No Frickin' Way, Doc!

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.

Memorable patients: part five

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 (better than the best, Dr Charles). 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.

Memorable patients: part one

I got the call from the ER because I was the "no-doc" surgeon, meaning I was the guy to call when a patient showed up needing a surgeon, and who had no primary care doc to direct the referral. Usually it meant trouble. A drunk who smashed his car and himself, possibly others. Stab-wound, gun-shot. People who don't have their own doctors include more than those down on their luck; not all of them are nice. So when the ER doc calls and starts with "You're the no-doc surgeon, right?" it raises hackles.

"Got an acute abdomen down here. Older lady, goes to Seattle for her care, comes in looking real bad." Jesus, I'm thinking. We're not good enough here for her elective care, but when the shit hits the fan, she takes a shot at anyone? Little did I know. About the shit, I mean.

Gotta admit, it's annoying. Turns out this lady had had innumberable orthopedic operations for horrible arthritis. New joints, fusions. Infections, removal of joints. So why not call her docs in Seattle, if they're so great? Such were my thoughts, having to leave an office full of patients and head to the hospital.

She was, indeed, sick as hell. Low blood pressure, rapid pulse, flushed, feverish, not entirely coherent. And her belly felt like stone: a rigid abdomen is pretty much a sine qua non of something real bad going on. No need for a lot of fancy xrays: check her cardiogram, blood work, call the OR, fill her back up with lots of IV fluids, cover her with antibiotics, get her upstairs. At her side, holding her hand, looking worried, her husband turned to me and asked "Is she going to be ok, Doc?" What an interesting thing: they chose their doctors carefully, so it would seem, bypassing us for those in Seattle. But now I'm "Doc" and instantly trusted to save her life. But that's not my point. It is interesting, however.

A simple abdominal xray had already been done, and it showed "fee air," meaning air in the belly outside of the confines of the stomach or intestine, where it ought to have been. Perforation, of something. Usually, there's no point in trying in advance to figure out the source: surgery is needed, no matter what. Sometimes there are clues from the history or physical exam: history of heartburn, indigestion, taking antacids, more tenderness in the upper abdomen, all suggest ulcer, for example. Nothing of that sort here. Because of chronic pain from her arthritis and many failed operations, she took high doses of narcotics, and was always constipated. Hadn't had a bowel movement in several days. Well, actually, she had; it's just that it all went inside.

The adult colon, if stretched out, is usually four or five feet long. In situ,which sounds, appropriately enough, like "inside you," it's like an inverted horseshoe, starting in the right lower abdomen at the end of the small intestine, heading up the right side toward the liver, turning to your left and crossing under the stomach, making a U-turn at the spleen, then heading south along the left side toward the pelvis, where it makes a corkscrew shape into the rectum. It can be pretty capacious, as Sally's most certainly had been, until it emptied itself.

Pretty rare and highly deadly as a cause of colon rupture is a thing called stercoral perforation. It means a hard piece of feces has rubbed its way right through the bowel (nearly always at the south end of the colon); a seriously bad thing. Opening Sally's abdomen, I encountered more stool than I could ever have imagined, spread everywhere: there were several enormous (what else is there to call them, really) turds, hard as rock, maybe a dozen. Swimming in no less than a gallon of liquid stool. Owners of motor homes who've had accidents with sewer hoses may have a vague idea...

The smell was astounding. The entire crew in the OR was bug-eyed. No one had ever seen anything like it, nor sensed it with pretty much all five. I filled a couple of big pans as I scooped out the solid stuff with my hands, then suctioned quarts more. (Despite the gloves, and vigorous washing many times after, my hands smelled like stool for days.) This was really bad: a huge bacterial load in an older woman who'd been in shock, portends a grim outcome. But she was hanging in there, having been properly resuscitated and maintained. Fast surgery is not always best per se, but sometimes it matters: the less anesthesia the better when a person is really sick. It's impossible safely to close such a hole; a colostomy is mandatory, getting the damaged colon out of the abdomen, letting bowel movements happen into a bag until such time as the patient is recovered and suitable for reoperation to hook things back up. So that's what I did, after irrigating the belly with about 10 liters of saline, followed by a diluted solution of bacteriocidal agent (povidone, if you care.) And closing with big "retention sutures," big and widely-spaced: not pretty, but protecting against the wound falling apart which is highly likely in such circumstances as these. Closing the skin would be asking for major infection.

The family was gathered in the waiting area, and listened silently and tearfully as I told them what I'd found and what we were up against. The odds were greatly against us, but there were no signs that we couldn't win, and we'd be doing everything we could. Expect a long stay in intensive care, under the best of circumstances.

Sally, it turns out, is an amazing woman, and became one of my favorites and a life-long patient. She never, as we like to say, turned a hair. (Where-ever the hell that comes from, it's an expression all doctors use for someone who makes an entirely unexpectedly smooth recovery.) At minimum, I'd told the family, expect several reoperations or procedures to drain abscesses, to tidy the wound. Plan on respiratory failure, maybe liver or kidney failure. Pneumonia. And this was the best-case scenario. Nada. She sailed. She was walking around on her kneeless legs in a day or two. I'm gonna take some credit here: thorough cleansing, quick operation, good postop management. But Sally, she's incredible. Nothing holds her back. A will of the hardest diamond.

Her belly is another story, or maybe the same one: it hardened, too. After six months or so, when I figured it'd be safe to go back in to close her colostomy, I encountered adhesions like I'd never seen. She hated her colostomy, and really wanted to get rid of it. As I struggled my way through, I thought a dozen times that keeping the colostomy would be better than suffering the complications of injuring the rest of her bowel to get there. But I managed to unravel the mystery without great harm and hooked her back up. She was delighted.

Surgically speaking, her life wasn't easy before she met me, and the struggle continued after. She had innumerable bowel obstructions, as she formed adhesions like they were money. Some went away without operating; some didn't. Each time I operated on her, I thought it was the worst obstruction I'd ever dealt with; the hardest to unravel, the most dangerous to tackle. Finally, there was the ultimate, and I thought I might have killed her.

Sally had come in with another obstruction (we're talking many years after we first met, by now.) As usual, I'd dragged my feet well beyond what I was taught in training ("never let the sun rise or set on a bowel obstruction," is what they told us. The worry is that whatever is kinking off the bowel could be compromising circulation, leading eventually to perforation. But there are times for clinical judgment.) After a few days of sucking on a stomach tube and high-calorie IV feeding, she hadn't improved, and had developed a low-grade fever. Drag the feet no more, doc. And as usual, it was hell in there. Just entering the abdominal cavity was a nightmare: bowel stuck everywhere, no recognizable separation planes. It's one of the most challenging and frightening things a general surgeon does.

Long story short. After spending hours moving my way into and through the abdominal cavity, and having nicked into the bowel several times ("inadvertent enterotomy," we used to call that in training, at D and C conference ((by all means, read my book to find out more)). My professor hated the term "inadvertent." Have a suction device where you're working: it means you expected it, he'd say. Good one.), I finally encountered the bowel that wouldn't budge. A loop of small intestine was plastered into her pelvis, fat as a salami, but thin and fragile as the wet toilet paper she'd have used the day I met her, if things had been different. Having switched all her care to my clinic, she had a new doc (excellent guy. My own doc) who had her on a new regimen for her constipation. Unfortunately, all the fiber she'd eaten for the past days had congealed in that one loop of small bowel, and it was going nowhere. I simply didn't think I could get it out of there without irreparably damaging the bowel, and, if I did so without the ability to work my way beyond it, and given the general immobility of the rest of her swollen and thin and surgically damaged intestine, I could imagine an insoluble (like the fiber!) problem. So I bailed. I found a loop of small intestine above the blockage that was barely mobile enough to bring out, and made a loop ileostomy, hoping it was downstream enough (no way to tell, given the tanglements and adhesions) that it wouldn't be a high-flow faucet. I told her husband in the waiting room that I wasn't sure it would work, I thought she might leak from everywhere, and she might or might not be able to eat again. Having operated on her several times, by now he never questioned a thing I told him.

Longer story short. She couldn't eat without flowing out her stoma like a river. I installed a special IV feeding line, and arranged for her to hook up at home, at night, so she could be up and around during the day. We waited for months. Eventually I took an xray by squirting dye through the south side of the loop: the fibrous obstruction had auto-digested, and the pipes were clear. Could I close the ileostomy? Was it possible to cut it loose from the abdominal wall, mobilize enough inches to work with, and safely close it and drop it inside? Should I try? Would it work?

Yes yes, yes, and yes.

Sally called frequently over the next many years, came in often. Always wearing shorts, showing her scarred and stiff legs. Always trusting, always pleasant, often just wanting a laying on of the hands and a reassuring word. I knew and cared for her for years, until her recent death for unrelated reasons. Her husband was always with her, always telling me how they'd never have gotten along without me. No doc. What a day that was.