Emma thought her stomach ulcer was causing her symptoms, until she crashed in the supermarket carpark and an ambulance was called.
I’m Emma, I’m 38 years old from Manchester. Even when I lived in Oxford, I’d always go home on the weekends from my recruitment job to be with family as we’re so close. I love baking in my spare time, whether I’m any good at it though is another story!
Up until 2009, I was healthy. There were no warning signs leading up to my first attack of acute pancreatitis. My boss found me on the bathroom floor on all fours. She tried to take me home, but I refused and put my pains down to a stomach ulcer I’d had.
I drove home, but ended up crashing in the supermarket and an ambulance was called. I had pancreatitis. I remember nothing about the next two weeks that I spent in high dependency. I’d developed many complications, including sepsis. My mum, dad and brother were told I wouldn’t make it. But I did, and I remained well for six more years.
In December 2014, we lost my dad. It had been a really tough period for my family as we’re all so incredibly close. My mum and I moved in together. We needed each other.
My pancreatitis problems started back up again in March 2015, just a few months after we lost dad. I went to A&E many times, and my bloods only seemed as though I was experiencing mild pancreatitis attacks that could be managed at home. On my third visit, I was told I didn’t need an A&E doctor, I needed a psychologist. But the fourth time, I was blue-lighted all the way to A&E, with acute pancreatitis, sepsis and gallstones. A gallstone had blocked my bile duct.
It took three weeks to clear the sepsis, to a point where I was well enough to remove my gallbladder. I remember vomiting blood too, from a slow bleed in my stomach. I think I overlooked my symptoms and didn’t push as hard as I could’ve, as it was hard to know what was grief and what was my pancreas. My gallbladder was removed, and I could go back home.
The next two years were tough. The familiar pains and steatorrhea (excess fat in the poo) continued. The hospital weren’t hearing me, and didn’t do any scans to investigate my symptoms further. I didn’t feel I was being listened to. In hospital, I’m often asked how much I drink. When I respond with, “Nothing, I’m teetotal”, I’m often asked the same question again. To this I reply, “My answer hasn’t changed since the last time you asked”.
Eventually, we decided to go privately to see a specialist. The first thing he said was, “There’s no such thing as a stupid question, and don’t feel ashamed or embarrassed of anything”. I was transferred to his NHS list and admitted to hospital two days later on the 3rd March 2017. At this point, I weighed little over 5 stone.
The 10th March was my birthday and the nurses bought me a cake and a present. I came out of the bathroom and told a nurse, “I feel a bit funny”. I woke up three weeks later in high dependency. I’d caught hospital acquired pneumonia and had to be put in an induced coma. They had tried waking me twice, but I was so underweight and malnourished, with no immune system, that my body was fighting a losing battle every time.
When I did finally wake, I couldn’t speak and I’d use an alphabet on a piece of paper. The first thing I said to mum was, “I’m sorry”. She’d been there for the whole four weeks, never leaving my side. As hard as this time was for me, it must’ve been harder for my family, as they were awake through all of it.
I now have chronic pancreatitis. My pancreas is failing me, and treatment isn’t working. The team in charge of my care now, I trust. As it’s impossible for my veins to take cannulas, a care plan is being put in place for me. If I’m admitted to hospital again, I’ll be put straight on a central line (a cannula inserted into a larger vein).
Illness changes your relationships. Illness stops you going out. Though I have lost many friends, I have also found some of the most wonderful friends through hospitals and pancreatitis.
With each pancreatitis diagnosis, it’s like the doctor has sat me down with a bomb, pulled the pin out and then they walk away scot-free. I’ve been left to pick up the pieces. I feel at this moment, it’s so important that people are told about charities like Guts UK. It’s a life-line for people, to know that they’re not alone.
Pancreatitis is a heavy illness to carry. It weighs on you. To know Guts UK are there, and can take a bit of that weight, is such a huge help. I also have a wonderful niece, Rosie, who has just turned three. She gave me a new lease of life – she’s such a character! She won’t let me feel sorry for myself.
My current personal challenge is convincing my mum that we should get a dog! I keep telling her, “On Christmas day, don’t forget to poke some holes in the box so the dog can breathe”. Perhaps next Kranky Panky I’ll be reading the stories with a dog sat on my lap!
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.