Stephie Simpson describes herself as ‘lewd, crewd, tattooed and prepared to ‘take the taboo out of poo’. She talks to Ruth Addicott about the stoma that changed her life

PUNK rock mum-of-two Stephie Simpson is on a mission to ‘take the taboo out of poo’ and she doesn’t care who knows it. After years of battling ulcerative colitis, the 30-year-old from Great Ayton, has a permanent stoma and is raising awareness to show that young people with a stoma can still lead a normal life.

Writing openly about her experience on her blog (colitistoostomy.com) and appearing as a co host on the The IBD and Ostomy Support Show which is uploaded on You Tube every week, Stephie has built up thousands of followers.

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She started her blog in April 2016 as a diary for herself, family and friends, but after receiving messages from other people with the condition saying they found it helpful, she decided to carry on. “Writing those posts is really cathartic and helps me point out that I am normal and not some freak,” she says.

One of the major issues for Stephie was that she was told she probably couldn’t have children. Now a mum of two, being pregnant and parenting with a stoma are two of her biggest talking points.

Around 146,000 people have ulcerative colitis in the UK and an estimated 13,000 people undergo stoma surgery every year. Stephie first developed symptoms when she was ten and began to suffer stomach cramps and constipation. Her parents took her to the GP who said she was probably ‘faking it’ to get out of school. “I loved school,” she says.

By the age of 12, tests showed she had inflammation and ulcers in her large bowel and she was diagnosed with ulcerative colitis. Ulcerative colitis can develop at any time, but is mostly diagnosed between 15 and 25. Stephie was the youngest person in Northallerton to be diagnosed at the time, and at the age of 21, she had surgery to remove her large bowel.

“When I woke up, I was in agony, even though I was on a morphine drip,” she says. “The surgeon said I probably didn’t need a stoma and made the jpouch without one. In hindsight, if I’d had a temporary stoma, it might have healed quicker.”

Unfortunately for Stephie, things got worse. She was discharged after a week with e-coli and her scar split open twice due to infection. She went back to work after four weeks as a carer for elderly people, but continued to suffer from stomach pains and frequent toilet trips. “I just thought that was what my life was going to be like,” she says.

Two years later, she met her husband, Steven, and although she’d been told after her first operation that it was unlikely she would be able to have children, at 26, she fell pregnant and had a little girl, Lyra-Beth.

As the years went on, her symptoms worsened and when she was 28, the ulcerative colitis spread to her pouch and she was diagnosed with pouchitis.

“I’d had a lot of pain with the colitis in my large bowel, but it wasn’t nearly as bad as this, it was unbelievable,” she says. “My pouch was incredibly inflamed. The lining was swollen by an inch and full of pus. I didn’t want to be on antibiotics the rest of my life. I needed it gone… but I had to fight to get it removed.”

Although Stephie was in chronic pain on a daily basis, she had to wait six months for the operation. “I contemplated killing myself at one point because it was so bad. It was constant,” she says. “I’d sit on the floor at home rocking until my husband walked through the door so I could take my morphine because I refused to take it when I was on my own with my daughter in case something happened. In March 2016, it got so bad, I contemplated drinking a whole bottle of morphine. I have no idea what stopped me. I ended up admitting myself into hospital.”

In April 2016, Stephie had a permanent ileostomy in which her ileum (the end of the small intestine) was redirected through an opening in her abdomen, otherwise known as a stoma.

“I was in surgery six hours and when I woke up the pain had gone,” she says. “I felt so much better. I have never felt as healthy as I have since my ileostomy. It has been life-changing.”

She was home within five days. Apart from side effects such as dehydration, fatigue and swollen joints, Stephie leads a full, happy, normal life. She works full-time as a support worker for autistic adults, she loves running and in July, she had a baby boy, Jacob.

Like many people living with the condition, she has battled mental health issues and suffered anxiety and low self-esteem. At one point, she was afraid to leave the house. Writing and talking about her experience has not only helped Stephie, but many other people with the condition too.

“Can I still pass gas is one of the biggest things I get asked,” she laughs. “The answer is yes - it escapes in the bag, but it’s not nearly as satisfying! People seem to think your life stops when you have a stoma, but you can still go to the beach and go swimming and do all kinds of things.”

To prove a point, Stephie posed in lingerie for a calendar to raise money for Purple Wings, a charity which helps sufferers of IBD with ostomies. The key thing for Stephie has been having a support network online, as well as from her fellow co presenters.

“The show is a big part of my life now,” she says. “We call ourselves the Loose Women of IBD and Ostomy. Poo shouldn’t be taboo. Everyone poos in one way or another and people need to stop being scared to talk about it. Bleeding from your backside is not pleasant in the slightest, it’s embarrassing, but people shouldn’t feel ashamed and the more people feel that they can talk about it, the more chance there is of getting treatment or going into remission. No one should feel ashamed of having a stoma. It saves your life.”

  • Find out more about Stephie at colitistoostomy.com and facebook.com/theibdandostomyshow
  • Stephie also helps run the local Hambleton and Richmondshire Ostomy support Group which can be found at facebook.com/HandRostomysupportgroup

WHAT IS A STOMA?

A stoma is an opening on the surface of the abdomen which has been surgically created to divert the flow of faeces or urine. People who have had stoma surgery – sometimes known as ‘ostomates’ or ‘ostomists’ – are more common than people might think. It is estimated that around 13,000 people undergo stoma surgery each year, with almost 1 in every 500 people in the UK currently living with a stoma.

Individuals of all ages can have a stoma. There are many reasons for surgery, including, Cancer, Ulcerative Colitis, Crohn’s (often referred to as Inflammatory Bowel Disease), diverticular disease or trauma. Children as young as just one day old can sometimes have stoma surgery as a result of being born with a birth defect.