Tackling the stoma stigma: Mum and nurse share positive message of 'bag for life'

As a new task force is set up to highlight the role of specialist stoma nurses, Northern Ireland representative Mary Kane and patient Mairead McMullan tell Gail Bell it's time to shatter myths about sex, bikinis, pregnancy – and bags blowing up on a plane

Northern Ireland's principal stoma care specialist nurse Mary Kane, left, and Mairead McMullan (33), whose ulcerative colitis meant she required stoma surgery while in her 20s Picture: Margaret McLaughlin
Gail Bell

WHEN young Co Derry woman Mairead McMullan's ulcerative colitis deteriorated to the point that she needed stoma surgery and the dreaded 'bag' while still in her 20s, it is no exaggeration to say she thought her life was over.

Today, seven years later, the 33 year-old busy mother-of-two says the reverse proved true and the operation she had "fought hard against" actually gave her "a life back".

In fact, the Kilrea mum has recovered her life to the point she is happy to help Northern Ireland's principal stoma care specialist nurse, Mary Kane, promote a new, public-friendly image and positive message ahead of a stoma strategy to be launched this summer.

Mary, who is based at the Causeway Hospital in Coleraine, is one of 10 experts from Wales, Scotland, England and Northern Ireland, tasked with the challenge of raising the profile of specialist stoma care nurse across the UK at a time of increasing need.

"There were around 21,000 new stomas created across the UK last year, 1,054 of which were new patients in Northern Ireland, she says, "yet, because we are not good about talking about our bowels, specialist stoma nurses remain at the bottom of the pile.

"As a member of this new task force, which includes specialist stoma care nurses across the four countries of the UK, I want to raise the profile of stoma care and let people know that, despite many myths and half-truths, people with a stoma are able to lead full and active lives."

A stoma is an artificial opening in the abdomen, created surgically to allow the passage of faeces or urine from the body, with waste collected in a special bag. It may be required for a variety of reasons, including colorectal cancer, inflammatory bowel diseases and other acute or chronic bowel disorders.

"There are three types of stoma – colostomy, ileostomy and urostomy." Mary explains, "and surgery is carried out to remove bowel and bladder tumours, or for people with Crohn's disease and ulcerative colitis where medical treatments have failed. A stoma may also be needed following severe infection in the bowel, such as abscess or diverticulitis, or as a result of injury.

"It is undoubtedly a life-changing event and that is why our role is so important, particularly in terms of helping patients adjust to a new body image which can be difficult at first, especially for younger female patients who think they will never be able to wear a bikini again.

"Support and education at the time of diagnosis and throughout a patient's treatment journey is vital – and it doesn't end with a discharge from hospital."

Mairead is, happily, a textbook case of how life can not only go on following stoma surgery, but how it can elicit an even better quality of life than before.

"Before my surgery, I was on numerous types of medication and was feeling ill all the time, which meant I couldn't really plan anything that I wanted to do," she says. "The only thing keeping my flare-ups at bay were large doses of steroids, but you can't stay on those indefinitely.

"I was diagnosed with ulcerative colitis in 2008 and then, just two years later, the only option left was surgery. Almost immediately after the operation I felt great physically, but psychologically, the change really affected me.

"I also panicked that my ileostomy bag would leak and I was paranoid about people just knowing about it. Basically, I thought my life was over.

"Soon though, with the help of Mary, who was absolutely brilliant, my negative feelings disappeared and I also felt better physically than I ever had before the operation. I was thrilled to become pregnant and both pregnancies were straightforward. My bag is part of everyday life now – it is is just an extension of me.

"I used to think that these bags were something needed by older people, but they are a way of life for many people my age and I want people to know it's not the end of the world if you have one."

Initial despair and rollercoaster feelings are natural and a common reaction encountered by Mary, who brings 26 years' nursing experience to the task force and is one of only 28 stoma care nurses in the north – out of 600 across the UK.

"Some of the problems that can arise include skin irritation, bag leakage and stoma blockage, but the thing most people fear most is the bag blowing up on an airplane," she says. "It doesn't happen, but is one of the persisting myths, along with the general perception that you can't swim, you can't have sex and you can't get pregnant.

"These types of misconceptions – as well as the bag having a bad smell – are part of the image problem, while the true story is that the vast majority of people return to full and active lives.

"For many, their quality of life actually improves following surgery, especially the patients with ulcerative colitis and Crohn's disease."

In terms of helping stoma patients travel without fear or embarrassment, Mary says they are now encouraged to carry a special identification card, "so they don't have to say the word, 'stoma' out loud".

"It is one simple measure which is helping, especially at airports where staff are being trained in different approaches to luggage and body searches, for example," she says. "Stoma patients don't have to go through a body scanner, for instance, and are taken privately for a security search if necessary."

It is a positive message which she believes we all need to take on board in order to counteract the perceived stigma which can adversely affect social confidence and lead to anxiety and depression.

"Stoma patients have a real fear of others reacting negatively, and, as a nation, we are still not very good about talking about it," Mary adds.

"It is also a subject that is not often dealt with in the media, although that is changing with a few high profile people openly recently discussing their stoma and some young women taking 'selfies' in bikinis.

"The new strategy aims to raise the profile of the work undertaken by all stoma care nurse specialists, as studies have shown they deliver cost efficiency savings and better patient outcomes.

"It is a challenging role, but job satisfaction comes from knowing that we do make a difference. Marie Curie nurses have a lovely yellow daffodil so we thought it was time we raised our profile and had an identifiable symbol of our own.

"I love seeing my patients of all ages, from teenagers doing their A-levels to senior citizens in their 70s and 80s, adapt and get on with living life to the full. When I hear that someone has become engaged or become pregnant, like Mairead, that is always my best day."

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