Steph was diagnosed with acute pancreatitis in April 2022. When she started with the same pains again in the July, she worried it was all happening again.
“I’m Steph, I’m 30 years old, married to Alex and we have a daughter together, Ellie. I love listening to music and watching a murder mystery!
In April 2022 I ended up in A&E with pain in my chest and back. I could hardly breathe the pain was so bad. Alex called for an ambulance at 8am but I wasn’t seen until 6.30pm. I had a blood test which revealed I had acute pancreatitis. I’d never heard of this before. I was then admitted to hospital. My consultant suspected I may have gallstones. After an MRI it revealed he was right. My consultant decided I would need my gallbladder removed. As I was being put to sleep for my surgery, I aspirated. It ended up going into my lungs and I was moved to Intensive Care. Because of this they were no longer able to operate on me. After spending two days in the ICU, I was later transferred to a ward. I spent around a month in hospital. When I was discharged, I was relieved to be back home. For a while at home, I had no issues and continued my life as normal.
In July I started with the same pains again. I was also being sick constantly. At first, I thought it was just a sickness bug, but when the pain started, I thought ‘oh god here we go again.’ I went back to the hospital and was sent for a CT scan. They found I had a collection of fluid on my left side that was infected. This had come from my pancreas. This fluid all had to be drained. This was an uncomfortable experience, but it had to be done.
A week later I was being sick again. This time I was bringing up blood. I then started bleeding when I went to the toilet. I told the nurses on the ward. After this I don’t remember much else. I know I ended back in ICU and was extremely ill. I was put in an induced coma as I was struggling to breathe.
When I came round, I had no idea what had just happened. One day a nurse was changing my dressings, that I had no idea about and when I looked down, I saw a huge opening in my stomach. This scared the daylights out of me. My sister-in-law, Kim, during a visit asked me if I wanted to know what had happened. She told me that my body was full of fluid, and I had completely ballooned. I’d started throwing up blood to the point it was coming out of my nose. I had several surgeries whilst there. They had operated on my groin and capped the arteries they thought were causing my bleeding. I’d also had part of my small bowel removed due to the capping of the artery. This operation left me with a stoma. As well a part of my pancreas had died where it had become infected. My family were told it would take a few days to see if this was successful. I was touch and go at this point. Shocked doesn’t even cover how I felt when Kim told me this. All this from gallstones?
My recovery was hard. I’d had a tracheostomy placed, meaning I couldn’t talk. This became frustrating as no one could understand me. Nurses gave me a speaking valve and I was able to speak again. My voice was shaky at first but after a few days, it soon got stronger. The doctors later tried me without the tracheostomy to see how long I could breathe on my own. I lasted over two days so it was decided I could have it removed. This was a huge moment for me.
I had also started with physio. When you’re bed bound for so long you lose all your muscles. I found it challenging to even stand. But I was soon gaining my strength with the physio team’s support. I learnt to walk with a walking frame. I surprised my parents one evening when they came to visit by walking and greeting them. They felt so proud as did I.
My consultants started talking about my discharge date. After learning to walk and talk again, as well as learning how to change and clean my stoma I knew the time was coming. I was ready for home, but it was a strange thing. After spending three and a half months in hospital, I was nervous. However, after a few days with Alex and Ellie I was glad to be back. I still have my moments where I feel panicky and frustrated, but I have more good days then bad.
I’m so grateful for the care I received at my hospital. I’m also so grateful to my family for their love and support throughout. Pancreatitis is scary. But people shouldn’t be scared, there is help and support. If you need to talk to someone there are so many groups online and Guts UK too.”
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.