It is estimated that over 13,500 people in the UK undergo stoma surgery every year, but despite this, it’s not something that is talked about much in general conversation - and many of us aren’t even sure what a stoma is.
A stoma is an opening on the front of the abdomen which is created during surgery to allow faeces or urine to exit the body via the stoma and be collected in a bag on the outside of the body.
The most common conditions that might require someone to undergo stoma surgery and thus need a stoma bag are bowel cancer, Crohn’s disease, ulcerative colitis, anal cancer, cervical cancer, diverticulitis and bladder cancer.
There are two types of surgery that might require the patient to have a stoma bag: colostomy and ileostomy. A colostomy is an opening of the large bowel onto the surface of the stomach, whereas an ileostomy is an opening of the small bowel. Both operations can be either temporary or permanent.
Whilst both men and women can have stomas, an increasing number of women in particular are fighting to raise awareness about life with a stoma bag in a bid to normalise it.
Meet some of the women sharing their stories and speaking out:
Harriet Williams, 26, was diagnosed with severe ulcerative colitis (a form of inflammatory bowel disease) when she was 14, and after many years of failed treatment, she had her intestine removed when she was 22 in 2014. She’s now had her stoma for four years, which she says provided “an end to the constant cycles of drugs, tests and hospital stays.”
“I no longer have any symptoms of ulcerative colitis and I found products that worked for me quite quickly,” Williams, who lives in north-west London, tells The Independent. “I had the option to reverse my stoma, but I made it permanent earlier this year. Partially by choice and partially medically, but I'm very happy with my decision.”
Regaining her confidence after the operation took some time for Williams, and three years after the surgery, she decided to start an Instagram account in a bid to “bring some positivity to the ostomy community online.”
“Never in a million years would I have had the confidence to do that pre-surgery or immediately post-surgery, but it’s been very rewarding to show new and old ostomates that life can be fantastic and pretty much ‘normal’ post surgery.”
She believes the problem is that most people don’t know anyone with a stoma bag and believe they’re “smelly, ugly and unhygienic.” But through raising awareness and being more open-minded, Williams hopes the stigma will be broken down.
“It takes a lot of bravery and confidence for people to speak out about their experiences, to show their stomachs or open up about personal issues,” Williams continues. “I’m very proud to be part of a community trying to break the stigma of stomas.”
Vlogger Hannah Witton has ulcerative colitis and has won hundreds of fans for how open she is about the realities of living with a stoma bag.
Diagnosed at the age of seven, Witton had an ileostomy at the beginning of 2018 and has had a stoma bag since. She now regularly educates and updates her followers about what having a stoma is like and has won praise for her openness.
In a vlog in April, Witton revealed she changes her stoma bag every two days, but other people do so more or less often.
The 26-year-old frequently talks about sex, and needless to say, many of her followers are curious about whether having a stoma bag causes extra difficulties in the bedroom. “In theory, having a stoma makes no difference,” Witton said. “The only thing that would be weird is that the top half of the bag is stuck to my tummy but the bottom half is flappy.”
But, she explained, there are bands you can get to hold the bag down or ways to fold it up to make it smaller.
Gaylyn Henderson, a model from Atlanta with Crohn’s, has had a stoma bag for 10 years. Most recently, the 33-year-old modelled for lingerie brand Aerie.
She resisted getting a stoma bag for years because she wanted to be “normal”, but ultimately realised she was “clinging to the very thing that was killing [her].”
“But it came a time that I had no choice, and it was the best thing that has happened to me. There is absolutely no way I would want to go back other than to do it sooner,” Henderson told Metro.
She now has a blog about life with a stoma bag called Gutless and Glamorous which aims to help break down the stigma.
“I didn’t want others to suffer unnecessarily as I did because of the negative stigma surrounding having and living with an ostomy,” she said. “There is little to no positive awareness or programs specifically targeted at increasing self-worth as it relates to living with an ostomy.”
And she hopes the Aerie campaign will help raise awareness further: “Do not let somebody else’s view of what beautiful is dictate how you view or feel about yourself.”
Jade Hughes, a sales assistant from Devon, had an ileostomy in May 2016 and regularly posts pictures showing off her stoma bag on Instagram.
“I want to glamourise it,” Hughes told The Sun. “I want it to stand out when I’m in my undies, I want it to look perfect and proud, not hidden in some granny pants.
“Society thinks it’s best to keep it tucked away nicely but who cares what everyone else wants us to think about it? It’s bloody lovely and it’s kept me alive when if I hadn’t had it I’d be dead.”
Hughes is particularly anti the idea of clothing and products specifically designed to help people hide their stomas. Instead, she thinks they should be celebrated.
In February of this year, Hughes revealed on Instagram that she’d decided to keep her ileostomy forever: “I’ve overcome a lot, but this time I’m backing down, my ileostomy is my saviour and I am endlessly grateful for the second chance I’ve been given with it.”
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