Ostomies get a really bad rap. Most people you ask about an ostomy will likely not even know what you’re talking about, and those that do will probably say something like “gross” or else feel sorry for you. I remember going to a doctor one time and was going through my medical history with the nurse and when I said I had an ostomy, she said, “Oh I’m sorry. ” And I was like, “I’m not!”
I hear people all of the time with Crohn’s disease and ulcerative colitis, myself included, complain about the stigma that comes along with having an inflammatory bowel disease. You have to deal with comments like, “You don’t look sick” or “Isn’t that where you have to go to the bathroom a lot?” And it’s true, there are a lot misconceptions that IBD is just a bad stomach ache or that it isn’t that bad just because you don’t match most people’s definition of “being sick.” But what frustrates me is that the same people who complain about being stigmatized for their bowel disease are the ones who are passing judgement on having an ostomy.
I can’t tell you how many times I have come across people who think that having an ostomy bag would be “the end of the world” or even worse, they’d “rather die” than have one (Full disclosure: The reason I started writing this post was because I had someone say that to me). Seriously, people? Having an ostomy sounds worse than death?
I am always the first to admit that I was absolutely against having to get an ostomy bag. I was convinced that running to the bathroom 8-15 times a day, having to wear large pads every day, sitting in my own filth for 20 minutes as I drove home after not being able to hold it in, and living with the risk of colon cancer in my future was totally worth it in order to not have an ostomy bag. I was wrong.
Now, I am not by any means saying that having your colon removed is for everyone. I’m also not saying that you shouldn’t do everything you can to hold on to your colon, if that’s what you feel is right for you, because God knows, I did. But if I knew all of the things that I know now, it wouldn’t have been nearly such a devastating decision.
I’m also not saying that if you’re living with an ostomy that you have to be totally OK with it all the time or think it is the best thing in the whole entire world. I’ll be the first to admit that it’s not always easy living with an ostomy. But I also realize that my ostomy saved my life and that having one does not make me gross or less of a person in any way.
Just like living with Crohn’s disease and ulcerative colitis, living with an ostomy is what you make of it. You’re, right, it’s not an ideal situation, but there are a lot of less than ideal situations in this life. And if you make the decision to live a full, beautiful life with an ostomy, then you can.
I feel like I have been fighting my whole life against assumptions and lack of information about Crohn’s disease. But I feel like I was not even close to prepared to deal with the stigma that I deal with regarding having an ostomy. So let me make a few things clear:
I am not a smelly old grandpa that everybody hides in the corner.
I did not have to throw out my entire wardrobe for over-sized, baggy sweats.
Nobody knows that I have an ostomy expect for the people I tell (which I guess in my case is everyone.)
There are no activities that I haven’t been able to do since getting an ostomy. In fact, as you know, it has given me the opportunity to do things that I wasn’t able to do before.
I am happier and healthier since getting my ostomy than I can ever remember being in the past.
I still feel sexy.
My point in all of this is to help people realize that there are a lot of unfair assumptions made about people. We all have something that we deal with, and whether yours is Crohn’s/colitis, diabetes, depression, anxiety, obesity, or whatever it is, people who don’t live with these conditions aren’t ever going to fully understand. So do your best to educate yourself. Actually talk to people who live with them about it – that’s something I never did until I had actually decided I had to have surgery. You know how difficult it is to live with the stigmas that are put on you, so don’t continue to perpetuate the stereotypes.