A world unseen…

In my recent-ish post ‘Musings on Free Time‘ I considered getting more involved in Inflammatory Bowel Disease (IBD) and mentioned the #getyourbellyout campaign – you can check out that hashtag on Twitter, Instagram and there is also a Facebook group. I even joined in!

In the middle of June there was then a flurry of publicity around IBD and Crohn’s Disease. Firstly, Crohn’s Colitis UK launched there new Fatigue Screening tool, in reporting this there was some misrepresentation in the media – I talked about it all here. Then the story of Bethany Townsend went viral and received lots of media coverage – The Daily Mail & The Daily Mirror to name just two.

This has produced some interesting reaction around the IBD and ileostomy/ internal pouch community. First, a bit of explanation…

Crohn’s Colitis UK is a charity supporting people with Crohn’s disease & ulcerative colitis (I have Crohn’s).

The ia – The Ileostomy & Internal Pouch support group is a charity that supports people (and their families) with an ileostomy – that is when the small bowel is brought to the surface of the skin as a stoma and has a bag placed over it to collect waste, often after the removal of the colon, and internal pouches – where a reservoir is created from small bowel following the removal of the colon (large bowel).

The #getyourbellyout campaign raises money for Crohn’s Colitis UK, and along with Bethany’s story and subsequent publicity there was some negativity that the ia had not tried to get involved and gain some publicity/ raise awareness of themselves as all of this had been going on – as well as being critical of perceived error in reporting – referring to a colostomy rather than an ileostomy.

According to accounts on the forum, the ia is happy where it is and has in the past been resistant to raising it’s profile further. Crohn’s Colitis UK, who have used Bethany’s story, have celebrity ambassadors – Sam Faiers from the Only Way is Essex and Carrie Grant for example. However, one tweeter has been keen to point out that Crohn’s Colitis UK have over £1m in the bank, and last year spent more on staffing and on costs than on research.

Now I have not been really involved with either charity – although I am a member of both – and I’m not overly concerned by either aspect – although interested to see the dialogue develop between this tweeter and the CEO of Crohn’s Colitis UK. And I think that the ia is a very specialist charity – relatively few people are affected or interested. What is important, in my view, is that people who are affected are informed about the existence of these charities either at the point of diagnosis or surgery (or when surgery is being considered). That obviously requires a level of resource to produce information, as well as volunteers to support local group infrastructure to support members and potential members. It’s never going to have the reach of the larger health charities, but both do good work – and raising awareness of both IBD and ileostomies and internal pouches is important – to me at least.

My local CCUK group has just restarted, and I look forward to attending meetings with both.