Webinar: When the Urine Flow Slows: Understanding Ureteroenteric Stricture Disease

Description: Dr. Ziho Lee discussed ureteroenteric stricture disease, including symptoms to watch for, how it’s diagnosed and the latest treatment approaches.

Year: 2026


Part 1.

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Part 2.

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Part 3.

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Part 4.

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Full Transcript of Webinar: When the Urine Flow Slows: Understanding Ureteroenteric Stricture Disease

Patricia Rios:  

Our topic for today’s is understanding ureteroenteric stricture disease. And again, this is part of our Bladder Cancer Advocacy Network Patient Insight Webinar Series. And for those of you that don’t me, I’m Patricia Rios the director of education and advocacy.

So this is a very important and very interesting topic. We’re grateful to Dr. Lee for returning back to help us understand what this disease is. How it’s formed, and how it’s treated. So a little bit of background on Dr. Lee. Dr. Lee is a reconstructive urologist at Northwestern University. He completed his general surgery internship and urology residency at Temple University. He then went on to complete a fellowship in advanced robotic urology, oncology, and reconstruction at Temple University and a fellowship in urologic trauma and reconstruction at the University of Washington.

Dr. Lee, as many of you learned last time, when he was here with us, has a particular interest in robotic reconstruction of the upper and lower urinary tract. After Dr. Lee’s presentation, you’re going to hear from one of Dr. Lee’s patient. So we are grateful today that we have here Anthony Vacek, who is from Chicago, Illinois, but goes by the name of Tony. And Tony will be talking about his experience with this particular disease. Again, known as ureteroenteric stricture disease. He will talk about his experience with the surgery and rehabilitation, and how long it’s been since his surgery.

So I look forward to hearing more from Tony. So stay tuned after Dr. Lee’s presentation to hear that. After we hear from Tony, we’ll have a Q&A session. So as a reminder, please enter your questions throughout the webinar, and we’ll try to get to as many of those during that dedicated session. So with that, I’m going to hand over the screen to Dr. Lee to talk a little bit more about this condition. Again, why it forms and how it’s being treated. So with that, Dr. Lee, thank you so much again for joining us. We look forward to learning and to spending the next hour with you. And with that, the screen is all yours.

Dr. Ziho Lee:

Awesome. Well, thanks again for having me on. I know I said this last time, but I really appreciate these opportunities to interface directly with the members of BCAN. It’s always nice to answer questions in a little bit different of a setting than the clinical office or at conferences, where I’m talking with various other physicians. And so I really appreciate this opportunity. Happy to answer any type of questions that anyone may have.

All right, perfect. So today I’m going to talk about something called ureteroenteric stricture disease. I know it’s a mouthful, but essentially what it is, is scar tissue that forms where the ureter meets the ileal … Or any urinary diversion, and I’ll go in through all that stuff. Again, I know the Q&A box is open, so feel free to put up any questions and I will try my best to answer all of them.

Dr. Ziho Lee:

So what is a ureteroenteric stricture? Like I was saying, it’s narrowing between the ureter and your urinary diversion. So when we look at human anatomy, most patients have two kidneys, one on each side, as you can see here on the screen, and there’s this long tube called the ureter. Essentially, the job of that tube is to transport urine down into your urinary diversion. And so there’s three major kinds. We have the ileal conduit, which is the most common, but you could also have a neobladder or a continent urinary pouch.

And so essentially what we’re talking about is scar tissue right here between where the ureter has been connected to your urinary diversion. And in most cases, it’s going to be your ileal conduit. And so that’s what I’m going to be focusing on today.

Dr. Ziho Lee:

So how often does this occur? The literature says 3 to 19%. I think in most series, it’s about 10% of cases after any urinary diversion, whether that’s an ileal conduit, a neobladder, or Indiana pouch. You can have these scar tissues that form after surgery. Most of these, as you can see, 54% will occur on the left side. So why does it occur mostly on the left side? Well, this is an image of a robotic. This is a surgery that I was performing where …

This is the ureter. It’s a small straw that has been cut. And essentially what the left side has to do is you have to swing the left ureter from the left to the right side through essentially the blood supply of the colon. And so the reason why most of these occur on the left side is because on the left side, you need to perform a little bit more aggressive dissection, and that literally needs to be swung through. We call this the mesentery or the blood supply of the colon. And because you’re doing that, it can be stretched a little bit more and you can cause a little bit more trauma to the area.

What I can tell you about ureteral surgery, a big part of my practice is on ureteral reconstruction. We do a lot of ureteral reconstruction here at Northwestern, but what I can tell you is the ureter is an extremely fragile organ, and so it’s very easily damaged. It’s a structure that you need to operate it on without actually touching it directly. And so it’s a very fragile organ that can get scarred up, which is why this ureteroenteric stricture problem can happen.

Usually these strictures happen within 7 to 18 months of surgery. And the reason is because … What happens is that after your connection, you can have a little bit of ischemia or decreased blood supply to the area that causes some scar. And so today I really thought I’d focus on an overview of what this is, and then also take you guys through the nitty-gritty of surgical reconstructions and how we’ve changed the space here at Northwestern.

Dr. Ziho Lee:

So why does this matter? Why is this a problem for people? Well, you ureteroenteric stricture, first of all, can cause flank pain. You can have pain on your side. So when the kidneys get blocked, sometimes what can happen is you can have pain on your side that can be an achy type pain that can cause issues with patients. And so that’s number one. Number two, a lot of these patients that are referred to see me, they’ve had a lot of chronic hardware. So they’ve had stents on the inside, or sometimes they come in with a tube on the outside. It’s called a nephrostomy tube, where the urine drains from the side and into a bag, not your stoma bag, but a bag on your back that helps drain the kidney.

These chronic drains can really be a problem because it can cause infections, you need frequent surgeries, and it’s just not really comfortable for patients. And so I would say the vast majority of patients that I see come with these chronic stents or nephrostomy tubes. It can also cause recurrent urinary tract infections. Patients with any urinary diversion, you are at a higher risk for urinary tract infections after the surgery. But in the case, when you have a stricture, it can cause more frequent infections. Why? Well, you have hardware, you have abnormal anatomy, the urine’s having a hard time getting down. And so these patients are at higher risk for infections.

Most significantly, these strictures or scar tissue formation can also cause decrease in kidney function. This is one of the most common reasons why I operate on patients. So patients who have blockage of your kidney from this scar tissue, it causes irreversible renal function loss or kidney function loss that you can’t get back. And so for me, in my practice, that’s one of the most common reasons I operate is because I don’t want patients’ kidneys to get worse.

Dr. Ziho Lee:

So when I do evaluation of patients with this that are referred to me, what are the key questions I like to answer? Number one is, how is it affecting the kidney? Is the patient going to be safe? The kidneys, as we know, is a vital organ for survival. And so for me, as a reconstructive urologist, who can help patients with this condition. I really want to preserve the kidney function as much as possible.

Also, is the patient having symptoms? Are they having pain? Are they having infections? Next, I need to know, how long is the scar tissue? Is it on the left side? Is it on the right side? Is it on both sides? And so I really need to answer that question. Lastly, I need to answer, how is the urinary diversion? Is the ileal conduit narrow? Does that need to be fixed too? Is the neobladder still okay? Does the patient need to switch to an ileal conduit? So these are all questions that I’m trying to answer before undergoing reconstructive surgery.

And so what I really focus on from my standpoint, from a surgical and treatment standpoint is, how long is the area of narrowing, where it is? And then also, is the conduit or urinary diversion, is it viable? Are we going to be able to keep that or do I need to make a new one?

Dr. Ziho Lee:

So this is a very common picture. So I take all my patients in for … I call this the diagnostic procedure, where patients come to the operating room with me, we have them under sedation, and I use X-rays and cameras to take pictures.

So what you’re seeing here is this thick tubular structure here, this is actually a camera. It’s a small camera called a ureteroscope. I put this through the back, through a small hole. We drive through the kidney, down the ureter, and you can see here the tube gets from this thick appearance to … You see this narrow appearance. So this narrowing right here, this is the stricture or the scar tissue. If you imagine in the cartoons, you have this hose and then someone is stepping on that hose. That’s what I oftentimes tell my patients. And then this thicker area here, this is an ileal conduit. So this is a nice robust ileal conduit. This little area here, this narrowing, this is the scar that I need to fix.

Dr. Ziho Lee:

So management of this is very difficult. A lot of times patients are recommended to dilate the area or balloon, try to dilate the area. In my experience, this is really limited in terms of success rate. I would say maybe 20, 30% success rate over long-term. So in my practice, I don’t even offer endoscopic evaluation. Oftentimes when patients are referred to me, they’ve had endoscopic or these minimally invasive procedures, like dilation or making a little nick into the tube. They’ve had two or three of these procedures already.

The gold standard treatment for this is where you make a large incision, so you make a cut, opening the mid-portion of your belly, and you do open surgery to repair it. However, it is a very morbid surgery. Why? And we’ll go into that in a little bit, but the complication rate is almost 50% in these patients. So it’s a pretty morbid operation because you’re making this big cut.

Dr. Ziho Lee:

So why is reconstruction challenging? So this is an image of me doing the surgery robotically through five small dime size holes. You can see here there’s scar tissue everywhere. This is a piece of intestine, piece of intestine, but because this patient had had prior surgery, like the cystectomy and the conduit that the patient had before. There’s a lot of scar tissue and that makes surgery very complex. It increases the risk for injury.

So why is it challenging? Why is reconstruction challenging? And why is it not really performed at many institutions? Well, it’s reoperative. I’m going back in where someone had previously done the surgery. Additionally, I told you guys before that the ureter is very fragile. Someone’s already operated on this ureter and now it’s scarred up likely because an issue of blood supply. And now I’m expected to go back in there, where it’s already compromised and try to fix it. And so that makes surgery a lot more high risk, in that I need to preserve and try to help this ureter with its blood supply.

Lastly, there’s atypical anatomy. So I’m not usually the person who does the cystectomies, while I do a fair number of them. I don’t do them for cancer. When patients are referred to me, they’re referred from all over the United States. I have patients that travel. I think last year we operated on patients from about 40 states, but the atypical anatomy makes it difficult because everyone has a slightly different way of doing it. Maybe they cut the ureters up higher, maybe they left it lower. So I got to go in and figure out what was done before I can go and repair everything.

Dr. Ziho Lee:     

And so for me, I do a lot of robotic surgery. I’m a staunch proponent of this. The reason is because it’s very minimally invasive. I have patients that leave the hospital either the same day or a day after surgery. There’s small little dime size holes. There will be pain after surgery because it is major surgery, but it’s much more minimally invasive than the gold standard, which is to make a big open incision.

Dr. Ziho Lee:

I use a lot … I try to be at the cutting edge of all surgeries. I like to use a lot of technology. I’ve done a lot of work and research into using fluorescence during surgery. Why do I use fluorescence? Well, I use fluorescence because it helps me identify structures. I told you guys, anatomy is hard to find because I wasn’t the original surgeon, so I have no idea where anything is and I need to find it. So fluorescence can help me find different things.

I thought it’d be fun just to show you guys some clips of videos from surgeries where patients gave me approval to show this. If you have this issue or know someone with this issue, you have a better idea of what’s going on. But when I go in bellies, oftentimes there’s a lot of scar tissue everywhere. The bowel is just stuck everywhere and I don’t know … Your urinary diversion, your conduit, neobladder, your Indiana pouch, it’s made of bowel. And so I need to be able to differentiate the urinary bowel from your intestinal bowel.

This is a patient who had a neobladder, who has a stricture. And you can see here, I have no idea what is what. I need to figure it out. I put a little dye in the conduit and you see that green hue right there. I know right away everything else that’s not green, I know that’s intestinal segment. It’s like cheating. It’s the easy button. I push it. The fluorescence goes on. Green is where I need to go, so I just go straight for the green. And so this was a great technique that I helped develop.

Dr. Ziho Lee:

Lastly, I also told you I use fluorescence. I told you guys that the ureter is scarred because there’s compromised blood supply. And so when I do ureter reconstruction, I inject fluorescent imaging in the veins. And what happens is that it’s going to fluoresce green, where there’s good blood supply and where it’s not green, it’s going to be bad blood supply. Oops, sorry. Oh, no. I don’t think this video is working for some reason. I will have to skip over that, but I believe that we’ll have some images of this later on.

Dr. Ziho Lee:

So when I talk about reconstruction, I’m a big history guy. I think in any industry, surgery included, a big part of why I’ve been very lucky to work on the cutting edge, develop new techniques and offer advanced surgeries because of the people before me. And so this is Sir Harold Gillies, he was known as the father of modern day plastic surgery. Why am I talking about plastic surgery when I’m a urologist? Well, a lot of what I do reconstruction is based in plastic surgery. And so he was a surgeon in World War I and World War II and really revolutionized surgery, especially plastic surgery.

He came up with a set of rules, which some refer to as the Bible of plastic surgery. These are rules where … They have transcended time, where … In reconstruction, essentially you can do a lot of creative new things as long as you stick to a certain set of rules. One of the rules that the surgeon came up with was principle three, is you make a plan and always have a pattern for this plan. So a lot of times when I go to surgery, I tell my patients, “I could do maybe four or five different surgeries. I have no idea which one I’m going to do, and I got to do whatever is going to be best for you during surgery.” So I tell them about five different surgeries. I say, “Listen, I don’t know exactly what I’m going to do, but it’s going to be one of these options.”

And the reason I do this is because I really try to tailor the surgery to the patient. I don’t use a one size fits all. I try to do what’s best for the patient. And I think what’s really relevant here is … I have a game plan. I have a roadmap that I follow, and I’m going to share with you guys my roadmap.

Dr. Ziho Lee:

And so in reconstruction, we have something called ladders. Why? Well, I start with the easiest thing. So this thing down below, that’s what I usually shoot for. If I can’t do it, I go up a step on the ladder. If I can’t do that, I go another step on the ladder. If I can’t do that, I’m climbing the final step in the ladder.

And so I’m going to talk to you guys about some of the technical nuances and things that I do. It can show you some of the things that I do. The first option is this, what the heck is a non-transecting side to side re-implant?

Dr. Ziho Lee:

So I’m going to tell you guys what that is. So normally, normally when there’s scar tissue, let’s say you have a tube and there’s scar tissue in the tube. The easiest way to fix that is you just cut out the scarred area and then you just put the two ends back together. That is probably the easiest thing to do.

However, what I explained to you guys was that the ureter is extremely fragile. I don’t really want to dissect it a lot. I don’t want to cut it a lot. And the blood supply … The blood vessels go longitudinally. They’re parallel to the longitudinal diameter. And so if you cut across the ureter, you can compromise the blood supply. So instead of doing the classic, what we’ve all been taught, you just cut out the scarred ends and you put the good ends back together. What I actually do is if you look on the right side of this patient. I make a slit. So I make a slit in the ureter on the side. And then what I do is I connect the side of the ureter to the side of the bladder. That’s why you call it a side to side re-implant. And this was a technique I helped popularize.

And so I’m keeping the original. So if you could see here, this is the ureter, this tan structure coming down. It plugs into this hole right here, and you can see the scar tissue right here. So the original hole is still there. And what I’m doing is I’m cutting above that scar tissue and I’m just swinging things over and connecting it. This really minimally disrupts the blood supply, leading to a more favorable outcome.

Dr. Ziho Lee:

And so when I’m able to do this, I always do this. And I’m going to show this to you via video form, so that you guys get a better sense.

So this is a 68-year-old. This is the image here. This is the conduit. This is the scar. So you could see here, this is the scar tissue. This is a really nice … I’m going to stop this right here and show you guys. So you could see this is the conduit here on the right side here, this big piece of bowel. And then you can see this is the ureter, this tube, and it’s going down into this scarred or narrow portion, and you can see that narrowing really, really well.

And so what I’m going to do is I’m going to dissect out the conduit. You could see the amount of scar, but when I’m robotic, I have really good access to this area. I’m comfortable. I’m sitting down in a seat. I’m controlling the robot. And what I’m doing is I’m really dissecting everything really nice and clean. I really like to dissect everything off, just to have really good anatomy, and it makes the surgery very easy and very clear cut to me, and I don’t ask questions. So when I’m done with your surgery, I can come out and say, “I did a great job and I know you’re going to be good.”

And so here you can see this narrowing. And so what I’m doing is I’m making a slit right above the area of narrowing and you’re going to see this opening into the ureter right here. This is the tube and you can see it’s bleeding. This is good. I want it to bleed because that means there’s good blood supply. What I’m going to do is I’m going to make a hole into that conduit. And remember, the original hole is still there. The original connection is still there. What I’m doing is I’m just bringing that ileal conduit or that urinary diversion right to the ureter and I’m sewing this in place. I’m connecting the two ends back together. And what I’m doing is I’m really minimally disrupting it. I’m not cutting across the ureter. I’m making a slit into the ureter and doing a nice connection.

And this has worked out extremely nicely. So this is my go to. If I’m able to do this procedure, this technique, I’m going to do it 10 times out of 10 times because this is what I think, in my opinion, the best way to fix these. And this is a stent. This is a plastic tube. I like to place it. This allows for healing of the connection across this area. And what you can see here, you put the stent in, and then all I got to do is I got to sew that hole back together, and then we’re all done. Very intricate suturing here, using very small needles. This is magnified 10 times. So the robot magnifies things about 10 times, but you can see it’s pretty easy here, just to finish the reconstruction.

Dr. Ziho Lee:     

So the next thing I do is a transecting end to side. So what is that?

Dr. Ziho Lee:     

So that’s your classic, where you cut the bad things and you connect the two good ends back together. So this is the classic way to fix it. And I’m going to play this. Sorry, there was sound on here. I will turn the sound off. So you see the ureter here. What we’re going to do is we’re just going to cut the bad ends. I’m going to open up that good piece of ureter. I’m going to make a hole in the conduit. After I make the hole … This is just the classic way. You cut out the bad pieces and literally what I’m doing is I’m just putting the good pieces back together. And so this is your classic, tried and true way. And I do this when I can’t do that side-to-side special anastomosis or connection, excuse me. Put that stent in place, and then I’m just going to close the ureter right over this place, over the ureter. Excuse me.

Dr. Ziho Lee:     

Next is the conduit flap. We’re getting now into a little bit more advanced techniques. This really hasn’t been described in the literature. I believe one of my residents actually won a best surgery video for some of her work in this.

Dr. Ziho Lee:     

What I do is when things don’t reach, when you cut the two ends and you just can’t get the tissues back together, that’s a problem. Because how else are you going to get the tissues if it doesn’t stretch? You can’t leave the patient without a connection. So here you can see a pretty long area of narrowing. This is the conduit that’s the ureter.

You see the ureter going in. I’m going to cut the bad piece of the ureter. And this up here, I’m cutting just the bad diseased end. That was the scarred end. And what’s going to happen is … You’re going to see, I’m not able to connect. And so I’m measuring, and bringing a ruler, it’s a three centimeter gap. So we say in reconstruction … One centimeter in reconstruction is like a mile. Just getting there is quite difficult.

And so if I’m not able to connect the two ends, what I’m going to do is I’m going to cut into the ileal conduit right here. I’m going to make an upside down U shape. I’m going to make a U, and what I’m going to do is I’m going to use part of the ileal conduit and roll that up into a tube to make a ureter with this ileal conduit. And so now what I’m doing is … You see this U-shaped flat that I’m making that’s about three centimeters and the bleeding is good. I want to see bleeding. That means it’s healthy tissue.

And so you’re going to see here, this is the cut end of the ureter, and I’m going to be able to bring this tissue back together. So you could see here, this conduit now actually connects to this piece of ureter. And now what I’m going to do is I’m just going to spin everything into a tube and roll it up like a taco, and then that’s going to help with the urinary drainage. So after I do the back wall, I make the connections. This is now … I’m starting the front wall, and then I place a stent. I really like to place these stents just to make sure things heal appropriately.

My approach to surgery is I never want to do surgery on that person again. So I try to take every step necessary to minimize the risk of a reoperation. And literally what I’m doing is I’m just rolling it up into a tube. And so you could see here things are just getting rolled up. This is, I would say, a pretty complex procedure, not really done at most centers, but we’re hoping to popularize this technique through some of our research and teaching courses that we do offer at Northwestern.

But here, we’re just really rolling it up in a tube. You can see it’s a nice tight tube. I’m making sure I suture things up watertight. Essentially, I’m just closing it up and patients do very well after this procedure. And so this shows that on very long strictures that previously … Maybe someone would have to live with a tube forever or a stent forever, we’re able to fix them here. And so we’re really proud of our work.

Dr. Ziho Lee:     

And lastly, if all else fails, if the scar’s too long or if the conduit’s not good or something’s going on. I just got to take everything down and make a new one.

Dr. Ziho Lee:     

I don’t like to make new ones because it’s a big surgery, but if I have to make a new one … You could see the conduit is really short. I’m not able to stretch it at all. It’s tiny. This patient had undergone previous radiation, and so the tissue’s already been compromised. And this patient had a scar tissue on both sides. So this patient has a problem on both sides. I’m not able to make it reach at all. What I have to do is I got to just take everything down and just build a fresh new one.

When I do this, I do like robotic surgery. So again, most of the surgeries I do are going to be all robotic. What I’m doing here is I’m just measuring the distances with this piece of string. I’m measuring how long of a bowel segment I need to take. This is the old ileal conduit that I’m going to cut down. And then this is the new piece of bowel or the new conduit I’m going to make. I do like to do this robotically because when I do these robotically, your biggest incision is usually like 12 millimeters. That’s just over a centimeter. So this is the stapler I use during surgery. I’m reconnecting the bowel together here in this situation. So I’m reconnecting this bowel, just so patients … The bowels are restored. I have this new conduit and I’m literally just connecting everything back together. So the left side, and this is the right side. There’s the ureter there, and I’m just going to connect everything back in place. And that’s pretty much it.

Dr. Ziho Lee:     

I know my talk was a little bit technical. I did want to show a little bit of some of the techniques we’re using here at Northwestern. I think it’s a good opportunity for patients to see what goes on in surgery beyond the, “Oh, everything went well.” Or, “Oh, I just did this to this.” If you have this issue, I think it’s nice just to see what could potentially happen.

So these strictures or scar tissue that forms after surgery, it’s not uncommon. I said up to 20%. And so I do see quite a number of patients who travel from all over the country for this issue. Reconstruction is difficult. It is associated with morbidity. And so it is something I don’t take lightly, but in my opinion, having a one-time surgery that results in a permanent fix is a lot better than getting stents or having a tube in your back every six … Every six weeks, excuse me. And then I think robotic repair, the way we approach it in a really stepwise pattern, it helps me collect my thoughts. It makes it so that, “Okay, if this doesn’t work, I’m going to move to the next step. If this doesn’t work, I’m going to move to the next step.” It just helps me stay oriented, especially if it’s a tough case or there’s some stress involved. It just helps me stay organized.

Dr. Ziho Lee:     

I really want to thank everyone for listening in. I know the talk was technical. I hope that you guys got a lot out of it. If you have any questions, feel free to drop me a line via email or via X. Happy to answer any questions. And if you’re having this problem personally, I’d be happy to see you. With that, I’ll turn it back over to Patricia.

Patricia Rios:

I want to thank Tony for joining us today. Tony’s one of Dr. Lee’s patient, and Tony has had one of these repairs. So he’s going to tell us about who he is, what his journey was like with this repair.

And after that, we’ll be able to also ask some additional questions for Tony. So with that, Tony. I’m going to hand over the mic to you, so you can tell us a little bit more about your journey with this stricture.

Anthony Vacek:

All right. Well, I’m a 79-year-old guy, retired sales guy, or salesman, I should say. How everything started, I had frequent urination, had a CT scan. My urologist retired. I got a new urologist. He looked at the pictures and said he wanted a CT scan with contrast. He did a couple procedures locally going in and trying to scrape …

Anyway, I was diagnosed with bladder cancer and I went to Northwestern and had bladder removal. They took all that stuff out, and I ended up with a stoma. Every six months or whatever after the initial surgery, which was in December of 2022. In July of 2022, I went in for a checkup and my kidney function wasn’t where it should be. So that’s when I met Dr. Lee. And he looked at it and he had to redo the conduit from my kidneys to the stoma. It’s been successful. I had been going every six months with tests prior too, and my kidney function is good. And actually, my checkup in January of this year, Dr. Lee said, “I’ll see you in a year.” So everything is going very well, and that’s my story.

Patricia Rios:

Thank you, Tony. We’re happy to hear that you responded well to the surgery and you were in the best hands. I’m curious to know, how was the recovery process? I know you had your surgery in 2023, so it’s been some time since you’ve had the surgery and had the checkups. What did recovery look like for you?

Anthony Vacek:

I walked away from it or left the hospital. I was a little tender because of the incisions for maybe a week. Everything, the recovery was great. I think I’m one of those technical guys. Everything worked the way it was supposed to.

Patricia Rios:

Happy to hear that. And I understand also you’ve been traveling a lot.

Anthony Vacek:

Well, just most recently, we took a trip to Hawaii. We spent a couple weeks there in the beginning of February. I travel. I mean, I have the stoma with the bag. I don’t have any problem with it. It’s just getting used to it. And I have an overnight bag that I plug into it at night, so I sleep through the night. So it’s just one more step thrown in, getting up in the morning, and that’s about it. Other than that, I think I’ve done very well.

Patricia Rios:

That’s great news. And before I ask Dr. Lee some questions, just my last question to you, Tony. During the recovery process, did you have to make any changes to your diet or would you say it stayed about the same?

Anthony Vacek:

No, everything was the same. I drink a lot of water every day. Other than that, I haven’t made any changes in my diet or haven’t had to.

Patricia Rios:

Okay. Thank you, Tony. And thank you to … I know there is a very special person next to you, and I want to thank her for being here with us as well for supporting you through the process and for being part of this webinar.

Patricia Rios:

Dr. Lee, thank you so much for your presentation. It was very comprehensive, and I hope those of our listeners enjoyed the many videos you shared because they really gave us that inside scoop into how these repairs are done.

And I want to begin by asking … Because a lot of the conversations or the content focused on ileal conduit. Could you speak a little bit about the techniques and all of these things apply to the other diversions?

Dr. Ziho Lee:

Yeah. So I think that’s a great question, Patricia. I just focused on ileal conduit because that’s the most common type, but these scar tissues, these strictures can happen with any type of urinary diversion, including neobladders. Reconstruction is very similar. I personally like managing patients … I think it’s easier when patients have a neobladder because the location is where the normal bladder would be, and so it sometimes makes things a little bit easier to see.

But I will say all these techniques do apply to neobladders as well, and we certainly take care of our fair share of patients with neobladders as well.

Patricia Rios:

Dr. Lee, thank you for answering that, and thank you for also addressing some of the questions that are appearing in the Q&A button. There was a question that came in around … And you briefly mentioned this, the nephrostomy tubes. Can you speak a little bit about that and how that’s used to manage?

Dr. Ziho Lee:

Yeah, so that’s actually a great question. So I actually came up with that concept, it’s called ureteral rest. And so I published a paper maybe seven years ago to coin this phrase, because if you think about it, scar tissue, it’s a narrowing. So when you have a stent, what’s happening is that stent is propping that narrowing open. So if I were to say, “Hey, let’s go operate on you right now with a stent in place.” When I go in, I may not be able to see all the scar. I may only be seeing a part of the scar, but the part where the stent was dilating quite a bit. I might leave some of that scar tissue there.

And so for me, I like to take all the hardware out of the inside, so nothing across the ureters, place a nephrostomy tube for about six weeks. And then what we do is we let the ureter rest and then I operate and that gives me the best visualization. In the initial study that I published, performing this rest was associated with a 21% higher success rates.

Patricia Rios:

Thank you. You mentioned stents. One of our listeners wanted to know if these ureter stents cause stricture or damage to the ureters in any way.

Dr. Ziho Lee:

Yeah, so you certainly can during placement, if you just try to jam it in there, you definitely want to be gentle while you place them. Typically though, if you have stents, they don’t typically make the scar tissue worse. But I will say when you’re placing stents or repeatedly placing stents, there is potential to make an injury worse. So let’s say there’s some scar tissue that’s pretty dense. You have a stent in there right now and you’re trying to exchange it. So you can have a little bit of injury or increased injury to the scar tissue when you’re working with these.

Typically, I don’t like long-term stents for that reason. Especially because the alternative is we can offer this more definitive option, that’s just my mentality. I’d rather just do one surgery, do it right and be done than keep doing this and belaboring this issue.

Patricia Rios:

Okay, thank you. There’s a question about ischemia and that causing a narrower caliber in a distal one-third of the ureters. This person would like to know what are the options available?

Dr. Ziho Lee:

For what?

Patricia Rios:

Yeah, no. So the question that was submitted is that there’s this ischemia causing a narrower in the distal part of the one-third piece of the ureter. And so they want to know what are the options? You mentioned several. Would this be … Yeah.

Dr. Ziho Lee:

That’s a pretty long area if it’s a third of it. What I would try to do is try to rotate that ileal conduit closer to healthy ureter and try to connect. If I’m not able to connect … Depending on how long it is, sometimes I do that flat procedure that I was telling you about. I also have been involved with helping develop some innovative techniques. Sometimes I use skin from the inside of your mouth. It’s called a buccal graft. It’s always wet, there’s no hair, it works perfectly in the urinary system. So sometimes I use skin from the inside of the cheek to repair these, and I’ve also used actually a patient’s appendix to fix these.

There are options, and I think … Here we can be pretty creative about how we go about fixing these. There are certainly options available to you, and it’s just finding the right person to do that.

Patricia Rios:

Thank you. And when looking for the right person, what are some tips that you have for some of our listeners?

Dr. Ziho Lee:

At the end of the day, there’s no guarantees with surgery. You could do a perfect surgery and get out and then the patient has a complication, or you could do surgery and be like, “Oh, man. That was a little shaky.” And then the patient does amazing. I think for me, a lot of it is the patient-physician relationship. Do you trust that person? Can you look that person in the eye or can that person look you in the eye and say, “You know what? I’m going to take care of you.” I think that’s the biggest thing because having someone that you can trust, I think that’s absolutely critical.

Another thing is someone that will answer your questions. I think everyone is busy, not just me, but everyone is busy. It’s hard to get to some of these messages right away, but someone who is available to talk and is going to go through these options with you, I think those are the major things. And then someone who feels good about doing surgery on you. Ask them like, “Do you feel comfortable doing this? How many do you do?” I think that’s a big surrogate, and I think patients have every right to ask questions like that because it’s your body. Really you get, really one good shot at this. And so you want to take your best shot first and you want to be comfortable and trust the person. And I think those are really critical for success.

Patricia Rios:

Thank you. Those are phenomenal tips. Thank you, Dr. Lee. Okay. So I’m going to direct the questions more to our listeners with neobladders. So there’s two questions related to that. One is the probability of getting this condition within 10 years of receiving the neobladder.

Dr. Ziho Lee:

Incidence goes down. I would say, most you’ll find out within six months or so. It’d be surprising to me if it was after two years you really had problems. I think in long-term, I do see some patients who’ve had ileal conduits for other reasons as a child. I’ve seen things happen 40, 50 years after. If you haven’t had any problems within two years, it’s probably unlikely you’re going to have an issue.

Patricia Rios:

That’s comforting to hear. This is a very specific question, again, relating to neobladder. How often should a single kidney, mild hydronephrosis person with neobladder get image follow-ups?

Dr. Ziho Lee:

It’s variable. I would say it really depends if the patient’s having symptoms or if the patient is having problems with the kidney. I think it’s very variable. Not knowing all the information, I would probably start with a renal scan. It’s a special type of study that helps see if things are draining. I’d probably start there. And if that looked okay, to me, I’d probably get an ultrasound once a year. But hydronephrosis by itself is not abnormal. I tell all my patients that, especially when you’re having an ileal conduit or a neobladder. So if it’s mild, I wouldn’t really be worried about it because that’s sometimes normal just because of the way the urine …

Normally, we don’t have hydronephrosis because in your bladder, the ureter tunnels through and there’s a stop gap, so it doesn’t go backwards. But when we do these complex reconstructions … When you do these reconstructions, what happens is that you just plug them right in. And so it can reflux and go back and cause a little bit of hydro. To me, not that big of a deal.

Patricia Rios:

Sorry, can you explain what hydronephrosis is?

Dr. Ziho Lee:

Oh, yeah. Sorry, sorry. So hydronephrosis is like dilation. It’s just like distension. So remember, if you have that hose and someone is stepping on your hose, the water behind there is going to swell up. It’s going to get bigger and bigger. That’s called hydronephrosis, essentially, where your kidney swells up a little bit.

Patricia Rios:

Okay, great. Thank you. Thank you. I’m going to ask our friend Tony to come back on screen. I see we’re near the end. Thank you for answering the questions directly in the chat, Dr. Lee, and for also addressing the live questions. I have one question for the both of you to close us off. As it’s customary, we ask all of our guest speakers to leave us with what is the one message or one thing that you want our listeners to remember from this talk.

We’re going to start with Tony, if that’s okay Tony, if you don’t mind sharing. What is that one takeaway that you would like those individuals who are listening today, who may be experiencing this or maybe considering surgery? What would you like them to keep in mind?

Anthony Vacek:

Well, I don’t think they should be afraid of it. I had it, like I said, in December of 2022 is when I started this journey, and everything is great. My lifestyle has actually improved. One of the reasons was I was getting up to go to the bathroom six, seven, eight times a night. And after having gone through this, I sleep like a normal person. It’s nice to get a good night’s sleep. Don’t be afraid of it. Like I’ve said, I’ve been fortunate. I haven’t had any complications. I’ve had excellent care and follow-up with Dr. Lee and everything is great. So that’s what I’d like to leave the listeners with.

Patricia Rios:

Thank you, Tony. Thank you for sharing your experience with us. Dr. Lee.

Dr. Ziho Lee:

Yeah. I mean, I would say this is not an uncommon issue, but it sometimes can be pretty tricky to manage. At the end of the day, I think find someone that is going to be there for you and try … Everyone tries their best, I think. At the end of the day, it’s a patient comfort thing. I think finding someone who you feel comfortable with. I think what’s great is you have this network like BCAN that can find resources, other patients who’ve been through similar experiences to really reflect and see what experiences they had.

There’s a lot of power to talking over these issues because again, they’re challenging to manage. I’ve seen patients who’ve had stents for 10 years before they came to see me. These types of groups, even if it’s not this issue, are extremely empowering for our patients because it’s a group of like-minded individuals who really can help each other out. I really applaud this group and all the work, Allison and Patricia, that you guys go through to host these webinars because I really think that it’s important and it’s such a great resource for patients because education just empowers the patients, which at the end of the day, I think is absolutely critical.

Patricia Rios:

Thank you, Dr. Lee. And we would not be able to do these webinars without clinicians, experts like you, who are willing to donate your time to educate and support our community. So thank you so much for spending this hour with us. We really appreciate it.