Invisible Illness and Social Media - Ben Raybould

Invisible Illness and Social Media - Ben Raybould

Hi everyone my name is Ben, I’m 37, a father, husband, biology teacher and an active member of the Instagram IBD and stoma communities under the name @stomadiaries. I was diagnosed with Crohn’s Colitis aged 24 and held that diagnosis between 2009-2022 which was then revised to Crohn’s Disease after biopsies from surgery in the summer of 2022.


For years I felt like I was some sort of strange exception and that I didn’t belong in the IBD community as my story was nothing as serious as those that I did very infrequently see in the press in those early days. My disease was mild and the lower level drugs worked well for me for many years keeping me in remission. I even managed to ween off all medication for a year or so. But as is typical with Crohn’s this wasn’t to remain my status quo and things gradually began to progress, I tried different drugs and settled on Pentasa mesalazine, Azathioprine and occasional doses of Prednisolone when required. I managed to maintain remission again (on and off with small blips) for another few years. Then around the time of the pandemic things started to get worse. My urgency and frequency to visit the porcelain throne increased as did the abdominal pain. Then came an increase in extra intestinal manifestations such as fatigue, achy/stiff joints and skin issues. My usual drugs all started to fail me and only high doses of steroids would help to relieve the symptoms. I had taken too many courses of steroids so onto biologics I went. After trying both Adalimumab and Ustekinumab with no effect it was decided that my best option for a better quality of life was surgery. After a CT scan which discovered inflammation and narrowing in my ileum we fixed on a subtotal colectomy and end ileostomy surgery. Now 7 months on I am about to undergo my chosen course of the completion surgery (proctocolectomy).


Invisible illness can be challenging, as sometimes it is really hard to fully express how you are feeling to others who live without one. It can be hard for them to understand when once again you ‘flake out’ or decline an offer/invite when you actually look relatively fine. Being open and honest with people is your best tool around this aspect.


The YouTube videos of other people helped me come to terms with what was going to happen to me, I needed to see the dark and light sides of what I was about to go through and life with afterwards. Since surgery, awesome podcasts such as the Chatting sh*t with Ostique series, It Takes Guts and Stoma Talk have helped me to normalise my experiences and feelings. The Instagram community has become incredibly important to me. I have learnt so much from so many people, they have opened my eyes to body positivity, self-confidence, what is normal and not with a stoma and provided crucial advice on ostomy products that I probably wouldn’t have otherwise tried. In return I have felt so much personal pride by being able to help and inspire others at earlier stages of the same journey.


When starting my Instagram page, I wanted to reach out to other people who fit into one or both of two categories 1. Those who had a milder and less life threatening form of the disease who might also feel like they didn’t belong or were not valid in the community (I now know that this is never the case the whole IBD and stoma communities are so inclusive) 2. People who were about to undergo ostomy surgery and wanted a glimpse into the reality. Essentially I wanted to use my experiences for a positive outcome, to try to help others. I also wanted to get some help and advice for myself from those further along the journey.


I do think social media can help bring awareness about stoma life into the mainstream, and I think there are many amazing people out there doing just that, particularly some of the brave women showing that having a stoma doesn’t stop you from being confident, attractive or from having a personal positive body image. The challenge as I see it is how does an average guy with a ‘dad bod’ or someone no longer in the glory days of their teens or twenties also do this. How can any of us effectively reach people with the correct message and how can we all feel confident to share our experiences without fear of online trolls?


People could better educate themselves on life with a stoma by: Using the information from charities such as Crohn’s and Colitis UK or Colostomy UK, search for ostomy support companies such as Ostique or Comfizz and read through their articles, blogs and social media content. For those without a stoma or unlikely to need one then social media is a great way to gain some understanding of the positive impact that having a stoma can have on people’s lives.


To my younger self I would say: Never let yourself feel isolated or invalid, search out for people in a similar circumstance who can understand what you are going through. Don’t be afraid to open your mind and understanding of what can happen with this disease and what the treatments involve, but equally don’t assume that this is your inevitable endpoint, we are all different and this disease sits on a huge spectrum.


To any new Ostomates I would say: Be aware that your stoma and your body will change and you may need to trial different products, don’t be afraid of this and see it as a possibility of securing an even more comfortable life. Be open with your experiences with those around you; family, friends and colleagues. The more at ease you are with talking about it, and there is nothing to be embarrassed or ashamed about, the more people in your life will understand what you are going through and will know when they need to step in to help if necessary

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