Crohn’s and ileostomy go viral after unfounded junk food claims – your amazing reaction to BBC appearance

Yesterday I appeared on BBC Breakfast to talk about the rising number of young people being admitted to hospital with Crohn’s Disease. I was on the famous red sofa for less

On the BBC Breakfast sofa

than five minutes (not enough time to tell a story of 13 years of IBD drama and life with my stoma), but when I came out of the studio it was obvious that in the short space of time a bomb had gone off in the IBD world.

And, unfortunately it wasn’t because of my bright red shoes!

Within seconds of saying goodbye to Louise and Bill I was inundated with texts, tweets and facebook messages. Me and the CEO of Crohn’s and Colitis UK David Barker stood in the green room staring at our phones as the messages flooded in from all over the country. Almost everyone was congratulating us on standing our ground, raising awareness for sufferers and talking about the illness in a “un-glossed” light. And my mum, sister, boss and boyfriend were extremely proud. But every single second my phone was buzzing with outrage over the junk food comments aired during the programme; which unfortunately myself and David were unprepared for as we sat down to face around 1.5M viewers on national TV.

The moment I was asked the junk food question I was absolutely infuriated – and, from the response thousands of other people were to.

As a journalist I’m used to being on the other side of the notebook/microphone, so being interviewed was a strange experience. I had no idea what they were going to ask me; so I suppose you could say I got a taste of my own medicine. But working in the media, I also know how the news works. Media outlets saw the new quote from Dr Sally Mitton’s interview on the Newsbeat segment and leapt on them. It was controversial and, “well news” (it was a new angle to the Crohn’s story) so the media ran with it.

But this time it wasn’t me writing the news. I was at the centre of it: me and tens of thousands of other sufferers. We were reading stories about ourselves – and they were unfounded. Either through editing in the studio or Dr Mitton simply coming out with what she believed was a true, but damning and unfounded comment about junk food and Crohn’s; she told the world that sufferers were to blame for a lifetime of pain, ulceration and hospitalization. Which is out-of-order and, in my opinion, totally untrue.

To think that those with IBD cause their condition by eating burgers doesn’t ring true with me – you only have to say SIR STEVE REDGRAVE and that theory is halted entirely! 

Me and CEO of Crohn’s and Colitis UK David Barker

By the time I got back to the office twitter had exploded; the story had gone viral. I was scrolling through thousands of tweets about what had been said. Thousands and thousands of people were upset and angered by it. Rightly so – they have been fighting against these misconceptions for their entire lives!

I had to respond in more depth and try to quash the misinformation. It wasn’t enough but I hope it made a difference – in the end this story went viral and was one of the most read stories the Chester Chronicle has had on their website. Crohn’s and Colitis UK posted it on their facebook page and the comments were through the roof – it was incredible and I actually became very emotional while reading your stories; a lot of which were just like (or even more painful) than mine.

It was such a shame. Crohn’s and Ulcerative Colitis get very little air time. I know it has grown recently; with celebs like Towie’s Sam discussing her condition in the national press, but it is still not talked about as much as cancer, diabetes and many many others. We had gone on the show to talk about Crohn’s and the effect it has on young people trying to get through childhood, school, university and their first jobs while managing an all-consuming, exhausting and debilitating illness. We also wanted to talk about the amazing work on fatigue Crohn’s and Colitis UK has done.

Despite the anger, the public’s reaction to me talking about my battle with Crohn’s/Colitis and telling the world about my ostomy bag, was astonishing. I have been blown away by the thousands of tweets of thanks and support you have all sent me. I have been humbled by your stories, which you have shared with me and I have been astonished by how publicly people have talked about their condition – which I was once to embarrassed to even admit myself.

It didn’t end up being a bad day for Crohn’s and Colitis or those with stomas. In the end the controversial comment sent IBD spiralling to the top of the nation’s minds. Crohn’s was trending on twitter; advocates were posting informative blogs; people were sharing their experiences; and national organisations sent clarification statements to the national press to halt the misinformation quotes. I know that celebrity Carrie Grant sent a letter to the doctor in question advising her to get media training, and hundreds if not thousands complained to the BBC.

But more importantly it got people talking about IBD. And, in my favourite awareness raising moment of the day, a young woman called Vicky posted a picture of herself sunbathing with her ostomy bag on show – she looked incredible. The picture went viral, with people sending it to their friends, followers and family members. It was an incredible moment and a brave and positive move, which I hope has broken some taboos. The picture had generated over 200,000 likes last time I looked.

And if you want to know; despite everything that happened I really enjoyed being on the BBC. Yes, it was tough, scary and nerve-wracking. I only found out the night before and had to get up at 5.30am! But the crew were lovely and seemed genuinely interested in me and my condition. The toilets were not the best! But Louise, Bill and the whole crew really did everything they could to put us at ease. And it was a pleasure to meet David – who appears to be a great spokesperson for Crohn’s and Colitis UK.

I did almost break my neck in those shoes though – and then where would we be!!!

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