This is a question that comes up from time to time. Why do I have to post pictures of it online? Do I do it for likes? For comments? For attention? Why do I not care having it out on display when I’m out and about in the summer?
After having a couple of videos and articles published about me with Ehlers Danlos Syndrome and a stoma, it’s natural for me to be intrigued and scroll through the comments. Although there are some very nice comments and people relating to it because they have/had an ostomy bag (which have really touched me) there are still plenty of negative ones saying horrible things. I used to be terrified to stand out and I always just wanted to blend in with everyone else when I was younger but when I had the surgery last year, I finally realised I didn’t need to blend in. Why should I? So I decided to own the bag, rather than let the bag own me.
So back to the question at hand; why do I ‘show it off’? People say it’s ‘nasty’, or ‘disgusting’ or that it’s ‘something that needs to be hidden’. I’ve even read a comment from someone saying he’d shoot himself if he had one. What kind of message does that send for people who have a stoma and are really struggling with it? A young boy, Seven Bridges (10 years old), took his own life in January 2019 because of bullying due to his colostomy bag. He was just 10 years old. Let that sink in. What were you doing at 10 years old? Were you running around in the garden or colouring pictures? Were you just living your childhood? That’s the kind of thing that he should have been doing, rather than feeling like he couldn’t cope.
This is why I post the pictures. This is why I want to spread awareness. This is why it’s important to do so. Anyone could need a stoma at any point in their life, whether it be from cancer, Crohns, Colitis, a digestive disorder, an accident or any other kind of disease. Despite this though, there still is a massive stigma around stomas, as if it’s the worst case scenario. I keep seeing articles spreading awareness accompanied with horrible trolls commenting and essentially cyber bullying the person the article is about. What are those trolls going to do if they need to have a stoma? Let me tell you a few facts about having a stoma/ostomy bag:
- When you wear a bag, you very rarely smell anything (I never do)
- Having one won’t harm your dating life and if it does, then it just shows that that person wasn’t right for you (my boyfriend has never judged me having my bag)
- Having a stoma bag does not make you unhygienic – we actually make sure everything is thoroughly hygienic to prevent any skin complications or infections
- It’s so much better to have one than being stuck in the toilet 24/7 or dead
The reason why a lot of ostomates spread awareness by taking photos is that it is more common than you think to have a stoma and we want stomas to be accepted rather than stigmatised. I can almost guarantee that you know someone who has/had a stoma and you just don’t know. Sure, they can be incredibly hard to get your head around at first but they do save lives and improve them for the better (for example, I can now eat food again! I am no longer on a liquid diet and no longer taking countless medication with countless trips to the toilet). We just hope that we can maybe help someone battling with the idea of having a stoma, as it is very daunting at first.
What if your child had one? Would you tell them to hide it from you and never talk about it? Would you never help them? How do you think they’d feel? Just the other day, I had an eye test and it turns out my optician’s son had one when he was only 2 days old because of a complication. So it isn’t just the elderly who have stomas. Would you love your baby any less because they have a ‘poo bag’ attached to their stomach? No, you wouldn’t (I hope).
I have said from the beginning of spreading awareness about this that, if I can help just one person, then it’ll all be worth it. Because no one should feel alone or feel as though they’re disgusting. If you have an ostomy bag, you shouldn’t be ashamed. You’ve been through a lot and you have come a long way, even if you do struggle having your stoma. If people saying horrible things, they’re the ones who should be ashamed.
Charlotte x
Charlotte Amy Louise 