Now 51, Jackie was only 17 when she first started experiencing pancreatitis symptoms. She is keen to raise awareness and help Guts UK work towards a brighter future for pancreatitis sufferers.
Tell us about you
“I’m Jackie and I’m 51. I’m one of ten siblings and unfortunately some of my close family members passed away way before their time. I am a proud mother of two grown up daughters, Lori who is 29 and Niki who is 32. I also met my partner this year. I love to explore the world and I’m passionate about music. I love life. I am currently working for a charity who help those with drug and alcohol related difficulties.”
Can you describe the symptoms that you first began experiencing?
“Before I turned 17, I experienced tenderness and excruciating pain in my upper abdomen that radiated into my back. When the pain was severe, it made me vomit and I also had a high temperature of over 48 degrees Celsius!”
Talk us through your journey with pancreatitis.
“I continued to experience severe pain and vomiting. The pain was worsening, and I still had a high temperature. On top of that, I just felt generally unwell, weak and was experiencing bad headaches. After needing to go to hospital at 17, I was misdiagnosed with appendicitis. This was then followed by gastroenteritis, followed by acute pancreatitis. I believe that there were misconceptions surrounding pancreatitis and alcohol which stopped me getting diagnosed earlier. After that, I didn’t really have any problems apart from when I was pregnant with my daughter, Niki when I was 19. I feel I may have had a small onset of pancreatitis symptoms but thankfully I experienced nothing else.
30 years down the line, pancreatitis reared its ugly head again. I experienced multiple attacks in between 2018 and 2021 with the same symptoms as before. I was then diagnosed with chronic pancreatitis. I was working in the prison service at the time. I felt so stressed and on edge and it got to a point where it was unmanageable. Sadly, I had to repeatedly take time off. I just couldn’t get on top of the pain I was experiencing and how awful it was making me feel. It was ruining my life.
I feel like stress made me feel worse each time. I kept trying to go about my daily life but come August last year, I had another attack which left me in hospital, followed by January this year. In July, I had to leave my job in the prison service. August 2023 saw me being admitted to hospital once again. Everything felt so hopeless. I feel like my life was in question and going into protection work felt no longer feasible.”
Talk us through your time in hospital
“The first time I was in hospital was daunting and scary. I was only 17 and had no idea about my condition. I was in for over a week. My symptoms made me feel helpless and overwhelmed.
I currently have stones in my pancreas and have had cysts on two occasions. During my last hospital admission, they tried to do a procedure to take the stones out. This was via an endoscopy down my throat but unfortunately, this wasn’t successful. The bile duct was too narrow. I now have a stent in the bile duct pipe to help widen it.“
Had you heard of pancreatitis before being diagnosed?
“No. I then found out my nephew who is in his 20s had acute pancreatitis when he was about seven. I often wonder if my diet had played a part in my diagnosis as I had a high sugar diet which mainly consisted of sweets, coke and crisps.
Getting my diagnosis of chronic pancreatitis made me feel so very low and upset and it was a lot to get my head around.
My daughters have been a fantastic support, but I’ve had little support from healthcare professionals.”
What are your hopes for the future?
I hope research from charities like Guts UK finds a ground-breaking solution so that people like me can live a normal life. I hope they can find solutions for the pain and so I don’t have to visit hospital so much.
How are you now?
I now have pancreatic exocrine insuffiency (PEI), so I am on prescription pancreatic enzymes. I also have type 3C diabetes caused by chronic pancreatitis. My mental health is affected due to the uncertainty of everything and health fears. I have attention deficit hyperactivity disorder (ADHD) and I find myself struggling to cover my bills every time I have to stay in hospital. Despite that, I’m sharing my story to raise awareness of this debilitating condition. My condition has an impact on everyone around me and it’s important to recognise this. My daughter, Niki, is so determined to help Guts UK too towards a brighter future for pancreatitis sufferers. Guts UK charity is helping to find an answer for all of us suffering from this awful condition.
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.