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Reply to "NEED NEW DOCS IN NYC-CONNECTICUT AREAS."

Picking the care team is a challenge, and I wish you the best of luck with this. I can vouch for my experience up there, am glad there are several good options now. I can enthusiastically recommend Dr. Remzi and Dr. Shannon Chang (GI), his partner in the IBD center who is young and excellent.

My experience was good with Dr. Remzi; he came highly recommended, and he managed to salvage a real mess in my abdomen after a year and a half of pouch leak peritonitis that nobody else wanted to solve.

No, he’s absolutely not good with a lot of questions preop. I’m a surgeon myself, and I didn’t like that part. No, he didn’t seem too prepared, didn’t look at the recent pelvic MRI that I brought along. But I knew, even when he thought the problem was different than the other surgeons I consulted had diagnosed (they agreed with each other, but he didn’t), he was going to be wrong, but when he got in there, he’d still know what to do. Experience matters so much, and he’s had more for pouch revisions than anyone else.

That was exactly as it happened. He was expecting a mechanical pouch issue, but found a disastrous chronic infection/leaking pouch/massive scarball encasing a lot of my small bowel (which the others had called correctly from the MRI and history). And… he still fixed it, did everything that needed to be done, right there and then. He was scratching his head afterward, told me he didn’t understand how I was still standing, much less working, with all that (which is why he thought it was less serious than it was), but I knew I was in the right hands—after so many wrong ones early on—even when he wasn’t all that receptive to my concerns at the appointment. He doesn’t listen well, like most of his generation of surgeons, but he sure knows what to do when he sees it. Experience tells.

BTW, he had offered to do this first bit laparoscopically, like my first surgeon did my initial procedure. I told him what I told the first one, and what I’d advise any of you—I care more that it’s done properly the first time, than I care about scars or recovery time. Skin heals a heck of a lot better than gut does. But I know that as a surgeon. Most patients are more worried about the recovery; I’m more worried about the procedure being done technically correctly, so that there are no long term problems. My first surgeon ignored that, did it via scope, and I still ended up with a big x-lap when it all went to hell in a couple of months, so…

Remzi offered the scope, despite my history; he used it to look around, saw the mess, and had to open me up after trying to scope. It’s an ego thing not to have to do that normally, mind—no one thinks they’ll have to. I’m glad he is good enough to know that the right thing is more important than ego or even patient expectation. He told me he wouldn’t need to open preop when I asked, but I wasn’t mad when he did—the goal was to have the proper treatment this time, and I trusted he would be able to do what was needed. He did.

Then came the second stage. He read his initial clinic note for the plan, not the op note from before, so he didn’t remember that I needed a new pouch. I had to tell him in the preop area. I was concerned for all of a few minutes; he’d remember when he saw it, was so crazy busy with consults from all over the world that I could understand him forgetting. But I fought with him in the preop area, told him I wanted a hand-sewn repair this time, because the cuff needed to go (chronic cuffitis was miserable and a cancer risk), and because I have metal allergies (allergist confirmed) that likely made the staple line fail after four years, causing the chronic peritonitis he found. Remzi doesn’t believe in metal allergies. As someone who implants metal into others as part of my work, I certainly do. He wasn’t happy with me preop, asked if I wanted to cancel, even, but I told him that if he stapled me, and I was right about what would happen in a few years, would he be around to fix it? Could I even have another revision pouch then?

He ended up giving me an S-pouch, something rarely needed anymore which happens to have to be hand-sewn, because I didn’t have enough length on my mesentery (which the first surgeon complained about, and I did tell Remzi about, though he blew it off at the time). It works as well as an S-pouch can, really, and I’m not in chronic miserable pain anymore, feel a ton better. He didn’t have a choice, really, with my challenging anatomy and the residua of all that chronic infection.

Anyway, the moral of the story is: he may not be the best listener, but he really knows what he’s doing. When the chips are down, he’s your guy. I firmly believe that, even though I’d have loved him to be a better listener from the outset; he admitted he was wrong, even, in the hospital, after my surgery the first time, and the second time, he told me I’d be happy with what he did, when he saw me in recovery, because he had to hand-sew everything in the end, said he had not had to do it that way in 20 years.

He knew all the tricks, knew how to do stuff that isn’t commonly done anymore. That was a big help in my case. He’s fine on the scope, so if he’s not advising that, there’s a good reason for it, I’d say. I think he looks at the data he and his partners collected back at Cleveland Clinic, where he was for years, and felt that the open surgery had better outcomes consistently. Doesn‘t mean you can’t get lucky, but it also means you could end up with the mess I had from the laparoscopic version, in the wrong hands. Remzi and Shen were kind of the Dynamic Duo of IBD back at Cleveland Clinic… they have a ton of publications on all this stuff, reflective of their shared experience.

Anyway, now Remzi’s got to be getting closer to 70, I’d guess. I moved away, and he directed me to his favorite former fellow from Cleveland Clinic, for further care. She’s fantastic so far, and a lot younger. But she’s in NC, and I haven’t needed surgery, just established care and had her do my scope, since she would be the one who would be asked to try to fix it if something was going wrong. He even remembered the disaster that was my gut four years later, told her all about it on the phone the morning of my scope, so we had a good laugh over that.

He’s old-school, but he’s really good at what he does. I think it was easier for me to know that, though; sometimes the better talkers are the worse surgeons, and only the other surgeons and OR staff tend to know that. I’m in a different field, didn’t know anything about colorectal surgeons. But I trusted the two surgeons who independently saw me, diagnosed the same issue, and recommended him enthusiastically as who they’d go to in my position. That helped. I remember leaving the first appointment frustrated, but then shaking my head on the drive back home, telling myself he’ll understand it when he sees it. And he did.

(Part of it was my fault; I didn’t bring up how much pain I was in, when I saw him. My experience prior to NYU was that the minute you talk about your pain, the doctors stopped listening and wrote you off/thought you just wanted meds. I decided to focus exclusively on the changes in my function at the appt, was calm and focused about it—which was hard when it hurt so badly—and between that and the fact that I was still able to practice, he must have thought it couldn’t be anything worse than a mechanical issue. Now he thinks I’m just really tough or something, which is funny; I wouldn’t say that is true.)

Dr. Chang listens very well, is young, smart, and well versed in the literature, and is caring and resourceful. When Remzi didn’t have an answer for something, she did her best to find one for me, above and beyond. During the pandemic, we had to catch up over telemed, and her empathy came through even then. I hated leaving her when I moved, but she found me someone down here who is really good as well, a great listener and a thinker, very responsive to my questions and concerns, and I’m so grateful she found him for me. I’d say you’ll get really good care there, from both of them, but it takes a while to get in, like it does anywhere, I guess.

Best of luck!

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