Sarah’s Story

 If you want to know a little bit about me, I love music. At weekends I enjoy going to gigs and I sing in a choir. I also spend a lot of my weekends in the cinema, theatre, visiting museums or trying new restaurants.

I was diagnosed with gallstones at the age of 25, over 10 years ago. I spent the next few months attending my GP and local A&E due to the gallstone attacks. I was feeling a pain in my upper abdomen, into my chest and through to my back and shoulder which felt like really bad heartburn. I felt nauseous and I was sweating and vomiting.

Three months later, I became very ill. My GP saw me and immediately rang 999. An ambulance rushed me to hospital. The pain was the worst I’ve ever felt and the only way I can describe it is that I felt I was on fire from the inside. Though I wish to, I will never forget this pain.

I was admitted to hospital with sepsis and multiple organ failure due to severe acute pancreatitis. In ICU I was put on life support. Doctors advised my family that I would be lucky to survive the next 48 hours and that they should make funeral arrangements. I can only imagine how this must have made them feel.

After three very scary weeks, I was still alive and well enough to be transferred from ICU to a surgical ward to wait to be strong enough for surgery. I had a procedure to drain fluid that had formed in my abdomen and a stent too. I then had 3 major surgeries in 6 weeks, resulting in further ICU admissions after each surgery.

I had my gallbladder and most of my pancreas removed, meaning my pancreas does not perform any of its functions, like producing enzymes for digesting food, or producing insulin. I am now an insulin dependent diabetic and I also take capsules of enzymes, known as Pancreatic Enzyme Replacement Therapy (PERT), to enable my body to absorb and digest my food.

There were many ups and downs during the five months I was an inpatient, and in the months after I was discharged. I moved back in with my family because I couldn’t care for myself. Without them, I would be lost. I had to learn how to walk again, and I had to learn how to manage my diabetes and all my medication.

I’m very lucky to have my parents and sister who were able to look after me. What happened to us was very traumatic, but it has brought us closer together. I was unable to work for almost 3 years as I recovered, but eventually I went back to work. I ended up getting a job in the hospital I was in when I was ill.

Three years after my attack, I was diagnosed with post-traumatic stress disorder (PTSD) as a result of my long-term inpatient stay. I’ve been treated for this, and working in the hospital has helped me a lot to deal with the psychological aspect of coming to terms with it all. This is something that people often forget about. An experience like this changes you physically, but also mentally too.

I still struggle with managing my diabetes, body image and physical ability due to extensive scar tissue and my mental health. Overall, my health is very good now. I’m very lucky and happy to be alive. I’m able to care for myself, I have a job that I love and I can go to work to help others. My close friends have also helped in my recovery and continue to support me, but the journey with pancreatitis is so extreme that it’s hard to completely understand if you haven’t witnessed it.

Before I had pancreatitis, I’d only heard of it briefly, commonly happening in animals. Even now, a lot of people will comment this about their own dog when they hear of my illness. I’m sharing my story to try and raise awareness that pancreatitis can happen to anyone at any age. I felt quite alone and spent many years looking for suppport and information to help in my recovery. I was very happy to find Guts UK through a Facebook page last year. I always share their posts – I’ll take any chance I get to raise awareness. If you survive pancreatitis, you don’t just ‘get better’ and move on. I now manage the consequences, like living with type 3c diabetes, which is a whole other rollercoaster.

There is no effective treatment for pancreatitis. There is no cure.

Guts UK is the only UK charity funding a research fellowship into pancreatitis. We are dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition.

People are suffering, people are dying, all because of a lack of knowledge about our guts. Join our community and champion our cause by donating to our life-saving research today.