Why Ostomy Awareness is important to me
I’ve had quite the journey with my stoma; from absolutely hating my first one, 2007-2009, to appreciating my second one in 2014, to finally loving my current one which I had in 2018 due to a Jpouch excision.
The reason I hated my first one is probably because I knew so little about it. I’d been sick for just two weeks when I was diagnosed with a form of Inflammatory Bowel Disease (IBD) called Ulcerative Colitis. Less than a week after, I found out I was going to need emergency surgery to remove my colon and to give me an ileostomy. I’d never even heard of one, never mind seen one! It wasn’t something that I’d ever heard talked about, so I certainly didn’t want to talk about it either.
I had so many issues with leaks and burnt skin, that I didn’t even want to leave the house anymore. I was also very worried about people seeing or hearing it, so I dressed differently to cover it up. I struggled with my stoma alone. Then I struggled with my Jpouch and constant Pouchitis alone. That struggle was made worse because I wasn’t talking about it. I felt like I was the only person in the world going through it.
It was this frustration that drove me to start talking about it on Facebook. When I did, people I didn’t know thanked me for being so open. I also created a twitter account, which I used to use on the many nights I laid awake, in too much pain to sleep. I searched for people with IBD to talk to and to share experiences with.
Before I knew it, I had a large online community of people with IBD and ostomies, which led to the creation of a Facebook group. Over time, my online activity organically grew into what it is today. I started a blog and shared my journey there. I set up #IBDSuperHeroes, to raise awareness, support people, and to fundraise for Cure Crohn’s Colitis.
There are so many misconceptions about having a stoma, such as them being something only the elderly have, and that they smell and are dirty. Then there are many misconceptions about Inflammatory Bowel Diseases too. Talking poo is taboo, and it often makes people uncomfortable. The question is why, when we’re all doing it?! It is a natural bodily function!
When I found out that I was going to need a stoma again, I had a readymade support network where I could ask ANYTHING! I was able to discuss all of the things that I’d had issues with before, and I had so many tips and tricks and personal experiences from others, that I was confident this time would be better. I discovered the many different bag manufacturers that were available, and all of the supporting products to help with specific issues. I discovered ostomy underwear and full briefs! All of the issues that I’d had with the last one had made me think that I wouldn’t want to live like that again. I’d thought that they were just part of life with a stoma, but they weren’t!
If I hadn’t taken that first step into talking about my health online, I wouldn’t have had that support. If other people hadn’t been online, ready and willing to talk about it, I don’t think I would have coped. THAT is why raising awareness is so important. People I haven’t spoken to since school have popped up in my inbox with questions, just out of interest, or sometimes because they’re going through a diagnosis process themselves. For a long time, I thought no-one was reading my posts if it didn’t directly affect them, but the messages I’ve received prove me wrong! Maybe they don’t want to openly talk about it online. Maybe they don’t engage with my posts, but, they ARE getting through. If people only think of me in a time of need, that’s fine by me. I am happy to be that person.
There was nothing in the media about it when I had my first stoma, and I didn’t have easy access to the internet. It’s probably still not widely known about or accepted; I know I have a skewed view because I’m part of the community. But, if we keep sharing our story, and the stories of others, and that reaches just ONE person that it can help, then it’s worth it!
That’s why I am so passionate about what I do. That’s why I keep talking, even when I’m not certain it’s being heard.
Sahara was admitted to hospital and diagnosed with Ulcerative Colitis at the age of 19, after just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum, and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate.
Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.
She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.