Cole was diagnosed with pancreatitis when he was four. This is his story, told by his parents Laura and Adam.
“Hi, I’m Laura and I’m mum to Cole, Harrison and Ava. Cole is eight years old, Harrison is seven and Ava is just 16 months. Cole is a happy little boy. He adores drawing and is incredibly talented too! He can watch people drawing on videos online and copy them exactly. Though Cole and Harrison can fight like cat and dog being so close in age, they’re both brilliant with their little sister Ava. Cole is always the first one to greet her in the morning and loves helping me with her.
When Cole was really little, he’d sometimes projectile vomit after a bottle of milk. But when Cole was three, he began complaining of tummy pain. We’d look at his poo, which would be fatty, soft and often the colour of clay. He’d tell us that he hurts around belly button, and we noticed he was completely off his food. He’d curl up on the sofa and cry in pain. It’s so hard to watch your child like this.
During this period, my husband Adam and I were back and forth to the doctors constantly about Cole’s symptoms as we were so worried. We were told Cole is most likely just attention seeking, or that he had a food intolerance. All the while, Adam and I were both working full time, staying off school with Cole which hits you financially. We were completely alone and unsupported. No one had listened to us.
One afternoon, Cole was playing in the paddling pool in the garden and had an accident. My mum, Melissa, was there and called me over to come and look at Cole’s poo as she was so alarmed. It was bright white. When we took Cole to A&E, we were told it was most likely a bacterial infection in his stomach. We were sent home.
Cole had just celebrated his fourth birthday when we had to take him to A&E again. This time they asked about our family’s medical history, and I briefly mentioned that Adam’s mum, Carol, had experienced gallstones and pancreatitis. Finally, Cole was taken for an ultrasound and his bloods were taken. They found he had pancreatitis and was experiencing an attack.
I remember breaking down into tears, thinking about all that our little boy has been going through and all the pain. We wondered how he’d ever trust anyone again. I was and still am Cole’s advocate, and felt like I’d let him down. Cole spent three days in hospital.
When Cole was finally discharged after what felt like a lifetime, the gastroenterologist noted that this was most likely a one-off for Cole and wouldn’t happen again. Cole never had any genetic testing.
But unfortunately last year, when Cole was seven, he experienced two more attacks of pancreatitis. He spent a full week in hospital for his first attack. It was scary to see him on oxygen, catheterised, with all the tubes and wires. I was heavily pregnant with Ava at the time too, so when a nurse asked us if Cole had always had such a low pain threshold, I wasn’t happy to say the least!
This was when they decided to do genetic testing on Cole, and found that he has the SPINK1 gene mutation, which we discovered can increase your likelihood of developing pancreatitis.
Just a few weeks ago, our younger son Harrison began complaining of belly pain and feeling sick. He’d go from eating as much as he could, to completely avoiding food. Of course, the first thing we thought of was his pancreas. After a blood test, our doctor asked us to go to hospital as his amylase levels in his blood were raised. He was kept in overnight when his levels were within normal range, but he’s had constant belly pain since. He’s not eating and is relying on children’s painkillers.
Our current struggle is keeping Harrison’s weight on, and helping Cole lose weight. Both Cole and Harrison take medication for a heart condition they have too. We haven’t yet seen a dietitian with pancreatitis knowledge yet, and only recently learnt that Cole’s pancreatic enzymes shouldn’t be taken 10 minutes before he eats. At this point, we still feel unsupported, as we’re unsure why our whole family hasn’t been called for genetic testing yet to see who may have the SPINK1 gene too. We feel like we’re walking on egg shells, like we’re just waiting for the next niggle of pain to turn into a hospital visit.
Guts UK and connecting up with other families in a similar position to us has been such a welcome relief, as has the information from Guts UK. We want to share Cole’s story so that others realise they’re not on their own. Cole has lost a lot of his confidence, so connecting with other people just means that we’re not alone in this. I hope that healthcare professionals reading Cole’s story can learn from our experiences, just like we’ve learnt from reading other Kranky Panky stories.”
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.