After receiving my life-changing ileostomy operation in 2012, I vowed there and then that I would make my experience something that I shared with others in order to help them see that having a stoma is something positive. Yes, of course, it’s a daunting, even frightening situation to deal with for many, but I hope that through my posts on social media, I can bring a bit of hope and motivation to people who are struggling.
My inspiration
Social media has been my inspiration. From my very first blog for Pelican Healthcare shortly after I left hospital, I began to realise how important it is to share a positive story, and just how powerful social media is if you have a message to put out there. I had merely jotted down my emotional response to my IBD and my operation and reflected on how it had turned my life around; now people began to show a real interest in finding out more.
A voice for the nation
A young journalist called Chad who was working for the South Wales Evening Post at the time read the blog and, having been diagnosed with Ulcerative Colitis himself, contacted me to ask if I would be willing to give an interview. Of course, I agreed, then a photographer arrived at the house as an appropriate photograph to accompany the article was very important. Following the article in the newspaper, a radio interview was scheduled for both of us to talk with Jason Mohammed on his Radio Wales show. I began to see how there was an upsurge of interest in this topic – this was amazing as the subject of stomas, colostomy bags, and poo had been a real taboo forever!
It began with Twitter…
I began to share my thoughts and links to articles I’d been involved with on Twitter. At the time, Twitter was “the” platform to be on if you like; it reached the most people and I could raise a lot of awareness across the world by posting there every day. Following this, other social media platforms began to evolve so I embraced Facebook and Twitter where I was able to share my stoma story and the journey I am continuing with even more people. Then people from across the globe began to interact with me sharing their own stories – many had fears and doubts, some were about to embark on life with a stoma and were struggling emotionally, in pain, and simply concerned about what their life might become. It brought home to me how having a positive outlook and being committed to spreading that positivity was like a mission. I always welcome the opportunity to spread my positivity; I am proud that I have been able to help so many people overcome their challenges to some degree simply by having a “chat”.
Modern approaches
Today I am a total fan of TikTok. I still post on other platforms but TikTok definitely has the furthest reach worldwide. I post a positive greeting first thing every morning that always gets a great response, then I post whenever I can throughout the day involving all sorts of people I meet during my shift. I recently had a message from a lady in Australia who said she liked my videos and that she found my posts inspiring. I was able to have a chat with her before she went to the operating theatre to have her stoma surgery, and I was able to give her some support and hope for a better future – all as a result of watching my TikTok videos.
Everyone’s stoma journey is different. I have recently experienced a few issues in work, mainly owing to changes that are likely to impact negatively on my personal routines relating to my ostomy. It has been stressful to say the least, but I’ve taken some time out to regroup and think about my options moving forward. I have been determined to maintain my positive presence on social media, however, as being able to share my positivity keeps me positive in myself. Society is now in a much better place to accept talk and discussion about living with an ostomy; I believe I have a responsibility to be out there reminding people that life is precious and to be lived to the full (with or without a stoma, of course).