The first time someone suggested that Alex Lyons was lucky to already be in a relationship before she had to get a stoma bag (are people for real?), she hadn’t even considered that it might make her “less attractive”.
She was 24, recovering from emergency surgery that had saved her life. She had a lot to get her head around. Whether people would still find her hot wasn’t one of them.
But then people started making comments. And slowly, something she had never worried about became something she couldn’t stop thinking about.
“It had never crossed my mind that it might make me less attractive,” Alex tells me over the phone. “It never crossed my mind that that would be a barrier in a relationship until someone said it to me.”
Nice one, whoever you are.
Life with a stoma bag
I came across Alex while doomscrolling on TikTok, and one of her videos immediately stopped me in my tracks. She posts about life with a stoma bag in the North of Ireland, and I couldn’t get over how normal she made it all seem.
She decorates her bag (which she adorably named Bagatha), matches it to her outfits and wears clothes she says she would never have felt comfortable wearing before her surgery.
And while getting a stoma at 24 was a huge adjustment, Alex doesn’t talk about it with the sadness or embarrassment people might expect. She talks about it with humour, honesty and a level of perspective that I think a lot of us could learn from.
Hours or days to live…
Her journey with a stoma actually began long before she needed one herself. Alex has a twin brother who became seriously ill around a year and a half before her. He also needed emergency surgery and was given hours to live.
“He survived – all thanks to the stoma,” she says.
Watching her brother go through the experience meant Alex already understood what a stoma was and what it could do. When she eventually needed one herself, her perspective was different to what she imagines it might have been otherwise.
“When you’re told that you only have hours or days to live and you get the surgery, your mindset is so different. You’re so grateful. You’re like, ‘This saved my life. This is amazing.’”
And then came the comments
Alex spent months in hospital, and once she was able to, she started talking about her experience online.
She says she knew almost straight away that she wanted to share it. Having watched her brother live with a stoma, she knew how much fear and uncertainty could surround something that was, ultimately, keeping someone alive.
But while she was grateful for the surgery, it didn’t mean adjusting to life afterwards was easy.
She was still learning how to manage her stoma around work, socialising and the everyday logistics most of us never have to think about. There was a physical adjustment, even if the mental one felt less overwhelming.
And then there were the comments.
Ignorance isn’t bliss
Alex had a boyfriend when she had the life-saving surgery, and the comments she faced from several people heavily implied that finding a partner after getting her stoma would have been far more difficult.
I tell her how outrageous I think that is, particularly when she had never even considered it a problem until other people made it one.
“It was almost like other people were creating these insecurities,” she says.
“It definitely got to me, because I was like, ‘Hold on, what do you mean by that? Do you look at me differently now?’”
She says she started taking those comments out on her partner, becoming snappy and questioning whether he still found her pretty. Looking back, she can see that the insecurity wasn’t something she had necessarily felt about herself. It was something other people had planted there.
Express yourself
But what I find most interesting about Alex is that, despite those moments, she seems to have come out of the experience with a stronger sense of herself.
Before her surgery, she says, you would never have caught her in low-waisted jeans. She didn’t like showing her stomach. Now, she loves coordinating her clothes with her stoma bag.
“I love low-waisted jeans because I get to match my jeans to the stoma bag,” she says. “I just feel like everything’s more coordinated.”
She even decorates the bag, turning something that could easily make her feel self-conscious into another part of how she expresses herself.
Snap out of it
“Obviously there’s days where I look in the mirror and I’m like, ‘Oh, I wish this didn’t happen.’ But you snap out of it so much quicker.”
Then she tells me about a Snapchat memory that appeared while she was in hospital. It was a photograph of herself in a bikini, taken three years earlier. At the time, she had written that she hated how her stomach looked.
Reading those words while recovering from surgery changed something for her.
“I will never be able to look at my stomach without a bag anymore,” she says. “And the fact that, back then, that was such a big deal to me felt so ridiculous.”
It’s the kind of thing that makes you stop and think about all the time we spend worrying about how we look, and all the things we convince ourselves we can’t do until we feel better about our bodies.
“What a waste of a life to stop yourself from doing things just because you don’t like how you look,” she says.
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A win is a win
When it comes to dating, she has a particularly important message for anyone who worries that their stoma, disability or body might make them less desirable.
“If somebody reacts negatively to your stoma, your disability, whatever else it is, I would take that as an absolute win,” she says.
“At least you know that that is not a person that you want or need to associate with.”
She wants people to understand that the right partner is someone you can rely on, not just someone who accepts you when life is easy.
It’s a lovely way of looking at it. And while I wish it were true that nobody would ever make an insensitive comment, Alex is realistic enough to know that isn’t always going to happen.
What matters is learning not to let other people decide how you feel about yourself.
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