Have A Stoma And Live

Back in April, the BBC screened an episode of Holby City about Crohn’s disease. The storyline followed a sufferer who had reached the point where the disease was no longer manageable with drugs alone and so they were facing the prospect of stoma surgery. In addition to Crohn’s, stoma surgery is used to treat many other illnesses, including cancer, colitis and diverticulitis. It is also sometimes necessary following trauma to the abdomen. The surgery involves diverting the bowel and/or bladder through an opening formed in the abdomen (called a stoma) so that bodily waste can be collected in a bag. People who have had this surgery are often referred to as ostomates. The surgery is more common than you might think. It is estimated that there are as many as 120,000 ostomates in the UK.

I blogged about this episode, because I was concerned about the possible impact it might have on ‘real’ people who had recently undergone the surgery or were preparing to have it. I also thought it had the potential to worry the friends and families of such people. In my view, Holby’s portrayal was overly negative. If you look at the comments my blog received you’ll see that, while not everyone agreed with me, there were plenty that did. The 2,400 odd ‘likes’ it received also seems to indicate that ‘my take’ struck a chord with many others. At Colostomy UK we saw views similar to mine expressed across our social media platforms. Indeed, it was partly because of this that I wrote the blog. As a charity that supports ostomates we consider it our role to be their advocates and voice on bigger issues.

Last week, the Health section of BBC News published an article about a lady called Natalie. Just before her 32nd birthday, Natalie was diagnosed with late-stage bowel and rectal cancer. Stoma surgery was required as part of her treatment, with what is known as a ileostomy being formed. The article briefly charts Natalie’s journey, but its focus is more on the challenges she has faced as an ostomate. This has included, amongst other things, problems with dating men and encountering hostility from the general public when she has used accessible toilets.

The issues that Natalie has faced will be familiar to many ostomates. In a recent lifestyle survey that we conducted at Colostomy UK around 30% of respondents reported having been challenged when using accessible toilets. At the heart of the problem is general ignorance, which isn’t helped by the fact that the condition is ‘hidden’ or ‘invisible’. But, by all accounts, Natalie has had it far worse than most ostomates. It is for this reason, that I find myself again in the position of having to set the record straight following a piece by the BBC. Something the article doesn’t adequately get across, is that stoma surgery not only saves lives, it improves them too. Ostomates have children, they run marathons, they play football. Ostomates work 9 to 5 and more. They travel the world and never encounter a single problem. Unfortunately, you would never know this from the BBC’s most recent offering. Its very title ‘Have a stoma and live or don’t and die’ gives important clues about the ‘angle’ being taken. So, as I said before in my Holby City blog, more care needs to be taken when writing about such subjects. No one disputes the fact that stoma surgery is life changing and that life as an ostomate can be challenging. But that’s only one side of the story. Why, one might ask, did the BBC choose to focus on the negative? Well, the cynic in me says that stories about people’s woes and misfortunes makes more compelling reading and attracts greater attention than something a little less sensational but more balanced.