Words by Abi Scaife
Inflamatory Bowel Disease, or IBD, is not an illness that is talked about particularly often. As a society, we tend to be quite shy about anything concerning the toilet, or our bathroom habits (hence, calling them bathroom habits).
While you might not think that’s a big deal, and sometimes it isn’t, there is no doubt that there is a stigma here that we have to break. Enter, World IBD Day.
Charity Crohn’s and Colitis UK is a brilliant organisation dedicated to not only raising awareness of IBD but helping those who are diagnosed with the condition.
“It's not something that people necessarily know about,” explains Geraldine Cooper, of Crohn’s and Colitis UK. “There are lots of misconceptions about Inflamatory Bowel Disease, so World IBD Day is an opportunity for people to speak about what the conditions are, and to highlight the experiences of people living with these hidden conditions.”
One big misconception about IBD is that it’s just about having a bum tum - actually, it’s much, much bigger. Another thing is, it’s not a particularly rare illness, either; we just don’t speak about it all that often.
“The two main types of inflammatory bowel disease are Crohn's disease and Ulcerative Colitis,” says Geraldine. “They affect over half a million people here in the UK; around 200,000 with Crohn’s, and up to 300,000 with Colitis.
“Every year around 25,000 people in the UK are told that they have Inflammatory Bowel Disease.”
As well as speaking to Geraldine from Crohn’s and Colitis UK, Smiley News was able to catch up with Natalie-Amber, a model and influencer who was diagnosed with Crohn’s at the age of 14.
This came after years of misdiagnoses and doctors not understanding why she was so unwell, which culminated in some quite scary health issues before she was finally diagnosed with Crohn’s.
“I was rushed to hospital and I had two emergency surgeries,” says Natalie-Amber. “My parents were called into the room and told to prepare for the worst; they didn’t know if I’d make it through the night.”
Luckily, she did, though not without a large scar, and losing all but 35 cm of her small intestine. For context, the small intestine is around 5.5 metres, or 18 feet, long.
Natalie-Amber ended up with a stoma bag - which, essentially, means a surgeon made an opening in her stomach and brought her bowel to the outside. According to Crohn’s and Colitis UK, around 190,000 people in the UK have a stoma; while many are temporary, like Natalie-Amber’s, others are not.
After having her stoma removed, Natalie-Amber decided she wanted to help Crohn’s and Colitis UK through fundraising. She started by hosting a fashion show with clothes donated from local brands and performances from her friends, and now uses her platform to raise awareness.
“Now I’m really focused on trying to break stigmas and make a change in the industry, especially when it comes to models that have different body types.”
Natalie-Amber has been left with a large scar from her surgeries and has worked incredibly hard to feel comfortable in a bikini - something she encourages her followers to do, too.
“I have people from everywhere that will message and say [things] like ‘because of you [I’ve] now decided [I] want to wear a bikini or a crop top’ - they don't care that they have a scar or stoma anymore.”
But why is World IBD Day so important? Why do we need to raise awareness, and educate people about this illness?
“We want to break stigmas. We want to normalise it and educate - it's not just a poo problem,” explains Natalie-Amber. “That's just a part of Crohn's and Colitis. [World IBD Day] is to normalise [IBD] and to educate others on the importance of understanding it.”
Natalie-Amber shares a few very personal stories about times she has been turned away from public bathrooms in an emergency, even when she has shown her Crohn’s and Colitis UK ‘Can’t Wait’ card.
This card, designed by Crohn’s and Colitis UK and given to their members, is designed so that those with IBD can be given access to toilets in an emergency. They are to communicate the urgent medical need for the bathroom even in places where, for example, you must be a paying customer to use the toilets.
It is just one of the things that Crohn’s and Colitis UK does to help make things easier for those with IBD, but unfortunately, because of the lack of education on these subjects, it doesn’t always work.
“I had an episode a few years ago, I was alone, it was not long after my surgery,” Natalie-Amber shares, speaking of a time she tried to use her card at a very high-profile hotel in an emergency. “They wouldn't let me, they didn't [about] my card. It turned into an argument and they sent me down a dingy alley to a pub.”
Luckily, in this situation, the pub was more than happy to help her, and Natalie-Amber decided to use it as a teaching moment. After mentioning the issue to her followers, and leaving a review, the hotel got in touch with her and tried to make it right, and she insisted that she wouldn’t accept anything until they agreed to educate their staff.
“People often say that they get worried to use their card in case of stuff like that. That is why it's so important for big companies and restaurants and coffee shops to understand.”Though IBD is a very personal illness that affects everyone differently, perhaps the main thing that can be agreed upon is that changes everyone’s life. We aren’t all scientists, we don’t all need to understand the medical ins and outs of IBD, but with a little education, and a little understanding, we can help people like Natalie-Amber avoid situations like these.
As for what Natalie-Amber wants people to take from her story:
“I would just love for people to try to understand and just to be kind. Don't judge somebody by looking at them.”
To learn more about Crohn’s and Colitis and World IBD Day, you can visit their website here.
To see more from Natalie-Amber and hear more of her story, you can follow her on Instagram.
At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.
Crohn’s and Colitis UK. This charity helps to educate people about Inflamatory Bowel Disease and support those living with it. Support them here.
Diabetes UK. Diabetes UK are the leading charity for people living with diabetes in the UK. Their vision is a world where diabetes can do no harm. Learn more here.
Beacon. Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. Support them here.
This article aligns with the UN SDG Good Health and Wellbeing.
