For people living with different conditions affecting the bowel, open conversations can be the difference between accessing the right treatment and support or going without essential services.
Thanks to people sharing their personal experiences online, awareness of bowel conditions is increasing, but there is still a long way to go before people understand the true impact these can have. Sarah Sleet works for Crohn’s and Colitis UK, and understands the importance of reducing stigma.
“By understanding how serious this can be, people are able to get themselves healthcare treatment quickly enough to avoid more serious measures down the line,” highlights Sarah. “At the moment as a charity, we’re really trying to promote information around the symptoms of Crohn’s and Colitis and what people should look out for in order to give them the confidence to get help.”
For Crohn’s and Colitis, symptoms can include stomach pain, frequent diarrhoea and blood in stool, but not all have to be present.
“We’re seeing the younger generation using social media as a way to talk about their conditions, to show stoma bags as part of their treatment, and it’s a very positive thing,” enthuses Sarah. “When you see someone doing that on TikTok or Instagram or anywhere, it can give other people hope.”
Laura has Ehlers-Danlos syndrome (EDS) and due to this, she experiences slow bowel transit, she explains: “It basically means my bowel doesn’t push poo along properly so it can stay in the bowel and get more solid. On top of that, because it was allowed to go on for a long time I formed a pocket in my bowel which is called a rectocele.”
“I use it every day in order to go to the toilet,” highlights Laura. “It helps to push things along and give me consistency.”
For years, Laura has been faced with the stigma that surrounds conversations around bowel conditions and decided to take action.
“People don’t speak about it but we’re all humans and we have to get rid of waste, for me I need to be talking about these things because I go through these horrendous times with my health and if I don’t speak up then people think you’re living this normal life like everyone else,” expresses Laura. “The poo taboo is still such a big thing, but if I had never spoken up then it really would’ve been a life or death situation because eventually the pocket that had formed would perforate my bowel.”
Laura decided to create an Instagram page dedicated to open and empowering discussion about her condition, calling it @medical_ dazzlers_world: in the medical world, people with rare conditions are often referred to as zebras, and a group of zebras together is called a dazzle.
“I was worried that people would think ‘you look fine so why are you constantly moaning about this?’, so I decided to give an insight into what things can be like at times,” explains Laura. “Why should I feel like I have to keep all of that to myself?
“For myself and for people out there with similar conditions, I wanted to be open and maybe give a little look into what it’s like to have a hidden illness and honestly I didn’t realise how much of a positive impact it would have.”
Laura uses her Instagram to share her experiences and connect with other people who understand her day-to-day life, but she also utilises it as a platform to celebrate other people. Each Saturday she shares a submitted picture from a follower using #StrongButSuffering, helping to show other people that they’re not alone and that they can reach out for support from someone who understands.
By connecting with people online, Laura was able to meet Chloe who also uses the Qufora from MacGregor Healthcare.
“I remember Chloe putting a post up of her receiving supplies and thinking ‘my god there’s someone out there using the same things I do, this girl actually does the same as me’,” remembers Laura. “We started talking online and it was like we just aligned, it’s almost like we are the same person but we just live in different places.”
Laura and Chloe gave themselves the nickname the Qufora twins and when MacGregor Healthcare found out, they wanted to help the two women meet face-to-face.
“When you find people who understand and who you can relate to, you almost lean on them a little,” explains Laura. “When I got to meet her it was brilliant but it was also so emotional.
“I actually got to meet someone in the flesh who could completely relate to what I go through and it was honestly a bit overwhelming. The MacGregor Healthcare team organised everything for us and even got us both hotels so that we could take time to rest if we needed to.”
By sharing her experiences online and connecting with people who understand, Laura is able to see the positives in her every day life, and would encourage other people to speak out to find other people like them. She says: “Just because we’re poorly it doesn’t mean we’ve got to walk about with a sad face all of the time, I always try to get on with things even if it can be really hard sometimes.
“If anyone is struggling I’m always happy for people to reach out and there’s a whole community online now that is open and accepting.”