10 things you should know about living with a stoma

Musician Tom Speight has lived with a stoma for over a decade, after undergoing an emergency operation that saved his life. Here he unpacks some of the misconceptions to mark World Involunary Bowel Disease (IBD) Day

Musician Tom speight (Press)

Musician Tom Speight was diagnosed with the long-term bowel condition Crohn’s disease 15 years ago. After undergoing emergency surgery for the condition , he had a stoma connected to his digestive system. As today marks World Inflammatory Bowel Diseases Day (IDB), Speight has opened up about the realities of living with a stoma and debunks 10 common misconceptions about his condition.

A stoma is an opening on the abdomen that can be connected to either your digestive or urinary system to allow waste to be diverted out of your body. Stomas are sometimes used after surgery to remove cancers in your pelvic area or help treat inflammatory bowel diseases, such as Crohn’s disease or ulcerative colitis.

How does Crohn’s impact on your life and mental health?

Over the years, [there have been some] really difficult situations to deal with – I was hospitalised last year while I was making my album, and lying in hospital, not knowing if I was going to be well enough to finish what I’d been working so long and so hard for was really really demoralising.

For me, stress is a big trigger, so when you’re stressing about keeping up with everything and keeping on top of things it was actually making me worse.

There’s a ripple effect to this disease in that your limitations can affect how others [family and friends] live their life,” he said. “I’ve been having regular therapy since 2019 to help manage my stress and improve my mental health.

Working out how to manage the condition is unbelievably frustrating. Finding the right team of doctors, the right medication, and the right diet is such a draining process. For me, one of the hardest parts is knowing that despite everything you try, the trial and error process you go through can ultimately put you back in hospital if it’s not quite right. It can be a scary thought. The prospect of having a third operation or a sixth stay in hospital is always there, at the back of my mind.

Tom Speight has had Crohn’s disease for 15 years (Press)

Here are the 10 most common misconceptions about living with a stoma, according to Speight:

1. Swimming is fine

Often people believe that having a stoma means you can’t enjoy the same hobbies and activities that you did before you had the operation. Swimming comes to mind first: I think people presume you’ll have a leakage or accident, but in the 10 years I’ve had the stoma. I’ve never once had a problem. The stoma bag is waterproof and secure due to its adhesive. There’s no reason why a person with a stoma can’t swim with confidence.

2. What you can and cannot eat

When I first spoke to my stoma nurse, I asked about my dietary requirements and what to avoid... you’d be surprised about what’s on the forbidden list. Some people may be advised to avoid eating very fibrous foods, or foods with tough outer skins such as sweetcorn, popcorn, peas and potato skins, to avoid causing a blockage in the bowel. Often eating out can feel like a game of Russian roulette. I’ve had many episodes where I’ve been caught out and been absolutely floored in the process.

3. Being visible

I was 24 when I first had the emergency surgery to have a stoma. At the time, I thought having the operation would mean my career was over... you can’t be a pop star and have a bag, right? In reality, no one actually will know until you tell them. I’ve worn tight-fitting clothes while channelling my best Freddie Mercury moves and it’s never been a problem. I kind of wish I could tell my younger self that things will be ok and it’s not the end. In some ways, it was just the start, because it gave me a whole new lease of life.

4. ‘Only elderly people have stomas’

I originally thought only old people have stomas, and yes, the elderly are more likely to have a stoma, but surgery can be performed on anybody at any age. I’ve met a number of younger people through the charity Crohn’s & Colitis UK who are just like me, and it’s quite comforting to know you’re not alone.

5. Sex

Without being too graphic, this isn’t a problem. It’s all about finding the right partner who can make you feel safe and confident.

6. Smell

A lot of the misconceptions about having a stoma were things I initially thought too. I thought it would be unhygienic and, quite frankly, not smell so fresh. The reality is, you’ll only ever notice the smell when you go change it in the toilet. In some ways, it would be no different from anyone else using the loo

7. Is this permanent?

For some patients, a stoma is permanent. However, for many, an ostomy is performed to allow for the bowel to heal from scarring, inflammation and infection. I personally need to get to a level of health where a reversal could be performed, while also managing to take some time off to heal properly.

8. ‘You can’t exercise’

I think this misconception might be because people might think you’re vulnerable or weak due to the operation. Exercising regularly can have a really positive impact on people with a stoma, as it reduces the risk of a hernia and keeps your body fit. I’ve never felt stronger in my life.

9. Find the nearest toilet

I think people often think you’re walking around with poop all day... this isn’t the case! You just have to go to the toilet like everyone else.

10. The reality is...

Yes, it’s a life changing operation but with a few mindful changes you can lead a happy and healthy life. Just avoid the popcorn and drink plenty of water.