Invest for Children donates £9k to Crohn's and Colitis UK

We would like to say a very big thank you to Invest for Children, a not for profit international organization whose mission is to help disabled children and young adults achieve a better quality of life.

They pledged £3 for every mile that James Prior rowed across the Atlantic whilst doing his epic 3,000 mile journey from Gran Canaria to Barbados in March.Their incredible £9,000 donation to the charity will make a huge difference to so many lives.

Thank you to both Investindustrial and Invest for Children for their phenomenal support for the charity and helping the Crewing for Crohn’s fundraising totals smash through the £100,000 target.

To find out more about Invest for Children, visitwww.investforchildren.org

#GetYourBellyOut campaign

Video Blogger Thaila Skye explains everything you need to know about the #GetYourBellyOut campaign which has been rapidly raising IBD awareness across social media.

What to do
You don't have to have Crohn's Disease or Ulcerative Colitis to take part in the campaign - EVERYBODY CAN GET INVOLVED! 

Take a photo of your tummy and share it on Twitter, Facebook or Instagram, adding the #GetYourBellyOut hashtag.
If you don't want to share a photo of your tummy (but still want to get involved), you can go straight to making a donation by Text or online.For example if you wanted to donate £3, then you would:
If you can't make a text donation, then you can donate online instead at:
All donations will go to Crohn's and Colitis UK.
Search for #GetYourBellyOut on Twitter, Facebook and Instagram or visit these pages/groups:
There have been many blog posts promoting the campaign, here are just a few of them:

Blogs

• Sahara88UK: http://sahara88uk.blog.com/2014/03/31/the-rise-of-getyourbellyout

• Colitis & Me: http://colitisandme.blogspot.co.uk/2014/03/getyourbellyout.html

• Colitis Ninja: http://colitisninja.blogspot.co.uk/2014/03/getyourbellyout.html?m=1

• Brink of Bedlam: http://brinkofbedlam.co.uk/2014/03/31/get-your-belly-out-for-crohns-and-colitis

• Acousticappraisals: http://acousticappraisal.blogspot.co.uk/2014/04/more-details-of-inspiring.html

How to donate
Send a text message saying IBDA99 and the donation amount to 70070.Text IBDA99 £3 to 70070www.justgiving.com/teams/IBDAwareness

More information

• Facebook Page: facebook.com/getyourbellyout

• Facebook Group: facebook.com/groups/262578540582917

• Twitter: twitter.com/GetYourBellyOut

World IBD Day: What's your story?

Monday 19th May is World IBD Day. It’s a day for us to take action, stand up and support the 260,000 people in the UK, and millions more worldwide living with Crohn’s Disease and Ulcerative Colitis.

• We want to raise as much awareness as possible for everyone who suffers from these ‘invisible’ illnesses which is why we’re asking you to share your journeys with IBD.
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• In the run up to World IBD day we would love for you to send us your stories, along with a photo of you holding a piece of card with your name, age, location in the world, IBD type and a sentence or key word/s about you and IBD.
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• If you don’t feel like taking a photo, you could post one you feel sums up you and IBD.
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• Whether you have Crohn’s or Colitis, or you’re a loved one of someone who does, sharing your journey with IBD and what it means to you, you will help make them more visible.

Post your stories and photos to your own Facebook page (Don't forget to tag us!), as well as our Facebook page. If you prefer you can also email your pics to webmaster@crohnsandcolitis.org.uk

The more people they reach, the more awareness we can raise.

#WorldIBDday #myCCUKstory

• Please also join and invite others to our World IBD day event on Facebook

Crohn's and Colitis UK Fundraiser Walks 2014

It's not long to go now until the 2014 Crohn's and Colitis UK Fundraiser Walks get underway. They are taking place in London, York, Rutland and Edinburgh. You can even take part on bicycle in Rutland!

Our celebrity Ambassador, Lewis Moody, tells us more about the walks:




For more information and how to book your place on the walks (hurry, there's not long to go), please visit the main Crohn's and Colitis UK website.

This year there is the added bonus of a 'Walk Your Own Way' video and PDF. This is for people who aren't able to take part in the larger organised walks, but who would like to take part in one. Basically, it's your guide to doing your own walk to raise funds for Crohn's and Colitis UK. Never thought about doing something like that? Well, watch the video and find out how:




Thanks for reading and we hope you are able to participate in some way.

Guest Writer - Joey

It's been almost 6 years since I was diagnosed with Crohn's Disease. I vividly remember the first time I started to feel a dull ache every now and again from a part of my body you never want to feel pain - you guessed it, the anal region. I wasn't too concerned at first as I thought it may just be part of growing up, but I guess I was naive. 

At the age of 16, everyone thinks that they are invincible when they are that young. It was probably weeks maybe even months before I actually plucked up the courage to tell my parents about it, as you would have guessed I was very embarrassed, I hadn't even said anything to my closest friends but the pain was becoming quite unbearable and it just wasn't going away. I knew I had to do something.

The doctors were originally very vague in telling me what was actually wrong with me and couldn't actually give me a definite answer on any of the questions I had, which I would later find out was one of the major factors in why it would get so severe. Had they been able to diagnose it sooner I don't believe my condition would have got as bad as it did.


After making numerous visits to my GP they came to the conclusion that it was an ingrowing hair which had caused an infection. Boy, could they be any more wrong? As you can imagine stress levels were high. At this period in my life I was in the middle of my GCSE's and I would later find out that one of the main triggers of Crohn's is stress. Things were getting worse and I still did not know why. Coming away from the doctors surgery very unhappy and dissatisfied with their diagnosis me and my parents discussed that the only other option would be to make an appointment at the Gastroenterology department in Hereford Hospital as the pain was starting to get rapidly a lot more difficult to deal with. 

It was soon after this that eating was starting to become a real issue for me as I just stopped. I couldn't even explain why I just felt full all the time and couldn't even stomach my mums Sunday dinners which showed just how serious the problem was who can refuse their own mums Sunday dinners! It was at this point that my closest friends at school were starting to see a real change in my character as well as my physical appearance, as most people know I've always been quite a stocky lad and my weight was dropping at an alarming rate down to nearly under 9 stone. This was increasingly frustrating for me as I wanted to let my friends and classmates know what was happening but I didn't even know myself. But I was about to find out.

Of course I was extremely nervous on the morning of my hospital appointment what young lad wouldn't be? But I was in such pain that I just wanted a resolution to the problem. The consultant examined me and deemed everything okay for a small routine operation to remove some infected skin which I was told would be the end of my problem. It was only then that I happened to mention that the pain was coming from a different area also (a smaller lump that had appeared) . On re examination the consultant then looked at both me and my mum and told us he had made a mistake. We looked at each other directly in the eyes thinking exactly the same thing, Cancer. To my relief he immediately quashed this fear but he did diagnose a serious chronic condition that we knew nothing about. This was the first time I had ever heard of Crohn's Disease.


The operation still went ahead but they decided to use a camera to try and investigate the extent of the inflammation. I would later find out that this was inconclusive and they didn't actually find out anything they didn't already know. Things accelerated so rapidly after this as what I didn't know was an abscess was forming. At this point I was only really attending school to sit my actual GCSE's and I would like to thank Fairfield High School for the understanding they showed allowing me to take comfy cushions into my exams as well as jelly babies and other sweets to keep my energy levels high as the extreme fatigue caused by the condition was something I had never experienced before. 

In the days after the exams things really started to take a turn for the worse as the abscess was about to burst. The pain at this point was so severe that I remember saying to my mum I wanted to punch a brick wall so hard that at least it would change the focus of pain even for a couple of seconds. I was so angry with it I couldn't think or do anything else. I was admitted to hospital immediately and put straight onto morphine to try and control the pain and after a few days an operation was finally carried out. It wasn't until I had awaken from the surgery that I knew the extent of what was needed to relieve my symptoms. 

The operation left me with an open wound that would require packing and dressing every

day for many weeks. The nurses at this point tried to show my mum how to dress this for me but after taking one look at the damage that they had left she fainted right there in the hospital ward and needed oxygen herself!.It's safe to say she wasn't fit to do this and the job was left to district nurses and this was one of the worst experiences of my life. Imagine at the age of 16 having to have nurses intrusively everyday looking at the most private areas of body, especially when they were young and good looking!


Due to the inflammation in my bowel, an abnormal passageway had been caused. This was otherwise known as an anal fistula. This is essentially a small channel that develops between the end of the bowel, known as the anal canal or back passage and the skin near the anus, where obviously waste leaves the body. My problem was that the fistula was branching out into more than one channel. There was only one way to stop this and this was to insert a number of small drains into the passageways to help divert the waste and stop the build up. This would prevent another possible abscess. 

These drains were to stay with me for around 9 months and I have never told anyone this but I had to use pads walking around to collect any lets say..unexpected gifts. Having placed me on steroids the combination of them and the drains, finally got the condition under some control. This was never a permanent situation and whenever they tried to reduce the dosage of steroids, I would see myself falling ill again. This would happen over and over for a good 12-18 months. There was no real way to get the Crohn's under control. At my worst I was taking almost 100 different tablets a week. 


The most frustrating thing for me and my family was just nothing worked. Any time there was a bit of hope the Crohn's would flare up again. I tried to live as normal a life as possible. At this point, I was enrolled in Hereford Sixth Form College and was trying to get on with my education, but obviously I was incredibly embarrassed by my condition and only a select few of my closest friends knew what I was dealing with right through Sixth Form. They know who they are, and I thank them. Eventually after 3 years of unsuccessful treatment, I was trialled on a brand new, very expensive drug called Infliximab. 

Since August 2010, I have been regularly attending the hospital every 8 weeks. I have this drug administered through an intravenous drip. This combined with a daily drug called Azathioprine and regular blood tests has allowed me to steadily gain weight again, eat what I like and generally stay fairly healthy. I still suffer from the fatigue and some other minor issues but at least for the moment my quality of life has much improved. I have been told that the Infliximab is incredibly strong and nobody knows the real long-time side effects, so it is not an option to stay on this permanently. 


I really don't know what the future holds for my disease, and I hope that when I am no longer able to take this drug that there is something new for me take instead as I do not want to go back to the way I was almost 6 years ago. Although this could happen, I just try not to think about it. Despite the severity of this condition, and I admit at times it has got me really down and  quite depressed. I try to be as positive about it as possible. 

It hasn't stopped me in life as I am in the last few months of a business and management degree at Cardiff Metropolitan University, something I could never see myself doing a few years ago. It goes without saying I appreciate the support and understanding of my parents and friends about my condition but I would like to say a huge thank you to my sister Katie as she has written a few pieces as well as a radio appeal on Crohn's Disease and is extremely understanding and supportive of my condition.  


Crohn's disease is a very debilitating and embarrassing disease to live with. I have never spoken about what I have gone through before as to be honest, I never really knew the true meaning and just tried to ignore it. As there is currently no cure for the disease, I am purely writing this to help raise awareness in the hope that there can one day be a cure to stop people going through what I have and what the thousands of other people in the UK are going through- many who have had it a lot worse than me. 


Thanks for reading,
Joey

You can follow Joey's story at his blog: My Crohn's Disease

Guest Writer - Sam

So Bad Ass came into being as a website and blog about Inflammatory Bowel Disease and specifically my journey with Ulcerative Colitis and living with a stoma.  Over the past year it has become so much more than that and I have been inspired to talk more about self esteem, body image and loving yourself.

In 2003 I was diagnosed with Ulcerative Colitis.  I had never heard of this before and so went off to google and what I found seemed to be a horror story, all the talk of ulcers and bleeding, surgery and bags! I was 22, engaged to be married and had two children.  I felt like my life was over.

What followed were years of flare ups and remissions, never knowing when a flare up is coming or when it will end.  

In May 2013 I started with a flare up, after trying to control it with drugs for months I was eventually admitted to hospital for a course of IV high dose steroids.  I was passing a lot of blood and was very poorly.  After 6 days of intensive IV steroid therapy along with a whole host of other drugs, the decision was made that surgery was the best option for me.  

On 3rd September 2013 I had a sub total colectomy and end ileostomy.  I now have no large bowel and live with a stoma in my stomach, I wear a bag to collect all my waste and my life has changed forever!  

During my treatment I blogged my heart out, it has helped me to deal with the changes in my life and feels good to talk honestly about my illness, treatment and life.  I blog in the hope of making poo no longer a taboo…

I hope that reading my blog helps people to deal with their own situation.  I want to let other IBDers know that just because you have a bad ass, it doesn’t stop you from being badass…

The blog now gets thousands of views every week, I receive so many emails and messages of support and encouragement as well as a lot asking for help and support themselves.  I am so proud to have used my illness and surgery to spread the word and raise awareness of Crohns and Ulcerative Colitis.  I use my ileostomy and stoma to show images to the world to rid the fear of the bag!  I show my audience that having a chronic illness is just one small part of who I am, and that if they just open their minds and look a little deeper, this ileostomy bag does not define me.

I spoke at International Women’s Day this year about Ulcerative Colitis, living with a stoma, body image, self esteem and positivity.  I am also developing a workshop for children and young adults to learn about loving their own bodies no matter what they face in life and have more public speaking lined up for this year.

The coming year is one of more surgery (Im going to cease to be an ostomate and become a pouchie!!!) building the blog, raising awareness and generally shouting as much as I can about Ulcerative Colitis, Crohns, stomas and pouches and I run a photography company called The Picture Foundry. 

I am also renewing my wedding vows at the end of this year after ten years of marriage with a big ceremony which Im terrified about!! I am using the wedding as a way to raise money for Crohns and Colitis UK though, we are asking our guests to make a donation in lieu of gifts so this year is a busy one.

I didn’t ask for this illness or this life, but I will make the most of every second of it.  If I can raise awareness of the disease, it makes it worth while.  My surgery, illness and stoma can make a difference and so every day I remind myself that I am so bad ass.

You can take a look at my blog at http://sobadass.me

Follow me on twitter at @so_bad_ass

Or like my page on facebook at https://www.facebook.com/SoBadAss1

Action! Our Fundraising Magazine

Published quarterly, "Action!" is our fundraising magazine. It features great tips and advice for raising money for Crohn's and Colitis UK as well as successful campaigns from other members. Find out more.

Download previous issues:

Summer 2013 (PDF)	Spring 2013 (PDF)	Winter 2012 (PDF)	Autumn 2012 (PDF)