as small as a world and as large as alone

2:54am July 10, 2014

disabilityhistory:

People With Crohn’s Disease Are Posting Bikini Selfies Inspired By The Fearless Model 

Image description: 5 color of photos of people baring skin and showing their colostomy bags. The top two are white women wearing bikinis, the middle two are shirtless men, one of whom is ripped, and the bottom photo is a white woman with a noticeable scar beside her bag.

I wish there were more body, gender, and racial diversity, but it’s great that folks with Crohn’s/folks who have colostomy bags are feeling empowered to wear what they want and not feel like they have to hide part of their body.

I’d like to see similar selfies with tubies of all kinds – there’s lots of us out there with G-tubes, J-tubes, GJ-tubes, and G, J, and GJ buttons, that also show when we bare our midriffs, and a lot of people are ashamed and cover them up.  I know I’ve taken pictures before when I’m not wearing anything to cover them up, but I’d love to see lots of people do it in a big giant show of tubie pride.

There are all kinds of ostomies.  The one they’re talking about here is a colostomy.  There’s also cecostomies, gastrostomies, jejunostomies, gastrojejunostomies (that’s what I have), nephrostomies, urostomies, ureterostomies, vesicostomies, duodenostomies, ileostomies… basically there’s an ostomy for every possible useful place you can put a hole.  The hole is known as a stoma, regardless of where it’s put.  And usually there’s some kind of tube coming out of it.

Different holes look different.  Colostomies look to me a little like having an extra anus in a weird place.  My gastrojejunostomy looks like an extra belly button in a weird place, with a tube coming out of it.  They’re rarely as scary as people think the are.  I wouldn’t look at my stoma for weeks because I’d heard of people fainting when they first saw theirs, and when I finally looked it was like “What’s the big deal, it’s like a belly button with a tube in it?”

And the important thing about all these tubes?  They help us survive.  We are alive because someone put a hole in our body and routed a tube for it and is now using that tube for the purposes of getting something out of our body, putting something into our body, or both.  It’s just like an extension of our natural body parts.  There’s nothing that scary about it when it’s working properly, and it can be downright useful in ways you couldn’t imagine before you got one.  (If I’ve got painful stomach gas? Open the g-port to my tube, and the gas comes splurting out really fast, along with possibly some bile.  Gross, but effective.  I have a friend who can’t belch and I keep wishing she had medical need of a g-tube just so she could get some relief.  She has to deal with painful gas until it comes out the other end as a fart.)

I love my tube.  And I wish everyone who was willing, could do one big show of tubie pride and show pictures of ourselves in clothes that reveal our tubes.  And then have one or more pictures of ourselves consolidated on a website somewhere.  And then we could write our story to go with our pictures.  It would be open to anyone with any kind of tube, whether that’s a trach, a feeding tube, a colostomy, nephrostomy, whatever.  If it’s a tube it would belong on our site.  And the whole thing would be about learning to love our tubes, or how much our tubes have done for us, or learning to become comfortable with our appearance after getting a tube, and that kind of thing.

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