Em’s Pancreatitis Story
"The doctor said it's all in my head, so I just need to get used to coping with it." Em thought, but minutes later, she started vomiting and an ambulance was called.
Tell us a little about you
“I’m Emma, I’m 29 years old and live in Southampton with my husband, Adam, and our two guinea pigs and hamster. Before I began struggling with my health, I was an Intensive Care Nurse, but now I am disabled and sell crocheted plushies that I make. I love all things crafty, and I’ve even tried rug making and leatherwork.”
When did your symptoms begin?
“In April 2020, I caught COVID-19. I spent two weeks in hospital and then I was sent home. It became apparent quickly that I had long covid, but doctors wouldn’t believe me at first. I’d vomit after eating, was in so much pain, and my whole digestive system seemed to slow down. My GP would say, “It’s all in your head”. I spoke to my GP regularly, but felt horrible for wasting their time.
On the 28th October, I was watching a movie with Adam at home, and my normal pain suddenly turned severe. I kept doubting myself and thought, ‘the doctor said it’s all in my head, so I just need to get used to coping with it’. The minute I went to have an ice lolly, I started vomiting. I was even vomiting my own spit when I’d swallow it. Adam was completely lost, as I sat rocking on the edge of the bed, crying.
We called an ambulance who were in shock at how unwell I was. By this point, it felt like someone had all the organs in my chest in a vice and they were crushing them. When the paramedics eventually got me into the ambulance, I kept saying “I’m so sorry for wasting your time”, because of how my GP had been treating me. The paramedic said, “Listen, you are not wasting our time. You are very sick, and you need to understand that”.”
Talk us through your time in hospital
“When I arrived in hospital, the last thing I remember before going into intensive care was asking the nurses not to let me die. I was worrying that this time I wouldn’t make it. I was eventually diagnosed with acute pancreatitis, and much of my time in hospital was a blur. Due to COVID, Adam was barely allowed into hospital to see me, which made it even harder.
The medication made me very confused and delirious. I struggled to distinguish hallucinations from reality. I genuinely believed that Adam was eventually going to vanish into thin air with a ‘poof’ if I didn’t see him. So I’d beg and beg the nurses to see him. Eventually they said, “If we let you see Adam will you be more compliant?” They kept calling me “difficult” or “emotional”. I didn’t realise I was being ‘difficult’, because in my mind, I was trying to save Adam’s life! I really wish someone would’ve sat with me, held my hand and calmed me down, or asked me questions. That way, they’d have discovered that I wasn’t living in reality. One day, I hope to have the opportunity to use my experience to help nurses understand what it’s like having delirium in hospital.“
What was the cause of your pancreatitis?
“The hospital found sludge in my gallbladder which made them think gallstones caused the attack, but they did wonder if the long covid had something to do with it too. After three difficult weeks in hospital, I was finally sent home to be with Adam.”
How were you once home?
“The biggest struggle was knowing what to eat, and because I’m plus size, my doctor wasn’t really concerned about my lack of appetite and vomiting. No one had asked me about my bowels either. I’d grown so used to having loose, yellow stools that I thought that was normal. It took showing Adam a photo of my poo to know that it wasn’t normal, it was just my new normal. When I’d told my doctor I was worried about malabsorption, they said, “Malabsorption will help you lose weight!” I asked if that would make me unwell, and they said, “We can cross that bridge when we get to it”.
Persistence led to me being misdiagnosed with type 2 diabetes. When I finally went to see a proper diabetes nurse, she correctly told me I had type 3c diabetes.”
How are you more recently?
“Now, I take prescription pancreatic enzymes when I eat, and I need insulin too. I have been diagnosed with chronic pancreatitis, and finally almost three years on, I feel more comfortable with my diet.
Adam is brilliant. He reminds me that it isn’t all in my head, and advocates for me. He reassures me, and makes sure I don’t fall asleep before taking my medication. I would struggle without him. It’s one thing when doctors don’t believe you, but if someone you loved didn’t believe you, it must hit so much harder.
My mother-in-law found Guts UK when I was feeling very down and alone after leaving hospital. I thought I was the only one, so finding other pancreatitis stories of people just like me made me feel better. I follow Guts UK’s social media and read all the stories, which is why I decided to share my story today. Maybe my story can help somebody.”
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.
