What is a time of joy for many women was my darkest hour.
My lover moved on top of me. He went to stroke my face (so lovely), and I wondered where he’d gotten the chocolate on his fingers and why he hadn’t shared. I turned my face to take a lick and realized, before tasting, that it wasn’t chocolate at all. No, not chocolate and somehow I had to find a way to tell my lover.
“I’m terribly sorry, but THE BAG HAS BROKEN.” The last bit was yelled with a high note of hysteria. One can only stay calm for so long about shit smearing in the middle of sex, especially when scat isn’t your thing.
I looked down and saw that the seal of the ostomy bag I was wearing had come loose.
After we realized what happened, we disentangled. He took a 15-minute scalding hot shower. I prayed for the earth to swallow me whole as I cleaned myself off.
The earth never swallowed me. Instead I wept in the shower, and when I came out I found he’d changed the sheets, turned on the "Shrek" DVD I play when I’m feeling at my lowest, and prepared a small snack and my anti-anxiety meds. I sorted through my (badly damaged, utterly mortified) feelings while he kept a safe, comfortable distance.
In a couple of hours, we were joking. In another day, we were hazarding sex again -– with me on top for a few sessions and for good measure. Now we laugh at the memory. When I told him I was writing about it for xoJane.com he chuckled, then commented, “The mental and emotional stuff was harder for you. I only had to take a shower.” This is the very heart of truth.
I won’t draw this out. Sex with an ostomy –- ileostomy, colostomy, or urostomy -– is a bit of a trick, but one easily accomplished with a cool partner. And the right frame of mind determines how you live your life with an ostomy.
What, you may ask, is an ostomy?
Well, it’s a surgical opening in the abdomen where the intestine (large or small) is brought up through the abdominal wall. Yes, ladies, my major intestine is hanging outside my body right next to my belly button. In all likelihood, it’s passing gas into the medical bag I wear to cover it.
Also I have a neurogenic bladder –- that means I can’t feel my bladder at all. I’m like a cat or a newborn baby: I spray any time, any place. I invest in incontinence companies and suggest new pads to my 89-year-old grandmother and her friends.
Oddly this particular defect, while endlessly troubling to me, is a major turn-on for every lover I’ve ever had post-surgery. People go wild when you’re fucking like monkeys and the girl starts gushing. I guess they figure it’s the lauded female ejaculation, and I’ve learned to suppress my urge to freak out or get all depressed when it happens. I usually have sex on a towel to be safe, but if there isn’t a towel handy, I can always spray the spot with vinegar to sterilize and deodorize the area.
Fundamentally, it is demoralizing to lose control over voluntary bodily functions you’ve taken for granted since potty training, but then, it’s demoralizing to get to the checkout counter and have your card declined –- just on a different scale.
Ultimately, neither event kills you and –- added bonus -– if you’re on the dating scene there is nothing more compelling than a hot, confident woman who is utterly unique because she has a secret soft spot and lifelong injury. It’s like catnip for powerful men, to be quite frank.
Having answered the question of sex, we can move on to the rest of life with an ostomy and continence issues. First, let's talk cost.
My ostomy supplies run about $250 per month and continence (bladder) supplies run about $20 a month, so I typically spend $250-300 a month to keep myself clean, uninfected and able to interact with society. It’s closer to $300, truth be told, and insurance doesn’t cover the expense -- it’s applied toward my deductible.
I recycle what I can and try not to be wasteful. I also collect extra supplies from hospitals and shop on eBay and Amazon (search for “ostomy products”). Often, when other patients have reversals or die, they or their families will put their products on the free market. There is no shame greater than running out of bags, so I don’t care.
Initially, the physical challenges are profound. To place an ostomy requires opening the abdomen and doing unnatural things to the intestines such as cutting them, tying them off, removing sections and pulling a loop of them through the abdominal wall where they are exposed to air. I’m not religious, but outside of the body is not where biology or God intended the intestine to be. Ever heard the term disembowelment? That’s what an intestinal ostomy is: partial, survivable disembowelment.
Ongoing care includes skin care –- the skin around the “stoma” or loop of intestine –- can become infected or grow thin with time. When I had an urostomy for my bladder (I peed through a plastic loop, I called it my penis snake), I got an infection. There is no sight like pus oozing from a hole in your pelvis that connects to your bladder through a length of plastic to fuck up an otherwise Percocet-happy day.
I still live a full life. Handbooks make a great deal of this and, in truth, it’s real. I’m here writing this article while planning a trip to Iceland for Christmas. Last year I went to China multiple times.
I’ve listened to other young women as they debate an ostomy in the face of Crohn’s or Ulcerative Colitis, and I always reassure them with photos of me in the tightest jeans I can find and form-fitting dresses. Unless I want someone to know what is going on, they don’t get to find out.
Any recovery or physical change is going to have mental and emotional challenges. But I know the alternative -– I remember the physical weakness, pain, starvation and misery of being without an ostomy. I have bad days, I have days of insecurity and frustration, but honestly, being a woman is a harder gig than being an ostomate.