Eliza shared her story as part of Guts UK's Kranky Panky Pancreatitis Awareness Campaign.
Hi – I’m Eliza and I’m 25 years old. This is my pancreatitis story.
In 2015, I started to experience pain in my stomach, nausea and needing to use the toilet after eating anything. My GP thought it was ‘all in my head’. He eventually sent me to be tested for Crohn’s disease and coeliac disease, but tests came back negative. I was back to square one.
Still struggling with these symptoms, I eventually saw my nurse, who pushed for me to see a gastroenterologist. Finally after years of waiting, I had numerous tests: MRI’s, bile duct scans, blood tests, a colonoscopy and endoscopy. I thought these tests should lead to an answer. Unfortunately, the tests came back negative, yet again. I was back to the beginning. It was exhausting.
Fast forward to more pain, extreme fatigue and nausea, I was asked to give a faecal sample. In 2018 (3 years after my first GP visit), the test said that I had PEI (pancreatic exocrine insufficiency). I was so pleased that my voice was heard, it had taken so long. I was told that my pancreas wasn’t working properly. I was given a pain killer to ease the pain that I had been in for the past 3 years, but this did not help. I was put on pancreatic enzymes (Creon) and omeprazole straight away, given a dietitian and referred for cystic fibrosis testing.
In 2019, I had a chest infection. But I’d had it for 6 months, and after numerous failed attempts of antibiotics, steroids and an urgent A&E visit, I was sent to a cystic fibrosis (CF) unit. The CF dietitian upped my enzyme dose to 15-20 tablets per day with meals. There, I was finally told I also had pancreatitis.
At the time, I only weighed 56kg but 2 years on, I finally weigh a healthy 64kg, all thanks to a correct diagnosis. I am now in a lot less pain and can eat without needing to be near a toilet. I found it embarrassing having to ask to be seated near them all this time.
Of course it’s an absolute pain having to remember to take up to 8 pills per meal (and fewer with a drink) but getting this diagnosis has not only helped me physically, but also mentally.
I can enjoy going for meals, going on long days out and having a snack without worring about finding a toilet as soon as the food touches my mouth. I can finally comfortably wear jeans and trousers, rather than tights and most of all not dose up on diarrhoea relief tablets before going out with friends.
The pancreatitis attacks come and go. The last major attack I had was around a year ago. I was about to go to bed when I felt a sudden, sharp and excruciating pain in my stomach and back. I was sweating profusely. Moving (even slightly) breathing and speaking left me in unexplainable pain. I was in this pain for roughly 10 hours over-night and no one in my household even knew. I had no way of telling them. I almost felt paralysed from the pain. Luckily, I’ve not had an attack as bad since.
I suffer with daily symptoms of pancreatitis and PEI. I used to have a full-time job, but due to joint pain, extreme fatigue, nausea, bloating and stomach pain, I can no longer do this. My employer has been amazingly understanding and I now work part time.
The cause of my pancreatitis is still unknown. Pancreatitis will affect me for the rest of my life. Hospital appointments will never end.
I found out about Guts UK (Kranky Panky), whilst trying to find out what exactly pancreatitis is, as even my consultants did not know much about it. The work they do and the research they fund to raise awareness not only for pancreatitis, but also other digestive diseases is amazing.
Guts UK is the only UK charity funding a research fellowship into pancreatitis.
We are dedicated to finding an effective treatment for this devastating 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.Be part of life-saving research by donating to Guts UK today.