John's story, as told by his family as part of Guts UK's Kranky Panky Pancreatitis Awareness Campaign.
On November 23rd 2019, out of the blue our dad John suddenly became very unwell with stomach pains. At the time, we thought he had some sort of bug, but we admitted him to hospital that evening. After just one night, our dad was moved into intensive care. 24 hours later, he was on a life support machine.
John had gone from doing his usual daily antics, helping family members to being sedated, intubated and on all sorts of medication. 36 hours earlier, he had just dropped his grandson in town.
We were all devastated and confused too. It took a few days for the word ‘pancreatitis’ to be mentioned. Some frantic googling (we found Guts UK’s website) and questioning of nurses ensued before we had a better understanding of what our dad was facing, severe acute pancreatitis. Pancreatitis is a disease we had never heard of and consultants said the cause of his was ‘idiopathic’ (unknown).
Pancreatitis is catastrophic. It caused a huge inflammatory response throughout his body and multiple organ failure; kidney failure, low blood pressure, respiratory failure, sepsis, blood clots, lung damage, infections and more.
Dad’s condition improved and worsened on an hour by hour basis. Sunday always seemed to be our worst day. We spoke with him every day, as his sedation levels changed and his awareness grew. On his good days, we would tell him it was a Monday just to skip the Sunday that (by coincidence), always seemed to be his worst day.
We would cling to any sign of hope, while riding this horrendous rollercoaster.
After over 6 weeks of fighting, he sadly passed away on January 7, 2020.
Dad was on life support and in intensive care for almost 7 weeks. During that time, he never returned to anything like the man he was when he entered hospital. We had listened to the stories of past patients who had improved, we had hoped dad would be one of the lucky ones.
This photo was taken 7 days before he was admitted into hospital. Dad was fit, well and just 61 years old. Doctors said the reason he could fight pancreatitis for so long was because he was strong and healthy.
There is no medical cure for pancreatitis. There is no magical drug you can take to stop pancreatitis.
There is only supportive treatment, painfully waiting for the organ to ‘calm down’, if it ever does. Unfortunately in dad’s case, it was even harder to treat – with the cause being unknown. Complications caused by pancreatitis led to an open wound in dad’s stomach, after an operation attempting to improve his condition.
We must understand pancreatitis more. What causes idiopathic cases? Why do some suffer so much more than others? Can a cure be found, so others don’t have to experience the trauma that our dad and family endured?
This whole experience has been traumatising for our whole family. A cure must be found for this horrendous disease, so less families feel the heartache like we do now. We dearly miss our dad John, and in his honour, we have raised over £800 for Guts UK’s research, hoping to find a cure for this horrible disease.
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.When you donate to Guts UK, you fund research striving towards finding a cure for pancreatitis. Donate to Guts UK today.