Oliver was diagnosed with Ulcerative Colitis in January 2020, aged just 16. Six months later (June 2020) he had surgery and a stoma fitted. I interviewed Oliver about his experience with UC, a stoma and having the “shit hit the fan” at the peak of COVID-19. 

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When were you diagnosed? 

I was diagnosed in January 2020 with only mild colitis. My doctor gave me just one pill to keep it under control, although this didn’t work for very long. 

When did you notice your very first symptoms of colitis?

I started noticing symptoms such as weight loss and loose stool, about a year before I was diagnosed. It was very very mild.

Tell me more about your stoma journey…

A few weeks after being diagnosed, I fell incredibly ill. I was missing school and time with mates and was then rushed into hospital. After a week in hospital I started to see some improvements, but it was short-lived. I fell really sick again in April, right at the peak of COVID-19. I was put on lots of pills, including steroids, immunosuppressants and weekly Infliximab infusions, but nothing seemed to work. After spending over a week in hospital I was starting to feel a bit better but at this point having surgery was becoming increasingly more likely.

A couple weeks passed and I was only getting worse. After having lots of tests, procedures and discussions with too many doctors, my only option was to have my colon/large bowel removed. 

In June 2020 my colon was removed.

What was it like having to make such a huge decision so young?

Having to make this decision was very difficult. I actually cried the first time my nurse mentioned the surgery, but as I’d been ill for so long, having surgery was the necessary path for me to get better and be a teenager again. Ever since the op, each day I’ve been feeling so much better mentally, physically and emotionally. 

Why did you choose to share your bag on social media?

Not long after my surgery I created a page on Facebook and Instagram called @Thekidwithabag. More than 300,000 people in the UK are affected by IBD and I decided I wanted to raise awareness, to inspire others who are going through similar situations and connect with people.

Also, not many people my age share their story online and before I had surgery people on Instagram and Facebook gave me that extra confidence. So, if I can do that for other people that is amazing.

What is it like having to miss school? Have they been supportive? 

I’ve just turned 16 and was meant to have my GCSE exams – my last exam would have been the same day as my surgery.

I missed a lot of school and time with my mates. I was in and out school and the hospital, which was hard. To be honest mostly frustrating, because I had no control. There was nothing I could do about it – I just had to go where I was told and do what was best for my health. I dodged a bullet by not having to take my exams, although my predicted grades are good, so we will see when I receive my results very soon. 
The school were supportive in arranging the appropriate things I needed like toilet permission during lessons and other conditions for my exams.

What is your support network like?

The support Ive had has been absolutely amazing from friends, family and others. To be honest, it exceeded expectations! So many people having messaged me saying how inspirational I am and some have messaged me saying they have had, or are in the same situation as me. Which I think, creates a good sense of community. 

Do you have a different perception of body image?

My idea of body image has changed. I am slightly afraid of people judging me and the bag more than before the surgery because it’s abnormal and different. However, I just remember that it did save my life, so I accept that I have the bag and live my life how I please. I’ve shown my bag on social media which I think shows I am quite confident with expressing the bag, but Im not ready to show the actual stoma yet. 

How are you now? 

Ultimately, it saved my life. Now I’m almost six weeks post op, I feel like my life has been given back to me and I can live as a teenager again and do the things I love! 

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Managing comfort with an ileostomy ⬇️ ▪️Find the right bag for you. With so many different types and brands out there getting the best one for you body will maximise your comfort ▪️Hygiene. Keeping the surrounding skin clean will prevent irritation which can lead to soreness and itchiness ▪️Get a support belt for comfort during physical activity but also to prevent hernias and prolapse (stoma complication) and boost self confidence making you more comfortable in public Everyone is different in their own ways so people’s ways of managing comfort might not be the same as mine or someone else’s Let me know about your tips and tricks @thekidwithabag #motivationmonday #crohnsandcolitis #crohnsdisease #awareness #chronicillness #invisibleillness #fashion #ibdsuperheroes

A post shared by Oliver Kaye (@thekidwithabag) on Jul 20, 2020 at 4:20am PDT

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