Alison's journey to a diagnosis of chronic pancreatitis took five long years. This is Alison's journey with pancreatitis.
I’m Alison, I’m 41 and I was diagnosed with chronic pancreatitis ten years ago. I’ve been married to Scott for over two years and we had our beautiful daughter Eydis last November. Eydis joined our 11-year-old Labrador Olly, to complete our family. I work full time in Engineering and when I can, in our free time we like to go running, swimming and hill walking.
My problems started in 2003 when I was 23 with symptoms of severe pain, vomiting, fevers and dramatic weight loss. I spent many weeks in and out of hospital and had every test imaginable, all of which proved inconclusive. I was even referred to the psychiatry team as the problems were ‘obviously in my head!’
Eventually on seeing a different consultant while an inpatient, it was decided to do a laparoscopy (inserting a camera into the abdomen) to see if there were any obvious abnormalities. I came round from the operation minus my gallbladder, which the surgeon said was the “biggest blackest, most infected thing he’d ever seen” and had ‘stuck to’ my liver. They could not explain how my blood tests showed no infection, yet my body was full of it. It took five months of antibiotics to clear it. Finally, it seemed I could recover and get my life back on track. But sadly I continued to have the same symptoms.
Two years on, by pure luck I saw a doctor who had just completed a study in this area and diagnosed me with Sphincter of Oddi Dysfunction. The Sphincter of Oddi is the valve at the bottom of the bile ducts. This valve was not contracting as it should, which caused bile to back up into my organs and had caused the gallbladder to become infected.
I was referred to the specialist hospital who ran more scans and arranged for a procedure to cut the ducts. I had this procedure in 2006. Although the procedure went well, I had massive complications after.
This is where I experienced acute pancreatitis for the first time. I remained in hospital for three weeks. It was a very scary time and I don’t think I had ever felt so unwell. Recovery was long and slow, but eventually I began to think I could get on with life.
Once home, the symptoms of pain and sickness continued in varying degrees and sometimes required me going back into hospital. The journey over the next five years was long and hard. I had numerous tests, but the hospital seemed reluctant to pin me down to a diagnosis.
During my time of illness, I did decide to do something positive and started studying for my history degree through the open university.
Using the resources available, I started researching my illness and possible causes. Everything I read pointed towards chronic pancreatitis. I was already very active with swimming and running. My research found being active is a good thing, not only mentally, but was also helping me to control the pain with the natural endorphin release. I also found that adjusting my diet and reducing the stresses in life also helped control the symptoms.
During this time I relocated. More hospital stays and confirmed cases of acute pancreatitis later, my new GP agreed that we should get a second opinion. I was referred to a new specialist and all my previous scans and tests were reviewed and repeated.
I was finally given the diagnosis of idiopathic (no known cause) chronic pancreatitis, although the time taken to diagnose the initial problem possibly contributed. Further research is starting to link the virus I had in my teenage years (causing chronic fatigue syndrome) as another possible cause.
I finally felt like I was getting the support and help I needed. Having a diagnosis means you can put the right medications and coping strategies in place.
Being quite medically minded and probably years of watching A&E TV shows, I was aware of pancreatitis. But I wasn’t aware of how it could be so difficult to diagnose, and that there was no cure – only symptom management.
Ten years on from diagnosis, I still have pain and nausea most days. My flare ups are of varying degrees, sometimes resulting in hospital visits. On the whole, I manage my symptoms quite well, as long as I can exercise, eat well, meditate, medicate and avoid stress. I’m determined it won’t beat me.
I’ve raised money for Guts UK in the past by running the Great North Run. I was hoping to do so again this year, but my Kranky Panky had other ideas. I’m happy to share my story as it is quite unusual, and I hope it may help just one person."I think it’s so important to raise awareness of these issues, but also helping to fund research. I really hope as time goes on, more research can be done to find the causes and any potential treatments so people like me don’t have to suffer." - Ali
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.