When you find me running around naked outdoors, you will also find a 4-inch diameter decal attached to my pouch. If you think it reflects my sense of humor, you’d be right. Additionally, it unloads the social impact of the pouch as it conveys, “I know you’re looking at my pouch and that’s OK.”
Oddly enough, it’s also a drape, a cover — as in preventing the nice lady across from me in the hot tub from scrutinizing too closely the goings on within, as the opaque pouches lose much of their opacity when wet. But its primary role is as a sunshade. Both my surgeon and my ostomy nurse know of my attitude toward vitamin D collection and both have cautioned me about direct sunlight on the stoma itself as the conduit and stoma are fashioned from my own repurposed tissue never intended to see the light of day. Neither wants their patient to make medical history with the first sunburned stoma.
My next order of decals might include “Go ahead, light up. I did… for 40 years” for the smoker in a nearby lounge chair, or “My other bag is a Gucci” for the ladies, or one of increasing appeal to me… “Bladder cancer pisses me off.”
It doesn’t take an ostomate very long to develop a range of stock verbal responses to TSA comments, locker room observations, or inane bathroom humor.
The quickest is: “Yep, this is my bladder. Wanna see what’s in it?”
And: “I swapped my cancer, bladder, and prostate for this. Not a bad deal, huh?”
Or simply: “Yes, this is why I’m still alive.” And leave it at that.
Some exchanges require more, though, and I’m still seeking a satisfactory response. Twice in 2016, once in a Florida club and once on Playalinda Beach, I encountered a preschool boy, each with his mom. In both encounters, they just stopped, stared at it for a few seconds, then asked “What is that?
I mumbled something about how I got really sick, the doctor fixed it, and we should always listen to our mothers. Which was perhaps unfair to the moms involved, since they’d have to explain cancer on their own time. I hated to pass on a teaching moment, but all I could focus on was how precious and vulnerable a four-year-old is, ankle deep in the massive Atlantic, and how inappropriate any level of realism would be for him in context. His Mom commented she could see from his face he was already processing what he’d seen and heard.
Folks who comfortably wander among strangers or friends without a stitch have internalized some sense of “it is what it is” and then moved on. The ostomy community is about as far away from that as you can get, at least visually. Many fully come to terms with their situation, certainly on the gastro side, where the surgery often improves their daily lives significantly, but few would consider allowing anyone to see their appliance, ever.
I attend a support group based in a hospital in my area, and regarding the troublesome subject of body image, I spoke privately with the group leader, allowing there were experiences available that I could speak to about resolving image issues positively. I explained they involved the most accepting and tolerant subgroup in our society – nudists. He said he’d think about it but wanted to ‘set the stage’ prior to the discussion. That was a year ago, and he still seems reluctant even to call on me in a group setting. He appears as locked down as the majority, but I haven’t given up on him.
There are well over a million Americans wearing an ostomy appliance —colostomy, ileostomy, both temporary and permanent, and urostomy. In my naturist experience, I've seen numerous missing nipples, unequal breasts, missing limbs, skin issues, balance issues, eyeglasses, hearing aids, canes, braces, walkers, the chair bound, and miles of scars… but pouches? Five. Mine, a guy in Wisconsin, a guy in Indiana, the retired Delaware school super, and Jane, who wrote the “I’m A Kangaroo” story in N issue 33.4.
In my view pouches are trapping ostomates in their clothes, as in a normal distribution there would certainly be more than the five of us with one foot in the ostomy business and the other foot on a nude beach. Bladder cancer patients are being trapped in more than just their clothes. Consider this. Bladder cancer is the fifth most common cancer diagnosis today but ranks in the high 20’s in federal money per diagnosis for research.
The radical cystectomy/Ileal conduit urinary diversion surgery that extended my life in 2015 was pioneered in the late 1940s. Can you name another 70-year technical advance that’s still in front line use today? Granted, when a toileting issue comes up against a warm, soft, nurturing female breast in the political/fundraising environment, the winner will nearly always be obvious. But pouch wearers’ obsession with secrecy contributes to the inequity.
To advance your cause you need to be out there. Stealth advocacy is an oxymoron. And I long for the day when ‘body parts’ no longer need to compete with one another for cancer research dollars.
For this bagman, I don’t know a soul who deserves to be shielded from my reality. Many in the broader textile world could clearly benefit from the ‘mellow’ of the naturist community, but ostomates, in particular, could realize a unique freedom by adopting an “it is what it is” perspective from their naturist friends and neighbors.
I know I have. I’m out.