Monday, 18 May 2015

Has #GetYourBellyOut impacted on you personally? Blog series in celebration of World IBD Day - raising awareness of Inflammatory Bowel Disease

This week, to celebrate World IBD Day and in aid of raising awareness of IBD and how it affects sufferers not just physically but mentally too, I have released a series of blogs over 7 consecutive days, with contributions from #GetYourBellyOut supporters.

Blog 7

~*~*~* HAPPY WORLD IBD DAY *~*~*~

The #GetYourBellyOut campaign has been raising awareness of Crohn’s Disease and Ulcerative Colitis, more commonly known as Inflammatory Bowel Disease (IBD) for the last 14 months. Four women joined forces and poked and prodded at the IBD community until they got a reaction.

In the beginning the days were long and the nights were longer. We were constantly pushing our campaign message and willing the IBD community to find its voice. The four of us were united by one thing – a passion to break the stigma of IBD. To crush the misconception that IBD is just a tummy ache and the misunderstanding of the term which often leads people to confuse the disease with IBS!
The campaign became much more than just raising awareness.
In the past 14 months we have;

•             Raised over £30,000 for National Charity Crohn’s and Colitis UK
•             Launched the #GetYourBellyOut website
•             Launched branded, awareness raising merchandise
•             Had campaign and awareness posters distributed to hospital and GP waiting rooms nationally
•             Gained tons of media coverage
•             Supported Crohn’s and Colitis UK’s online campaigns highlighting issues such as #FatigueInIBD
•             Raised awareness with branded social media logo’s and headers
•             Created a Facebook group supporting over 3,000 members
•             Set up a Facebook page which now has over 12,000 supporters
•             Taken Twitter by storm on many occasions during the aptly named Twitter takeovers
•             Celebrated our Birthday with a big sparkly #GetYourBellyOut ball

#GetYourBellyOut began with one main aim - to raise awareness of IBD, but to its loyal supporters it has become much more than that. #GetYourBellyOut has created not just a community but a family that help each other through bad days and build confidence in one another to talk about their disease and feel better about their body image.

My response:
So who wants to know the bitter truth about how and why #GetYourBellyOut began? Of course the first belly was tweeted in a bid to raise awareness but the reason I was aiming to raise awareness?

I felt like I had been so ill for such a long time. Obviously in reality I have been ill since August 2007 but this was the longest and most draining flare yet.
The prednisone had stopped me sleeping, made me depressed and ugly. I couldn’t wean off them as the symptoms would return. The pain had stopped me eating and sleeping.  The pain meds have stopped me having the capacity to achieve anything remotely productive and I was at the end of my tether.
The night’s when I would lay awake, contemplating how unhappy I was, feeling like no one understood and asking myself the age old question ‘why me?’ were the only times that I would really open up about my disease, taking to Twitter to chat with other sufferers that I had accumulated by searching ‘Crohn’s’ and ‘Colitis’ and stalking those people who had mentioned them. It was a purely selfish act. I only took to Twitter when I needed help. I was in a bad place, a dark place and I couldn’t allow myself to sit there alone.

Talk about removing my Jpouch and returning to a permanent ostomy had me fearful but I knew we had pretty much exhausted all options. Maybe it was the Prednisone thinking, maybe I was tired of my life or maybe it was a combination of the two, but I had made the decision that when the time came to have the ostomy back, I was leaving this world behind. The thought didn’t scare me, it comforted me. I suppose that’s clinical depression for you.

The #NoMakeupSelfie was trending and whilst of course Cancer charities and fundraising for them is massively important, I resented the fact that the #NoMakeupSelfie claimed to be ‘raising awareness’ of Cancer. I also didn’t see the correlation between cancer and not wearing makeup.
I wanted to raise awareness about a disease that mattered to me, that did need awareness raising of it, so I designed my first ever awareness post with RELEVANT pictures. You can see that post here. Give it a share if you will!
A few days later the first belly picture made it onto Twitter and the rest, as they say, is history.
A previously written blog on how the #GetYourBellyOut campaign started is here.
#GetYourBellyOut saved my life. 
I wrote 'What #GetYourBellyOut has done for me' not even a month after the campaign began. The supporters inspired me with their strength and courage and made me believe in myself and my ability to deal with anything that life chose to throw at me. My ostomy surgery last year was nothing like the first time. I didn’t hate it or me, I felt free and well and never once felt bitter about it.
#GetYourBellyOut evokes emotion in me that I thought didn’t exist. The person that would once freak out at any personal contact can now embrace people. I have actual love and massive respect for some of the bellies, especially the admin of the group who give their all to the campaign and its purpose.
I feel I need to thank every single person that has turned #GetYourBellyOut into a campaign rather than just an idea. You can’t build a campaign without supporters and support us you have!

The #GetYourBellyOut that you see before you is a beautiful and incredible creation - a creation born out of frustration, sadness and anger.

Your responses:
Yes it has had a huge impact on me. To know others go through the same thing. To have the support of others if you need help. To know I am never alone. Without #GetYourBellyOut it would be a lot harder to deal with 
-              Lorna Beeke

Wow, gybo has allowed me to meet people from the group who, without fail, have been fabulous. But generally, the group and the community have been fantastic for me. I will now talk about my UC, not just online, but to anyone who wants to know. Everyone is available to talk, at any time, and the support given by individuals to each other is fabulous. I have met people I now count as friends, even though I am very nervous meeting new people. I also talk to a few bellies quite regularly, who I would love to meet, even though they are spread far and wide. Now, I don’t know what I would do without the group, which to me demonstrates how good it is.
-              Ian O’Donnell

#getyourbellyout has had a huge impact on me as prior to joining I didn't really know anybody who had Crohn’s. I basically just ignored the fact I had a chronic illness and nobody but my family knew about it. I never felt comfortable discussing elements of the illness with anybody and was also very ashamed of the scars on my tummy as to me they looked hideous. To be able to exchange stories with others who knew exactly what I was going through made it all that much easier to bear.
-              Laura Pengally

This group has helped me in so many ways, and I'm grateful to the admin's that founded this group.
-              Jennie Maccoll

I really enjoy that there are other people in the same situation as me, people that understand when you are having a crap day due to fatigue or tummy pain. I’m really lucky that my family are pretty understanding, but it's not the same. It's really good to see people who have been really poorly, recovering and doing well, it gives me a bit of confidence that I can do the same. It gives me strength to carry on, and makes me realise that I'm really lucky sometimes. It's such a great support network, and it's lovely to see how everyone clubs together to support people. I really enjoy being part of the group, and I'm really glad I found it!
-              Claire Farrow

Most definitely! GYBO has given me the opportunity to learn so much more about the disease that controls my life! I've made some lifelong friends and learnt so much information that is helping build and structure my life to make it my life again!
-              Joey Pullen

My goal is to raise awareness for IBD and I like the huge support and the fact the main aim of #Getyourbellyout is raising awareness, so you drive me even more to do that. Plus obviously meeting soo many amazing people and now getting to meet them in person.
-              Danielle Emma Gooch

I've been in GYBO for about 6 months. I've been diagnosed with Crohn’s Disease for almost 20 years and I'm 37. GYBO is by far the most positive, fun loving and helpful IBD group out there. I've made numerous friends which I've talked with and helped and they have helped me. And even though we are half a world away (the group being in England and I am in Chicago) the connection is clear and true, IBD effects us and we are one. I love talking with the group and even plan on traveling to go to the next ball. I would love to meet all of the group and get to know them better.
-              Brian Jones

The #GetYourBellyOut campaign has changed my life in so many ways. Before I stumbled across it on Twitter, I was very much lost and convinced I was going to spend my life alone with this disease. I didn't know much about IBD, I'd never heard of it until I was diagnosed. But this amazing group appeared, and it was like the light at the end of this never ending tunnel. Thanks to the founders, the admin, and every member, I have become stronger. I am more confident. I am beating this disease. And most of all, I'm happy. I've not just gained knowledge, or strength, but I've gained friends for life. And the best part? I've gained a family that will love you and be there until the very end. Thank you so much.
-              Shayne Grant

Gybo has affected me and impacted me loads as it has given me loads of support as I don't know anyone with the same illness as me in Northern Ireland...
-              Charlotte Lewsley

The #getyourbellyout group had been a fantastic support group in which I feel safe enough to post comments and know I will not be judged. Although I haven't formed any friendships from the group which is a shame I do know that any post will be answered in a supportive manner and all members promote great understanding towards others.
-              Hannah Tingley

Oh man, before #GYBO, I was so different! I was much more timid and ashamed of my illness. Finishing college and starting a career, one doesn't want to seem different from their peers, or have their boss think any less of their capabilities, so I did far too much hiding. When I was too sick for social gatherings, I felt ashamed. The head games drove me wild. Am I really this sick? Am I being lazy? Am I just a huge baby that needs to get over it? Never mind I had already undergone 3 surgeries, nearly died from a bowel leak, had a temporary ostomy and multiple complications. All of these extreme health issues occurring between 18 and 25 made me feel stranded on an island, and I had no idea how to get off. Then last year, I discovered #GYBO. I've failed to click with other groups in the past, and even though I'm an American southern gal, I felt I could ask ANYTHING on the site and get help STAT. Random new symptoms? Ask away. Need to vent or spread some cheer by dancing like a moron? Go for it! Through the group I made some close friends that I can't wait to meet, and now I don't even feel the need to post every little mind game Crohn's throws my way as I can just ask them privately. This doesn't take me away from the group (because trust me the group doesn't want to hear every. little. thing!), but rather I have a tight-knit support network that I wouldn't have found without this group, plus this group to go to, laugh with, and share funny toilet selfies. Now I'm much more open about my illness, more confident, and I don't care what my boss thinks. Turns out they are quite supportive at work, too. You'd be surprised what can happen if you open up!
-              Kathrine Zahm

#GYBO has positively impacted on my life, not just mine but my family's too.. I've became more open chatting and supporting other sore/broken bellies. People who are or who have been through the same suffering as I have makes me feel not as isolated and alone with this disease and all the lovely symptoms along the way.
I'm still always learning too, even after 24 years of Crohns! I love reading others achievements and celebrations because this shows us that life does go on. We offer support with others fears and operations and watch them as they come through the other side, if they struggle we're here too..
We stick together through thick and thin through good times and bad.
I can't put half the stuff I talk openly about on my normal FB page. I feel safe to do it in #GYBO though Sahara Thankyou xxxxxxxxxx
-              Dimple Smiler

Up until this time last year, only a select few friends and obviously family members knew that I suffered with Crohn’s disease and all its associated ‘fun’, even though I was diagnosed at 16 (I’m now 28), and I only knew of 2 other people with Crohn’s. The campaign has not only made me more comfortable in telling more people about my condition, but it’s proved an invaluable lifeline to me in that I’m able to ask questions of people with the same/similar experiences and not feel ashamed about my condition. The network of friends that I’ve gained from the group will stay with me, and I’m so grateful to Gem, Sahara, Victoria and Lorna for creating such an amazing support network that I cherish so much! Not a day goes by when I’m not on the Facebook group!
I’ve taken to Twitter and Facebook and posted as much about IBD as possible to help raise awareness, and in doing so it’s made people actually stop and think, especially if I have to cancel plans last minute or am just feeling generally under the weather. I’ve definitely opened up to people about IBD thanks to #GetYourBellyOut, and they come to me with questions, which just goes to show that the campaign is succeeding in its main aim – raising awareness!
-              Cat Lodge

#Getyourbellyout has made a real impact on me, by being able to chat to people on what's worrying me as I don’t know anyone with IBD, its really helpful! And supportive, I'm so glad to be a part of it, gives me the feeling that I'm not actually alone after all:) its amazing.
-              Jaz Bingham

GYBO has been amazing to be part of, I've met and connected with people going through exactly what I am who have given me tips to battle the fatigue and pain. The group is full of inspiring and brave people who help me push myself day to day and pick me up when I'm at my lowest. The amazing fundraising and awareness you guys do I'm sure will help us be that but closer to a cure.
-              Kate Keen

When I was diagnosed, I had no information but a website address (CCUK). Of course there was a plethora of information on there about IBD but I also wanted to speak with others and listen to experiences and stories from those living it now. I was scared when I read it was lifelong with no cure but once I got more involved in the group it helped me to understand that although I would have to learn many things, I knew I wasn't alone doing it. I had people who could empathise, sympathise, offer help and hugs and also a kick up the ass wen needed! Who knows how I would have coped with it all had the Ladies not set the group up. For that, I'm eternally appreciative.
-              Nicola Bullock

Yes it sure has! It has made me feel that I am not alone and I have met some incredible people through it. I genuinely do not think the founders (Sahara, Lorna, Gem and Victoria) realise the impact of what they have done so thank you all!
-              AJ Mooney

I’m unsure if I am going to make it through this question without welling up or crying, because it is so hard to put in to words how much #GetYourBellyOut has impacted me personally and how amazing it has been for me. When I first got diagnosed, I didn’t know anybody with IBD and I felt so scared and alone. I had supportive people around me, but they couldn’t truly understand. I was terrified of the thought of needing a Stoma at some point in my life, and even said I would rather die than have one. I had nobody to turn to for support and advice about whether my symptoms were normal and what I should be expecting, and it was terrifying. When I stumbled across the #GetYourBellyOut campaign, I was absolutely amazed by how incredible it seemed and the fact that people were proud of their bellies, scars, stomas, everything and wanted to shout and tell the world that they were still beautiful regardless! Looking through the posts of the gorgeous tummies and reading the experiences of other people gave me so much hope and made me feel like IBD didn’t have to be totally negative. As I saw more and more people join and upload pictures of their bellies, I saw more and more bags being shown and people talking about them, and all I could feel was inspiration. It made me realise that having a bag is much more preferable to dying, and if I ever need one I will be SO proud of it, and I will show it to whoever lets me! These people still looked absolutely beautiful and handsome, and their bags had given them their life back. I finally didn’t feel like I would rather die than have a bag, I felt honoured to be a part of such an incredible movement. Not only that, but I have made some friends for life. I have met so many people from the group now thanks to meets and the incredible #GetYourBellyOut 1st Birthday Ball, and I love them like they are my own family. Even those I haven’t met yet but communicate with everyday, they feel like people I have known all my life. I know that there is ALWAYS going to be someone there for me if I need them, people are only a message away, and I hope I do the same for them. The kindness and generosity of the group astounds me, it really is like one big family and I really cannot put it into words how much it means to me.
#GetYourBellyOut has shown me that IBD can have positives (new friends and amazing times) and that we should be proud of what we look like and who we are. I could never thank the four founders enough, Sahara, Lorna, Gem and Victoria I owe you all so much for what you’ve done for me. The campaign has made me stronger and less scared of what may happen in the future with my IBD, as I know that whatever happens I will have 2000+ people behind me supporting me the whole way.
-              Abby Mae Matthews

This is an easy one. Yes most definitely! Without certain people I would have been left wondering in a wilderness of darkness. Also as I'm currently fighting to get some mental health care being able to talk to people that know what I'm going through helps immensely.
-              Dave Carden

#GetYourBellyOut has helped me massively since I found it 2 months ago. It is very reassuring that I’m not the only one that feels the way I do & that there is other people out there who know & understand how I feel. It is amazing because if I ever have any questions about my disease or any unusual symptoms, I can just post the question in #GetYourBellyOut & there is over 3,000 people who can offer advice or support. Everyone in the group is amazing & very supportive despite having their own problems. There is always someone who can help in the group. Even though everyone is a different age, at a different point in their lives & at a different stage of their disease, the support and understanding is better than any I’ve ever experienced before. Family & friends will support you but bellies will inspire you & walk every step with you, no matter how difficult the journey. One of my favourite things about the group is that age doesn’t matter. No one is too young or old to help or support. I can’t thank the founders enough for creating such a wonderful family!
-              Becka McKenna

I've made so many friends, I don't feel alone, any questions or when I'm feeling down the bellies are all there helping me/us on our journey. I've gained a family from #GYBO but most of all I've gained a sister in Sahara the one person I only truly open up to
- Gemma Willingham

YES!! This group has been a massive lifeline for me, and I don't know where I'd be without it... well, I guess I'd still be here, but I'd probably feel like I was alone suffering, like I used to. It's opened my eyes to a whole new world of people that suffer with IBD, Young, Old, Married, Working, and those, like me, who have never had a "proper job" thanks to my crohn's. I was diagnosed at 19, and aside from the support of my Mum, I have largely dealt with this disease on my own. It's such an isolating disease, as, let's be honest, who wants to talk about poop?!
#GYBO has enabled me to talk about my crohn's freely, and not be ashamed that I feel like I spend half my life on the toilet... in fact #GYBO encourages Toilet Selfies!! I absolutely have to mention the Ball too, I met so many new faces, and made friends that I'm sure I will keep for a lifetime I personally cannot wait for #GYBO's second birthday.
This group has increased my confidence immeasurably, I would NEVER have got my belly out so publicly before, and right now it's displayed proudly as my Profile Picture on FB... I also managed to pluck up the courage to enter the Calendar comp, and scored a place as Miss June! I could have burst with pride! I had so many messages from friends, and friends of friends congratulating me for being so brave... it was pretty overwhelming...
Most of all, this group has taught me to be proud of my scars and battered belly, They're the very reason I'm still breathing! Far better to be like this than leave a pretty corpse!
-              Lowri Sian

OMG yes! I have never spoken out about my Crohns and would never have talked about my stoma...GYBO have given me the confidence to love myself and respect my body for fighting to survive. I have made friends for life who just 'get it'. The campaign has helped me restore my faith in the world
-              Cassie Kingswell

Simply enough GYBO has had a huge impact on me. It’s given me a place I can rant about anything in my life, not exclusively IBD support though thats what I use it for mostly. It’s given me hope that people who have come through much harder circumstances than me shows that I can do this too. I’ve met lifelong friends on there and people I will always care about. In short I love GYBO and am so thankful for the founders in creating it, I honestly think it was the group that saved my life last summer. It gave me hope.
-              Finlay Hards

Yeah the group has definitely changed my personality. Before the group I was a bit quite embarrassed by my illness and didn't want people to know. Now the group has gave me the confidence to share my experience and help inform others.
-              Lorraine Hepburn

Basically it has because I was scared to talk about my bag and didn't know anyone else with ibd that I could chat to about it and Ibd on a daily basis with, like I have here, it's made me far more open to talking about having Ibd and now I'm dedicated to raising awareness about it.
-              Jennifer Connel Mcgregor

The whole campaign has made me more confident in myself. I have embraced what it stands for. I have never been afraid to talk about IBD if I was asked but now l want to help promote awareness. I want people who are less fortunate than myself to have the care and support they deserve. I want to hug every belly and tell them how beautiful they are. A year ago, I didn't do hugs, can't get enough of them now
-              Stephen Gomm

I suffer with Ulcerative Colitis 11 years now, I was diagnosed at just 18. I hadn't heard about this illness ever and I was afraid, even though I had my parents by my side every step of the way. There was nothing much around to help me understand what was going on in my body and I didn't really speak about it. I lost all my confidence. I was 6stone at the start of my illness. My weight was always up and down. I didn't feel comfortable in my own skin.
Before the group came along I was so shy and never spoke about my illness to anyone, I'd hide away.
But since the group I tell everyone about it now and I got my belly out for the first time last year and it was hard at first, but now ive slowly got my confidence back and it's all thanks to the group.
-              Lisa Cummins

To say I am in a bit of pickle after reading these would be an understatement. So much love and so much emotion! I can’t even begin to explain how much the campaign means to me and just helping one person is an achievement in my eyes so to have helped so many is completely overwhelming.
The ball really got me. All of those people in one room because of something I did. Standing on the stage in front of over 200 people and the tears came. That’s not something that ever happens to me. I don’t cry in front of people… EVER and the tears came all night. It felt like family and it felt like home. All of those people laughing and dancing and enjoying each other’s company, you would never have known that this was a party for the ‘incurably sick’ if you were just a passer-by.
I have been suffering massive belly blues ever since.

So I guess I’ll be leaving you now.

Have a fabulous World IBD Day and remember… you are NEVER fighting this battle alone.

~*~* United We Stand *~*~

Go back to blog 6, discussing how IBD affects eating habits.

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