Tom Speight, showing off his gym-honed physique, looked every inch the confident pop star as the photographer snapped away. Less obvious was the battle it had taken him to get to that point.
But look again at the results of that photoshoot here, and just above his belt is the singer-songwriter’s stoma – a permanent opening in his bowel that allows his faeces to collect in a pouch.
For Tom, 38, who has worked with major artists such as Ed Sheeran, Keane and Mumford & Sons, it was the result of complications from severe inflammatory bowel disease (IBD), and this is the first time in 15 years that he has fully exposed his upper body in public.
But he is doing so not to promote an album or drum up ticket sales for a tour. Instead it is to offer hope to anyone with Crohn’s, the painful autoimmune disease that he has had to endure for half his life, that it is possible to live fully after such drastic surgery.
‘Having a stoma undoubtedly saved my life,’ Tom says today. ‘It’s made me a stronger person and has shaped who I am. But there is still a huge stigma around stomas and talking about them.
‘For me, it has been about claiming my life back. Pre-surgery, I was just existing – I wasn’t living.
‘Now I’ve got my career back and I’m in the best shape of my life. I’m wearing my stoma proudly – it’s not something I want to hide, and I hope it helps others realise it won’t hold you back.’
Tom Speight, showing off his gym-honed physique, looked every inch the confident pop star as the photographer snapped away. Less obvious was the battle it had taken him to get to that point
Tom is one of about 500,000 people in the UK living with either Crohn’s disease or ulcerative colitis, another form of IBD. The lifelong conditions, which have no cure, trigger the immune system to attack healthy tissue, causing painful ulcers and inflammation in the digestive tract.
Symptoms include pain, diarrhoea, weight loss and fatigue, but there can also be serious complications. There is an increased risk of bowel cancer, painful infections and damage to the gut wall, and many patients suffer nutritional deficiencies, both because of poor absorption and because they avoid eating owing to abdominal pain and nausea.
Tom, who has lived with Crohn’s for nearly 20 years, was 19 and a promising music student at Paul McCartney’s Liverpool Institute for Performing Arts when he was diagnosed.
He was rushing to the toilet and vomiting up to 30 times a day, suffered agonising pain and his weight dropped to 9 st. He went to A&E after reaching ‘breaking point’ and was kept in for more than a week. Tests revealed he had Crohn’s and he was put on steroids and other drugs known as biologics that help block inflammation.
While his career went from strength to strength, behind the scenes he was continuing to battle significant symptoms.
In 2010 he collapsed at home with a perforated bowel, a serious complication of Crohn’s. It swiftly caused septicaemia – blood poisoning – and doctors warned him that without emergency surgery he had only 20 minutes to live.
‘It felt like I’d been stabbed, and I just collapsed,’ Tom recalls. ‘I don’t remember much after that, and woke up in intensive care six hours later with a stoma.’
While Tom’s career went from strength to strength, behind the scenes he was continuing to battle significant symptoms
Tom is one of about 500,000 people in the UK living with either Crohn’s disease or ulcerative colitis, another form of IBD. Pictured giving a talk about Chrohn’s
Around 15 per cent of people need a stoma at some point in their lives. The opening in the intestines or bowel allows waste to exit, which means severely inflamed or damaged parts of the bowel can be removed. Some, like Tom, need it in an emergency, but others may be offered one to reduce the severity of their symptoms, or have one temporarily to give the body time to heal. In Tom’s case, doctors had performed an ileostomy – a stoma in the small intestine.
‘They saved my life,’ he says, ‘but I was in denial about what having a stoma meant. Having an ileostomy is a tough gig as it’s higher up in the digestive tract than a colostomy. The stool is more liquid at that stage, and you have to get up at night to change the bag.’
A year later, the ileostomy was reversed and he had colostomy surgery. He also began taking a new biologic drug, Humira, which also managed his symptoms better.
Grace Baird, a Crohn’s & Colitis UK IBD nurse specialist, says: ‘It is as close to a cure as we’ve got. People worry about how they’ll look and whether they can still go swimming, play sports and have intimate relationships. They can – and most adjust quicker than they expect.’
Tom, who has a new album, Perfect Strangers, coming out in September, plays football and performs 100 gigs a year, and is now an ambassador for charity Crohn’s & Colitis UK. He has overhauled his diet to avoid red meat and high-fibre foods (onion and garlic ‘are my Kryptonite’).
He says: ‘I’ve been in remission for two years and I’m in great health. There will be bumps in the road – Crohn’s is a lifelong condition – but I now feel much more prepared for them.’
- For more information, visit crohnsandcolitis.org.uk. World IBD Day is Monday, May 19.
