Stoma story: ‘the kid with a bag’

30 May 2024
Stoma story: ‘the kid with a bag’

Oliver Kaye, known online as @thekidwithabag looks back at his stoma journey and how he uses his social media to empower himself and his followers

In January 2020, I was diagnosed with mild ulcerative colitis, a chronic illness that causes inflammation in my colon and rectum. Within six months, its severity forced me to undergo major surgery to remove my colon. This left me with a stoma, but it also saved my life, and allowed me to reclaim my teenage years. This is my story.

About a year before my diagnosis, I started experiencing mild symptoms: weight loss and some loose stools. I was a normal, healthy kid – active in sports, eating well and focused on my upcoming GCSEs. But toward the end of 2019, I visited the GP and was referred to a gastroenterology team. After tests, including a colonoscopy, the doctors made a discovery: I had ulcerative colitis. I had a vague idea of the condition, but it was a whirlwind of new information and medical terms. They prescribed an anti-inflammatory drug to control the inflammation, but unfortunately, it didn’t work.

After my diagnosis, I confided in only my family and a few close friends. My case was still mild, so I managed to keep up with school and my normal life. I figured a daily pill would be my only challenge.

But a few weeks later, I became incredibly sick. Sleepless nights, no appetite, blood loss and unbearable abdominal pain finally landed me in the hospital. There, intravenous steroids thankfully reduced the inflammation, and I went home after a week.

Oliver at the start of his journey and more recently

My doctors ramped up my treatment plan to control the disease. They prescribed a six-week course of steroids and an intravenous biologic drug called infliximab, administered every four weeks. The sheer number of medications felt overwhelming, but I desperately wanted to heal.

For a couple of weeks after the hospital, the new medications helped, and I got back to school and sports. Classmates asked where I’d been, but I mostly dodged the questions with vague replies like, ‘It’s complicated’ and ‘it’s a long story’.

By the end of March, I was feeling even worse than before. Medications and treatments were useless. I lost over 10kg, my blood tests painted a grim picture, and my body was failing. I was readmitted to the hospital in the heart of the COVID-19 pandemic. Treatment options dwindled. I’d tried so many drugs, but nothing worked. Surgery loomed as my only hope. When the possibility first arose, I felt terrified, shocked and angry. Why me? Why so young? I wanted to be out with friends, back in school – not trapped in pain and a hospital bed. The idea of surgery was terrifying.

In June 2020, I had my colon removed and an ileostomy formed. The first few days were extremely painful and overwhelming, but with each passing day, I found a little more strength.

I wanted to turn this challenge into something positive. That’s why I created a Facebook and Instagram page called @thekidwithabag, dedicated to spreading awareness about invisible illnesses and supporting young people like me who are facing this condition. Many young people choose to hide their experience because it is easy to conceal – it’s invisible. But I created @thekidwithabag because, before my own surgery, I found comfort and inspiration through social media. I saw others living happily with a stoma. If I can provide that same hope and support for someone else facing this surgery, that would be truly amazing.

The support I’ve received has been overwhelming in the best possible way! I’ve gained thousands of followers, shared my story on the BBC and other media platforms and connected with incredible people. Since then, I’ve built a community of over 20k followers on TikTok and Instagram, and I’m honored to be involved in campaigns raising awareness for IBD and stoma bags.

A year after surgery, fuelled by a desire to give back, I raised money for St Mark’s Hospital Foundation and Crohn’s & Colitis UK by selling t-shirts and running the Royal Parks Half Marathon.

And the achievements didn’t stop there. Last year, I had the incredible privilege of playing for and captaining the England Futsal U19s at the Under-19 Euro Championships in Lithuania and Italy. My stoma didn’t hold me back one bit. I hope my story inspires others with IBD and stomas, showing them it’s not the end of the world. It saved and gave me back my life. I’m now in my first year of medical school.

Oliver competes in the Under-19 Futsal EURO 2023 main round

My journey took an unexpected turn after my England futsal experience in 2023. I had stoma reversal surgery that summer, but sadly a few months later, IBD symptoms returned. The medications haven’t provided enough relief, and after careful consideration with my IBD team, I’ve decided to return to having a stoma. This surgery is a difficult decision, but my hope is that it will be the final step towards regaining my quality of life.