Jordan’s Story

My name is Jordan, I’m 25 years old and I have chronic pancreatitis. I have a 3-year-old daughter called Frankie Rae and I recently got married to my amazing husband, Matt.

I first noticed symptoms that were unusual for me when I was pregnant with my daughter. I just put this down to severe acid reflux due to pregnancy, as apart from that, I had a straightforward pregnancy.

Along came my daughter and I was just starting to get to grips with being a mum and enjoying all those new born cuddles. I felt on top of the world and the luckiest mum ever to have such a beautiful baby girl.

All seemed well, until 15 days after I gave birth. One morning, I woke in the early hours with a pain in my upper abdomen and chest. I took some pain killers and tried to sleep it off. But I woke again with extreme pain this time, in the same place as before. My partner had just gone back to work after paternity leave so I called through to my mum (who we live with). I was in too much pain to even pick up my daughter.

From then, it got worse and worse. I had never experienced pain like it before, and I had just been in labour! I was rolling around in bed, screaming out as it was just unbearable. The pain was travelling into my back and becoming more intense, even though I thought that couldn’t be possible. I started being sick and I thought it might relieve the pain, but it didn’t.

Mum phoned the GP, who could hear me in the background and told us to ring 999 immediately. An ambulance came out, put my pain and sickness down to food poisoning and left.

I started losing consciousness. Mum called 999 again, and the ambulance came back out. My pulse was low, so I was given an injection of adrenaline and was taken to hospital. Once at hospital, bloods were taken and I was told I had pancreatitis. I’d never heard of this before, but knew that it wasn’t good by the look on my mum’s face as soon as the doctor told us.

I was transferred onto a ward where I was closely monitored and had more tests. A couple of days later, I was taken for an emergency CT scan as the doctor feared that my pancreatitis may be necrotising (dying). And half an hour after the scan, it was confirmed my pancreas was indeed dying and I had lost 95% of my pancreas.

They put the pancreatitis down to gallstones which were caused through pregnancy. They wanted to remove my gallbladder, but I was too unwell to operate on safely. Three weeks later, they were able to remove my gallbladder.

Once my gallbladder had been removed, I spent another week in hospital to recover and then I was able to leave. In the four weeks I spent in hospital, I was diagnosed with type 3c diabetes, as too much of my pancreas had been killed off, so my pancreas didn’t function properly. There really isn’t enough awareness around about type 3c. Many doctors and nurses I have seen over the years are very confused when I mention it. Including some specialist diabetes nurses. So much more awareness is needed in order to help treat the pancreatitis and diabetes appropriately.

Since the initial diagnosis I had many flare ups of acute pancreatitis but due to the damage from the first attack, it has now been diagnosed as chronic (life-long).

I have had many different hospital visits for A&E, consultant appointments and diabetes appointments over the past three years since this happened. The diabetes has affected my life massively. It’s a whole new life and world that I need to adjust to.

I have the most amazing, supportive family and have recently got married. I didn’t have much support from outside organisations until I found Guts UK. Their support and information has helped me come to terms with the new life I now live.

I struggle with daily pain, and my mental health has been affected more than I could have ever thought possible. But I get through, day by day.

I’m hoping in the future that there is more funding go into pancreatitis and the different causes to it. I’d also wish for pregnant women to be investigated more if they complain of abnormal pain throughout the pregnancies, as I do believe that it could have been picked up on sooner.

There is no effective treatment for pancreatitis. There is no cure.

Guts UK is the only UK charity funding a research fellowship into pancreatitis. We are dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition.

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.