Among many, many who've needed it and accepted it, I've had two patients who refused colostomy. One is dead, the other alive and well. More than that: both eventually had colostomies, and each said, nearly identically, "If I'd known how easy it is, I'd never have refused."
No one likes the idea of a colostomy. When talking to a patient who needs one, I try to point out that there's nothing -- NOTHING -- a person who has one can't do. I list a few famous people who've had them, talk about the various ways to handle it. With enough education -- which, unless there's no time, always includes a visit ahead of time with an ostomy nurse -- people generally accept the idea and we move ahead. Not these guys, no frickin' way. I tried. I really did.
Step one in curing colon cancer is removing the portion of bowel that contains it, with some room on either side to be sure you're not leaving any tumor behind. Fairly early in my surgical life, it was learned that for rectal cancer, it's not necessary to give as wide a berth on the south side as had been believed: lymphatics and blood from the low rectum tend to flow upward, so if cancer cells were to spread locally beyond the obvious tumor, they'd be heading north. Less than an inch beyond a tumor in the deep pelvic part of the colon is considered safe as a point of division. If that leaves enough ano-rectum to sew to (staple to), you can re-attach the ends after removal, avoiding colostomy. People with tumors located pretty far into the pelvic confines have been able to have curative operations with re-attachment -- but it's not always possible to be sure ahead of time whether things will work out. You have to leave open the possibility that, in the name of safety -- in the name of choosing cure -- you might not be able to hook the ends together, and the patient will end up with a colostomy. No frickin' way, doc, these guys said. I'd rather die than have one. Period. Non-negotiable. Try as I might, educate till my brain was empty, there was no budging. So I operated anyway.
My rule of thumb (rule of finger) is that when the tumor is high enough that I can't feel it with my finger on rectal exam, I'll have enough room to get it out and hook the free ends up. In each of these men, it was barely beyond.
Patient A was in his forties, and his tumor was a big one. There's no question that, had he not refused, I'd have given him a colostomy: I could work my way past it, but not far enough within the safe-connect zone. I wanted to go further, but he'd given me no choice: I got a little bit beyond, removed that part of the rectum, and stapled it all back together. Patient B was late sixties, with a smaller tumor. In his case, we elected (I with some reluctance) to remove the tumor simply, transanally. Both men got local radiation: A got it pre-op, B post-op.
I followed Patient B very closely; Mr A came in for a while, and then disappeared. When B's tumor recurred a year or two later, I told him he was out of options: the remaining chance of cure was ano-rectal resection and permanent colostomy. Unhesitatingly, he agreed. Despite the prior radiation, he healed fine and never looked back (as it were.)
Patient A wasn't as lucky. When he re-appeared, he was in big trouble: the colostomy was because of impending obstruction. Not long after, his kidneys were obstructed, too. But before he died, he'd noted that the colostomy was nowhere near as bad as he'd thought it would be.
It may be apocryphal (if you're reading this, medblog-addict, maybe you could de-lurk and let us know): I've heard of doctors being sued for failing to talk someone into an operation. More properly, it was (so the story goes) for enumerating possible complications to the extent that the patient freaked out and refused, later to suffer the consequences of not having had the surgery. Short of tying him down and dragging him into the OR, I don't think there's anything more I could have done for Patient A. But it still bothers me. Mr B was glad to have had a couple of extra years without a stoma, and is cooking along just fine. I wish I knew the lesson.
Looking at comments on my previous post, and knowing from my own experiences, it's apparent that consent is a much cloudier issue than those who urge those forms upon us would have us think. Both for doctors, and patients. What we say, what they think we say; what they heard, what we think they heard -- it's as flimsy as a curtain of fog. When you're sick as hell, any consent you give is subject to the effects of the illness, maybe the drugs you're getting. Even when it's an operation planned well in advance, it still is questionable what "consent" really means. I've seen the fear-glazed eyes, whose opacity blocks words. Consent is just a concept, a hall of mirrors. It's vapor.
In that impossible best of all worlds, where people eat well and wars don't happen, where lawyers spend their time painting and planting flowers, all doctors are worthy of trust, and all patients trust them. Doctors, in other words, are like me. Patients are like you.
