This story is part of the Guts UK Pancreatitis Awareness Campaign.
My name is Georgina and I am 38 years old. In 2016 I became frighteningly ill with what I believe might have been pancreatitis. I still have no confirmed diagnosis today but in the absence of any other medical explanation treating my symptoms as if they were pancreatitis has helped me to largely regain my health and my life. My health had been fairly robust during my twenties though I’d had a few episodes of unexplained stomach/back pain around my right rib area that came and went and a couple of suspected kidney infections. Following the birth of my two children in my thirties I started to feel a bit off with symptoms such as vague abdominal pain, nausea, a swollen tongue (a sign of malnutrition I later discovered), fatigue and bowel issues but blood tests showed no obvious problems.
In February 2016 during a course of antibiotics for a suspected chest infection I developed stabbing, twisting stomach pain which shot up into my shoulder and came with a complete loss of appetite and nausea. After visiting my GP the pain was chalked up as suspected gallstones so I was advised to eat a low fat diet and wait for an ultrasound. In the three and a half weeks waiting for the ultrasound the pain continued, while I cycled though various other alarming symptoms including the feeling of a golf ball in my abdomen, a crackling feeling in my upper abdomen, constant acid reflux and the feeling that I was losing the blood supply to my stomach, as well as a strange pulsing and the sensation that something was blocked around my abdominal region. My ultrasound was clear so the GP shrugged their shoulders but my symptoms continued. In the months from February onwards I was in and out of the doctors and A&E trying to find an explanation for my sudden and dramatic deterioration in health.
With scans and blood tests signalling nothing obvious the medical profession were generally scathing of my symptoms, with my GP suggesting it could have been the stress of having young children and referring me for CBT. Eventually I was referred to a gastroenterologist who referred me for an MRCP and when that was clear suggested it was some kind of post-infectious IBS. During this period I experienced other symptoms, including developing small bruises all over my body and fatigue so severe I couldn’t stand up in the shower and barely had the energy to walk up the stairs – in retrospect a couple of times I think I was verging on sepsis. Thankfully I persuaded my GP to give me antibiotics during these times as I was feeling so horrendously, which I think probably saved my life, but the doctors were still shrugging their shoulders as to a diagnosis. During this period my blood sugar also felt as if it was fluctuating and I had more than one night where I felt so awful I was fairly sure I was going to die. Eventually I gave up trying to find answers, accepted that death was probably imminent and wrote goodbye letters to my children. This was around September 2016 and I honestly didn’t expect to see Christmas or the end of the year.
However I was still alive on the 1st of January 2017, though feeling pretty weak and living off the odd bite of banana and bowls of porridge, so I decided I had to work out a way forward. My most severe symptoms had subsided but I still had stomach pain, nausea, a lack of appetite, hair loss, abnormal stools and felt dreadful. Online research kept leading me to pancreatitis so I decided to join a few Facebook groups to explore this possibility further – in all honesty hoping that I could eliminate it from my enquiries. As I trawled through the posts I was struck by how similar many people’s symptoms and experiences were to mine and what a long journey some people had been on to get a diagnosis – with doctors denying there was a problem or misdiagnosing symptoms for many years as conditions including IBS or kidney infections. I was also struck by the fact that a minority of people said their pancreatitis never showed up in blood tests and no damage showed on any scans until several years after the onset of symptoms. In some types of pancreatitis the damage never showed on standard scans yet GPs and gastroenterologist seemed oblivious to the possibility that you could have pancreatitis in these circumstances.
I thought I had nothing to lose by asking to be treated as if it was pancreatitis and at my follow up appointment with my gastroenterologist I asked whether I could try Creon, a digestive enzyme supplement that I had read could help with Exocrine Pancreatic Insufficiency (EPI), which is a side effect of pancreatitis. Thankfully my gastroenterologist was open minded enough to let me try it and the difference in my health was like night and day. Quickly my stomach pain and bowels improved, my blood sugar stopped feeling like it was fluctuating and I started to regain my energy. Within a year I was back to about 70% of my old self provided I stuck to a pancreas friendly diet.
So to answer the original question could it be pancreatitis, I believe that it is possible my pancreas has been unhappy for some time and I suffered an acute attack in 2016. I now have chronic pancreatitis, quite possibly a small duct variety, but it is impossible to prove and I remain open minded. Pancreas experts I have consulted suggest there is a paradox in that some people have severe symptoms and show no damage while others have no symptoms yet show extensive damage making it a difficult disease to diagnose in some patients. Advances in medicine and genetic testing offer hope. For example, a company in the US called Ariel Medicine has launched a service called PancreasDX, which will test you for the most common mutations that cause pancreatitis and can potentially help you to understand your condition and possibly better manage it. I haven’t taken the text yet but I haven’t ruled it out for the future.
I hope that my story gives people suffering with similar symptoms some hope and another line of enquiry and encourages medical professionals to take a second look at this elusive condition. I strongly suspect there are many others like me with vague diagnoses like IBS, acid reflux, gastritis and even Chronic Fatigue Syndrome (CFS/ME) who could benefit from a similar approach.
What can you do?
Join in our Kranky Panky Weekend fun and fundraise for more pancreatitis research with Guts UK. Check out some of our fun ideas here!
Guts UK is proud to fund the only fellowship into pancreatitis in the UK. However, one fellowship every three years is not nearly enough for this potentially deadly condition with no specific treatment. We need to do more. Help Guts UK fund more research to find a treatment for pancreatitis by donating today.