#GetYourBellyOut

You told us what matters most to you. You want greater awareness of inflammatory bowel disease, more activities that bring us together, and a better understanding of what it truly means to live with IBD. You want people to recognise fatigue as a real symptom. You want a stronger patient voice, improved standards of care, and a community that has your back. You told us you need somewhere to turn, people who listen, and the kind of education that helps you make confident, informed choices. For almost 12 years, @GetYourBellyOut has been delivering exactly that, and we have done it together. We have raised our voices, pushed for change, and made IBD visible in places it was never seen before. 💜 But we are only just getting started. There are thousands more people who need this community. There are conversations waiting to be had, myths waiting to be broken, and changes waiting to be made in clinics, hospitals, and everyday lives. We are ready to do even more, and with a little extra support, we can expand our work to reach many more people. And that is where you come in. You have already shown how powerful this community can be. When we come together, we do not wait for change. We create it. We often hear from community members that their contributions come from a place of gratitude and a desire to pass on the support that once made a difference to them. So, if you are able to, please consider making a one-time, monthly, or yearly contribution that feels right for you. Every act of support helps us grow: ✨ A full calendar of meaningful activities ✨ Stronger advocacy for patients and families ✨ Better recognition of symptoms like fatigue ✨ More support for those who feel alone ✨ Better care for everyone affected by IBD Regular contributions, regardless of size, give us the stability to plan long-term projects and reach more people with meaningful support. Your support does not just fund a charitable organisation. It fuels a movement. It too adds your name to our Supporters Wall - our way of honouring the selfless individuals who are shaping the future of IBD support. And if contributing is not possible right now, simply leaving a 💜 helps this message reach someone who can. Thank you for believing in this community. Thank you for being part of the change. Let us keep building something extraordinary, together. 💜 If our work inspires you to donate, please do so here... GetYourBellyOut.org.uk/community-fund

🙋‍♀️Hands up if you've ever walked into an appointment with your IBD team wanting to ask a bunch of questions, only to walk back out having forgotten to ask them all? 😬🫠

My #GetYourBellyOut story: Stacey I only found out a few years ago that I had Crohn’s Disease after my appendix ruptured, causing me to need a few operations and a stoma for a year. All I had been told before this was that what I had was Irritable Bowel Syndrome (IBS). Since finding out that it was, in fact, Crohn’s Disease (IBD) and having my stoma reversed, my life has completely changed. I feel older, weaker, and more tired. Stomach pain, diarrhoea, bloating, fatigue, joint pain and brain fog are now a daily part of my life. After having had enough, towards the end of last year, I went to my GP, where I was diagnosed with depression, low iron and B12, which was what was making me feel so bad. I am now currently awaiting tests so that a treatment plan can be decided for me; however, everything has been put on hold due to COVID-19, so for the time being, I’ve been temporarily put on Budesonide, which thankfully give me some relief. I am hoping that once this is all over, I can finally get a long-term plan so I can try and get my life back! GetYourBellyOut CIC does an amazing job of bringing people together and helping people to feel supported. I really struggled at first, both when I had my stoma and then after my last op when I had all my scars, but joining #GetYourBellyOut has helped me to realise that I’m not alone, that my scars are something to be proud of, and reminds me I’m lucky to be alive! ____ *Details listed above may have changed since the story was first shared with #GetYourBellyOut to help raise awareness. Please leave a 💜 in the comments as a sign of your support for the brave individuals who share their experiences to make us all feel less alone in our journey with Inflammatory Bowel Disease. We have bold plans to grow GetYourBellyOut, so we can provide even greater support services, projects and ensure the patient voice is heard! If you’re in a position to help, please make a contribution, whether large or small, we would be most grateful! Details are listed on our website of how you can help 🥰

"When I was 13 years old, I was diagnosed with Ulcerative Colitis, after years of tests, medications, colonoscopies, X-rays, CT scans etc. In 2017, when I was 28 years old, I was told the only option left for me was to have a total colectomy, which means they removed my whole colon. I had also been diagnosed with liver disease due to the inflammation in my colon spreading to the bile ducts in my liver. It was in June 2018 that I had my second surgery, called a pan proctocolectomy, which means they removed all the rectal stump and my ileostomy is now a permanent fixture for me. After both of my operations, I had complications resulting in me being on life support, but now my recovery is going well, and I’m happy to be raising awareness for invisible illnesses such as Ulcerative Colitis and Crohn's Disease. My stoma saved my life, as well as many others, so we should wear our Stoma bags with pride!!" Bryce, you're the true definition of an IBD warrior! 💪 ____ *Details listed above may have changed since the story was first shared with #GetYourBellyOut to help raise awareness. Please leave a 💜 in the comments as a sign of your support for the brave individuals who share their experiences to make us all feel less alone in our journey with Inflammatory Bowel Disease. We have bold plans to grow GetYourBellyOut, so we can provide even greater support services, projects and ensure the patient voice is heard! If you’re in a position to help, please make a contribution, whether large or small, we would be most grateful! Details are listed on our website of how you can help 🥰

Inflammatory Bowel Disease affects not only the patient diagnosed with this illness but their whole network of family, friends & loved ones too 💜 We see you & appreciate all that you do 💜

*ATTENTION PLEASE* WORLD IBD DAY IS COMING!!!! 🎉 Will you be joining #GetYourBellyOut in supporting #WorldIBDday, which raises awareness of #Crohns Disease, Ulcerative #Colitis & Microscopic Colitis on the 19th of May? If so let your friends and family know by sharing this post and see if they will support it too 💜 #GetYourBellyOut

My #GetYourBellyOut story: Bethany My name is Beth and I was diagnosed with Ulcerative Colitis in 2013. Initially, I was going to the toilet multiple times a day and losing a lot of blood, so I went to the doctor, who sent me for a colonoscopy. I received a diagnosis and was sent away with a bag of Pentasa and enemas. I didn’t think more about it for the next two years. September 2015, I entered my first major flare. I was going to the toilet 20+ times a day, and was struggling to maintain a life outside the bathroom. I was taken into hospital for three weeks and pumped with IV steroids and Cyclosporine, which ultimately didn’t help. At the start of 2016, I was taken back into the hospital with sepsis. I was being sick multiple times a day and was told I needed several blood transfusions to keep my body going. Despite this, the steroids, the Cyclosporine and azathioprine I wasn’t getting better. March 2016, I was taken into the hospital for my longest stay yet. I was barely eating, weighed around 6 stone and I started losing all my hair. I was put on Infliximab and patiently waited for a miracle recovery that sadly never came. After several doses of Infliximab and no improvement in my condition my colon was removed on 29 April 2016 and ‘Stan’ my stoma was born. Sadly, in January 2018, after experiencing incredible pain, which meant I could barely sit down or walk; I was taken into hospital for 10 days with a huge perianal abscess and a serious case of sepsis. As it turns out, I had developed a fistula. I’ve had countless surgeries to try to heal the fistula and had a Seton in since 2018. I’m currently taking Humira and Azathioprine. The decision has been made to proceed with the Barbie bum surgery any day now! Due to the perianal disease, my diagnosis has now been changed from Ulcerative Colitis to Crohn’s disease and I plan to document my journey as I head into my next big challenge! Someone on my ward at the hospital told me about #GetYourBellyOut, so I have followed them since day one of my ileostomy surgery. The lady told me that the community was amazing and that I should join the Facebook group to get support. So, I joined straight away! #GetYourBellyOut is such an amazing place for people to come and discuss their experiences and just generally lift people’s spirits. Living with a chronic illness can be lonely and scary. I have often turned to the page when I need comfort or to read other people’s stories. Although I am not someone who will post or reply to people, I am very much reading all the posts and comments. I have taken such comfort from other people’s invaluable experiences. Having a community of people who have shared similar experiences is such a gift. ____ *Details listed above may have changed since the story was first shared with #GetYourBellyOut to help raise awareness. Please leave a 💜 in the comments as a sign of your support for the brave individuals who share their experiences of Inflammatory Bowel Disease.

"I felt proud walking around Newquay and doing the school run, ignoring the looks... My beautiful friend took this photo and has been such a support to me! As she took the photo, a lady came up to me and called me brave. When I said it was still new, she pointed to her dad and said, 'My dad has had his bag for 10 years!!' I hope this gives others the bravery to step out, even just a little. We have nothing to be ashamed of, and I wouldn't change it for the world!" 😍 Helen, we've no doubt that your gorgeous #GetYourBellyOut photo will inspire others with Crohn's Disease / Ulcerative Colitis / Microscopic Colitis / IBD right around the globe! 💜 ____ *Details listed above may have changed since the story was first shared with #GetYourBellyOut to help raise awareness. Please leave a 💜 in the comments as a sign of your support for the brave individuals who share their experiences to make us all feel less alone in our journey with Inflammatory Bowel Disease. We have bold plans to grow GetYourBellyOut, so we can provide even greater support services, projects and ensure the patient voice is heard! If you’re in a position to help, please make a contribution, whether large or small, we would be most grateful! Details are listed on our website of how you can help 🥰

Shout-out to the people who... 💜 Struggle with fatigue 💜 Function despite extreme pain 💜 Have invisible symptoms 💜 Hide their illness well 💜 Find it hard to cope but still get out of bed! 💜 Don't 'look sick' 💜 Deal with 'flareups' nobody knows about 💜 Fights a daily battle 💜 Endure things others simply don't understand

💜 Inflammatory Bowel Disease (IBD) is very different to Irritable Bowel Syndrome (IBS), though people easily confuse the two 🥴 (Living with any bowel disease can be challenging, so always be kind!)

Inflammatory bowel disease is as much of an emotional battle as it is a physical one. It's important that we keep talking about things! 💜

Leave a 💜 if you think there needs to be more awareness raised of Crohn's Disease / Ulcerative Colitis / Microscopic Colitis / IBD?

Leave a 💜 if you agree...

Inflammatory Bowel Disease (#Crohns Disease/ Ulcerative #Colitis / #IBD) is so much more than 'just a bathroom disease'. It's... - Pain - Urgency - Fatigue - Cramping - Fistulas (small connecting tunnels) - Diarrhoea - Strictures (narrowings) - Constipation - Passing blood - Nausea or vomiting - Mucus in stools (jelly-like strands) - Weight loss - Fevers - Anaemia (a lack of healthy red blood cells) - Mouth ulcers - Joint pain - Eye inflammation - Loss of appetite And so much more!

Often, people with Crohn's Disease / Ulcerative Colitis / Microscopic Colitis / Inflammatory Bowel Disease don't 'look sick' but that doesn't mean they aren't facing a challenging time behind closed doors! Leave a 💜 if you agree.

You may be feeling burnt out and discouraged, but you've made it this far, and we think that's really brave! 💜

One of the main challenges of living with Inflammatory Bowel Disease is the unpredictability of it all 💜

Up to 86% of Inflammatory Bowel Disease patients with active disease have fatigue 😴 BUT!!! 41 - 52% of IBD patients with mild to inactive disease also have fatigue 🤯😴 According to the Crohn's and Colitis Foundation 💜