My Journey from Acute Pancreatitis to a Diagnosis

My journey to being diagnosed with Functional Biliary Disorder began unexpectedly while on holiday in September 2025. I began having severe stabbing pains in my abdomen, and I couldn’t face food. I was extremely nauseous; I could barely eat and assumed I was experiencing one of the small bowel blockages that occasionally happens to me – I have an ileostomy stoma and have scar tissue from the surgeries.

I returned home, and a few days later my nausea and gripping stomach pains hadn’t subsided, so I booked a GP appointment, and she called an ambulance. I was expecting nothing more than intravenous fluids and bowel rest – still assuming I had a blockage. Instead, blood tests revealed I had acute pancreatitis. The doctors were shocked that I had managed to cope with it for so long without treatment.

After ten days in hospital, and numerous scans which showed no gallstones or inflammation, nor any obvious cause for the acute pancreatitis, I felt I wasn’t receiving help or answers- I was even asked several times how much alcohol I drank (I don’t touch it) and I’m sure they may have considered alcohol as the reason why I had acute pancreatitis.

Determined to find out why this had happened, I left hospital and sought private care and, after seeing several consultants over a number of months, I was eventually referred to Dr Menon in Birmingham, whose expertise in pancreaticobiliary disorders finally provided answers. During this time I was still unable to eat more than a mouthful of food.

Dr Menon was concerned that my biliary system had become over-sensitised, and he prescribed medication to help calm this, as well as digestive enzymes to support my pancreas. He also recommended Botox treatment to relax the sphincter of Oddi.  By this stage, I had lost a significant amount of weight and had dropped to a size 6. I was eating dry cereal and taking liquid vitamins, but the supplemental drinks, given to me by the hospital, caused me a lot of pain, which I didn’t understand. Thankfully, my insurance agreed to pay for Botox treatment and, 3 weeks after the procedure, I experienced something I hadn’t been able to do for months—I could eat again without feeling full. However, I still couldn’t eat any food with fat in it without experiencing severe pain, and my food still hasn’t been digesting, so I eat mostly puréed food.

I have now had a special scan on my gallbladder called a HIDA scan which shows it isn’t functioning correctly and that my Sphincter of Oddi is also affected. I’ve been advised that removal of the gallbladder could make the sphincter of Oddi dysfunction worse. I have had to find a specialist gastrointestinal dietician, again privately, and I now have the correct nutritional drinks prescribed for me, which contain medium-chain triglyceride fats which bypass the liver and, therefore, are digested more easily; otherwise, I cannot eat any fat without severe pain, which further highlights why specialist dietician care for some with this condition is needed. I believe these investigations should have been standard tests available to me when I was first admitted with acute pancreatitis.

Throughout this journey, I have learned how difficult it can be to receive a diagnosis for a condition that is so poorly understood. I have also discovered the importance of specialist knowledge, patient support and advocating for yourself when answers are not immediately available. Although I have since had further Botox treatment, I still face uncertainty. My insurance will not fund long-term treatment, and ongoing private care is expensive, and I won’t be able to afford it long term. While Botox has significantly improved my quality of life, it is only a temporary measure, and I will likely need it every few months.

Managing Functional Biliary Disorder remains a daily challenge, and I am still very early into my journey, but I now have the support that I didn’t have available to me at the beginning of this journey. That is why I am proud to be involved with the Functional Biliary Disorder Foundation. My hope is that by sharing my journey, raising awareness, and supporting research, fewer people will have to endure the long, confusing journey that so many have faced before finally receiving a diagnosis, and I want to fight for others (not just myself)  to help make treatment available to all.