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9th March 2015

#GetYourBellyOut: Taking on inflammatory bowel disease one belly at a time

What happens when four passionate, fearless, determined, tech-savvy and more-than-a-little-bit-frustrated women, take on inflammatory bowel disease (IBD)? You end up with a breakthrough global campaign called #GetYourBellyOut!

The #GetYourBellyOut campaign is harnessing the power of social media to unite thousands of IBD sufferers, raise the bar on awareness and gain funding for research into a cure.

Ingenious in its simplicity ‒ all you do is upload a picture of your belly onto a social media site such as Facebook, Twitter or Instagram with the hashtag #GetYourBellyOut and donate to the cause ‒ the campaign is a viral sensation and has already raised about £25,000 for the charity Crohn’s and Colitis UK (CCUK) since its launch this time last year.

The women behind #GetYourBellyOut, Sahara Fleetwood-Beresford, Victoria Marie, Gem Willingham and Lorna Haymes, are all IBD sufferers from the UK who stumbled across each other online and agreed that there was a major need to break through the communication barriers associated with this often invisible and rarely discussed chronic auto-immune condition.

Indeed, IBD can be extremely complex and isolating, with patients experiencing a host of symptoms such as pain, fatigue, nausea, bloating, diarrhoea, anxiety and depression, as well as secondary side effects from medications. In both Crohn’s and Ulcerative Colitis, parts of the digestive system become swollen, inflamed and sore. This affects the body’s ability to digest food, absorb nutrients and eliminate waste in a healthy way.

Lorna has lived with IBD for well over a decade. “The thing I find the hardest to deal with is the frustration,” she says. “I never know how I’m going to feel from one day to the next. I can be relatively OK and then within the blink of an eye be in pain or become very tired. I struggle to plan days out, short breaks or even a trip out to a restaurant. Also, trying to find a medication that actually works with less invasive side effects can be hard and extremely frustrating. I find it very frustrating listening to people comparing IBD to IBS [irritable bowel syndrome] and the public’s perception and lack of knowledge about these very debilitating illnesses. This can also affect us in the workplace as it’s very difficult explaining to peers about the unpredictability of IBD.”

Sometimes the only option is surgery involving the removal of sections of the intestines. The result may be a life of reliance on tube feeding, or having an internal pouch or a permanent ileostomy, where the end of the small intestine is brought out through an opening (“stoma” or “ostomy”) in the abdominal wall and an external bag that can be emptied or changed is fitted onto the opening to collect the waste.

How the campaign began

The campaign was borne from a common passion to educate the public about Crohn’s Disease and Ulcerative Colitis. The starting point was when Sahara, who was diagnosed in 2007, posted a photograph of her belly on Twitter. She then connected via Facebook with Gem, who has known about her disease since 2005 and was fundraising for CCUK at the time. Victoria came across Sahara’s belly photo on Twitter and decided to take a leap of faith by adding her own belly shot to her social media accounts.

Later, Victoria suggested using a hashtag to unite everyone brave enough to upload a belly photo. Lorna completed the team when she contacted the others to offer her support during her recovery from ileostomy surgery. One of the most remarkable aspects of this grass roots campaign is that the four women have never all met in person or even spoken on the phone; everything has been arranged via Facebook.

What sets this campaign apart from all the others is the way in which people have felt united, supported and understood by likeminded individuals for the first time. The focus has very much been on creating a community where IBD sufferers can feel safe and empowered.

“This has been a magnificent year for IBD awareness,” says Victoria, who was diagnosed in 2009. “Our #GetYourBellyOut campaign has united thousands, giving these people a way in which to channel their energy. Gone is the embarrassment of living with Crohn’s Disease or Ulcerative Colitis and in its place is the charge to raise awareness, increase better understanding and encourage fundraising. We are keen to re-instil body confidence in these strong, proud, inspirational fighters. I believe awareness is key and that fundraising will follow on once people understand the devastation IBD can cause.”

“This has been a magnificent year for IBD awareness,”

The campaign has a Facebook support group and page that have brought together over 9,000 people. Thousands of belly photos have already been posted to various social media sites and from these photos the team was able to compile two informational videos. In addition to the money raised for CCUK, people are showing their support by purchasing the campaign’s merchandise items such as wrist bands, car stickers, a calendar and a range of bags, all of which are available on the #GetYourBellyOut website.

In Sahara’s view, the most positive aspect of the campaign “has been seeing people who were at first embarrassed, shy and ashamed of their disease come out of their shell. We’ve seen people who never in their wildest dreams imagined they would get their belly out actually doing it! We have witnessed people become open and no longer ashamed of their disease, baring all on their social media accounts and finally willing to talk about something they have hidden for so long.”

As for the future, the team is currently working with CCUK and has a few more projects in the pipeline. In addition, the women have arranged a charity ball to celebrate the campaign’s one-year anniversary this month. “The past year has been fantastic and, at times, emotional. We have got so many people connected; people are no longer ashamed to show their scars or talk about their battles with IBD. Who knows what the future will hold for us, but we never imagined the campaign would take off so well and would still be going so strong a year on,” says Gem.

You are free to share the text of this article under the Creative Commons Attribution-NoDerivs 3.0 Unported license

Header image: #Getyourbellyout

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