Shannon Lee Baron
This story is part of the Guts UK Pancreatitis Awareness Campaign.
Shannon Lee Baron’s Story
My name is Shannon and I’m 11 years old. I had my first attack of acute pancreatitis when I was just 8 years old. I suddenly woke up in bed and thought I was going to die, I was terrified and in agony. I struggled to pull myself along the floor to wake my Mum in the next bedroom. I was quickly admitted into Wigan Infirmary with excruciating abdominal pain, vomiting bile and lethargic. I had numerous test and scans done throughout the full day but the Consultants could not find out what was wrong with me. I quickly deteriorated that day and so the Consultants decided to prepare me to go to Theatre to remove my appendix, as they suspected my appendix must have ruptured. Just before my operation came the news that the operation was not going ahead and they had made the decision to transfer me by Blue Light (emergency ambulance) to the Royal Manchester Children’s Hospital (RMCH) for Tertiary Care. I arrived at RMCH and was quickly seen by a Consultant Surgeon and lots of doctors. The Consultant had a theory and sent me for another ultrasound scan. His theory was correct as he suspected acute pancreatitis. My family and I had never heard of this in children before and at first were oblivious to the seriousness of the diagnosis until it was explained.
That day changed my life forever. I was ill for 9 days before I was allowed back home. I was told I will probably never have another attack of acute pancreatitis again, as it was extremely rare in children. Over the next few months I continued to feel ill and kept having bad abdominal and back pain. I had more ultrasound scans and an MRCP scan done and they showed that my common bile duct was dilated. Just four months after my first acute pancreatitis attack I was rushed back into hospital with idiopathic (of unknown cause) acute pancreatitis again. I was put on loads of medication, around 30 doses a day. Only six weeks after this attack I had another but this time my pain was off the scale. My pancreas was really swollen and I was told it was basically digesting itself. I had a severe infection and was put on lots of drips and antibiotics. The first week in hospital was tough as I was in agony, starving as I was nil by mouth, confined to my bed as the pain was too great for me to move around, and also disorientated from the pain medication (morphine) that I had been put on. I had blood test after blood test, and scans. Finally my pain started to get better by the 8th day .The doctors stopped nil by mouth and reintroduced foods. Within hours I was vomiting everywhere. I don’t remember much of that day after that but my Mum tells me that the food caused a major relapse as my pancreas got inflamed again as it couldn’t tolerate any foods. My pain became unbearable and I was given higher doses of morphine. I had now lost too much weight so the doctors made the decision to feed me by a tube that bypassed my large intestine and went into the small bowel to give my pancreas a rest. After a further two horrific weeks in hospital I was allowed home.
After more tests I was finally told the devastating news that I now had chronic pancreatitis, another life changing blow for me. I was put on more medications, one of them being Creon (replacement digestive enzymes) and I was referred to the chronic pain team. Over the next year I continued to have acute pancreatitis attacks. In January 2017 after another acute attack the team decided to do an oesophago-gastroscopy-duodenoscopy with biopsies and an ERCP. Results showed cholelithiasis (gallstones) and so I was referred for intra-operative cholangiography with a cholecystectomy (x-ray of the bile ducts and removal of the gallbladder). After my gallbladder removal the report showed I had had chronic cholecystitis (inflammation of the gallbladder) with cholesterolosis (‘strawberry gallbladder’ caused by cholesterol deposits in the gallbladder) and dilated common bile duct (CBD).
Unfortunately my hopes of no more pain have been shattered as I continue with daily pain and I am still on lots of medication. I am now slightly under weight and continue to slowly losing more weight. I’m also in constant fear now, every time I get pain I worry ‘Is this the big one, will I be back in hospital?’. I shy away a lot from going out with friends from school because I worry about my sudden onset of pain. Pancreatitis took away the carefree person I used to be and although this disease is very painful and generally exhausting, I think one of the most hurtful and hardest things to deal with is the people that judge me. People say things like ‘You look normal to me’, or ‘You’ve just been out playing, how can you suddenly have pain now?’. I’m just left feeling more alone because how do you explain something that’s so bad and unpredictable that unless you and your family have been through it you can’t understand.
We need so much more understanding of this illness and more importantly for me more understanding of childhood pancreatitis. I do have to struggle through life now but I am not gonna let this illness stop me. I do what I can to raise awareness of pancreatitis when I can, I’ve raised a lot of money for the hospital that helped me so much, as without them I really wouldn’t be alive today. It has been very upsetting for me to write and think about all this but with the help of Guts UK and all the people with pancreatitis including myself and families I hope we will raise awareness of childhood pancreatitis. I also hope we raise money for research into this terrible disease so that one day we may find a cure.
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.