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

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

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

  1. It was a baptism by fire for you but you stood your ground very well. I have had experience of the press giving out misinformation and purely bad reporting when my son, who had IBD, was killed in a road accident. Don’t let yesterday’s experience put you off. You will be stronger because of it.

    • That’s awful. I am so sorry that you had that experience and about what happened to your son. Thank you for your lovely words. I am determined to keep raising awareness – no matter what.

  2. Your right it went to the top of peoples minds, but IBD went to their minds for all the WRONG reasons!!!! This is daft. No we didn’t raise good awareness, yes 200,000 saw that picture of Vicky, but how many hundreds of thousands read the news or saw it? I admit you stood your ground very well and you are brave for talking about your story, but I don’t see this as good publicity.

    • I understand your point completely – but at least in those few minutes on TV we got to tell the nation a little bit about IBD and the effects it has on sufferers. I understand the damage it caused, I really do. And I understand why everyone is angry and concerned. It deeply upset me after 13 years of agonising pain. But working in the media I slightly understand what happened – and I wanted to clarify that. I’m not saying that all news is good news, I’m just glad that we are all talking and sharing our stories.

  3. Once again what a wonderful post! We are lucky to have such great and strong advocates in the IBD community who are not afraid to say when we think someone is out of line. Well done again on all of your wonderful advocacy Xx

  4. Dear Mr Wright

    Thank you for contacting us about BBC News’ coverage of Crohn’s disease on 18 June 2014.

    We’ve received a wide range of feedback about our coverage of this story across our television and radio programmes, and the BBC News website. In order to use our TV Licence fee resources efficiently, this response aims to answer the key concerns, but we apologise in advance if it doesn’t address your specific points in the manner you would prefer.

    The mention of junk food played a part in a very detailed story about the rise in hospital admissions for Crohn’s disease amongst young people. Throughout ‘Newsbeat’s coverage the programme clearly stated that there was no single cause for Crohn’s and no single explanation for its apparent rise. ‘Newsbeat’ also discussed some of the other factors, including genetics and the immune system. During the programme’s full broadcasts at 1245 and 1745 we heard concerns from some listeners who got in touch to air their concerns about a potential link to junk food. The accompanying online piece was updated during the day to place even more emphasis on other potential causes.

    Newsbeat’s report also featured during BBC One’s ‘Breakfast’. We featured a range of views on Crohn’s disease across this edition, hearing from a representative from ‘Crohn’s and Colitis UK’ and from two young people who live with the disease. Overall, we believe the programme was fair and balanced in its reflection of Crohn’s and of the effects it has on those who have been diagnosed with the disease. With regard to the causes of Crohn’s, we accept that the wording of an introduction to one report, and the subsequent opinion given by a doctor during the report, may have given the unintended impression that diet was a definite contributing factor to contracting the disease.

    We hope this goes some way in addressing your concerns. We appreciate you taking the time to contact us and believe our coverage will have helped raise awareness of a condition which many people know little about, something which has been reflected in many of the comments our programmes have received.

    Kind Regards

    BBC Complaints

  5. Pingback: Dr Sally Mitton’s apology over Crohn’s and junk food – too late and hardly publicised | The big stoma bucket list

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