Content warning: sexual content, emotional abuse
I can’t figure out why I’m so nervous to show my Tinder date my ostomy.
It’s our fifth date, and things are getting serious. Not, like, relationship serious yet, I don’t think? But last night, on our fourth date, I could tell that he wanted something.
I don’t blame him; he’s a heterosexual man, and we had been cuddling in the guest bedroom of the place I was house-sitting for. I could feel him stiffening against me even though we were both fully clothed, and he was looking at me with this grin on his face like he knew I was thinking the same thing.
Reflexively, I’d squirmed away, still reeling from my most recent Tinder “relationship.”
The guy had been small, in every possible sense of the word: He called me fat, was rude to everyone and always became super irritable after sex. But I put up with it because I had an ostomy, acne, depression, low self-esteem. So I accepted it as what I thought I deserved.
But then, this gorgeous man came out of nowhere, claiming he wanted to “prove me wrong” that all of the decent men were taken. (Yes, I really put that in my Tinder bio.)
I didn’t know it at the time, but that man happened to be my soulmate.
I told him about my ostomy shortly after we arranged our first date, plain and simple. When other ostomates ask me, as a support group leader, how to tell someone about their ostomy, I tell them to frame it in a positive way because others are more likely to react positively if you create that expectation. If you phrase it like, “Yeah, I had this terrible illness and now I have this terrible bag, and I just have to deal with it,” they probably will not be as receptive as if you say, “My ostomy gave me my life back, and I wouldn’t be here without it!”
I told him about my advocacy, making sure he was aware of how big a part of my life it is. He understood and was fine with it. To my disappointment, he didn’t ask any questions (he since explained that he looked it up, to my horror). He was much more interested in my Starbucks employee stories than my complicated health history.
This morning, after the cuddling incident the night before, he texted me saying that he was ready to see my ostomy — that he was comfortable with it as long as I was. That it wasn’t a big deal.
That’s how I found myself pacing back and forth in the kitchen of the same residence I’m house-sitting for, waiting for him to arrive at any minute. I brought with me one of my supply samples, a bag and the wafer that it clips onto so that he could see how it all worked.
Some of my past boyfriends had been afraid of it, that they would accidentally “break it” or pull it off. I wanted to show him, before anything physical happened, that I’m not fragile.
Sex with an ostomy goes like this:
The appliance system I wear is a closed-end two-piece, which means that I can remove the bag part from the wafer to empty it. I always empty before sex so that it’s as flat as possible. My ostomy is also extremely low, so I have to move it horizontally a bit when I clip the bag back on so that it doesn’t get in the way.
In the past, I’d duct-tape-origami it into a tiny cap, so it would be single-use. I’ve used bobby pins to pin down the sides to make it smaller and less bulky, even though the specific system I use is on the smaller side for the average pouch.
I can’t have sex without a bag on; it would be very unpleasant and, frankly, messy.
There are special underwear and wraps you can purchase to conceal your ostomy, keep it from flopping around — even lacey ones to make you feel more comfortable and confident. There’s ostomy lingerie with built-in support bands, shapewear briefs that can be custom-fit. There is an entire industry of ostomy-specific garments such as these, tailored to make ostomates feel as confident and limitless as possible post-surgery.
Personally, I just like to do it the old-fashioned way, with nothing extra on.
People with disabilities are constantly asexualized, and it really bothers me. Some of the most sexually adventurous people I know are disabled or chronically ill.
In fact, I was recently talking to another disabled friend about this, and she brought to my attention a phenomenon in which our internalized ableism essentially tells us, “You are disabled, and therefore ugly, so your gene pool is reduced to people with ‘ugly’ traits.”
She then illustrated how this would explain why I chose such an abusive partner before (and knowingly stayed with him for almost three entire months), right after a partner who also had an ostomy, which was right after another person with a disability from my disabled teens summer camp.
It’s not a “type” thing — it’s an ableism thing; and according to my internalized ableism, my sexual prowess was limited to people with similar, physically or morally, subjectively “ugly” traits. This is something I’ve been working to dismantle within myself, to recognize myself and other people with disabilities as beautiful, sexually liberated beings.
I like to think I have as much sex as your average 22-year-old, if not more. Honestly, you’d be surprised how much sex people with ostomies have.
My boyfriend and I have now been together for almost four years. To quote from my favorite novel, “The Perks of Being a Wallflower,” “We accept the love we think we deserve.”
At the United Ostomy Associations of America National Conference in 2019, we had meetings almost daily talking about sex. Veteran ostomates (such as myself) would answer questions for newbies about positions to try or how to avoid embarrassing situations. It was a safe space, where everyone asked their uncomfortable questions without fear of judgment.
I can’t wait to have my boyfriend there with me for the next one.