This is Angel's pancreatitis story, as told by her mum, Bri-ann.
Angel is a funny, kind, caring and shy child. She is a tom-boy through and through. She’d spent all her time gaming if she could and is ‘Sonic the Hedgehog’ mad. She loves sports and horses. Angel got her name because she is just that – a little angel.
Angel had suffered with problems like vomiting, pain and diarrhoea from just eight weeks old. As she got older, these episodes would get worse and would even last for weeks. Our doctor or consultants at A&E would always diagnose her with common childhood problems like constipation, colic or a stomach bug.
When Angel was four years old, she became really sick. We were told it was another stomach bug. In August 2017, Angel went completely yellow, was vomiting, had white stools and couldn’t move. She was very lethargic, so we rushed her straight to hospital.
It was there we were told she had obstructive jaundice and pancreatitis, but they could not explain to us what was causing it yet. It was hard to watch my little girl undergo so many tests and scans. Eventually, they found large gallstones. One gallstone was 3cm wide, which was completely blocking her bile duct, which had caused the pancreas to inflame and her liver to become enlarged. We spent nearly three weeks in hospital.
When Angel’s dad and I were told how poorly she really was, it was like being hit with a tonne of bricks. I’d been telling the doctors for years there was more to her symptoms. I felt I’d failed her by not pushing further. But Angel was scared enough without us showing how worried we were. For that reason, we never cried in front of her and left the room if it got too much. We got through it for her, together as a family.
As there were no specialists in Angel’s condition at our local hospital, we were transferred to a children’s hospital where Angel underwent a procedure to remove the gallstones. Afterwards, Angel had to wait almost two months to have her gallbladder removed, because her gallbladder, pancreas and liver were still so inflamed.
In October of 2017, Angel had her gallbladder removed. We thought her ordeal would be over. But Angel started suffering similar symptoms again and got pancreatitis a couple of times. The team decided to do more scans, to make sure that no gallstones had been left.
This is when they realised Angel’s bile duct was still dilated, and the join between her bile duct and pancreas duct was abnormally long (a long common channel). They believe this could be what caused the stones to dislodge so easily.
Angel was diagnosed with a choledochal cyst. A choledochal cyst is an anomaly of the duct that transports bile from the liver to the gallbladder and small intestine. In April 2019, just after her 6th birthday, Angel underwent surgery to remove the cyst. At the same time, surgeons also reconstructed Angel’s bile duct using a piece of intestine.
After that Angel continued to get pancreatitis, but they couldn’t explain why. Her dad has Crohn’s disease, so the hospital thought it maybe autoimmune related. Test after test showed it wasn’t cystic fibrosis either.
As Angel was so young, she didn’t cope well with all the tests. Taking bloods from her was the worst, it was a fight every time. She started refusing medication, and doctors said it was her way of trying to control a situation that is out of her control.
Angel’s dietitian decided it was best for her to avoid food high in fat. This was hard for Angel, as a child with a love of chicken nuggets and not being able to eat these with her friends. It was upsetting as a parent to see this affect and upset her. But Angel takes it all like a champ, although blood tests can still be a little tough on her.
The diet change helped, but she was still getting pancreatitis on and off, so she was eventually diagnosed with recurrent acute pancreatitis.
Angel is now eight years old and is doing well. Together, we have learnt what does and doesn’t help her in regards to her pain and other symptoms. We are waiting to see what will happen in the future, but at the moment Angel is a happy little girl who understands that she’s a little bit different.
We have recently welcomed Angel’s little sister, Haylo, into our family. Angel is absolutely in love with her baby sister. She loves to help and grabs every chance to have a kiss and a cuddle with her.
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.