Meet Glen Neilson

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When you beat cancer and learn to live with a stoma, you can scale any challenge.

I’ve had my Ileostomy for 18 years now. Back then, I was in my early twenties and living my dreams in the Royal Navy on-board a nuclear submarine. It wasn’t the best place to fall seriously ill, but then I’ve never done things by half!

I was air-lifted off to hospital for tests and eventually given the news no-one wants to hear.

‘Mr Neilson, I’m sorry to say that you have thyroid cancer.’

‘Mr Neilson, I’m sorry to say that you have thyroid cancer.’

I think anyone who hears the C-word fears the worst, but I was mightily relieved when told that they’d caught it early, were going to remove it and there was a very high survival rate.

First cancer, then colitis.

If I thought my problems were over when the amazing surgeons successfully removed my cancer, I was wrong. Later, I also got ulcerative colitis. I’ve always been a fun-loving, positive person, but I’m not ashamed to say that the colitis left me feeling very low.

It’s not easy being happy-go-lucky when you’re constantly ill and on the toilet. I remember my son was six years old at the time and I took him fishing. I ended up going to the loo 32 times that day, spending more time on the throne than on the fishing bank!

My stoma was my life-saver.

I completely understand why not everyone shares this feeling. But that’s how I have come to think of my stoma. It saved my life – and completely transformed the way I live my life.

It hasn’t always been that way. I woke up during surgery in intensive care staring down at it. That wasn’t the best introduction! And neither was catching MRSA on my first holiday abroad, spending 8 long months recovering at home with a hole in my stomach.

My first bag didn’t bring any joy either. It didn’t help that I had problems around my stoma because of my baseplate and creases – and the fact my bag felt more like a carrier bag! It actually fell off the first time I ever went swimming. It took me two years before I would ever visit a pool again.

A new bag and the old me.

It wasn’t until my stoma nurse changed me onto the ConvaTec Natura two-piece bag that things started clicking into place (and I’m not just talking about the baseplate!).

The new bag gave me confidence and the old me started coming back. I got into going to the gym again, walking, golf and wild swimming.

I set up my own businesses. I’ve always had a sweet tooth, so I opened a sweet shop and cart for weddings and events. Another one of my ventures was a snow cone business called ‘Snow on the Piste’, which were alcoholic snow cones.

The only problem was I couldn’t keep my hands off the merchandise. Having thousands of black bullets (a popular North East sweet) at my fingertips was just too much temptation and I put on a lot of weight. Still, it was fun!

New challenges.

Far from stopping me, my stoma actually motivates me to take on new challenges. Before I had it, my quality of life was terrible. I couldn’t possibly have done the things I do today. And for that, I will always be grateful to the Little Shit. That’s my affectionate name for my stoma.

Over the last few years, me and the Little Shit have got into hiking in a big way. I’ve always enjoyed the great outdoors, but now we regularly pack a bag, me a rucksack and him his stoma bag, and disappear for days on end.

I love the freedom and if we do have a little accident along the way, who cares? In 2019 I actually completed a sponsored walk up Kilimanjaro which was amazing. It’s actually inspired me to train as a mountaineer and, because I love photography, to pass my drone flying licence.

My stoma is just like my tattoos – a positive modification.

My tattoos are very personal to me. Well, they’re part of who I am. Just like my stoma. In much the same way that I wouldn’t go up to someone and point out my tattoos, I don’t tell them about my stoma. But equally, I don’t hide it either.

It’s there for all to see when I’m at the beach or the swimming pool. I can honestly say, no-one has ever made me feel uncomfortable about it. Well, except the time I was at the airport and customs thought I was carrying drugs in it! But that was a one-off.

Social media and becoming a ConvaTec Advocate.

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One of the things I feel most passionate about is helping other people to live a full and rewarding stoma life.

I’ve got my own social media channel and through that I got to know the team at ConvaTec, who share my passion.

Now, I advise on everything from diet (I eat anything and everything in moderation) to exercise (just do it), hydration (hugely important, use Dioralites because water just doesn’t contain essential minerals) and daily life (be ready for anything!).

I get to attend roadshows and events as a ConvaTec Ambassador, which is great because I get to meet and make a difference to lots more people.

Life has its challenges, but I believe we can all overcome them.

If you can overcome the challenges of living with a stoma, you can overcome anything. That to me is inspiring and empowering.

So, if you have an accident remember that’s all it is, an accident. You had no control over it, so don’t let the thought of it happening again have any control over you.

We’ve all got our own mountains to climb. Hopefully I’ll see you on top of one of mine soon.

Good luck on your stoma journey.

Glen.

If you’ve been inspired by Glen’s story and would like us to pass a message on, simply email meplus@convatec.com or if you’d like to contribute your own stoma story, just get in touch the same way.  

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