Discussing a colostomy in a patient with rectal cancer

Sturdy and thickly-built, long since widowed, cheery in a sardonic sort of way, tough and opinionated, Flora’s European roots ran deep; she’d been an Italian farm girl, and she’d rather be in her garden than anywhere else. The only reason she agreed to come inside and go to the doctor was that her bowel movements had finally gotten too painful, and too bloody to ignore. Which she had been doing, for quite some time. Still, she made it clear seeing me was pretty low on her list of things she’d like to do. I liked her right off the bat: she said exactly what was on her mind, she treated me with no deference, but with an expectation of straight talk right back at her. Wishing not to turn away readers, suffice it to say everything that was visible and feelable about her anus had been taken over by an angry, florid and unprecedentedly (in my experience) large cancer. She wasn’t surprised when I told her what I thought was going on; she wasn’t happy with what I told her would be needed to take care of it.

There are two main types of ano-rectal cancer: squamous cell cancer derives from the skin cells at the anal opening, while adenocarcinoma arises within the lining of the bowel itself. In some cases, the former can be treated by radiation alone, which –although not free of side effects — is a generally nice thing for the patient. With adenocarcinoma, surgery is mandatory, with or without accompanying radiation and/or chemotherapy. In Flora’s case, it almost didn’t matter which kind it was, in terms of surgical decision: as large as it was, surgery was going to be needed at some point. It was easy enough to biopsy it: I just pinched off a clump with my fingers, and sent it to the lab. Meanwhile, I told her about colostomy.

In the majority of cases of cancer involving the colon, surgery can easily be done, and it typically involves removing the segment of bowel containing the tumor and sewing the ends back together; effect on bowel function is generally zero. Most people can have normal bowel movements even if over half the colon is removed; for the typical cancer operation, way less than that is taken. But after you’ve removed the cancerous part along with enough healthy bowel to assure complete removal, you need something downstream to sew to. When the cancer is in the anorectum, ain’t nothing left but the outside world. The operation is called abdominoperineal resection, and it’s a pretty big deal. You must divide the colon somewhere above the pelvic portion, then follow and free up the distal segment all the way through the pelvis, down to the deepest part. And at some point, with the patient’s legs up in stirrups, you cut an ellipse of skin around the anal opening and work back up to the pelvic part of the dissection. If tidiness is desirable in surgery, this is the antithesis. Working deep into the pelvis is physically hard: the bony hole through which you are working is unforgiving. I may be suited for surgery in other ways, but my hands are too damn big. In the pelvis, they cramp up. And direct visualization is difficult. Much of the work is done by feel, and using long instruments, the ends of which are sometimes out of view. Running along the sacrum is a plexus of fat veins which, because they adhere to the bone like a starfish on a rock, are extremely dangerous if they get to bleeding: you can’t encircle them with suture without the risk of causing more bleeding. But we didn’t get into all that yet. The main message is that the end of the colon comes out to the skin, permanently. Colostomy. And her case, it was going to be essential to have radiation and chemotherapy ahead of time. Healing of the perineum after AP resection is a worry under the best of circumstances. In a heavy lady, radiated before surgery, it was pretty much a guaranteed problem.

Flora was not happy. Her anger was intense but polite and controlled. “Doctor,” she said. “I’m going to die sooner or later, and it’s not going to be with a bag full of shit on my belly and a hole in my ass.” She started assembling her belongings and aiming toward the door. “Mrs. So-and-so, ” I said. “I know this is a lousy deal. But let’s talk about it and think about it some more. Believe it or not, a colostomy isn’t is bad as people think. You can do anything you want to do, and it won’t interfere. I promise.” There’s a lot we talked about, and it took more than one session; I actually looked forward to our meetings. They were testy but clear-headed and eye to eye. Our mutual respect grew with each encounter; at some level it felt like a game, the outcome of which was predetermined but which needed full playing out — assurance that each party knew the rules. Eventually she agreed to see the radiation and medical oncologists. I also arranged a visit with the colostomy nurse (enterostomal therapist). Our hospital had a really good one: she had an ostomy herself.

With cajoling and commiserating, she ultimately went for it. I saw her a few times during her pre-op treatments; she’d grouse about this and that, complain that no one but me listened to her, sighed and swore. But she kept on keeping on. And that enormous and ugly tumor, which I’ve studiously refrained from describing in vivid detail, regressed very impressively. So we scheduled surgery, after giving some time for the reaction to simmer down. (The dose of pre-op radiation is less than if it were given postop; and combining it with chemo has an additive effect, so you may see quite good shrinkage with a relatively small dose.)

Nothing, evidently, kept Flora from her enjoyment of food. She was no tinier when I operated than when I first met her. Getting a colostomy out though a thick abdominal wall isn’t easy. Fat in the pelvis makes the work no less tough, either. This happens to be one of the very few operations for which I order blood to be available. One and only one time in my career did I get into those veins, and it was a very close thing. In fact, I did something sort of unheard of: rather than trying to suture the veins and tear them further, I had the nurses scrounge some thumbtacks, (note the date of the article — I did this ten years earlier) cook them in the sterilizer; after which I threaded them through clot-promoting material like peppers on a shishkebab, and poked them through the veins into the sacral bone. Worked amazingly well. I say that to impress you: it didn’t happen to be Flora.

You just couldn’t keep Flora down. She wanted up. She wanted out of there. She walked and coughed and cooperated and did everything necessary to make a quick exit from the hospital; and she did just that. Like most patients, she made peace with her colostomy, figured out how to irrigate it (give an enema through the opening) so it emptied when she told it to, damn it. And went back to gardening in very short order. When she came in for visits, she’d bring a bag of green beans, or peas. Sometimes a perfect tomato. Always with a complaint about something, never letting whatever it was keep her from doing what she wanted. Long past the time I usually followed routine cancer patients (I figure they had plenty of docs and appointments, and made followup optional, after a time), she kept coming, year after year, at least once. She’d call and complain about life to my nurse; she’d ask for a call from me. And she’d always come in, too. I’d poke at her perineum, check her colostomy, feel her belly, get a couple of blood tests, and tell her she looked good for another year. Listen to her gripes, accept her bag of veggies.

Maybe five years later, Flora told me she was having trouble working in her garden. Her hip hurt too damn much. Damned if there wasn’t a single metastatic nodule in her pelvis. An orthopedist carved it out (I had to convince him it made sense — that he wasn’t administering futile care), filled the hole with glue and a prosthetic cup; she had more chemo and radiation, and went about her business. Kept coming in year after year, bearing veggies and gripes. A woman of the soil. To which she eventually returned, a few years after that. My nurse missed her calls, and I missed her stolid presence, grousing about this and that, always with just enough of a smile to let you know she loved her life.

Sid Schwab is a retired surgeon and author of Cutting Remarks: Insights and Recollections of a Surgeon.

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