Aimee hadn't heard of pancreatitis until she was diagnosed with it. This is Aimee's pancreatitis story.
My name is Aimee, I’m in my forties and I’m married with a teenage daughter. Prior to my illness, I can’t say that I knew very much about the pancreas and I’d never heard of pancreatitis. I was healthy, working in a job I loved as a primary school teacher, enjoyed being active and also eating out.
My pancreatitis journey started in October 2016, when I was admitted to hospital as I had been having awful back pain. The back pain had started in the summer, but I had thought it was a chest infection or something similar.
Whilst in hospital, the pain got worse and scans revealed I had gallstones and that one had lodged in my bile duct. I was given an ERCP procedure to clear the stones and I thought that would be the end of my pain.
Shortly after returning to the ward, I was in excruciating abdominal pain, vomiting bile and feeling horrendous. I was then diagnosed with acute pancreatitis caused by the ERCP. I spent a few weeks in hospital in which to be honest, my care was rather lacking. The doctors didn’t really explain what pancreatitis was or how I might recover. Looking online for pancreatitis information frightened myself and my family. We’re thankful to Guts UK for providing sound information that we could rely on at a time we really needed it.
I had imagined that once my gallbladder had been removed, I would feel much better but unfortunately for me this wasn’t the case. I suffered from ongoing abdominal and back pain along with nausea, and struggled to eat. Eventually I was diagnosed with chronic pancreatitis.
My weight started to fall and my BMI was getting too low. I was given a feeding tube to bypass my stomach and go straight to my bowel. This did help and it was changed to a permanent PEG-J tube in my stomach, but I developed problems with absorbing the feed.
Last year I had lost 6 stone in weight and was dangerously underweight. I was bedbound, on a minute amount of calories and suffered complications like bed sores. My medical team decided I needed TPN feeding into my veins to try to build up my weight.
In the middle of the pandemic, I was taken into hospital for a few weeks. Thankfully this, along with a new medication to help me absorb my feed, meant I could return home on my usual feed. I have since put on weight and although much of this has been from being steroid dependant due to another newly diagnosed condition, it has helped tremendously. Although I’m unlikely to be able to eat in the near future, I am focussing on building up so that I can begin a normal life again.
Pancreatitis has changed my life in many ways. I can no longer work, but I have picked up hobbies that I might not have discovered before pancreatitis, like reading and crafting.
Having a support network is essential with pancreatitis. My family have been amazing and never fail to be there for me. I have found the medical profession to be very mixed. Some doctors have tried to find solutions, others have merely said that there are no answers. My GPs have been fantastic throughout and I’m very thankful for that. Pancreatitis seems to be little known about by many hospital professionals and the experience in A&E can depend vastly."I would love for pancreatitis to be more known about, and I hope that Guts UK's Kranky Panky Campaign can go some way to achieving that." - Aimee
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.
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