Claire’s story

Tell us a little about yourself

“I’m Claire and I’m 50 years old. I live with my husband, Dean, and our three children Georgia, Olivia and Max in West Sussex. We also have a dog called Luna. I worked for 32 years until I fell ill. In my spare time, I really enjoy walking, watching Netflix and reading.”

Can you describe when your gallstones symptoms started and were they were?

“In 2019, I experienced severe pain just below my rib cage. I thought I was having a heart attack but the pain went away after a few minutes. I thought it was severe indigestion. Then it happened again at work and I was sent home. My friend commented “It sounds like you’ve got gallstones”.  

I arranged a telephone appointment with my GP and they suspected gastroenteritis. I wasn’t sure, but I just took the advice. I’d also experienced a change in my bowel habits and was experiencing perimenopausal symptoms, so I thought it was all linked.”

Talk us through your journey with pancreatitis 

“My symptoms didn’t go away. I followed it up with my doctor and I was referred for a colonoscopy. The results were normal. I then developed a painless swelling in my upper left abdomen. I knew that something wasn’t right. My doctor referred me for an ultrasound scan which revealed severe gallstones. In 2021, I had my gallbladder removed.  

Scans after surgery showed that some of the gallstones had slipped into the bile duct. To remove these, I had an Endoscopic Retrograde Cholangio-Pancreatography (ERCP – where stones in the bile duct are removed with a flexible endoscope (thin tube)) in March 2022. 

After the ERCP, I felt okay but bloated. I managed to eat something, and I was told that a duodenal stent had been placed to help two large gallstones clear. On the way home, I developed stomach pain. A few hours later, I was in agony.  

Dean drove me back to hospital and I was admitted to the emergency assessment unit (EAU).  After tests and monitoring, I was diagnosed with severe acute pancreatitis, which they thought had been caused by gallstones and ERCP.  

The next day, I was moved to the intensive care unit (ICU). The first few days were such a blur. I was hallucinating from prescribed painkillers, and it was so scary. I had fluid on my lungs and wore an oxygen hood for most of the day, each day. There were numerous drains in my abdomen and lungs, draining fluid and bile.  I remember being told: “If you try to get out of bed, you’re going to die.”  

How did this impact you emotionally?

“One minute I felt improved, then the next, I felt like I couldn’t walk or breathe. I was in so much shock, as was my family. If I managed to walk to the end of a short corridor, it felt like a huge achievement. Everything was so overwhelming and despite pain relief, I had episodes of indescribable pain. I was also fed via different feeding tubes.”

What happened after being in the ICU? 

“After 40 days, I was moved to a general ward where I really struggled. I needed help with everything, which I often had to wait a considerable amount of time for, along with prescribed pain relief. I felt like climbing the walls in agony. 

I developed a blood clot in my arm and sepsis, and the ICU was involved in my care again. Then, I stayed in my own room on a pancreatitis ward which was a game changer. The staff had great experience and knowledge, which brought me huge relief. 

I experienced more setbacks when I got Covid and had to be isolated in hospital. This was especially tough. Whilst recovering from this, I developed a bowel fistula (an abnormal opening in the bowel that allows contents to leak) and needed feeding intravenously (via my veins). At one point, I thought “I’m never going to get home.” 

In September 2022, I made it home. My home comforts really helped with my recovery. I was still being tube-fed. In November 2022, some of my drains were taken out.”

Tell us about your chronic pancreatitis diagnosis

“In December 2022, I had another collection of fluid in my abdomen which required me to go into hospital to have another drain fitted. In this admission, I was diagnosed with chronic pancreatitis. Doctors found a tiny hole in my duodenum which they said had maybe happened during the ERCP.  The drain was left in when I returned home to see if it would heal itself, and I’m still waiting to see what the future holds with this.”

How are you now?  

“It’s hard to constantly wonder if I am healing. My life feels like it’s on hold and the fatigue is so hard to explain. I lost five stone after my ERCP and also lost some of my hair. I am also dealing with severe bile acid diarrhoea (BAD). I was told what happened to me is rare, but this doesn’t take away the weight of the pain this has caused me, both mentally and physically.”

What is one thing you wish people knew about pancreatitis?

“Pancreatitis is so serious and impacts your whole body. Most people, including me and my family before I became ill, don’t even know what pancreatitis is until they have experienced it. It’s important that we don’t forget that our loved ones are affected by what we go through too. There needs to be so much more awareness surrounding pancreatitis.”

Why do you support Guts UK charity? 

“I love how personable Guts UK is. The community is like a family and so supportive. Reading the stories from Kranky Panky has really helped me. I’ve realised that I am not alone. I hope in the future, Guts UK can help work towards more effective treatment for pancreatitis.”

You are through to the right place:

Pancreatitis is a priority area for Guts UK charity. We fund research into pancreatitis that has the potential to change and save lives. Our Kranky Panky Pancreatitis Awareness Campaign each November builds a community of those affected by pancreatitis, comforted in knowing they’re not alone. Our expert information allows those with pancreatitis to take control of their health, and make informed decisions.

We believe it’s time the UK got to grips with guts. Your support takes us one step closer. Donate today.