That is such a good question, @AMB, about consent. Kudos to you for going to the symposium—that’s a lot. I don’t think most people do a great job of informed consent, Remzi and co. included. (I read his relevant papers preop to get an idea of what could go wrong, or I’d have no idea. Perhaps that was because he had to change the plan, but I don’t think that’s the only reason.) And I have felt that to be true even with my first surgeon, who was a lot younger but still didn’t think he had to address potential complications or answer questions. (Inexperience, in his case, meant he either didn’t know the answers or knew I wouldn’t like them, if he told the truth. So he didn’t.)
Being a patient made me better as a surgeon in that regard. I don’t think it’s always that they don’t want to tell you. I think one problem is time pressure. Another problem is that there are plenty of people out there whose eyes glaze over with too much information, who are easily overwhelmed just by the word ‘surgery’ and don’t want to know. If you see enough of those, you start assuming. I got better at understanding what the patients would really want to know, after being a patient myself! Otherwise it wasn’t something they train you for… I mean, I tried before then, but it was a lot clearer after my first surgery, for sure. I tried to learn from all the deficits in my own care, so that my patients wouldn’t go through what I did.
But even if people don’t always want to know (and you’d be surprised how many go that route, putting their faith in a deity instead of the very human surgeon in front of them), everyone should have the option. I don’t think it should be like an a la carte menu, though. The reason there are so many technical options and issues is that not everyone’s anatomy works for everything. So it’s not like they could tell you: ‘choose A vs B’, beyond pouch vs permanent ostomy. Sometimes you don’t know what you’ll get til you get in there! And if you say you’ll do one thing, and you have to do another, people get upset with you, even though you did what is best for them based on experience and judgment. (It doesn’t always turn out to be perfect, though, and that’s when things get hairy.) My two uncles are old-school general surgeons from the same era as Dr. Remzi—we argue over this stuff (consent, shared decision making) all the time—but they very much believe in telling the patient the least they have to. It’s a different world now than when they trained, but not everyone adapts.
Anyway, it’s such an important decision—I just wish I had better insight into how to choose other than sheer luck/talking with the right other person! And if that’s true for someone who worked in the system, how does it work for those who don’t? My first surgeon came highly recommended from a GI I trusted who took great care of me. When the surgeon was a total disaster, I made sure to let the GI know—I hope he didn’t send any more patients to that guy, given what a mess he made of my care, and how he lied to me. I knew the right questions to ask—I didn’t expect him to lie, especially to a fellow surgeon, about the answers. But it happened anyway. It was terrible luck, because I trusted my GI to send me to someone good, and he thought he was doing just that. Now I know to do my own homework. And to get second and third opinions if needed, for anything major.
I never got upset with my patients if they did that—I told them quite honestly, if they still had a lot of doubts after we discussed something thoroughly, to go see someone else and see what they would say. I knew I was offering them the best options—but they couldn’t possibly know that, and needed to do whatever they had to in order to feel comfortable. I’m so glad I did that myself before the pouch revision—it took a while, and I was so sick and miserable, but the first surgeon I saw when things started going terribly said nothing could be done, didn’t even do any workup or examine me. (I told him how bad the pain was. I think that made him shut down and decide he couldn’t offer me any solutions, which was terrible, but also he didn’t think to refer me to anyone better. Ego.) The two women I saw after him, one former Remzi fellow, were very thorough in history and exam, reviewed the MRI, and came to the same conclusion independently, and both referred me to Dr. Remzi, said that’s where they’d go if they were me. That’s how I knew I could go there and trust him to do the right thing, even when the first visit with him left me fuming.
Anyway, I’m sure everyone has stories like this—and I really do think these forums are helpful, or at least, I hope they are, for people who have yet to take the plunge… pouches aren’t perfect, and they aren’t predictable. Leaving the cuff at the rectum makes the surgeon’s life a lot easier—can use the stapler—and decreases the high risk of nerve injury/incontinence after mucosectomy. But it means long term risk of cuffitis and cancer, chronic misery, etc if your body can’t ignore that last bit of tissue. They can’t give you the choice in most cases, have to do what is best in their hands. But they owe us an explanation of why they chose one way vs. another, and what that means in terms of what to expect later. I find that to be one of the most glaring omissions… S pouch does not equal J pouch does not equal revision J pouch does not equal revision S pouch, and so on. But the people who often do the educating are not often the people who do the surgery, for time reasons. So, we’re left to learn so much on our own, and from one another… thanks to everyone on here who has taught me something/given me something to think about over the last several years! Much appreciated!