Ella’s Story
Ella quickly became unwell after her medical procedure caused pancreatitis. She shares her story today to help raise awareness and find purpose:
“My name is Ella, I’m 20 years old from the Midlands. I’m currently studying a joint honours degree of criminology and psychology, which I find absolutely fascinating. In my free time, I enjoy doing charity work, raising awareness of digestive conditions on social media and reading. I also have lots of rescue animals that keep me busy! I live with my mum and my two younger brothers.
I have a number of conditions that affect my digestive system, like gastroparesis, Bile Acid Malabsorption, Ehlers-Danlos syndrome and Sphincter of Oddi Dysfunction.
In January 2022, I went into hospital for an Endoscopic Retrograde Cholangiopancreatography (ERCP) procedure, which was part of treating my Sphincter of Oddi Dysfunction. The Sphincter of Oddi is a muscle leading to the small bowel. Mine doesn’t work properly, so it leads to a backup of digestive juices that can cause severe pain in the abdomen.
As soon as this procedure had finished, I began experiencing horrific back and abdominal pain and started vomiting. I quickly became very unwell. My temperature shot up, my stomach was swollen and my heart was beating so fast. I was so tired. A blood test confirmed that I had pancreatitis, caused by the ERCP. I had heard of pancreatitis as it had been explained to me as a complication of the ERCP, but of course I never thought it would happen to me.
Before this, my mum had just left the hospital too so was panicking when I wasn’t getting back to her because I was so unwell. She was running around the hospital trying to find me. I was unresponsive for days, and the pancreatitis had caused a number of complications for my other organs, like inflammation of the liver. I was malnourished and dehydrated. I had a morphine pump in attempt to make the pain manageable, and a feeding tube.
Scans found that I had severe necrotising acute pancreatitis. The tissue within my pancreas was dying, and I had a large pseudocyst full of infection that needed draining. The hospital team tried supportive treatment they could, but eventually they had to operate.
I had an open necrosectomy, where they cut into my abdomen to drain the necrosis (dead tissue). Recovering from this operation was horrendous, I felt like I was watching my life from the third person. It’s hard to describe. I was in immense pain and on so many strong painkillers. My veins had collapsed, so I had two central lines (cannulas inserted into larger veins). I was so tired and completely drained in every way.
Two weeks later, I was grateful to be discharged home. I’d been in hospital for over two months straight. I know how tough this was for my mum, she has said it was the worst time of her life. On the days I was conscious, every time I had to say goodbye to mum, we both felt like it might be the last time. It was such an emotional time.
I still have pancreatic symptoms and complications, but I’m grateful for the staff whose care I am under. The staff in critical care and intensive care were brilliant. I couldn’t fault them, but on normal surgical wards I didn’t have the same experiences. I felt as though staff in these instances could be quite dismissive and I felt like a burden.
I’ve helped Guts UK in the past with raising awareness for digestive conditions, even before I experienced pancreatitis. The Priority Setting Partnership into pancreatitis (working out the top 10 research priorities for pancreatitis in the UK) brings me such hope for the future. There is also such comfort in knowing you’re not alone and connecting up with others who understand.
My mental health suffered in hospital. I missed life. I missed my friends and family. I could only see mum one hour each day due to COVID. Even now, things that remind me of hospital or pancreatitis are fresh and sensitive. But I’m working on it, and helping raise awareness, like sharing my story today, help me to find purpose. I look back now, and I’m grateful to be here.”
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.
