Holly’s story – Biliary Sphincter Disorder and Pancreatitis

Tell us a little bit about you 

“I’m Holly, I’m 36 years old and I live in Lancashire with my husband Luke, and our two children, Dexter (14) and Dolly (12). We spend a lot of our free time together as a family and with the wider family too, but other than that I also really enjoy digital drawing and digital artwork.” 

When did your difficulties with your health begin? 

“I was three months pregnant with Dolly, and it was July 2010 when my symptoms began. I started experiencing pain and one day, I genuinely thought I was having a heart attack. I called for an ambulance and they couldn’t find anything that explained the pain. My liver enzymes were very raised on my blood tests, but the hospital just kept me comfortable and re-did the bloods until they returned back normal. 

The next few months were so chaotic, I was taken to A&E via ambulance or family weekly by this point. One Saturday night sticks in my mind in particular, as I was six months pregnant, with my toddler in bed and I was rolling around on the floor crying out in pain. I was having every scan my local hospital could offer.” 

What were your symptoms? 

“I’d experience a pain behind the right side of the rib-cage, that would travel over the shoulder and through to the back. Eventually, someone at the hospital mentioned gallstones, but some felt I was too young. A scan didn’t find gallstones, but it did find what they thought could be sludge. Two months after Dolly was born on in January 2011, I had my gallbladder removed. 

At this point, I had worked in optics for ten years and I loved my job, but I wasn’t able to stay long after returning from maternity leave because I was so unwell. I relied on support from my family, as I was in hospital so frequently. With Dolly being a baby, it was especially hard knowing that she was relying on Luke for everything, like when she’d wake in the night for a feed. 

The years continued, with no more answers but many hospital appointments and A&E visits. The children would often become quite anxious about my health, as often I’d take them into school and wouldn’t be able to show up to pick them up. They have autism which can make it even tougher on them. There was a period where my husband was able to work from home for a couple of years, which would help us greatly as he worked from 3pm onwards.” 

Talk us through your journey to diagnosis 

“My Nanna has pancreas divisum, and is under a specialist in Manchester. She went to see him in 2013 for a routine appointment. He asked, “How is the family?” and she told him about how much I was struggling. He told my Nanna, “Tell your granddaughter to go to her GP and ask for a referral to me. I will take care of her”. This was music to our ears because we were so desperate at this point, and had been emailing hospitals around the world. 

When I had my appointment in Manchester, after just speaking about my symptoms the gastroenterologist knew I had Sphincter of Oddi dysfunction, and confirmed it during further scans. It was amazing to have an answer, and I was booked in for an endoscopic procedure (ERCP).  

Unfortunately, this procedure caused pancreatitis for me, which meant I had to spend almost three whole weeks in hospital, quite far away from home. I was in so much pain, and spent my days rolling around the bed, taking all the pain relief I could. I missed being able to see our young children, and it was amazing to be finally let home.”

What treatments have you had for the Sphincter of Oddi dysfunction? 

“My diagnosis is the type of Sphincter of Oddi known as Biliary Sphincter Stenosis/Obstruction. Over the years, I have had biliary sphincterotomys, balloon dilations, and many other endoscopic procedures. Sometimes, I have experienced up to six weeks completely pain free, and off all medication after these, but it is sadly never long term.” 

How are you doing more recently? 

“More recently, I live with pain and nausea daily and sometimes, like with any chronic illness, I will experience a flare-up and normal daily tasks become impossible. I do my best to stay out of A&E, as it becomes so tiring having to explain to everyone what Biliary Sphincter Disorders are and what I need. 

Chronic illnesses are a funny thing. No one blinks twice when you have a flu, and everyone encourages you to stay in bed all week and sleep it off. But when you’re ill all the time, you can’t do that. Life goes on around you, and you have to push through. That’s why, for me, compassion is everything.” 

Why are you sharing your story today? 

“I don’t think this is a well-known condition at all. More awareness is so important, as I know there will be so many out there who are struggling to get a diagnosis like I was. My diagnosis took over two years. It’s always a good thing for all of us to understand one another better, and learn about new things, especially those in medical school.” 

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.