February 27, 2001
The fog was lifting, and my wife’s voice echoed thinly across the recovery room. “The surgery was successful,” she said. “The operation lasted over six hours.”
I cut to the chase. “Did they do an ileostomy?”
She paused. “Yes. It will be temporary.”
She now tells me I was crestfallen. I was too drugged up to recall with clarity, but certainly it was a worst-fear-realized moment. This would mean the bag. The Bag. Everyone understands what that means.
It was just below my ribs. Even with clothes on, I felt naked. I saw the bulge as blinking neon. It became my scarlet letter. When talking to friends, the question always came: Do you have the bag? The tone betrayed a common horror at the very idea. It was not just this 52-year-old journalist. It was everyone.
An ileostomy comes out of the ileum, which is the bottom of the small intestine, just above the colon. A colostomy, the more common procedure, comes out of the body farther down, emerging from the large intestine. My ileostomy carried waste from my intestine straight into this bag. The device was there to allow my colon, the site of the cancer surgery, to heal properly.
I had ruefully told a friend only weeks earlier that when I awoke from surgery, I would not ask if I was going to live. Instead, I would just inquire if I had the bag. My interest in the life and death issue, I said, depended on the answer to the first question.
Now I had my answer, a tube of flesh protruding from my belly. The surgeon had simply cut my small intestine and left the top hanging out when he sewed me up from the surgery. An appliance fit snugly over it.
The cancer now took a back seat in my head. I had bigger fish to fry. This doctor said this new arrangement would last only three months. Right. My medical history was too full of surprises to assume anything.
Eleven days later, after only a quick lesson in managing the ileostomy, I was released in the custody of my wife, who confidently predicted we would tame this beast. I wasn’t so sure.
Emptying the bag was to dominate my anxieties for a while.
“Just sit on the back of the toilet seat,” a nurse had instructed, “and lean forward and down.” I missed only once. I had been told I could shower, that the bag was sealed tight and waterproof when the clip was attached. I was too weak from the surgery to test that theory for a while.
But I did stand naked and very still in the bathroom to stare into the mirror. I was shocked. The bag just hung there. It seemed big. Clearly the battleground would not be the bag but my head.
I felt claustrophobic and carefully avoided mirrors after that.
The temporary ileostomy is a good procedure. Life after surgery can carry on almost normally while the colon heals, but immediately I felt diminished, and almost emasculated. A man should not be hanging this purse at his waist. A rabbit pelt from a leather belt, perhaps. Next to his hunting knife. A sissy pouch for transporting that which everyone else turns a back to? Never.
As for a sense of my own sexuality, forget it. I instantly became asexual.
There is no human walking the earth who does not share this function of the body. Yet we seem to regard it with shame. I was sentenced to see, indeed to stare, at what my body was producing. I wondered why this plastic bag had to be transparent. This seems a cruelty, as if our faces must be rubbed in our bad behavior, like pushing a dog’s nose into his overnight misconduct.
Perhaps my vulnerability forced this narcissistic response. I was uncharacteristically obsessed with my own body, reacting foolishly, I knew. This was crazy.
A temporary ileostomy seems a small price to pay for status as a cancer survivor. Many are less fortunate than I and do not survive, or they wear their dreaded bags for the rest of their lives.
Yet self-esteem is a potent concern for anyone, and emotion cannot be denied. I suspect that by necessity, my adjustment would have been healthier if I knew the bag was to be permanent.
Questions and comments from friends have revealed ignorance and discomfort. I have gone out of my way to be open and honest about my plumbing. That has been part of my therapy.
“Where does the urine go?” some would ask. “It’s the toilet, stupid,” I responded. That does not change with this surgery. People do not really want to know about this subject. It remains taboo. Perhaps they want to hear just a little, then block their ears and run.
Colon cancer is the most common reason for the bag, though diverticulitis and other inflammatory and hereditary bowel diseases create the same need. The numbers are increasing. The bags are everywhere. There is nowhere to hide. Colon cancer screening remains the most effective weapon against this self-proclaimed indignity.
My plumbing party was held at a local hospital this month. My intestines are back in my body.
I celebrate my return to anatomical normalcy, mindful that my emotional response may have been less than normal. Still, I am pleased to have put my plumbing behind me.