Are ostomates really just people with bags?

At a time when media accountability appears less important than getting the most "likes" and the fastest clicks, it’s not too surprising that major details are missing and facts aren’t always double-checked. With a lack of knowledge and understanding about ostomies already out there, these errors (even the small ones) have a big impact on awareness.

So, while we truly appreciate the coverage, it seems a little more effort could be put into getting the story right. Of course, most reporters aren’t medical specialists and I understand that. In fact, sometimes even the professionals get it wrong. That’s why I thought it would be important to point out what the media is getting wrong about ostomies.

No. Just no, Daily Mail.

Let's say you’ve had ileostomy surgery. You're changing your appliance when suddenly you're shocked to see that part of your bowel is now sticking out of your stomach! Hmmm? Well, according to the Daily Mail that’s what happened to a champion weightlifter in the UK.

Senior Health Reporter, Sam Blanchard wrote:

"In May 2017, when changing the ileostomy bag he hated, he noticed part of his bowel sticking out of his body through the hole in his abdomen.

He had surgery to repair his small intestine and get rid of the bag, and began his journey to becoming a champion bodybuilder."

That’s really all there is to say about it because it’s hard to tell what they even mean. They just got it way wrong.

7-hour surgery to remove a colostomy bag?

Can you image the adhesive on that wafer? Changing your pouching system would be a part-time job. But according to a Brazilian media outlet, that’s how long it took to remove President Bolsonaro’s colostomy bag. Of course, they really mean he had reversal surgery. The article was also translated. Obviously, ostomates do not “remove a colostomy bag” unless they’re changing the appliance. Reporting the news in this context shows a lack of understanding of what it’s actually like to live with a colostomy on a day-to-day basis.

Viral news makes us believe what’s written is true.

New York Post published an article in January titled, 10-year-old boy bullied over colostomy bag kills himself: cops. It went viral. This powerful news story resulted from a tragedy that resonated deeply within the ostomy community. While it eventually came out that Seven Bridges did not have a colostomy at the time of his suicide, the false headline still made people around the world take notice at the role bullying plays in society and the difficulties children with ostomies can face.

Please define: “The site continued to leak waste.”

Again, the overwhelming support for Seven Bridges has been remarkable. But at the same time, it shows how little research is actually being done when reporting medical conditions. So, when The Mighty wrote a story about Seven saying, "the site continued to leak waste,” it was confusing. Especially without mentioning the fact it was fecal incontinence. To someone who has an ostomy or knows anything about them, the term “site” almost always refers to the stoma site. Readers probably interpreted it as his ostomy pouch leaking which is misleading since he didn't have a colostomy at the time.

It's not uncommon for journalists to report the news by grabbing bits and pieces from other media sources. The objective is to pass around the message without it becoming erroneous. But it does, in fact, become inaccurate. 

Annie does not have a colostomy; she has an ileostomy.

It’s awesome that The Sun featured Annie Jenkins and gave her the opportunity to say what many living with an ostomy already know: "Us ostomates are not aliens, we are not bully-victims, we do not smell, we are no different to anyone else.” However, in the headline and throughout the article they refer to Annie’s colostomy bag and even display a large chart: “What is a Colostomy?” 

When in fact, Annie has an ileostomy. This might seem like a small detail to many, but it shows a lack of knowledge and accuracy. "We need to raise awareness but most of all EDUCATE." Annie, I second this wholeheartedly! With over 25 million website visitors each month, Britain’s most popular online news source should be doing its homework. There's a difference between an ileostomy and a colostomy.

Only listing cancer and IBD as reasons for an ostomy is wrong. 

Some ostomates experience discomfort as a result of wearing a pouch, so anything that can help is a good thing. That’s what Trio Healthcare has done with its silicone technology which they say helps to reduce “leakages” while being comfortable to wear. For their efforts, they were given the Queen’s Award for Enterprise. We’re thrilled that improving the day-to-day comfort of ostomates was recognized in an article on Craven Herald & Pioneer

However, the article lists only cancer and inflammatory bowel disease (IBD) as reasons people have an ostomy. This is false and ignores other conditions that can lead to surgery. The article also uses “leakage” and “bag leakage” interchangeably. To an ostomate, “leakage” can mean many things and can be from more than one place. So, not a huge deal about leakage but only listing cancer and IBD as the reasons for getting an ostomy is simply not true. 

Ostomy Disease? I don't think so.

Dear Bloom Articles, there is no such thing as “ostomy disease." That’d be like calling a broken arm, “cast disease." The remaining content in an article titled, "12 Surprising Complications of Ostomy Disease" seemed to be fine, but starting out a headline with “ostomy disease” ruined all credibility. 

Thankfully, this piece has since been removed from the site. Still, it was shared A LOT. It's up to us to stop promoting content with incorrect facts. Because every time you post false info on social media, even if you think it's helping awareness, you're contributing to the misconceptions about ostomies.

Was it an ileostomy or colostomy? It's vague.

Ostomies save lives. They can transform unthinkable circumstances into stories of hope and healing. That’s exactly what happened with baby Oisin. After becoming seriously ill at just 10 days old, doctors determined he needed life-saving surgery. He's now a “hungry, happy” baby at home with his tremendously relieved and grateful parents. 

Yet, the article leaves readers confused as to which type of ostomy saved young Oisin’s life. Journalist, Ailbhe Jordan wrote that his emergency ileostomy surgery resulted in a colostomy bag. Then, he had a second surgery to “remove his ileostomy and colostomy bag.” It’s an incredible story, but the reporting highlights a lack of knowledge about ostomies. Not a single person at a news publication with nine million monthly readers caught that? Whoops, Dublin Live.

HELP THE MEDIA GET IT RIGHT

There’s no point in finding errors unless we do something to help, right? So what can we do? If you find yourself irritated because someone is not getting it right, reach out (like we do) and let journalists know you care about how ostomies are portrayed in the media. After all, nobody knows what it’s really like to live with an ostomy until you have one. Sometimes, we have to be our own advocates — and there’s nothing wrong with that.