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Happy Spring to all.  I’ve had my J-Pouch since  2000 with never any issues (very lucky) and have never been back to see a GI doc.  Had a recent scare in the local ER with an intestinal blockage at the stoma site but they wanted to remove my gallbladder (it wasn’t the gallbladder but a blockage as I knew and could feel.)

Dr. Bauer and Gorfine were my surgeons way bask then.  I’d like to be proactive and have a new GI doc and GI surgeon going forward as I get older so I’m not in a predicament some day where I need a doctor and have to take the one available.  Please send me suggestions.  I’d like to set up a consultation sooner than later.

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Lisa I am also a veteran patient of Dr. Bauer and Gorfine. My original pouch was done in 1992 by Gelernt and Gorfine. After Gelernt died in 1996, I saw Dr. Gorfine for J pouch revision surgeries in 1998 and 2000 and Dr. Bauer also saw me in the follow ups.

To answer your question, the big gun J pouch surgeon in CT is Dr. Vikram Reddy at Yale. My GI is Dr. Myron Brand of Guilford, CT and although I love him and think he is a great doctor and person, he is around 70 and one wonders when he will retire. That being said he seems like a workaholic and maybe he will work until he drops, like me. Who knows when that will be- Dr. Gelernt died of a massive heart attack at age 60. But Dr. Brand is very experienced with pouches and I have had a good run with him.

What I have learned is that doctors can die on you, move on you, and retire on you, and there usually isn't a darn thing you can do about any of the 3.

Last edited by CTBarrister

Thanks!  I want to have options as I get older and my pouch gets older. I’ll look into Dr. Reddy.  I’m in lower Fairfield County so NYC is just as close as Yale.  Many docs now have Westchester offices as well.  I’d like to find a GI doctor, too. Not crazy about the local ones. Little or no experience with pouches.  Thanks again.

Dr.  Reddy is my surgeon.  He did my three step and continues to monitor me since then.  He is excellent, both in his surgical technique and his bedside manner.  I just referred a friend’s SO to him and he was very pleased with his interactions so far and will have his initial surgery on Monday.  He was the only consult I had before surgery because once I met him I didn’t feel the need to look any further.

I'm a fan of Drs Kiran and Shen at Columbia. Dr Kiran is my surgeon. Dr. Shen is a gastroenterologist who specializes in pouch-related issues. They work closely together. Their Office support - nurse a practitioners, front office, dietician, etc. has been excellent.  Inpatient experience last year (x2) at Columbia Presbyterian was also great.

CTB23 and AMB, Thank you very much.  My goal this spring is to pick a new GI doc and also have a GI surgeon to call on should I ever need one. Since never needing a doctor for my pouch since my surgery 22 years ago, I’ve taken it for granted.  The blockage woke me up when the ER doc (who really didn’t even know what a Jpouch was) had me scheduled for gall bladder surgery.  Thankfully, I knew what it was and wasn’t having surgery.  I would have been transferred to Mt. Sinai which I had done after major disc surgery about next five years ago and my GI system didn’t start back up and I was being told I had a blockage.  Most general doctors and surgeons don’t seem to have a clue when it comes to pouches and the issues with the GI system due to a pouch. Thanks again.  

Dear Lisa,

When I came to CT in 2012, CTBarrister got me hooked up with his GI and I was very grateful.  That GI has moved on, but his replacement is excellent—really knows pouches and bends over backwards to try to find solutions to tricky problems.  His name is Badr Al Bawardy and he is at Yale New Haven. If they let us put in links I’ll put it below:

Dr. Reddy is also my surgeon and also fantastic.  I think my care in CT has been as good if not better than my care in Chicago at world-famous hospitals.

Ray C

My GI is Dr. Legnani   https://gastroenterologistnewy.../peter-e-legnani-md/ and surgeon is Dr. Chessin though these are my current docs.  My original diagnosis and surgery was prior to 2000 and Dr Present was my GI then and Dr Milsom did my surgeries.  The former retired and passed away, the latter moved out of state, but I think may be back.

Hi again @KennyJG44

Dr Remzi wasn't prepared for my initial consult.  He was not welcoming of questions.   He proposed an open abdominal surgery to construct my j-pouch in 2-3 stages.  

I did research and conferred with one of his former surgical colleagues from the Cleveland Clinic who I know through professional relationships and learned that most  surgeons who specialize in the procedure now do it laparoscopically.  

Dr. Remzi's surgical approach wasn't right for me,  though I'm sure there's a rationale for it, I just didn't want to face that trauma and scarring.  I also felt he should have explained that while he wouldn't offer it, a minimally invasive alternative was available.

I was referred to Dr. Kiran at Columbia. Another Cleveland alum, who impressed me as both skilled and compassionate. He did the procedure in two stages, laparoscopically.  I had excellent in-patient care at Columbia-Presbyterian, and I remain with the team at Columbia for follow-up care.

Hi Kenny,

I have to say I’ve had so-so experiences at Columbia. A trip to the ED was a nightmare but I think that’s just emergency care in NYC in general. I’ve had a couple of procedures with Shen but have struggled to get back in touch to see what next steps are. @AMB helped me out (thanks!). Shen is very talented and nice but I definitely feel like just another complicated pouch, not a patient. I finally reached someone on his staff and they gave me a canned answer about repeat sinusotomy. I think they just copied and pasted the response. They’re happy to schedule me for one with Shen but he has no idea who I am nor has he reviewed my case to determine if it will actually help this time. I asked, “is this what he recommends for me specifically?” No response just dates he can do it. I think he’ll just keep doing them as long as I call to schedule! This is not to say you shouldn’t see Shen. He’s very skilled at interventional GI and he’s a nice person. Just don’t expect any individualized care, a plan or good communication with him or his staff.  

Hi @Pouch2021 -

I appreciate the honesty!  A lot of the times it seems like there is a trade-off between highly talented physicians and compassion, bedside manor, communication, etc.  Not always, of course.  I am nervous to see anyone, to be honest, because I don't want to hear bad news.  But I also don't to be in pain forever.  I would agree with you, Shen probably is a pouch machine - just goes through thousands a year.  That doesn't make me feel great; but, if he is truly "the best" - then it might be worth the lack of individualization.

Time will tell - I can't get in there anyway.  I nailed down an appointment elsewhere for Monday AM, so that is a start.

Yes it seems like you just need to see someone and you have some good options. I wish you the best navigating this very complicated landscape.

Regarding ways to facilitate emptying, an enema doesn’t even need to be inserted fully (beyond the anastomotic site and region of potential stricture) to work. You can just insert it a cm or two into anal canal and it will generally just flow into the pouch. And a gentle laxative like Miralax is unlikely to do any harm unless you have a complete blockage. And even then you’d just vomit it up. I’d make myself as liquid as possible to help empty without straining. BTW, if you end up seeing Shen for pouchoscopy he will have you do a bowel prep with an 8oz bottle of Miralax the night before!

Good luck tomorrow. Let us know how it goes.

Dr. Reddy was great! He did mine during the height of the pandemic so I never really got to see him in person, but we did video conferences. His nurse (I think she is like a PA) Maggie was a lifesaver during my recovery. Every time I had a problem she would have an answer or get me one.

My GI is Dr. Eddy Castillo. He has an office in Bridgeport and Fairfield, CT. Its tough to see him with a wait time of 3 months but he is the best GI I've been to. When I first went to him (years before my J-Pouch) he asked questions no other GI asked me....

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!

@athena - You are correct that choice of care team is challenging. The patient's trust in that team, led by the surgeon, goes a long way in mentally  preparing us for the procedure, allaying fears, and having a proper mindset to heal.

Thanks for writing about your experience. I think your comments about Dr Remzi are spot on. No doubt his technical skills are excellent. He's patched up many folks in this forum as he did you. I don't doubt he would have left me with a well constructed pouch, but the lack of clarity in communication about what to expect left me uncomfortable, and fortunately there were other options.  

Since the surgery I've read a lot of research papers and attended The Annual Dr. Victor Fazio Ileal Pouch Symposium the past two years. From listening to these top surgeons in the field it's clear that having the pouch created properly in the first instance is of utmost importance, and many surgeons are likely doing them without the necessary training and/or experience.  Hand sewing v. stapling, open or laparoscopic, whether to perform the mucosectomy, even the two techniques for anastomosis at the pouch inlet - these are things that most of us, not being surgeons, don't ask about, so we don't participate in the decisions though we live with the consequences. A proper informed consent would cover these things and more.

I wonder, though, if any of the surgeons, or the gastroenterologists who refer us to them, are doing a good enough job of explaining the challenges most of us face learning to live with an Ileal pouch,  even a well-constructed one.  

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!


I think the referring doctors, the gastroenterologist who serve as our de-facto primary care doctors for chronic illness, ought to do their own homework before referring us to a surgeon! And they should have more than a passing appreciate of the range of functional j-pouch outcomes.

I am an attorney who practiced healthcare law, including litigation. I'm married to a gastroenterologist and most of my adult life I have been surrounded by them, attended their conferences, read papers, and have met many of the world's  leading gastroenterologists and colorectal surgeons.  

(Its funny that while surgeons tend to adhere to the "old school," gastroenterologists now tend to offer a "new school" menu of medicines, mostly biologics these days, leaving it up to the patient which to try, and only disclosing consulting fees if they're lecturing to other doctors.)

As a 40-yr+ UC patient, I'd spent more time than most contemplating both the inevitability of my own bowel surgery and the nuances of informed consent to treatment. Still when it came time, my own surgery was frightening, and my capacity to absorb surgical details was limited. I'd read some about average complication rates, but I wasn't in a state of mind to cross-examine surgeons.  I very much relied on them to offer sufficient information to me about their approach and alternatives to allow me to make a good decision about whether to proceed with a J-pouch, consider a k-pouch, or stick with an ileostomy, including relative complications, recovery times, and how differences in surgical approach might impact me.  

I never contemplated having surgery at my local hospital, even if there was a surgeon with enough experience. I've seen many cases of medical liability arising from physicians (or their family members) receiving less-than optimal care at their own facilities, because "professional courtesy" slips into loss of objectivity.  Tends to be less of an issue I imagine at major centers.  I hope that's not what happened to you.

Our surgical charts will all say "explained alternatives & risks, including infection and death". We always sign a consent form that says surgical plans may change gears once we're in the operating theater. But real meaningful engagement between physician and patient to reach true informed consent is an art.  It's relatively rare in surgery, I fear. And it's very hard to teach.  I'd say your own terrible luck has made you an expert and given you a unique perspective. Thanks for sharing it.

Just an update on the Connecticut Gastronterology Consultants PC practice featuring Dr. Brand which has the largest infusion center in CT: I was advised that the practice was bought out by Yale, with the sale to become effective 11/1/22 so not sure how that will change things for those getting infusions there.  It was my understanding that Dr. Brand and his group previously owned those buildings at 800 Boston Post Road in Guilford as he disclosed this ownership interest to me when I became a patient there. Yale seems to be buying everything in southern CT. They are like a huge multinational corporation and own most of New Haven. It's kind of scary for the New Haven taxpayers because Yale is tax exempt but also the biggest landowner in the City of New Haven.

One change that may happen is it might be easier for them to schedule infusion nurses. The nurses who work the infusion room all moonlight as contractors and most are Yale employees. It was hard to get them to schedule there because they are paid more working jobs at Yale. So the ownership change may mean more consistent staffing of the infusion center, but that's speculation on my part.

Last edited by CTBarrister

One more up vote for Mt Sinai IBD research center. They have GIs who are specialized on J-pouches. You cannot find those GI's easily.

Also, they treat you with empathy. When I needed extra ostomy supplies, all I needed was to leave a voicemail to Mt Sinai nurses for extra prescription. They did not question anything. But NYU nurses treated me as if I am asking for a favor, as if I am deceiving them, and made it extra difficult to get prescription for extra supplies.

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