Receiving a diagnosis of Crohn’s or Colitis is a moment none of us expect.
Bryony and Lo
Founders of Bad Gut Club
It’s completely overwhelming. Whilst you wobble away from the consultant, quickly googling ‘what is IBD?’ and dealing with a tsunami of emotions, you open social media. This is the moment you realise you are not alone.
You are one of an estimated 500,000 people who live with one of these conditions in the UK and you see the squares of Instagram bursting with stories. You realise you are now part of a club you never expected.
Introducing Bad Gut Club
We know what it’s like. We’ve both been there. Living with Crohn’s and talking about it online is now part of our daily lives, but it wasn’t always this way. At first, we both found it difficult to find people online who spoke to our Crohn’s journeys. This is what motivated us to create our own online advocacy spaces for people with Crohn’s and Colitis. In the past four years, social media has provided an essential place for sharing these stories and connecting with others.
Whilst we have both greatly benefited from this, we also found that there were many stories around these conditions that were not getting time in the spotlight. After chatting on direct messaging and a few excitable zoom calls, Bad Gut Club was born. A brand-new community for good people with bad guts. A wholly inclusive space for all our stories and experiences.
Our own Crohn’s stories could not be more different – evidence alone of just how individual these conditions really are.
I was diagnosed with Crohn’s Disease at the age of four.
Bryony
Living with Crohn's
Dial-up had only been knocking around for a few years, so it’s safe to say social media was not a thing. Throughout my childhood I experienced debilitating bleeding, pain, diarrhoea, weight loss and spent more time in hospital than anywhere else. After many years of medications, at the age of twelve I had the majority of my large intestine removed and an ileostomy formed. At sixteen I had my stoma reversed and continued on biologics.
Crohn’s has truly shaped who I am but finding the words to talk about it did not come easily. Opening up about my journey in my early twenties was one of the most pivotal moments in my life, and talking about it online was the next step for me. Through my work as a journalist I have written about Crohn’s and Colitis for Huff Post, Metro and most recently produced and presented a short documentary called ‘But You Don’t Look Sick’ for the BBC. Writing and producing for such large publications means I have had the opportunity to hear viewpoints from every corner of the Crohn’s and Colitis community.
It was this that made it crystal clear to me that there was a need for a new space that was truly all encompassing."
I was diagnosed with Crohn’s Disease in 2015.
Lo
Living with Crohn's
"Before my diagnosis, I'd spent months feeling embarrassed about my symptoms and putting them down to stress. At the time, I was going to the toilet nearly twenty times a day, passing blood in every bowel movement and being sick frequently. I remember not wanting to talk to a doctor about poo and so I put off seeing one until my symptoms were prohibiting me from enjoying my life as I knew it. Fast forward through many doctors’ appointments and a referral for a bowel cancer screening, I was finally booked in for a colonoscopy which confirmed my Crohn’s diagnosis.
I felt a huge sense of relief that I was not only able to take control of my life again, but that I was able to put a name to my condition. Through my constant Googling of ‘IBD blogs’ and coming up short every time, I decided to launch my own platform, Gut Instinct. This has since been featured on platforms such as UniLad, BBC Radio 1Xtra and Metro but also inspired a new series of video content called Stomach Stories. I recorded these with other members of the Crohn’s and Colitis community during lockdown.
It was hearing more of these stories that made me realise how needed a more inclusive conversation around life with Crohn’s or Colitis is.
BAD GUT FEST
We’re kicking off the launch of Bad Gut Club with our first ever event; BAD GUT FEST.
On Sunday 28th March we will be hosting a day long virtual festival covering a wide range of topics. This includes remission, medication, diet and lifestyle, managing a career, mental health, surgery and so much more. We have a variety of incredible speakers who will be sharing their stories and we’re finishing the day with a ‘cocktail party’ to meet other people from the community.
The tickets are free with a voluntary donation to Crohn’s & Colitis UK and every session is optional. This means that as a festivalgoer you can dip in and out of as many or as little as you wish, although unfortunately we can’t dish out wristbands.
The overall goal of Bad Gut Club is to leave no corner of representation and inclusion uncovered, and so we are always listening and learning. We’d love to hear from you if you’ve got ideas and we really, really hope to see you at BAD GUT FEST."
