Living with a stoma is not always easy. Natalie Toper from London spoke to the BBC about her reaction when she found out she would need an ileostomy. She also told us how hard she found it to come to terms with life as an ostomate.
An ileostomy is an operation involving the small intestine being diverted through an opening – or stoma – in the abdomen. A bag is then placed over the stoma to collect liquid and waste. The procedure can either be temporary or permanent.
Her story prompted other osomates to get in touch and share their experiences.
‘Fear of being caught short’
Jackie is 52 and from Thatcham in Berkshire. When she was in her teens she was diagnosed with Crohn’s disease.
She felt that the constant fear of needing to go to the toilet in a hurry put many restrictions on her life. Public transport was a problem and Jackie also dreaded queues and traffic jams.
“My poor boyfriend (now husband) felt his life was being wasted waiting outside ladies loos!”
It was after Jackie had her first baby at the age of 30, that she felt it was time to take action.
“Something had to be done otherwise I wasn’t going to be able to take my baby son anywhere on my own for fear of being caught short.”
She discussed options with her doctor and decided she should have an ileostomy.
In the 22 years since that operation, Jackie feels that her life has changed for the better.
Jackie is able to manage her condition by carrying her kit in a spare bag that looks like an ordinary cosmetic bag.
The fear of getting “caught short” has been replaced by new opportunities.
Jackie has been able to travel with her husband and two children and now enjoys roller skating and swimming. “I wear high-waisted bikini bottoms under my swimming costume,” she says.
Most importantly, Jackie doesn’t feel that having a stoma is a disability. It’s part of her life and in her words “it’s a great one”.
‘I can empathise with people’
From a young age, Michelle Willcocks, now 31, always enjoyed sport, especially track and swimming.
Like Jackie she endured years of pain and discomfort – in Michelle’s case this was because of an ulcerative colitis, a condition where the colon and rectum become inflamed.
Michelle, from Ravenshead in Northamptonshire, believes having a stoma fitted in 2011 was one of the best things that has happened to her.
It didn’t stop her competitive edge and she has since become a world triathlon champion.
Michelle admits that she was fortunate to receive good support from her stoma nurses, with whom she is still in touch.
Being proactive and reaching out to support groups has also helped her cope.
She contacted the Ileostomy and Internal Pouch Support Group, which enabled her to link up with people in a similar position so she doesn’t feel isolated.
Her relationship with her boyfriend at the time didn’t last. “He had been very supportive throughout my illness. But probably due to the freedom the stoma gave me to be more active, we grew apart,” she says.
“I realised we wanted different things in life.”
Three years after surgery, Michelle met her current partner Chris at a running club.
Chris found out about Michelle’s stoma through her openness about it on social media and then did his own research.
Michelle was initially nervous about meeting someone new, but says Chris has helped her to feel confident in her body.
“Life as an ostomate means I can empathise with people who also have to learn to cope with life-changing conditions,” adds Michelle, who says that is a useful skill for her job as an NHS dietitian, where she works with people who have been diagnosed with diabetes.
As for carrying around spare kit in her bag… she just describes herself as a “Barbie doll with accessories”.
‘I live a completely normal life’
Three years ago, whilst studying civil engineering in Glasgow, Iain was diagnosed with ulcerative colitis.
Despite being treated with steroids, Iain, now 25, experienced constant discomfort and it was decided that an ileostomy was the best option.
It was a life-changing period in many ways. Iain had to leave his studies and return to his family home in the Isle of Lewis following the operation in Glasgow.
He readily admits that having major surgery and getting used to wearing a stoma was “daunting”.
However, having a mother as a nurse as well as recovering in a close-knit Highlands and Islands community was a great boost.
Regular visits from a stoma nurse as well as his faith helped with the healing process.
Iain now lives in Edinburgh where he is training to be a minister.
Like Jackie and Michelle, he feels that the key is a positive attitude and the ability to adapt.
Wearing a stoma doesn’t stop him playing sports such as football and swimming.
As Iain says: “I live a completely normal life and am not inhibited. Also as a Christian I have my faith in God.”