Sunday, 6 April 2014

#GetYourBellyOut for Crohns and Colitis

If you were a reader of this blog last summer, you will know that I was hospitalised with e.coli which has left me with ongoing gut problems for which I have had a lot of tests. Ulcerative Colitis and Crohns Disease were two of the problems I was tested for. I've recently had the results, and been told that I am recovering from acute colitis, so I know that I'm one of the lucky ones who will eventually be completely well, but if it wasn't for the research being done into these conditions I'd probably not have been able to have the tests that have given me the almost-all-clear so although this post is nothing to do with comping or social media, I hope you will read it and consider supporting the cause. I'll hand over to the press release to tell you all about it:



SUFFERERS BUILD NATIONAL CAMPAIGN THROUGH SOCIAL MEDIA TO RAISE AWARENESS OF CROHNS AND COLITIS

#GETYOURBELLYOUT

Unless you’ve been living in a cave for the past month, you will have seen the widespread cancer campaign #NoMakeupSelfie which has been covered online, in press and on your TV.  Women have been ‘sharing’ their natural skin selfies, in a bid to raise awareness for Cancer.

 The amazing NoMakeUpSelfie campaign raised funds and awareness for Cancer sufferers and their families, it was admirable.   Following in their footsteps, a small team decided to do the same for Inflammatory Bowel Disease (IBD), namely Crohns and Ulcerative Colitis - both of these diseases are debilitating, sometimes life-threatening, often humiliating…..and very few people have heard of them or know anything about them.   This was to change with the #GetYourBellyOut social media phenomenon! 

It all began on March 23rd, when Derbyshire based Marketing Manager, Sahara Fleetwood-Beresford decided she needed to do something to raise awareness of IBD, she wanted to make a difference. 

Along with some of the other members of the team working on this campaign, Sahara suffers with Ulcerative Colitis.  This is a relatively unknown and ‘invisible’ chronic condition which affects the colon, the large intestine (bowel) and rectum, which often becomes inflamed, causing severe ulcers on the lining of the colon. It is an auto-immune disease which can trigger complications such as infections and long-term health issues.  Sometimes surgery is the only option, sections of the intestines are often removed, especially in regards to Crohns disease which affects the entire digestive system.  The symptoms are downright nasty.  Someone who has Colitis or Crohns can expect to spend vast amounts of time either searching for or being stuck in, a toilet.  Imagine the nastiest sickness and dihorrhoea bug you've ever had and imagine dealing with that on a permanent basis, with the addition of blood loss so severe it can cause anaemia.  If you're lucky, doctors find medications to manage the disease and the symptoms become controllable - if you're not lucky, the only route available is surgery.  Often the medications have serious side effects that can be as upsetting as the disease itself.

Unfortunately these diseases are often confused with IBS which is a much milder and overall manageable condition. Colitis and Crohns Disease are totally incurable… to date.  Colitis issues can be eased if a colosotomy bag is used to bypass the bowel, although the malfunctioning immune system can still lead to further symptoms such as chronic arthritis, to name just one.

Crohns and Colitis is the UK association for IBD; providing information, support and guidance to sufferers and their families.  They also work hard to raise funds which they hope will eventually lead to a cure for IBD.  The problem is, how to raise funds for, and awareness of, a disease that so few people are willing to talk about because of the horrible nature of IBD and its symptoms.  Early in the campaign, Sahara decided it would need to be a campaign that got as many people as possible involved, and it had to be something that didn't involve financial outlay.  Small enterprises cannot afford huge expensive awareness campaigns.

We decided on something simple and effective.

 Everyone from the IBD community was encouraged to upload a photograph of their ‘belly pics’ alongside the hashtag #GetYourBellyOut onto social media sites such as Facebook and Twitter.  They were also asked to text and donate IBDA99 to the dedicated number 70070 if they so wished.  The goal was to raise awareness and to support research into finding a cure.  People without IBD who had a passion to help find a cure and to tell other people about it, were also asked to join in.
                                     
A dedicated team of people joined Sahara and we have all worked very hard to co-ordinate this project.  Gemma Willingham, and Lorna Haymes both have Crohn's disease and Victoria Marie and Kay Wilkinson have Ulcerative Colitis. Despite the daily struggles we are all deal with, we have fought on with the #GetYourBellyOut campaign and have helped so many IBD patients come together with a common cause in mind:  A cure for IBD and to tell people about what it's like to have Inflammatory Bowel Disease.

 Sahara says of the #GetYourBellyOut campaign, which has now gone global “What started out as a campaign to raise awareness of an invisible illness that so many people suffer with in silence – has now become a unifying and inspirational campaign!"

“So far we have raised over £2,000 which will help fund research to find a cure for these debilitating and so far, incurable diseases – Crohns and Colitis – as well as helping the community find a voice!”

You can help raise awareness too by visiting the Just Giving page or text code IBDA99 (Inflammatory Bowel Disease Awareness) as well as texting donations to 70070!  Here is the Just Giving link: http://www.justgiving.com/teams/IBDAwareness

 Please join us in our efforts to raise money to find a cure for IBD and to raise awareness for IBD, upload a belly photo with the hashtag, post a blog, tweet about us, follow us on Twitter @GetYourBellyOut.  

 Join us on the #GetYourBellyOut Facebook Forum: https://www.facebook.com/groups/262578540582917/

It's an exciting, innovative campaign that is sweeping through social media and we'd love it if you supported us.  Thanks for reading, Sahara, Gem, Lorna, Victoria and Kay.
 




 

 
 
 

 

 

 

 

4 comments :

  1. From Sylvia Robbins
    Thanks for sharing this ,Jane,
    I don't have either complaint , nor diabetes, Quite simply the muscles controlling my bladder and bowel packed up years ago but it isn't too much of a problem.
    Pelvic floor exercises have no effect so I know all about searching for toilets and getting there fast.
    One of the volunteers in the charity shop for diabetes has Crohn's and another Coeliac disease but they seem to control their problems by their diets.
    I'd urge anyone who is invited to take the bowel cancer test to do it. At least you can do it in the privacy of your own toilet and it could save your life.
    I don't need Tena products because I decide when I drink if I'm going out but Tesco sell sanitary pads that cost a fraction of Tena.
    Good Luck with your health, Jane.
    Sylvia.

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  2. I was diagnosed with Ulcerative Colitis 2 weeks before my 18th Birthday but the symptoms started when I was 16. I am now in my 40's. I didn't ask for Ulcerative Colitis to live in my bowel but for some unknown reason it chose me to make it's home in. I just wanted to say Thank You for writing about this & a huge Thank You to everyone who has raised money too.

    xxx

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  3. HI, Thanks so much for telling people about the #GetYourBellyOut campaign. As you know I have had Ulcerative Colitis for about three years and have 'gone through the mill' with it as they say in these parts. It means so much to me that you have helped out with this awareness campaign, thank you. I hope you recover fully from your e-coli and your acute colitis. It does strike me as amusing that they call it acute colitis, there's absolutely nothing cute about it is there. You're a star, thank you. xxx Kay

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    1. It's probably the least cute thing I've ever met!

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