Jake was 8 years old when he had his first pancreatitis attack. This is Jake's story, as told by his mum Laura.
As I write this, Jake is 10 years old. He absolutely loves go-karting and will go regularly, he even came first in one tournament. Jake also loves his PlayStation and Japanese anime.
In August 2019, Jake had come home from a weekend with his dad and started to complain of bad stomach pains. The pain seemed to be getting worse, and we ended up in A&E. After hours of waiting, it was decided he was probably badly constipated. We were sent home with medication, hoping it would improve. At home, the hours went by, the pain got worse and Jake started being sick.
We ended up back in A&E that same day. We were quickly put in a side room and blood tests were taken. I kept being told that they could see something wrong in Jake’s bloods, but couldn’t pinpoint what was causing it. Trying to think of anything that could be making him so poorly, I said the only big change recently was an increase in his epilepsy medication. After more phone calls to a specialist children’s hospital, we were told Jake was suffering from pancreatitis that had been caused by the increase of his epilepsy medication. This is an extremely rare side effect.
My sister, Jenny and I were sat in the side room at our local hospital, and I remember being so scared for hours. The staff wouldn’t say anything, but you could tell they were worried. Jake was admitted into the hospital for monitoring and neither of us had slept for almost 24 hours. We were exhausted. Hoping the pain medication would allow him to rest, we tried to settle. But Jake was then sick, and they called it ‘coffee ground sick’, which I now know is serious. The consultant was called, and we were quickly transferred by ambulance to a London hospital.
When we arrived, the consultant was waiting for us. I remember thinking consultants don’t wait unless the condition is serious, which scared me even more. Jake was quickly put on morphine pump, along with a drip and other medications.
Jake could finally sleep and wasn’t screaming in pain. We spent five days in hospital and when discharged, we were hopeful that this was a one off, due to Jake’s medication.
Less than six months later, Jake was in the same pain all over again. We quickly learnt that pancreatitis is something we must live with. Jake’s recent ultrasound showed there is damage to his pancreas and unfortunately, it is just a matter of time until his pancreas doesn’t function anymore.
Jake was eight when he got his first attack, and it has been life changing for him. He has had to learn to deal with the most horrific pain on a monthly basis. At times when it’s so bad, he will lay there and say, “why does it have to be me?” It breaks our hearts.
At the time of writing this, Jake is currently having another flare up. Each time, I hope that we can manage the pain at home and not end up in hospital.
It would be amazing for more medical professionals to understand pancreatitis. We have been seen by some amazing doctors, but we have also had some that have little knowledge of what to do when Jake is admitted to hospital. It’s frustrating that as a parent, you may have more knowledge than they do but they won’t listen. These instances result in Jake being in agonising pain for longer than is needed.
Jake hates this condition. He’s scared when he feels the pain starting and is now petrified of hospitals. He asks me “when will this go away?” I have to tell him that unfortunately, we don’t know if it will ever go away.
Being the parent of a child with chronic pancreatitis is scary. It is heart-breaking and isolating. But it also makes you the proudest parent you could ever imagine. The pain he faces is unimaginable, but he fights through it, every single time.
Jake’s family are dedicated to help Guts UK find a cure or treatment for pancreatitis. In their family shop, Chapman’s Stores, they have put out collection tubs and donated the 10p from bag sales to Guts UK too. Their kind and generous customers have helped Jake’s family raise nearly £2,000 for Guts UK."I share Jake's story with the hope that more awareness can be brought to pancreatitis. I hope in future there is an effective treatment or even better, a cure." - Laura, Jake's mum.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is the only UK charity funding a research fellowship into pancreatitis.
People are suffering, people are dying, all because of a lack of knowledge about our guts. Join our community and champion our cause by donating to our life-saving research today.