To Spigot or Not to Spigot

By Linda Ryan

Illustration by Mark H. Adams

I’m sitting on an exam table in a drafty little paper gown and knee socks, two feet away from some guy in a white coat who has just told me no man would ever get near me with that THING on my side.

I bet you think I’ve got something fairly scary growing out of my body. Maybe an extra head, a third eyeball? Perhaps an outlet for small appliances?

No, no, no. Sorry to disappoint.

What he was actually referring to was a hole about the size of a dime, covered by something that looks a lot like a sandwich bag with a nozzle.

I pee through a hole in my stomach. I was born with spina bifida, which tends to mangle your spinal cord — in my case, including the bit that controlled my entire urinary tract. So when I was 3 years old, a surgeon rerouted the tract to what they call an “ileal conduit,” a little hole. I stick on a bit of medical Tupperware, attach a bag every week or two and it helps prevent slow leaks, infection and kidney failure.

This has its advantages. None of my skin ever touches public bathroom seats and I don’t come in contact with any bodily fluids — mine or anyone else’s. This is invaluable at, say, a Mexican flea market where they aren’t much on luxury indoor plumbing or toilet paper.

And there I was in my paper gown, after 12 years of my odd but useful little diversion, midway through a bunch of tests, with some urologist trying to give me the “you’re a big girl now” speech, doing his best to convince me I needed more surgery, a new alteration, because I was “getting older.” Soon, he said, it would be time for me to develop more “adult” relationships. But, he assured me, in my current state such relationships would be impossible.

I was reluctant about the idea of more surgery. I was OK with my system the way it was. In an effort to get me to agree to this potential new system, the urologist tried to scare me with infection threats, skin breakdown, whatever. And when that didn’t work, he decided to see if he could play with my head a little, by telling me how incredibly ugly my urostomy was.

According to him, the only solution was more surgery, to install what I call “the spigot.” In more medical terms, he wanted an indwelling catheter permanently implanted at the neck of my mostly unused bladder.

I actually went through several rather undignified medical procedures to test the feasibility of this option because, being young and virginal, I was stupid enough to believe the doctor once he got into my head. It turns out that since my bladder had not been used since I was 3, it was tiny — it held only two ounces. I don’t think you want to hear how I know that, but here goes anyway. A tube was inserted into my bladder, which then was filled to capacity with air, held there for a painful eternity — I assume that is what it feels like to really need to pee — and then measured on it’s way out. Wow, did that suck. Or, more literally, blow.

Although my bladder could only hold two ounces, and an indwelling catheter is a direct pathway to infection, my urologist thought it was a great idea. Personally I thought it would be more distracting in a romantic encounter to have a spigot in the naughty bits rather than a bag on my side well away from all the fun parts.

I’m certain now that I’m right, but the uncertainty I felt based on my urologist’s proclamation that no man would ever want to get near me affected my romantic life for more years than I care to admit. I avoided well into adulthood close relationships with men because I was afraid the urologist was right, and I really did not want my fear verified.

It’s now been 20 years since I had to make the spigot decision. I’ve been married eight years. Until I wrote this, I still hadn’t discussed with my husband if he finds my urinary system a turn-off. I was still afraid I might not get the answer I was hoping for. It turns out he doesn’t mind at all and he agrees that a faucet in the naughty bits would be far more of a distraction than the bag on my side.

It took a long time to shake what that long-ago doctor told me. I can say with all honesty that I finally see my urinary system is perfectly acceptable and I can now discuss its existence without shame or fear. But I also remember all the outfits I didn’t buy because the bag might show, the guys I didn’t date, the huge dent in my self-esteem, which, otherwise, was in good shape. And the most obvious lingering harm: I was afraid to ask the man I married, who I love and loves me, if he thought “that thing” was ugly because I was so afraid of his answer.

Far too much emphasis is put on how, when and where we pee. I carefully guarded my stoma secret most of my life. I felt ashamed that I wasn’t seen as acceptable to the world the way I am. I’m sure I’ve spent more time in my life worrying about peeing than I’ll spend actually doing so.

So here’s my message to the whole world: I like myself just fine this way. The people I love like me just fine this way. If you’ve got a problem with it, that’s YOUR problem. Get over it, or keep it to yourself. I wish I’d known and said that to the urologist 20 years ago. I didn’t. But at least I know it now.

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