Singer-songwriter Tom Speight spent his formative years battling Crohn’s, ending in ileostomy surgery. Afflicted with a prolapse a year later, another trip to theatre landed him with a colostomy. Despite the setbacks, music has carried him through, from hospital bed to centre stage.

 

I’ve had Crohn’s for 20 years, first diagnosed in my first year at university. It was the classic symptoms of diarrhoea, vomiting, weight loss, fatigue, cramps and pain that came at once out of nowhere. At first, the GP said it was probably a gastro bug but it resulted in me being hospitalised four years later, aged 23. There was no management of my symptoms leading up to the emergency ileostomy surgery; I was near death when they found that my bowel had perforated and I had septicemia.  

I woke up in intensive care and saw staples and two openings in my abdomen. One was the stoma and the other a mucus fistula. I thought, ‘I’ll deal with that later’ – I was exhausted and just glad to be alive.  

Back then, Crohn’s didn’t have the same presence as it has now in the media; I didn’t even know what it was. There was no family history; it was all a bit of a shock when it came out of the blue. At the same time, my music was picking up. So I’d get momentum and then my illness would drag me back down with it, meaning I’d have to cancel gigs – I thought my career was over before it begun. 

I think you have to try to accept the situation and move forward as soon as possible, but my experience up until the second surgery was like navigating a storm. A stoma nurse visited me a couple of times at home and that was it. I felt very alone, learning to deal with a new lifestyle, and no one signposted me to any external support. I’m sure it’s different today. I have a great stoma care team at Central Middlesex Hospital. 

Crohn’s and creativity 

I wrote the majority of my first album, Collide, in hospital. I managed to get hold of a guitar and I wrote a lot of songs over the two months I was there. Perhaps it is a bit of a dark album, but I hear it’s a fan favourite.  

I think music’s always been escapism for me, and it helps with my mental health. I’m incredibly grateful that I get to live my dream of being a musician, as it’s not been an easy journey. Overall, I think my illness has injected a bit of hope into my music and I’m so grateful to be working.  

Ostomy-community spirit

I don’t know what it is about people with IBD, but I’ve noticed they’re often very tenacious and positive. It takes a certain type of character and strength to pull through the disease, so I don’t know if in some ways that kind of bleeds into the music.   

I’ve noticed a community spirit now amongst people with Crohn’s and ulcerative colitis and people seem less isolated. Social media has really helped spread awareness too. I think if someone else has been in your shoes it makes you feel less alone, so sharing experiences can really help. If you see someone enjoying good health who has survived everything IBD has thrown at them, you’ll think, maybe there’s hope for me too. 

I think there’s less of a stigma only because people are talking about IBD more. I try to raise awareness and break down myths any way I can to normalise stomas and help people understand it’s not a huge deal. 

Stoma surgery and a new lease of life

Ileostomy surgery saved my life and gave me a lease of life I didn’t have before.  It doesn’t stop me doing anything anyone else can do. The biggest lifestyle challenge is being prepared and thinking on your feet. I imagine it’s like having a child – you tend to think ahead a bit more in terms of potentially needing extra supplies or knowing where the nearest toilet is on a journey. But 90% of the day, I don’t really think about it. Inevitably, there’ll be bumps along the way but try not to be too hard on yourself.  

It took a long time for me to get to the stage where I knew what was best for my body and understand how to manage the condition. I’ve had to learn to manage stress which means therapy, exercise, and rest. This can be challenging on tour.  

I know some performers have calming rituals before going on stage, but I don’t find it as anxiety-inducing anymore. I enjoy doing TV and radio. The big turning point for me was looking death in the face – it changed my perspective, and I just see all of this as something to take in my stride and try to enjoy. Life’s too short! 

Body image with a stoma

If you’re careful with your diet and treat your stoma with respect, it will hopefully work with you. I kept a food diary in the early days to learn what worked for me, and gave up alcohol about 10 years ago. And when exercising, the only thing I avoid doing is stomach crunches as I’m super cautious since the prolapse, though I’m not sure whether I’m right to do so. 

The more at ease I become with the stoma, the more confidence I have in my body image. I did a nerve-racking photo shoot with my top off for World IBD Day 2025 as a way to own my condition and not hide in the shadows. I don’t know anyone who’s entirely comfortable with their body anyway, whether or not they’ve had surgery.  

 

Making positive changes

I recently completed a charity challenge, the SAS’ Fan Dance, a fitness test used in their selection process which involves a 24km route march over Pen y Fan, the Brecon Beacons’ highest peak, with a pack weighing a minimum of 35 pounds. I finished it in 3hrs 50, just under their 4hr cut-off. I really enjoyed it; it was a similar kind of adrenaline rush from doing gigs and shows – a feeling of euphoria – and is another example of how this condition doesn’t hold you back. 

Ostomates have to find the strength to keep moving but accept it’s not going to be there every day. Life is a gift, isn’t it? You’ve just got to remember that.  

Find Tom on Instagram, X and Facebook, and visit tomspeightmusic.com

All photos courtesy of Tom Speight.