El's shares her story as part of Guts UK's Pancreatitis Awareness Campaign, Kranky Panky.
Hey, I’m El, I’m 28 years old and I share my story in the hope of helping others.
Aged 8 and attending Brownie camp for the first time, I began experiencing extreme pain in my left side, a burning sensation that would shoot into my back. I began to sweat, vomit, shake and become dehydrated.
This began my 12 year journey of managing an undiagnosed condition. I had an unheard voice for 12 years, numerous GP visits, appointments and ambulances later I was always told ‘you’re a mystery’.
I learnt how to share my body with my pancreas, we worked shifts. During my shifts I would make plans, study and work towards future goals. When my ‘shift’ ended, all progression stopped, as did my control.
I began University and my house mate had to ring an ambulance. I was unresponsive during an attack. This time, I was finally investigated for pancreatitis. I now fitted the alcohol profile as a student, despite drinking 0 units of alcohol. I question how credible ‘ideal profiles’ are when a child needs medical attention?
My consultant explained how removing my gallbladder could improve my quality of life. I had it removed on my 21st birthday. For me, this made no difference. My weight became a concern. I was unable to lose weight and was around 14 stone.
The morning after my 22nd birthday I awoke blind, I had become an insulin dependent diabetic (type 3c diabetes). By this point, I had uncontrollable diabetes I would have to inject insulin regularly throughout the day, another routine I could not find space for within my life. After experiencing issues regarding food, pain and sickness after eating, I was unfortunately signposted to an eating disorder service. Shortly after, I was finally diagnosed with pancreatic exocrine insufficiency and prescribed digestive enzymes. Until 2018, my condition was managed by the diabetic team. I felt I lacked support for my pancreatic diagnoses. I had no nutritional support until 2018, nor access to mental health support.
After changing symptoms, I was tested for pancreatic cancer. I discussed my concerns with my GP, whom referred me to a pancreatic centre in another city.
At the pancreatic centre, I was finally given genetic testing amongst other tests; none indicated the cause of pancreatitis. My consultant would need a recent CT scan and an endoscopic ultrasound (EUS) before he could support me further.
Now, the pancreatitis had holistically impacted on me. My weight was a concern, as was my mental health. My thought process was affected and my emotions unstable. I was told I had malnutrition. My ribs began to crack and my teeth began to break. My stomach began to reject food.
I had a feeding tube placed, but it was rejected within 30 minutes.
I was admitted into the hospital to trial a permanent feeding tube into the stomach. This originally 5-day trial in hospital lasted months due to Covid-19 and my trouble tolerating food. The team arranged for scans to be carried out during my admission, but local commissioners would not fund them as I had had them previously. Isn’t that what monitoring is?
I had a JEJ fitted and was discharged. My JEJ later became granulated, infected and unfortunately it was rejected. This was like a knife to the heart, all that time in the hospital during Covid-19 for what felt like nothing. I felt more alone than ever.
Scans identified stones blocking both my common bile duct and pancreatic duct. They also identified that I had idiopathic chronic calcific pancreatitis. I am now preparing for surgery, I will be having ‘duodenum-preserving pancreatic head restriction with longitudinal pancreatojejunostomy’, which hopefully will mean I will not become diabetic again.
Pancreatitis changes your life and who you are; it takes away precious time and moments that should be spent with the people you love. I hope my operation will allow me to live again.
My future hopes
Despite urgent need for research into all aspect of pancreatitis, there has been no evidence-based effective treatment options over the last 20 years. Years of laboratory models understanding and looking at the mechanisms of the damage to the pancreas has yet to produce any improvements.
Guts UK is the only UK charity funding a research fellowship into pancreatitis. Their current research is exploring the inflammatory reaction occurring during pancreatitis, alongside a particular enzyme and it’s interaction with the immune system in pancreatitis.
‘Treatment’ for my condition aims to control symptoms in hope of improving my quality of life.
Once I have had my operation, I intend to use my social work skills to highlight gaps in supporting individuals with pancreatic conditions including monitoring, research into nutritional and mental health issues as a result of pancreatitis.
If I could change one thing, it would be to ensure professionals are both honest and empowering when diagnosing somebody.
> Elise's advice for others
- Be aware that side effects of pancreatitis can be experienced before any structural abnormalities are shown.
- Ensure blood tests are checking Amylase’s.
- Ensure that from the moment of diagnosis, you understand the condition and complications that may arise.
- Ensure the team supporting you has plans and that you are a part of these.
- Use the pancreatic guidance to ensure you’re getting regular monitoring.
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is the only UK charity funding a research fellowship into pancreatitis.
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.Be part of life-saving research by donating to Guts UK today. Let's get to grips with guts. Let's get to grips with pancreatitis.