Ostomies on display

I realized something recently about my ostomy. It’s actually something I’ve dealt with pretty much ever since I first got my ostomy, but I didn’t really understand what it meant until last week.

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So I get very self-conscious when my ostomy bag shows underneath my clothing. And honestly, it doesn’t happen that often, but I definitely have a few outfits where it does not hide very well beneath or I have times when the bag gets a little full and it puffs up. Now I realize that you may be thinking that this is not a particularly weird way to feel and is most likely anyone’s normal reaction when they have an ostomy. But let’s remember now… I pretty much tell everybody in the world that I have an ostomy.

I mean I blog about it, I put updates on Facebook/Twitter/Google+, it’s listed in my LinkedIn profile, I go to Crohn’s and/or ostomy related events as often as I can, and I talk about it pretty openly with just about anybody… so why am I so worried if someone can see that I have an ostomy? Let’s be honest, they probably already know that.

But I got that really self-conscious feeling the other day when I was wearing this shirt that did not hide my bag very well and I had to stop myself and ask that very question. That’s when it hit me: I’m not really worried about people knowing I have an ostomy. I’m worried that people will see it. But there’s more to it than that.

Probably my biggest goal/hurdle as an ostomy advocate is showing people that having an ostomy is not something to be scared of. It’s not something that is going to ruin your life or even change it as much as you might think. Prior to my surgery, I thought I was going to live my life in oversized, unfitted clothing. But I was wrong. I’ve said it before, but I have not thrown out one piece of clothing since I got my ostomy. I may have changed the way I wear things slightly, but there is nothing that I wore beforehand that I can’t wear now.

I want people who do not understand what having an ostomy means to realize that if someone wants to keep an ostomy hidden, then they can keep their ostomy hidden! It does not have to be on display. It is not something that everyone will notice and point out. But when I am walking around in a shirt that doesn’t hide it particularly well, I feel that it’s contradicting everything I have said. If people can see mine and then I try to explain that ostomies are easily kept private, they may come back with the fact that they’ve been able to see mine before. And that kind of concerns me.

Maybe I’m being silly. I probably am, but I do feel that pressure of being a representative of those living with an ostomy to those who may not even know what one is. I know I really shouldn’t worry about it so much, especially when I’ve realized a couple more things… First of all, it’s never usually as bad or as noticeable as you think. And secondly, most people are too wrapped up in their own worlds to even notice. (I don’t mean that to sound so cynical, just honest.) And on top of all of that, this is an easy fix. I will still wear that same shirt again, but I’ll do it a little differently next time. I feel like that’s another blog post for another day.

7 thoughts on “Ostomies on display

  1. Steph

    This was so honest and refreshing. Good to know that you can relate! I too feel like I am coming to terms with my ostomy the more I talk about it but hate for it to be seen under my clothes. There’s a lot to unpack there, and I hope you continue to talk about this!

    Reply
  2. Vegan Ostomy

    I had a similar experience the other day. On one of my first outings alone in a long time, I was getting groceries and I just felt so self-conscious about my “pouch bulge”, even through I had a winter jacket on to conceal most of that area.

    That’s never happened, and I’m quite open about my ostomy too, but it was unnerving to have that feeling.

    Perhaps I should have worn my Stealth Belt! 0_0

    Reply
  3. Carly

    I so agree! An ostomate can be as open or as discrete with their ostomy as they choose. It’s entirely up to them, though the difficulties and technicalities are still present.

    Thank you for such a refreshing post about embracing your own comfort level of ostomy display. It’s empowering to people to have options. Ryan (my husband who has an ileostomy) has found there are some situations where he likes to keep it more “hidden” (a wedding, swimming, etc) and other times he could care less (on a run, hanging with friends, etc).

    So glad to have found your amazing site!

    Carly
    reachingforfringe.blogspot.com

    Reply
    1. Stephanie Hughes Post author

      Thank you, Carly. It’s so wonderful to meet you. And I think you said all of that very well. Love your site, by the way!

      Reply
  4. Lori

    I never saw an ostomy or someone wearing a bag prior to my surgery. Although I know that I must have met ostomates. I wish I had seen one though. Then I would not feel like I’m the only one walking around with a bag.

    I don’t fret about my bag showing or bulging under my clothes. I wear a long tank under all my tops and most of my tops are of a longer style. Are they billowy, maternity-style, no. When I change at the gym, I don’t lock myself away but I don’t strut around either. I wouldn’t want to make someone feel uncomfortable.

    All that said, going back to my first paragraph, I hope if someone sees my bag it helps them to understand that we are normal, active people. That having an ostomy does not make us scary, deformed people. And having an ostomy isn’t a horrible thing that others shouldn’t see.

    Reply
  5. Andrew Farmer

    As someone who may soon have to have ostomy surgery…..how do you position the bag when wearing jeans? As a guy who pretty much only wears jeans/belt i not sure if it would go under or over the jeans?

    Reply
    1. Stephanie Hughes Post author

      Andrew, I usually put it under my jeans, for 2 reasons: first of all, it keeps it out of the way and makes sure it doesn’t show, secondly, it gives support for when the bag starts to fill up. I’m sure it’s a little different for guys, but I wear it under my jeans all of the time and usually have absolutely no issues.

      Reply

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