Monday, 31 March 2014

The rise of #GetYourBellyOut

So, here I am, writing a blog. Something which I don’t normally do (which will no doubt have become apparent by the time you reach the end of this blog. IF you reach the end of this blog….)
Of course you will have all seen the #NoMakeupSelfie. It was unavoidable. Even if you’re not a social media addict like myself! It was covered in the news online, TV and in papers.

My first moan is that they call it ‘raising awareness’. It is not raising awareness when it’s something that everyone on the whole damn planet already knows about.

Raising money for a well needed cure, Yes.

Raising awareness, No.

So I started my campaign with a Facebook post, the beginning of which read…
Seen as sharing disturbing photos in aid of raising awareness is the current trend, I want to raise awareness of something that matters to me… #IBD
Shared along with some pretty personal photo’s of my old stoma, weight loss etc.
You can see the post here

I shared it about a bit in Facebook groups and on my Twitter, @Sahara88uk, and watched as the likes and shares ticked up. I couldn’t believe it when by the next day it had been shared over 130 times! I had expected a few from the groups and maybe a couple from friends. Maybe some people did give a shit about what I had to say after all!

A day or so later I saw a post in a group on Facebook by Gem Willingham. Gem had set up a Just Giving page to try and raise some money for Crohn’s and Colitis UK within her circle of family and friends.

What a fab idea! I’m getting in on this action! We hadn’t gotten very far before a row about fundraising broke out in a Facebook group. With Gem disheartened I saw a post, giving up the fundraising!

Well I can’t be having that now can I? I’ve got a taste for this raising awareness lark! So with gem’s spirit beside me I set off to do some awareness raising of my own. Having set up a Just Giving page with a text code IBDA99 (inflammatory bowel disease awareness in case you were wondering) I could now get text donations sent to 70070!

Again, I shared my belly picture in Facebook Groups and then set my sights on Twitter, all the while urging people to donate. I’m pretty sure it was after only one Tweet that up popped @colitisandme!
I hadn’t got as far as considering what my plan of action was but here she was, offering a helping hand. I would probably have gone down the usual social media route of sharing the pictures, tagging on to conversations of people talking about IBD on Twitter and sharing the idea in a few forums. I liked the nomination idea of the #NoMakeupSelfie, I mean there’s no greater pressure than peer pressure!

Initially the plan had been to just get the idea out there and let people run with it themselves whilst hopefully donating a bit of money to Crohn’s and Colitis UK along the way.

@colitisandme (Victoria Marie) came up with the hashtag #GetYourBellyOut. And there stems the problem you see…

Now I can track it! And I did. WE did, for the whole evening whilst tweeting away and discussing what to do next until the early hours of the morning.

We were beside ourselves the next day to see that we had raised a whole £88! Little did we know how far we could come. The updates from people sharing their belly pictures, being brave and bearing all to raise awareness of this invisible illness made me so proud to be a part of!

And THAT is where it all began. We have now recruited Gem back, @wales28 and Lorna, @loranmary_1981, who is currently at home recovering from her most recent operation, and in her words ‘I’m doing nothing else’

You may have seen our Twitter takeover last night between 9 and 10pm. I used up my daily Tweet limit! I didn’t even know that this existed and I work in social media!

We’ve had bellies galore, blogs written about the campaign and even a few YouTube videos too! The strength and the spirit of the online IBD community has been inspiring! I have cried with pride AND sadness as I’ve seen update after update from people who now no longer feel alone in their battle with IBD.

I don’t know how long we have left until we run out of steam so I am going to make the most of every minute of the #GetYourBelly out campaign that we have left and enjoy the hoards of lovely bellies flooding Facebook, Twitter, Instagram and the likes.

What started out as a campaign to raise awareness of an invisible illness, that so many people suffer with in silence has turned in to a campaign of Inspiration and unity! It has also raised over £1,500 in the process, which will help fund research to find a cure for this debilitating and so far, incurable disease!

Maybe we haven’t succeeded in raising awareness to those outside the IBD community.

Maybe no more people give a shit now than those that did before (which is what I suspect)

BUT what we have done is give people with IBD a voice. A confidence they did not know they could find within themselves and I’ll tell you something, I sure as hell feel better!
The only criteria you need to join in with the campaign is a willingness to raise awareness of IBD!
Upload your belly pics with the hashtag #GetYourBellyOut and text IBDA99 and your donation amount to 70070.

#GetYourBellyOut photo album
‘GetYourBellyOut video
#GetYourBellyOut blog via @colitisandme
#GetYourBellyOut blog via @Chaoskay
#GetYourBellyOut blog via @ColitisNinja
#GetYourBellyOut blog
Just Giving link

Thursday, 20 March 2014

Where my awareness raising / fundraising began...

March 20th, 2014...

My first awareness post on Facebook. It was born out of anger and frustration and the lack of understanding out there of Inflammatory Bowel Disease. It's had over 1.5K shares, but, you can never have enough awareness!

If you would like to go share it yourself, the post is here

The text reads

Seen as sharing disturbing photos in aid of raising #awareness is the current trend, I want to raise awareness of something that matters to me... #IBD
*Moonface from steroids.
*The meds I take every morning.
*The hair I lose every day when I wash it due to malnutrition & med side effects.
*The age 11-12 jeans that are way too big now.
*Bowel disease.
*My old #stoma.
*#Colostomy bag.
There is currently NO CURE for IBD.
IBD is in NO WAY related to IBS.
IBD stands for Inflammatory Bowel Disease and includes #Crohns Disease, Ulcerative #Colitis and a more recently identified form of bowel disease, #Pouchitis (Inflammation of the surgically formed internal pouch)
IBD is an #autoimmune disease which means your immune system attacks your own body.
Symptoms can include excruciating pain, weight loss, diarrhoea, malnutrition, #fatigue, anaemia, faecal incontinence, skin conditions such as psoriasis / eczema, vomiting, dehydration, strictures (narrowing of the intestines), partial or complete bowel obstruction, ulcers throughout the whole digestive system, the list goes on.
Medication treatments for IBD include antibiotics, probiotics, steroids, immunosuppressant's, TNF blockers via injection or intravenous infusions.
Side effects from these drugs can be just as debilitating as the disease itself causing issues such as weight gain, weight loss, hair loss, moonface, acne, dry skin, mood swings, #depression, susceptibility to infections resulting in hospitalisation, excess hair growth, excess sweating, vomiting, #anxiety, fatigue, restlessness, insomnia, unexplained bruising, heart problems, thinning of the skin, muscle loss / weakness, increased risk of some forms of #cancer, hepatitis, osteoporosis (weakened bones) the list goes on.
Treatment of symptoms also requires medication such as pain relief, loperamide, iron injections, antidepressants, sleeping pills, vitamin supplements, a lot of which come with their own side effects.
Often more medications are needed just to counteract the side effects that come from the medications needed to treat the IBD!
IBD often results in major surgery to remove the diseased intestine which leaves sufferers with shortened digestive systems, stomas / colostomy bags, internal pouches and in some cases reliant upon TPN (drip feeding) or PEG feeding (a feeding tube passing through the abdominal wall) which means patients may then go on the bowel transplant list which is a relatively new procedure.
Surgery often brings with it more complications such as fistulas, infertility, narrowing of the bowel causing obstruction and so on.
Routine testing for IBD patients include bloodwork, colonoscopies and MRI scans. More tests are also needed when taking certain medications such as chest Xrays and bone density scans.
Living with IBD is by no means easy yet there is so little awareness of the condition!
If you've managed to read all the way to the end of this post then I massively appreciate that.
Please share and help raise awareness of IBD, a disease that people are not currently very aware of. Surely that is the idea of 'raising awareness'
Fundraising for Cure Crohn's and Colitis via #IBDSuperHeroes - Text CCSH90 and your donation amount to 70070