This story is part of the Guts UK Pancreatitis Awareness Campaign.
Kirsty Burnett’s Story
I developed pancreatitis during pregnancy with my second child, who is turning 10 this November. So that means this November will be my 10 year anniversary as a chronic pancreatitis sufferer. Whilst not an anniversary to celebrate I have come a long way during those ten years. While I was pregnant I developed gallstones. The pains were put down as pregnancy related so the gallstones were never spotted. As a result of this they passed through the wall of my gallbladder and blocked my bile duct causing a back infection and an acute pancreatitis attack. This wasn’t discovered till my son was 8 weeks, when I had deteriorated so much I collapsed and was rushed into hospital. Whilst they correctly diagnosed the gallstones and admitted me for surgery the pancreatitis wasn’t noticed till I had my gallbladder surgery nearly a week later, by which time I was seriously ill and woke up in intensive care.
The surgeon had been shocked at what he had found and amazed I was alive. More training and awareness could have prevented how ill I had become. My body had thankfully created a large pseudo-cyst around my pancreas containing the infection. It was 15cm in diameter. I was unable to eat or drink anything and was admitted to hospital for 8 weeks before they were able to try and drain the cyst. By this time the pancreas had become so damaged I was diagnosed with chronic pancreatitis. My baby had to live with my parents till he was 6 months old as I was in and out of hospital unable to look after him.
I was in and out of hospital over the next few years having several procedures to drain the cyst, which kept filling up and causing extra pain on top of the pancreatitis. Eventually 3 years ago my Consultant made the decision to remove the tail of my pancreas along with the cyst. Nothing could have prepared me for how hard the recovery would be and I had every possible complication I had been warned about.
After I had recovered I felt great for about 2 years. My pain settled a lot and as long as I took Creon when I ate my digestion was pretty good too. Then last year things began to build up again. I lost 4 stone in 5 months. I developed a fear of eating anything at all due to the pain I knew would follow. Nobody seemed to know how to help me. Nobody understood why I was struggling to eat. People would come to visit me and bring cakes and sweets.
Eventually between pain specialists and dietitians I began to get things under control. I am now back at a steady weight but still live with daily pain. We are still trying different medicine concoctions and ways of managing. But through this all I have brought up two children on my own and held onto a full time job as a Teaching Assistant. At my work they are very supportive but I still don’t think they fully understand the condition. There are good days and bad days and a lot of feeling exhausted.
What can you do?
Fancy fundraising for Guts UK? Have a coffee morning or dinner party with our pancreatitis quiz for the Kranky Panky Weekend. Or maybe you take our quiz and ‘Pin the Pancreas on the Person’ game into work with a collection tin? Your donations will make our research into pancreatitis happen. Thank you.