*By roar I pretty much mean just listen to my intestinal deep grumbles…
Ok internet. I’m pissed. And I don’t just mean like…meh that angers me but I’m pissed off. In the last few months I have seen a lot of hatred among the IBD community towards each other, and specifically I mean two different cases of ostomates basically telling jpouchers to fuck off. I’m tired of holding my tongue and I’ve got some things to say about it.
I’ll make a list for you.
1. Whatever happened to just supporting each other? We’ve all fought horrific diseases and understand the journey we’ve all taken, so where does this divide come from? Its one of my missions to promote IBD awareness and a HUGE part of that is ostomy awareness. I love ostomates, why all of a sudden do I feel like the red headed step child of IBD now that I have a jpouch?
2. An ostomy is your choice, a jpouch was mine. Why have I seen ostomates putting down jpouchers for CHOOSING to have their takedown surgeries? Is this a simple lack of education or jealousy? Something else? I mean I understand many ostomates cannot have a jpouch, so your choices were different than mine. I don’t tell you what kinds of supplies you should be using because its different for everyone, just like the choice for a jpouch.
3. Jpouches fail. Frankly they fail more than I ever realized, but that still doesn’t mean that they all fail. To make blanket proclamations about “all jpouches” is completely asinine. Thats like saying all ostomates get strictures, or all ostomates will have a blockage. Sure its possible, but a guarantee? No way. I know an absurd amount of jpouchers, and they all have ran the gamut from happy/healthy, to sick, and even people with their pouches removed. I can safely say that in this amount, which again, is SO MANY, MOST are happy/healthy. Sure it may have taken some time to get there, but have you always been a happy/healthy ostomate? Doubtful. These diseases are tyrants, we all have to work to be where we are.
4. If you’ve never had a jpouch, shut your mouth about it. I had my ostomy for 15 months and that damn sure doesn’t make me an expert, but at least I’ve experienced it. Good and bad. Frankly, quit talking out of your stoma about things you’ll never experience.
5. Just because you have a blog, and people read it does not give you the right to spread completely false medical information. You are free to speak of your own experience until you’re blue in the face. But the second I start blogging about the statistics of epileptic seizures please stop reading. I don’t know a damn thing about that, and just because I have a lot of readers, it doesn’t give me the right to litter the internet and their screen with bullshit information.
6. Finally, it disgusts me that there is discrimination among people with IBD. Literally that is what it boils down to. Save your hate for the rest of the world, but our community should be based on love and support. Be angry with the people who don’t understand our lives and the way we live. Most importantly, instead of bad mouthing jpouchers, why don’t you show the world what a positive impact your ostomy has made on your life, and spend your time advocating for that instead of inflicting guilt on people who made other choices than you did.
Generally when I see completely barbaric posts on the internet, I tend to leave them alone, but this time I’m putting this moron on blast. Head on over to this tumblr blog and let this girl know how fantastically uninformed she is. Also keep your eye out for other anti-jpouchers, they aren’t that hard to uncover.