School. Exams. Peer pressure. Relationships. There are so many things to worry about when you’re a teenager. But being told you need a full colostomy and a stoma tops the lot. That’s what happened to me two years ago, when at the age of 14, my life changed.
I’d suffered from Colitis since I was 12. I was constantly ill. I was so weak that I pretty much slept through my early teens, missing out on loads of school, sports and fun. My parents and doctors tried everything, from painkillers to steroids and herbal remedies. Unfortunately, if it could go wrong, it did. The pain got worse and in 2018 at just 14 years old, I was informed that my condition was too severe, and the only remedy left was major surgery.
I didn’t take the news well. I’d have much rather lived with the pain, than with a stoma. So, like all teenagers, I sought a second opinion. Not from a doctor, but from social media.
Despite the fact that thousands of kids and teenagers have stomas, and diseases like Colitis are on the increase among young people, I was really disappointed with the lack of resources available. I wanted to read what life was like from someone my own age, not someone my parents’ age.
That’s really why I’m writing my story now, why I’ve set up my own Instagram page and why I’m keen to get involved in stoma advocacy. I needed reassurance. But I also wanted the kind of blunt honesty you only get from someone who’s been in your surgical slippers at a time when all your friends are Snapchatting their latest trainers.
That wasn’t so bad. I couldn’t feel a thing. Little did I know that when the spinal block was to wear off, I’d be in agony relying on paracetamol to control the pain.
Things didn’t get any better when they tried out my first stoma bag. Disaster. The bags weren’t working, and neither was my stomach. I left hospital in pain, with bags that didn’t fit and wondering if this was my life from now on.
School has been a bit of an up and down experience for me. On the one hand it was great to be back to normality and seeing my friends, but on the other I’ve had to endure some very awkward moments. Like the time my bag burst in the middle of my English mock exam! I rushed to try to finish the paper but in the end, I just left the room before the smell became too strong.
Over time, the life lessons I learnt at school were probably more important than any classes I took. I learnt that everyone who has a stoma is on their own personal journey. And so I had to find my own way of living with it.
It’s amazing what a difference the right stoma bag can make. For me it’s all about confidence. If I’ve got confidence in my bag, I can do all the things I used to do before, like run, go paddle boarding and meet friends.
I would always recommend trying different bags until you find the one that suits you. I did exactly that until I found the Convatec Soft Convex at the start of 2020. Around the same time, all my complications started settling down, so I’ve finally been able to put on weight and get back to normal.
My family have always been there for me, even if my older sister and younger brother aren’t fully clued up about stomas! Early on, I also chose to tell my closest friends. They knew I hadn’t been well, so it made sense just to show them my stoma bag. I was still a bit embarrassed, but I needn’t have been. They were brilliant and really intrigued.
I’m doing a lot of running at the moment during Coronavirus lockdown, just to keep fit and active. It’s brilliant to have the energy to do a 10mile endurance run, when I never used to be able to get out of bed. I just have to remember to stay hydrated by taking plenty of salts and electrolytes. I also love going stand up paddle boarding at the beach.
I don’t let my stoma hold me back too much in terms of fashion. I really wear want I want, except anything that’s too tight. Walking down the street, to everyone else I am just a person without a stoma, it’s not something you need to try and hide. When it comes to food, I’m really lucky that I can now eat anything I want. If I eat corn, kale and broccoli, I’ll have a bit more output than I normally have. But it’s no big deal. The biggest thing for me is to stay on top of my hydration.
Up until this year, I wasn’t looking too far ahead. But now I feel great and can start thinking about the future. We were going to go to Thailand on holiday, but obviously Coronavirus has put those plans on hold. I’m doing my A-levels and hope to go to University or study for a CIMA accountancy qualification.
I also want to talk to other people my own age who have a stoma. I’d like to get involved in advocacy. I recently set up my own Instagram page, just to reach out to other young people who might be going through the same issues as I was.
Make sure you’ve got a good system of friends around you, ones that you can trust. Keep your family close and communicate openly with them. They really were my backbone throughout this whole thing. I would also say try and make sure you are as fit and strong as you possibly can be before your surgery so that you’re prepared when you come out and can recover quicker.
It’s so important to get your nutrition up too. I went in to hospital so weak, so that’s if you can get your strength up, I think it would really help. I’d also say to make sure you stick to the medications your doctors recommend if you can and don’t play around with them.
Go in positive, but at the same time, be ready for every situation that you face. Not everything will go smoothly, but it is what it is and you have to be prepared and not just gloss over it.
It is always going to be a massive surgery, but my advice would be just take it all one step at a time and get an accurate representation of what to expect. And also, don’t rely on the internet too much, there’s so much information out there which can be scary and too much to take in.
If you’ve been inspired by Slaide’s story and would like us to pass a message on, simply email firstname.lastname@example.org or if you’d like to contribute your own stoma story, just get in touch the same way.