’t realise it, but when you live with chronic pancreatitis, your mood can change very slightly day by day. Fast forward a few years, and you can be a completely different person. You’re glummer than you once were. Family and friends struggle to ‘get it’. If people invite you out 25 times, and you don’t go once, the invites eventually stop. If every time people call, you say, “I’m feeling horrible, thanks”, eventually the calls stop.
People have a hard time comprehending something like chronic pancreatitis, because it’s incurable. It’s easier to understand an illness that comes with a beginning, some treatment, and an end. In my first pancreatitis hospital visit, I was surrounded by cards of sympathy. But now, no one even blinks when I’m in hospital again, even though it’s just as serious as the first time. Chronic pancreatitis is cruel and relentless. As bad as things are now, I know in my heart I’d be in a much worse and very lonely position without the help I get from the various Facebook groups I’m a member of. Being able to talk to others is vital for me, and we swap information on everything from treatments to relationships.
I’m so grateful for my wife, Helen. She works a demanding job and then helps to care for me when she’s home. She took the time to learn about my condition. The ones around us, who support us, like my Helen, are so appreciated.”
How are you now?
“For seven years I’ve experienced extreme daily pain. Despite chronic pancreatitis affecting more men than women, the Facebook pancreatitis groups are more dominated by women. I hope telling my experience encourages more men to come forward.
Sharing my story today is out of my comfort zone. I find myself shying away from talking about this subject area, but that’s exactly the reason I need to talk. The support from reading other stories, Guts UK, and the Facebook groups is so important. Please don’t suffer alone, it’s too easy to do that. There are resources out there, you just have to say, “I need help”. “
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.