Emma experienced heartburn-like symptoms that soon increased in severity. She thought the worst. But she shares her story with hope for the future.
Tell us about you
“I’m Emma, I’m 49 years old and live in Aberdeen with my two cats, Coco and Tilly. I also have a son, Kiefer. Five years ago, I decided to do my adult nursing qualifications, when working as a community support worker. I qualified two years ago! I really enjoy my job and a big part of my identity is being a community nurse. In my spare time, I enjoy knitting, meeting up with friends, music and going to concerts.”
Can you remember when your symptoms began?
“Only eight months after qualifying, my journey with acute pancreatitis began. In July 2022, I started to experience an uncomfortable feeling in the middle of my chest that felt like heartburn. I tried to rest, but it didn’t help. Within four hours, the pain was so bad I phoned for an ambulance. I thought the worst as it was near my heart. I was also being sick and had a fever. I felt clammy all over and was struggling to breathe from the pain. I’ve never felt pain like it.
The ambulance arrived very quickly. There was a two hour wait to get into hospital, but I felt well looked after. I kept trying to sip water but then I’d be sick. It’s all a bit of a blur!“
When were you diagnosed with acute pancreatitis?
“The hospital carried out tests and within a couple of hours, I was diagnosed with acute pancreatitis. At this point, I didn’t realise it was so serious. I thought, “They’re just making a fuss over nothing.” Receiving a diagnosis came as a relief but I was also scared. The next day, I told work I wouldn’t be going in. I was sat in hospital with nothing barring the clothes I was wearing. I messaged a friend, and they brought me some clean clothes and helped me to tell family the news.”
Talk us through your time in hospital
“Early the following week, I had an ultrasound. This revealed gallstones blocking my bile duct, which had caused the pancreatitis. I had an endoscopic retrograde cholangiopancreatography (ERCP) to remove the stones. Hospital was a rollercoaster. I was constantly picking up infections and had lots of pseudocysts develop (collection of pancreatic fluid). I developed a pulmonary embolism in my chest. I had a chest drain fitted and was prescribed blood thinners. I had no appetite and was fitted with a feeding tube as well.”
What did you find most difficult about hospital?
“I just felt so alone. No matter what people said, I couldn’t see the light at the end of the tunnel. My consultant advised me to look at Guts UK’s website, but I just couldn’t do it. I had no interest in anything. I felt there was no end to it. My feeding tube kept coming out and after three and a half months in, I refused to have it. I thought “I just cannot go through this anymore. I’ve had enough.” I slowly forced myself to keep drinking the prescription build-up shakes and forced myself to eat. I was elated one Sunday morning to wake and be starving for toast! My appetite was finally coming back. In the end, it was my diabetes that held me up from being discharged.
Right from the beginning, I have been so happy with the care I’ve received. We are so lucky in this country to have the medical facilities we have and the staff that we do.”
Had you ever heard of pancreatitis before being diagnosed?
“I had heard of it, but I thought it was mainly caused by alcohol, so I judged myself for it. My family found it difficult as they didn’t know much about it either.”
How are you doing more recently?
“Physically, I’m getting there. I had physiotherapy which has helped. My hair fell out when I was ill so I decided to shave it all off on New Years Day. It was very therapeutic. Mentally, it has been tough. I felt a lot of anger and grieved my old life. Will I ever get to do the things I enjoyed again? Through the diabetes service I got referral to a psychologist which really helped. Diabetes is the main thing I deal with. I also take prescription pancreatic enzymes. However, I can now demonstrate a lot of empathy towards my patients. I wouldn’t wish pancreatitis on anyone, but it has made me a better nurse.”
What are your hopes for the future for those affected by pancreatitis?
“For more awareness. I didn’t really know what it was at first. I’m also interested in the future of pancreatitis research from Guts UK.”
Why are you sharing your story today?
“When I was unwell, I felt so hopeless. Just over a year later, life is pretty much how it was, barring my diabetes. I feel lucky and want people to know that you can get better. It was tough but I’m a stronger person for it. There’s nothing I feel I can’t do now, and it’s really put into perspective what’s important. I’m looking forward to the future.”
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.