Anonymous – Hereditary Pancreatitis

I was taken into hospital with a swollen stomach in December 1982. I had no pain at all! Two operations later at two different hospitals (one to remove an ovarian cyst thought to be the problem and the second to have a Frey’s procedure once it was found to be a burst pancreatic duct that was leaking fluid into my abdomen), I was discharged from hospital on enzyme supplements and regular checkups.

I had to re take the last school year (year 11), as I had missed most of the year by now. Still no pain other than from the operations. 7 years later I experienced the pain of pancreatitis after over-doing the party scene and spent time in hospital recovering.

I went on to have 3 children naively unaware of a genetic link (hereditary pancreatitis). My middle child became ill with pancreatitis aged 8 years and like myself had the Frey’s procedure after the duct of the pancreas burst and fluid drained into the chest collapsing one lung and starting to collapse the other lung. The operation went well and other than yearly checkups my child has kept well.

I had another attack after 1 wine and soda one evening 15 years ago and haven’t dared to have a drink of alcohol since. Do I miss it, yes, but the pain was so intense I never want to feel like that again. My oldest child started having symptoms at 22 years old. The weight loss and lethargic symptoms are hard to watch as a mother. Fingers crossed an operation is on the cards soon.

I have now been taking enzyme supplements for 37 years, slowly increasing them over the years.  I am diabetic now as well. I certainly don’t have bags of energy and need to plan days and nights out so my body can cope, but in general I live a normal life minus alcohol. The psychological side is hard knowing 2 of my 3 children have the genetic gene and this may alter decisions to have family themselves, or have IVF or take pot luck.  

WHAT YOU CAN DO:

Join our community, champion our cause and help us fight pancreatitis. Guts UK is the only UK charity funding a research fellowship into pancreatitis, and we can’t do this without your kind support. If you’re feeling inspired but don’t know how best you can help, read some fundraising ideas here or contact team Guts UK today – we’d be delighted to lend a hand.