I’d just turned 16 years old when my colon was removed to create an ileostomy. This saved my life and left me with a stoma bag.
It all began in January 2020, when, after many tests and procedures, I was diagnosed with ulcerative colitis. Initially, I was given a pill to take to keep the condition under control. However, it didn’t work as we hoped.
In and out of hospital
A few weeks later I began to feel extremely ill. I felt so unwell that I was not sleeping or eating. I was missing school and time with my mates, as well as losing a lot of blood. I was admitted to hospital for the first time, where I stayed for just over week. That time I got better and was discharged. Following this, I was put onto more medication including, biologic medicine every 4 weeks, as well as steroids and immunosuppressant drugs.
Nothing seemed to be working, as I wasn’t responding to the medication. In April 2020, in the middle of the global pandemic, I again became incredibly sick and had to be admitted to hospital. My heart rate was 130 beats per minute, my bloods were not good, and I again wasn’t eating or sleeping. After a week in hospital, I again got better.
Oliver’s tips for managing comfort with an ileostomy |
| Find the right bag for you, because, with so many different types and brands out there, getting the best one for your body will maximise your comfort |
| Take care of hygiene by keeping the surrounding skin clean—this will prevent irritation, which could lead to soreness and itchiness |
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Get a support belt, because they give you comfort during physical activity; reduce the chance of a complication, like a hernia and prolapse; and boost your self-confidence by making you more comfortable in public |
Going for surgery
At that point, I had tried everything out there, but I wasn’t really getting better. I was slowly disintegrating. It was becoming increasingly likely that curing my acute colitis would require surgery. Therefore, in June 2020, I had my colon removed.
This was the solution that worked for me. Having a stoma gave me back my life, and it allowed me to be a teenager once again.
Oliver was diagnosed with ulcerative colitis
Doing something positive
I wanted to turn my experience of ulcerative colitis into something positive. I especially wanted to help to support young people like myself who have been, or are going, through the horrible condition. Not many young people with an invisible illness feel able to speak out about it, because there’s a lot of stigma surrounding the topic.
To raise awareness, break the stigma and increase public acceptance of invisible illnesses, I created a Facebook and Instagram page called @thekidwithabag. To give back to the people who supported me, I have been raising money for St Marks Hospital Foundation and Crohn’s & Colitis UK at rallyup.com. These charities fund life-changing research projects and provide support those who need it most, just like I did.
Catch up with Oliver online |
No fear
Ever since my operation and getting involved in these online campaigns, I’ve began to feel better again and more like myself. I hope we can remove the fear and stigma of bowel disease for everyone, at any age.
Oliver Kaye goes to school near London and raises awareness for IBD