Amanda could feel the discomfort moving further up her abdomen for days, and one day, the pain hit and she was rushed into hospital.
I’m Amanda, I’m 50 years old, happily married with a daughter and two rescue dogs that keep me busy! I work as a Project Manager for Focus Group and really enjoy my job. I’ve always been mostly healthy, the only thing I take medication for is sleep paralysis (inability to move during sleep). I love my food and I’m not much of a drinker.
When COVID was at its height back in 2020, my brother, Mark, was taken to hospital suddenly with a stroke. Mark spent four months in hospital where none of us could see him, and sadly passed away in January 2021. It was distressing for all of us, as we’re a close family.
In May 2021, I began experiencing abdominal discomfort. I’d put weight on, but my doctor reassured me that I’m in good nick as I’m active. One Monday morning, I woke with a heavy feeling lower down in my abdomen. I attended a walk-in centre, who checked my urine, but thought the pain was muscular. I was sent home.
With each coming day, the discomfort seemed to move higher up by abdomen. I became worried, but wasn’t unwell enough to go to A&E and couldn’t see my doctor for a week, so I powered through. I’ve always been good at powering through, and I’ve walked around with a broken hand for two weeks!
On the Saturday, I was off my food. Even when I had swine flu, I was still stuffing my face! I began throwing up a blue bile. Thankfully my daughter, Jodie, was home and called 999. Then, the pain hit. The pain was soul destroying. I still have post-traumatic stress disorder from it now. I couldn’t function. It took over everything I was and am.
At A&E I was told I had acute pancreatitis. I was given a bed and painkillers. The morphine didn’t touch my pain, which I thought was strange as I know how strong it is. Nurses told me they couldn’t give me anymore. Due to COVID, none of my family could see me.
The next five days are a blur. I remember vomiting up any water I’d drink, and the pain continued consuming me. On day five, I sobbed to a nurse, who asked the pain clinic to see me. As soon as they did, they discovered that my medications for my sleep paralysis were stopping the morphine from working, so I was switched onto another painkiller. The pain disappeared. It was such a relief. But looking back at those five days that I spent with no effective pain relief, I wish someone noticed this sooner. This left me with a mental scar.
My whole family were worried, as they couldn’t see me, but my mum had just lost her son and now her daughter was in hospital too.
At one point, I was close to having to go into intensive care. But from here, I improved. They kept me in hospital until they could remove my gallbladder as they suspected a gallstone had caused my pancreatitis.
My gallbladder was removed and I was discharged. I felt better, but also felt like I’d been ‘dropped’. There was no advice, no follow-up and I was still trying to come to terms with everything. I spent six weeks off work.
Then, in August, the pains began again. My doctor sent me straight back to hospital. But after my bloods were taken and my x-ray looked clear, I was sent home. In October, I ended up going back to the hospital for a CT scan, as I was still suffering with pain and diarrhoea, with orange/yellow stools. I was sent home once again.
Finally in June 2022, 10 months after I’d reached out for help again, a pancreatic specialist saw me and chronic pancreatitis was mentioned. Pancreatic exocrine insufficiency was mentioned too, as parts of my pancreas had necrotised (died) and I had a cyst on my pancreas. I was given prescription pancreatic enzymes to take with food. They said my CT scan didn’t look great, but my MRI wasn’t so bad. I’ve been left feeling confused, but thankfully, my local GP practice have been amazingly helpful.
I’m yet to see a dietitian to help me, and I’m still unsure whether I have chronic pancreatitis, pancreatic exocrine insufficiency or both. Hopefully I’ll have answers soon. I’m lucky to have an amazing husband, daughter, sister and family surrounding me. My work has been so understanding about everything.
I learnt a lot from Guts UK’s website and others in the community on social media. The hardest part for me has been coping emotionally, and coping with the loss of physical strength and fatigue too. But yesterday I managed to push the aerosol button on my deodorant with my left hand – a success!
My family will jokingly say, “Hey Amanda, has your pancreas fallen out yet?” Finding laughter during tough times is important. I wouldn’t have it any other way. I’m more empathetic with people now too, as living with an invisible condition myself is a reminder that you don’t know what people are going through.
None of us know where we are in the queue. If my brother’s sudden death and my pancreatitis taught me anything, it’s to live every day to the fullest and find joy.
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 for people like Amanda. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.