Webinar: Living with a Stoma – Understanding and Managing Parastomal Hernias

January 28, 2026

In this webinar, Dr. Ziho Lee, Director of the Reconstructive Urology Fellowship and Chief of Trauma at Northwestern University Feinberg School of Medicine, will explain what parastomal hernias are, why they can develop after radical cystectomy, and how common they are for bladder cancer patients with a stoma. He will discuss symptoms to watch for, when medical care is needed, and available treatment options, including conservative management and surgical repair. A bladder cancer patient advocate will also share his personal experience living with and recovering from a parastomal hernia.

Year: 2026

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Full Transcript of Webinar: Living with a Stoma – Understanding and Managing Parastomal Hernias

Patricia Rios:  

Welcome to the Bladder Cancer Advocacy Network Patient Inside Webinar Series. My name is Patricia Rios, and I am the director of education and advocacy and your host for today’s webinar on Living with a Stoma: Understanding and Managing Parastomal Hernias.

Today, I’m joined by two extraordinary speakers. But before I introduce you, let me tell you a little bit about today’s topic. For many bladder cancer patients, a radical cystectomy or removal of the bladder may involve creating a stoma, an opening on the abdomen that allows urine to pass into an ostomy pouch. One possible complication after the surgery is the development of a parastomal hernia, which is a bulge or swelling around the stoma that occurs when abdominal tissue pushes through weakened muscle.

In this webinar, Dr. Ziho Lee will explain risks, options, and ways to maintain quality of life, whether you’re newly adjusting to life with a stoma or have lived with one for years. Dr. Lee is a reconstructive urologist at Northwestern University. He completed his general surgery internship and urology residence at Temple University. He then went on to complete a fellowship in advanced robotic urologic oncology and reconstruction at Temple University and a fellowship in urologic trauma and reconstruction at the University of Washington.

Dr. Lee has a particular interest in robotic reconstruction of the upper and lower urinary tracts. Joining Dr. Lee is his patient, Darrell Nakagawa, who will share his real world experiences and insights with his repair. Darrell is a very active patient advocate. He’s active with several organizations, including BCAN. He’s a bladder patient advocate for the SWOG Cancer Research Network, one of the five national clinical trial networks community organizations. He leads the BCAN Chicago chapter and has worked with the Walk to End Bladder Cancer Since 2020 on both local and national level. A renaissance man, Darrell, has diverse interests and passions. He’s a champion for diversity and inclusion and is active educating consumers on different wines from across the globe. So we will hear from Darrell right after Dr. Lee’s presentation.

Now, without further ado, I am going to hand over the screen to Dr. Lee for today’s webinar on Living with a Stoma: Understanding and Managing Parastomal Hernias. Dr. Lee, thank you so much for joining us. The screen is all yours.

Dr. Ziho Lee:

Perfect. Well, thank you, Patricia, for the warm welcome and Darrell and Allison and Patricia for the kind invitation to give this talk today. It is an issue that I’m very passionate about, and I’m going to share my screen here. It really is an honor to be speaking for the Bladder Cancer Advocacy Network. I think patient engagement, especially things like this and educational seminars are extremely important, not only to increase education on potential issues, but also it just empowers patients and clinicians to make informed decisions and really kind of affect people’s lives, so I really appreciate the invitation.

So I’m going to be talking about parastomal hernias.

Dr. Ziho Lee:

When I start, I always like to ask the question, what is a parastomal hernia? And so if we go to the actual Greek origin of para, it means beside or near. Essentially what it is, is … And the stoma obviously is an ileal conduit or a catheterizable pouch. Some patients may have Indiana pouches or anything where you can have an opening on the abdominal wall that allows access to urinary drainage.

So a parastomal hernia, essentially what it is when organs or fat push through a weak spot in the muscle or tissue that contains it. And so if we see this picture here, we see a stoma that’s protuberant, and this is where urine will flow out of. And what’s happening is around the stoma, there could be a little defect or a hernia where organs and fat can push through. And we’ll talk about why this is a problem and certain risk factors that can cause this.

Dr. Ziho Lee:

So what is a parastomal hernia? Again, so if we look at it from more of a anatomic level, not just from a clinical picture level, what we see here is this is the stoma that we previously saw right, going through the abdominal wall. So this yellow portion is abdominal fat, this is abdominal muscle. And then these white layers here are layers called fascia. This is a tight band that helps keep all of our tissues kind of in on the inside. And what a parastomal hernia is, is when there’s a defect along this fascia or this tight band that keeps all the tissue in. What happens is you can have herniation of a conduit. So the actual conduit itself can herniate through, which can kink the conduit and impair urinary drainage. We can also have fat or omentum. Omentum is a big body of fat that comes off the stomach, but having kind of fat contents in there can sometimes cause some pain or discomfort.

Or in the worst case scenario, you can have intestine. So you can have other small or large intestines that get trapped in the hernia. And you can actually have significant complications related to this, even more so than pain. What can happen is that the bowel can get stuck and essentially it can’t get out. And what’s happening is that it’ll start swelling up and portions of the bowel can actually become necrotic or incarcerated, and that piece of bowel can die off and that becomes a surgical emergency.

Dr. Ziho Lee:

And so when we ask the question, how often does this occur? The exact rate is unclear. And the reason for this is because all these studies have variable numbers of patients, different levels of experience, and also different levels of follow-up. But what we can all agree on is that if we look at this graph, what this graph is showing is that on the X-axis here, it’s months from cystectomy, and so it’s time after your ileal conduit formation, and then the Y-axis is how likely is this to occur?

And we can see here as time goes on and on and on, you just have a higher and higher risk of this actually occurring. And so overall in the literature, the rates can be up to 50%. So this is not uncommon and it can actually be quite common. Additionally, the average time to herniation is about 14 months after the surgery. And so this is some food for thought because the longer you have this conduit for, and as we know, our bladder cancer survivors are living longer lives after their initial surgery, you can see that sometimes up to 50% can have this issue. And so longer follow-up, so the longer you have this, it’s associated with higher incidence of this parastomal hernia.

Dr. Ziho Lee:

And so what are the major risk factors? So I’m going to go into little details and just summarizing when this can happen. No one knows exactly why. There’s not one reason why this may happen, but one is a fascial defect that’s greater than 24 millimeters, so about 2.4 centimeters. So if we see here, this is a cross-sectional image of an abdominal wall. We could see the muscle here, these pink structures here are the muscles. And this white layer, as we were talking about, is the fascia. Again, the fascia is this tight band. So it keeps all our internal organs in and tight in the abdominal cavity. It’s why a lot of times you don’t have hernias, but when you have hernias, that’s when you have a defect in the fascia. So when we make the ileal conduit or we make a stoma at the time of surgery, we have to make a small hole within the abdominal wall so we can bring up that stoma to allow the urine to drain to the outside.

And sometimes we find that when the hole is made very large, we can have an increased risk for these parastomal hernias. Additionally, patients with higher BMIs are at higher risk, patients with poor nutrition, patients with other hernias or history of hernias, maybe you have a hernia around your belly button or a hernia in your groin. So patients with a history of hernias, they’re just predisposed to more hernias. Additionally, patients who have a long operative time also have an increased risk, female gender, and also tobacco use. So those are some risk factors. It’s not like any one of these will definitively cause a hernia, but when we go back and look at the data, these factors are most closely associated with the formation of a parastomal hernia.

Dr. Ziho Lee:

And so why does this matter? Why is this an issue and why should we care? Well, parastomal hernia, it can lead to pain. So a lot of patients that I see will say, “Oh, you know what? I have this pain that’s the constant. It’s always right around the stoma site.” That could mean maybe a piece of intestine is stuck in there, a piece of fat stuck in there, and it can’t get out, and part of the oxygenation is compromised, so your patient’s going to have pain. Also, a big issue is stoma bag application. So sometimes patients with parastomal hernias, what can happen is that it’s hard to place the bag on the actual stoma and have it stick because you have this protrusion or this hernia that’s impairing that ability of your stoma bag to stay on.

We also talked about bowel incarceration. That’s again, when the bowel gets stuck there and it twists on itself and it loses blood supply. And what happens is the bowel actually dies. And that’s an absolute emergency that should be addressed as soon as possible. It can also cause blockages in your intestinal segments or blockages in your urinary segments, this obviously warrants immediate medical attention.

Also, another major issue is that it can decrease cosmesis. So patients sometimes will come to me and say, “Hey, I really don’t like the appearance of this. I get self-conscious, when I’m going swimming or I’m at the beach.” Actually a good portion of my patients who’ve had ileal conduit, I actually have a fair number of those who do triathlon. And I think cosmesis is an important … If it’s important for the patient, it’s important for me. And so I think it’s really important to see how these things can affect patients. And up to 45% may require surgery for parastomal hernias due to some kind of complication. So this is something that we should all be aware of and all should be on the lookout for.

Dr. Ziho Lee:

So when I evaluate patients with parastomal hernias, I ask myself, what do we need to evaluate and when is this a real problem? Number one is symptoms, right? Does the patient actually have symptoms? If the patient has no symptoms and it’s not really that big of a deal, we don’t really always jump to, “Oh, you have to get some kind of treatment.” Is there any obstruction? That’s a big thing. Like I talked about, if you have blockages in your urinary system where you can’t empty your urine adequately or you’re having problems with your intestinal segments, that becomes something where we need to jump in quickly and treat. I also look at the nutritional status, make sure patients are healthy enough to undergo some type of surgery. Then also, do the patients have any other hernias? Because if I go in and operate, it makes more sense. Why not fix every hernia while I’m in there? And so these are important questions that I always try to answer when I evaluate patients with parastomal hernias.

Dr. Ziho Lee:

So a CT scan, very important for operative planning. I like to show this image because when I talk to my patients, when I see patients in person, I like to show them their CT scan. Obviously not everyone is going to have medical expertise to read it, but it really puts into context what you’re looking at. So if we see here, so this is a patient, this is a cross-sectional image. So we’re going cross-sectionally and this is the spine back here and the top of the screen is the belly. And I’m going to pause it here as we go down and you’re going to see where this hernia is.

Sorry, I missed the pause there, but we can see right here, so this is the defect in the abdominal wall. And what we’re seeing is there’s a very big defect and there’s a piece of bowel that goes through. There’s a … I’m sorry. What you can see is it’s a big space and you can see and conceivably imagine a piece of fat or a piece of intestine going through that area. Even without medical expertise, you can see, “Well, this doesn’t look right.” If you look on the right side of the image, this is a normal abdominal wall without a hernia, but you see here on the left side, you see how there’s contents going right up to the level of the skin. And so you can see how this could be a problem.

Dr. Ziho Lee:

And so just to be completely honest with everyone, I think one of the most important things, at least in my practice, I do a lot of very complex reconstructive surgeries where we get referred patients from all over the country for management of complex issue that maybe not everyone wants to reconstruct. But to be honest, and I think the most important thing is just being honest with patients and being very blunt about what the expectations are.

And so to be honest, management of these hernias are very, very difficult. And one of the reasons for that is because non-surgical techniques, non-surgical techniques, you’re really just temporizing the issue. And the reason is because you have this hole within your abdomen where you’re having your intestines, your urinary structures, fat, just herniating through. And so because it’s a structural issue, doing something non-surgical, you’re really just temporizing the issue. And so I compare it to if you’re on a boat and there’s a small hole in your boat and all you have is a little bucket and you’re trying to dump all the water out as it’s filling. And so you can stay afloat with these non-surgical issues, but you’re not really fixing the hole or the problem. Weight loss can minimize the pressure within the abdominal cavity, so weight loss always helps.

Dr. Ziho Lee:

And then the other option is to wear a hernia belt. And essentially what it is it’s a belt that maybe some patients wore during surgery or after surgery or maybe you do now, but what it’s doing is to help keeping all the contents compact and within an enclosed space. But again, as soon as you take that abdominal hernia belt off, you maybe have a cough or you laugh, you’re going to increase pressure in your belly and you’re going to increase the risk for that hernia to happen again. And so really non-surgical techniques really just temporize the issue. And so definitive management is usually surgical.

Dr. Ziho Lee:

Surgery is hard. Not a lot of people like to do these surgeries. Most of these surgeries, to be honest with you, are done by plastic surgeons. In my training, I never actually trained to do the parastomal hernias, but I learned with some plastic surgeons. When I got to Northwestern, I was very fortunate to work with plastic surgeons who helped me learn how to do these surgeries. And I’ll go into that in a little more detail, but these have a high postoperative complication rate, so 17 to 28%. That’s a high rate for me. Things that can happen, you can have obstructions. Sometimes when you tighten up that hole, you can make it too tight. You can have wound complications. A lot of these treatments require mesh, and so the mesh can become infected, and you can injure surrounding structures, namely bowel. And so this can be associated with a pretty high complication rate.

What’s more important though is a lot of these issues, unfortunately, there’s a high recurrence rate. In the literature, up to 50% of these can come back. The average time recurrence is nine to 18 months. Why is there a high recurrence rate? I think part of that is because naturally the fascia that we have, it’s a reflection of your body’s ability to heal. It’s a reflection of your overall nutritional status, and so your fascia is innate to your body. And so while these surgical mesh, you can certainly get the tissue back together, sometimes the healing process can take longer. And so in the literature, it’s reported up to almost 50%, which is very high.

Dr. Ziho Lee:     

So for me, when I make the decision to offer surgery, I really talk to the patient and really evaluate their goals. What are their symptoms? What’s their baseline health? Are they really active? Are they taking care of the grandkids? Are they going out living very independently? Do they really want this? And then what are the potential complications? And so I really like to get to know my patients and really talk about, is surgery right for them, because it’s not right for everyone.

Dr. Ziho Lee:

And so how do we fix this? I think for me, when I talk with patients about doing complex surgeries, I like to be as in depth as possible. I really want to give an objective overview because that’s my job is to you, give patients a clear visualization and clear expectations on what to expect after surgery. So here, I just want to go over the different repair types. I also developed a new technique on how I fix these, and so I will be presenting that as well.

And so the first option is to direct fascial repair. What does that mean? That essentially means you take sutures, normal sutures, and you literally just stitch up that hole. That we just don’t do anymore. And the reason is because almost all of them just recur. You can see here, recurrence rate, 46 to 100%. That’s so high. That’s so high that I wouldn’t even offer this, right? And so based on the literature, we no longer offer this because we know that repairing it, just plugging that hole with some stitches, it doesn’t work. And so most of the durable repairs or the repairs that actually work utilize some kind of mesh. And so there’s different types of mesh repairs. So on the left, this is an open repair where you make an open incision.

Dr. Ziho Lee:

And so when I do open repairs, I usually work with a plastic surgeon to do these together. Nowadays, the ones that I do, I do them robotically. If you can see here, this is the incision that I use to repair parastomal hernia. The incision’s about three to four centimeters in size. So I literally make a hole four centimeters to fix this and most of my patients go home either the same day or the next day. But if you compare left and right, all things being equal, I think the robotic approach really does offer unique advantages.

Dr. Ziho Lee:

So, when do I go open and when do I go robotic? Open, when we do open surgery, meaning that we make a big incision like you saw on that left side, there’s more potential morbidity. Why? The incision’s big. You can have more pain. Patients stay in the hospital longer. When do we do this? Typically, I try not to do open surgery in my practice. I will do it if it’s needed or medically indicated, but I reserve this for larger, more complex hernias where maybe I’m not able to get the fascia together using mesh and using standard techniques, or if there’s other complications related to the intestines.

And so this is the open repair is something I do for larger and more complex hernias. This would be the traditional gold standard. There’s more data available. With the robotic repair, it’s less potentially morbid because we’re making small incisions. Nowadays, I just do the single three, four centimeter incision to access and do the surgery, which has worked really nicely for me. I use this for smaller and more simple hernias, and it’s a great option. I would say majority of patients have these smaller, simpler hernias. The problem with the robotic repair is there’s limited centers with expertise and there’s limited data. And so there’s not many surgeons offering robotic parastomal hernia repair, especially in the urology space. And so there’s limited centers that may offer this.

And additionally, we’re looking at our data right now, but is there potential for less complications? From a theoretical standpoint, yes, likely there’s going to be less complications just because it’s a less morbid operation, but obviously the jury’s still out. And with the robotic approach, we’re taking on smaller, simpler hernias compared to the open approach.

Dr. Ziho Lee:

So just really briefly, I did want to go over certain techniques because I think it’s important for patients to understand how these things get repaired. The technique that I used to always do is something called a keyhole technique, essentially what it is, so this yellow tube or this pink tube here, sorry, is your stoma and this blue piece here is a mesh. And what you do is you make a hole in the middle of your mesh and you literally put the stoma through the hole and then you sew this in place. And this has worked nicely. There’s a lot of data in the literature regarding this.

Dr. Ziho Lee:

I’m going to show you guys really quickly just a brief … This is the stoma, so if you could see here, even without a big medical knowledge base, you can see … So this white intestinal segments are in the stoma, so this is a parastomal hernia that contains a lot of intestinal segments. And so you can see, again, a lot of this white stuff is intestines that’s stuck within this parastomal hernia.

And so this is me doing robotic surgery. So this is not where I place the single four centimeter incision. This is a multi-port robot where I make five dime size incisions within the abdominal cavity. Again, it is minimally invasive. Instead of making a single three centimeter incision though, I’m making multiple eight millimeter incisions. But what I’m doing here is, if you can see here, I’m just orienting everyone, this is just intestinal structures. And what I’m doing is I’m just trying to clear off this stoma. This whitish clear object here, this is our stoma. And what it involves is just cleaning it off.

And you can see, I’m going to pause it right here. You can see here, so this is our stoma here, this piece of bowel going through. So we are inside the belly looking from the inside up to the patient’s abdominal wall, the skin. And you can see here, this is the hernia right here. So this is after I removed all the intestinal contents and everything inside. And so what I’m going to do is I’m just clearing off some more intestines, so this is part of the bowel. I’m using scissors robotically just to remove all these structures. I’m going to clean off this ileal conduit here. So this is what transports the urine. And what I’m doing is I’m really clearing off a broad surface to allow my piece of mesh so I can do that keyhole technique where I take this big piece of mesh and I sew it in.

So first what I’m going to do is I’m going to take some barbed suture. So this suture is interesting, it’s barbed. It’s like a cat’s tongue. It’s smooth going one way and it’s rough going the other way. And so when I’m pulling, it’s smooth, but if it doesn’t pull the opposite way, so it prevents the suture from loosening up because it’s barbed and so it prevents that pulling back. And so this is a great suture that I use in a lot of my reconstructive surgery. But again, what I’m doing here, you can see that the hernia is closed.

But like I said, if I just use normal sutures, that hernia is going to come right back. So what do I do? The keyhole technique, what I’m doing is this is a piece of mesh, and what I’m going to do is I’m going to sew this piece of mesh on the inside. And so what it’s doing is by putting this piece of mesh, we’re preventing the intestine or fat from going into that space, and so it really reinforces that closure.

And so this was a great technique. This is the technique that I’ve really was my go to before I invented a different type of technique, but this is pretty much what I do. And I love this surgery because again, it’s minimally invasive. I do it robotically, much less pain for the patient. Most patients are out either the same day or the day after, and so it’s a very good option. And so this is surgery we certainly offer here at Northwestern.

Dr. Ziho Lee:

What’s another type of surgery? It’s called a sugarbaker, just going into the weeds a little bit. So essentially what I’m doing here is, again, this pink is a stoma. That’s where your urine’s come out of. And what you do is you take a big rectangular patch this time. So you’re not making that hole, you’re not doing the keyhole, you just take a patch and you’re literally just patching the piece of mesh onto the stoma and over the hernia defect.

Dr. Ziho Lee:

I personally don’t like to do that procedure because I think it can cause compression on the stoma, so I don’t usually do it. But again, when we look at recurrence rate in the literature, it’s relatively high, 10 to 30% for the keyhole, 10 to 20% for the sugarbaker. And so that’s the technique, that was my go to for a very long time.

Dr. Ziho Lee:

And so what are some disadvantages of mesh repair? So for me, I really like surgical innovation. We have an entire division within our division of reconstructive urology at Northwestern where we look to develop novel surgical techniques. We also do novel medical device development in conjunction with our engineering colleagues at the Northwestern University. And so for me, a big passion of mine is how do we make surgery better? I want to be at the absolute forefront. I want to offer the absolute best care for my patients. How do we get there? And a big part of it is really pushing the boundaries of surgery and really looking at myself in the mirror and saying, “Well, I told you guys, it has a pretty high recurrence rate. So what can we do to make this better?”

So with standard mesh repair, like I told you when I was doing the keyhole repair, recurrence is not uncommon. So about 20% will have recurrences. That to me, we can improve on that. I want to get better on that. I want to be able to offer a better surgery. And then what’s another disadvantage is there’s large mesh exposure. You saw in the robotic footage that I was showing you guys, there’s a big piece of mesh that’s on the abdominal wall, and that’s just exposed to your intestines that can cause inflammation, it can cause complications. Not to mention in my practice, I do a lot of revisional surgeries. So a big part of my practice is doing surgery and patients who’ve had surgery 2, 3, 4, sometimes 20 times. And so when I go in there, there’s always going to be a lot of scar tissue, but this mesh will make that scar tissue exponentially worse.

And so in my practice, I was like, well, these patients with large mesh exposure, it makes the operation hard, alright. And so in my mind, I really had to reflect and say, “What can we do? How can we make this better?”

Dr. Ziho Lee:

And so I developed this technique, I call it the mesh suture technique. Essentially what it is, it’s a suture, but it’s a piece of mesh on a suture needle. And so what it is it has all the tissue ingrowth properties of the mesh while minimizing the footprint. This suture is much smaller than using that big sheet of mesh. And so because of that, my hypothesis or the idea was that, well, maybe by using this, I can either improve outcomes for my patients, but also make it so that complications related to mesh and reoperation afterwards is more amenable. And so the way that I do my technique is, again, I use that absorbable barb suture to kind of close everything shut and then I reinforce that with a mesh suture. And I’ll show you a video of how it is.

And so the reason I think this works is that I harness kinda the forced distribution properties of the mesh during tissue ingrowth, and I minimize the mesh exposure. So what I’m trying to do is maximize the advantages of this mesh while minimizing exposure and complications related to the mesh.

Dr. Ziho Lee:

And so if we can see here, you can see there’s a hole here, this black and white structure here, this is another piece of intestine. And so this is a patient who has intestinal segments inside the hernia. So I’ll be very brief here. So this is a case where I’m using the, we call it the single port robot where it’s just a single incision. It’s that four centimeter incision that we use. And what I do is I’m drawing all of … This patient had a lot of fat. I think I had already removed the intestinal contents, but we’re getting all kind of the fat out of this area. And again, what we see here on the left side, this is the stoma.

And you can see here this hernia right around, this big hole right at the top here. And you can see how intestine and other bad things can get stuck in there. And so again, what I’m going to do is I’m going to use my barbed suture just to bring all the tissues together. And so this, again, works nicely because I can close things very tightly and there’s a minimal risk that the suture’s going to loosen up, but this I do just to get the tissues close together. And then after I do this, what I use is I’ll use this mesh suture as you can see. And so essentially it’s literally a suture made with mesh. You see these pores, these pores are why mesh kind of works.

And what’s great is the exposure of the mesh, it’s not that big sheet of mesh that we see. It really minimizes the carbon footprint of the mesh. And so that to me is a big win in my mind. And again, it’s just an easy suturing through, tighten things up, and we sew everything in place. And I really like this surgery. This is how I do 99% of these now, the ones that patients who come in and see me. And so this is something that I found to be quite successful thus far. Again, it is a novel kind of newer technique, so I’m still following my patients, but I’ve been very pleased with the outcomes thus far.

Dr. Ziho Lee:

So in conclusion, parastomal hernia is unfortunately common after urinary diversions, especially ileal conduits. This is a big problem for patients. You could have problems placing the stoma bag onto your abdominal wall. You can have pain. And also it can lead to life-threatening complications like bowel necrosis or strangulation of your intestinal segments. Reconstruction, it’s difficult and associated with high recurrence rate, also has a significant complication rates.

I do think when possible, I always try to recommend a robotic approach, just in my hands, I find that patients are much happier after surgery, a lot less pain, and a sooner return to activity. Because for me, anyone who’s a bladder cancer survivor, it’s like everyone else. I mean, you just got to enjoy your life and my job is to do what I can and facilitate what I can to help you do that. And so I really think that this mesh suture repair is simple and may minimize mesh-related complications. It’s something that I’m very passionate about. I’m continuing to try to improve the surgical techniques that we use to help our patients. And so I’m very happy with what we’ve been able to do here at Northwestern.

Dr. Ziho Lee:

So with that, I’ll conclude my talk, here are some references.

Dr. Ziho Lee:

Happy to answer any and all questions. Again, I’m just super, super thankful for the invitation to present here. I’m also super happy that Darrell’s here. He is one of my patients and is a big leader and advocate amongst bladder cancer survivors and it’s something that I’m very proud of him and very supportive because education and patient education is just so important because that’s how everyone gets better. I think having these open dialogues and finding out different perspectives is super important because if one person wins, everyone wins. And so I think this is a great, great opportunity. And so thanks again and I’m happy to answer questions and then obviously hear Darrell’s words as well.

Patricia Rios:

So Darrell, thank you again for joining us today. As Dr. Lee mentioned, you’re one of his patients. And having gone through one of those repairs yourself, you felt it was important for others to learn from your experience. So thank you for being here to share that with us. And I would like if it’s okay for you to share, starting with your bladder cancer journey and then talking about your preparation and what was recovery like for you after this repair?

Darrell Nakagawa:

Great. Great. Thank you, Patricia. So my radical cystectomy was May 24th, 2017, so eight and a half years ago. And like everyone, I heard the news of, “Well, parastomal hernias recur so to hold off as long as possible to get it fixed.” And I held off for just about eight years. And it was comfortable enough because there was minimal pain for me for most of the time. And there were some challenges in terms of finding the right wafer to fit the stoma and to fit my belly. As you can see, I’m a bit more robust than a normal fit person. In other words, I’m overweight, so prime suspect for a hernia. And around the seven-year mark, I began noticing more pain. It’s when I saw gas became a problem, and that really did create more discomfort with my hernia. And Dr. Meeks, my urologist, and I had discussed getting the hernia fixed several times through my journey, and I’d even considered contacting the plastic surgeon, only we never connected.

But around, again, my annual visit at seven years, I was told about, there’s this new doctor here at Northwestern, and he would refer me to him, and Dr. Lee would look at my hernia and see if that was something that he believed he could fix. And so he did finally contact me, and we scheduled a session, and we discussed having the hernia fixed.

And I said, This … It made sense that it was kind of neat that it would be robotic and that recovery would be relatively easy. And so we scheduled it for a certain date, and then I realized that it was right before a big conference that I was going to be attending. So that was not going to be good timing because of the amount of walking and exertion that happens at that conference. So we reschedule it for another time, and it was actually perfect timing because there was another time that I was going to be traveling, but I had enough time to heal the operation and whatnot and be able to lift my bag up into the overhead bin.

In terms of preparing, his direction to me was, at a prior webinar we had with BCAN on parastomal hernia, that doctor had advocated doing some abdominal exercises, whereas Dr. Lee recommended not doing any. So that was like, “Oh, this is good. I don’t have to go to the gym.” And again, the nice thing was that it was day surgery as opposed to having to go through open surgery.

When my cystectomy happened, it was open surgery, and I don’t know why the original urologist recommended open surgery versus robotic, but now I’ve had the opportunity to experience a full open surgery and then now the robotic. And now I would highly recommend robotic when possible. Why? Because again, it was that four millimeter opening as opposed to having to deal with the full open surgery, and that was a long and somewhat arduous recovery. It’s also possibly a longer surgery. Dr. Lee can confirm that or deny that. But also the great thing was that, again, this is being done by a urologist who knows a lot of what’s going on inside as opposed to just the plastic surgeon.

Also, healing was really easy because it was, rather than sutures, externally, it was just glue. So even showering and cleaning up was really simple. Clothes are fitting much easier. Changing of the wafer and pouch is much easier now, and I don’t have to be concerned with some of the extras that I used before. I have continued, however, to use the Stealth Belt because I find that really helps supporting the pouch, especially when it’s full. So I’m a huge advocate for the Stealth Belt. And post-surgery, there’s still the normal recovery from anesthesia. My bowels took a few days to activate, so there was some time with that, but it was a really simple surgery in my mind, and recovery was really simple. And I have noticed that I feel stronger now and a bit more stable in even climbing stairs and whatnot.

So that’s kind of why I said there’s this newer fixing of the parastomal hernia that really gives us bladder cancer patients greater opportunity to fix some of the possible effects from our original cystectomy.

Patricia Rios:

Thank you, Darrell. Thank you for sharing your experience and being an advocate, not only for those who may be experiencing this, but for bladder cancer patients in general.

I heard the word belt a lot during the conversation, and so there were a lot of questions around belt as well. So I thought maybe we addressed those. Dr. Lee, you did talk about them about as a non-surgical technique for management. Are these hernia belts effective in preventing? Are there any specific anti-hernia support belts that you recommend, or are there any tips on how to best use them? I know there’s a lot of questions around belts, but as much as you can share with us.

Dr. Ziho Lee:

Yeah, so that’s a great question, and that’s one that we get asked a lot. Hernia belts, it’s really surgeon dependent on who likes to use them. For me, I do not perform cystectomy and ileal conduit or neobladder and Indiana pouches for cancer, but I do it for reconstructive issues or complications from cancer like radiation and things of that nature. For me, I do the entire surgery all robotically. I do not use these belts routinely. And the reason is because sometimes patients, it’s just hard for patients to do. It can be uncomfortable, especially when they’re eating because you want that to be very nice and snug. Essentially what it is, it’s a band that’s Velcro strapped and you wrap it around your belly and there’s usually a little plastic ring that kind of buttresses where your stoma is. And some patients can actually have pain there because of the plastic compression, but I typically don’t recommend just routine use because I think sometimes it’s a little more trouble than it’s worth, and that’s just my personal opinion.

I do know back in training, sometimes we had an abdominal binder that patients would wear for one to two weeks. To be honest with you, I’m not sure how much that actually helps in preventing. I think where I see the most utilization is perhaps a patient who is very hesitant to undergo surgery, who maybe has some nonspecific pain in the belly where the abdominal binder helps with the pain because sometimes with these hernias, if you push, you can push whatever contents are in there back out of the hernia. And what you’re doing is it’s just buttressing it. But remember, as soon as you take it off, when you’re going to take a shower, you’re going into a pool or you’re getting change, the hernia’s going to come right back in. And so it’s really a temporary fix.

I do think that in the right situation, it’s certainly useful as an adjunct. In my practice, just the way that it is, my practice is based on a lot of referrals from really all over the country. And so when people come and see me, they’re usually like, “When can we do surgery,” not about belts. So it’s a little bit of a skewed, but I do think in the right situation, an abdominal belt could be useful for a lot of patients depending on what your goals are.

Patricia Rios:

Okay. Well, thank you for answering that. Darrell, your question about exercise and trying to minimize that after concern with the surgery, there were a lot of questions that were submitted in advance around exercise in general. And Dr. Lee, I was hoping you could speak to that and on whether there’s certain exercise that patients should avoid doing if they have a hernia or are there any exercise they should be doing that helps strengthen the fascia muscle around stoma.

Dr. Ziho Lee:

That’s a great question because my thought is that if you increase abdominal wall pressure, it could be pushing abdominal contents in that space. I think in theory, yes. But honestly, weight loss is very important for reducing hernias, not just parastomal hernias, and also just for general health. And so I never caution patients not to do certain exercises. And so my take would be to continue with the exercise. I wouldn’t really tailor your exercises to anything, but weight loss also helps significantly because it just decreases the amount of pressure in your abdomen. And so that’s a very important step that everyone can take that’s obviously non-surgical that can improve other aspects of your life.

Patricia Rios:

Great, thanks. Darrell, I see you nodding your head. Anything you want to add?

Darrell Nakagawa:

No.

Patricia Rios:

Okay. Excellent. Let’s see, there’s a couple questions here around … Sorry, I’m going through all of them. Dr. Lee, and Darrell also mentioned this, that there are many physicians, surgeons like you who perform these kinds of repairs. As you mentioned, most of them are plastic surgeons. And so how does one go about finding someone like you if they don’t necessarily live close to Northwestern?

Dr. Ziho Lee:

That’s a great question. In the urology space, there aren’t many urologists who offer the surgery. Off the top of my head, there are really two surgeons who do this from a urology space, because a lot of times it’s historically and traditionally it’s been reserved for plastic surgeons or hernia doctors because urologists, we just don’t do a lot of those procedures. I do have a fellowship program here at Northwestern, and my trainees, I graduated our first fellow last year. He does offer that in the LA area. He’s at Cedars-Sinai. His name’s Aurash Tavakolian, but it’s hard because … And this is why these educational events and when we meet up as urologists at conferences, dispersion and integration of ideas is so important because I think, again, all boats rise when the tide rises, it’s one of those situations where it’s about education and discussing these and having an honest discussion with ourselves, how can we best help our patients?

And like what Darrell was saying, that point about the ileal conduit, that’s a very astute point where, yeah, I mean, plastic surgeons arguably fix this way more often. They fix hernias way more often than I do. But I know that when they’re fixing something like this, and if there’s any question about the conduit, I know I’m getting a call. For me, my job, I have a practice where I deal with complications from these stomas and conduits. And so I’m very familiar with the anatomy. And again, I’m not saying this to say, “Oh, this has to be the way to go. This is the only option.” For me, I find that this works very well for my practice and we’ve had a lot of very happy patients from it.

And I try to do a lot of educational stuff. We have a robotic reconstruction course just because this subject modality of robotic reconstruction too is still really much in its infancy. And that’s why I did two fellowship trainings is because there was no fellowship at the time that would help me be competent in both areas in my opinion. And so I think as a field, we’re really trying to help our patients the best we can. And I feel very fortunate to have learned from the people that I’ve learned from. But again, it’s kind of like a team effort because it’s the patients, it’s having things like this, it’s talking with other surgeons to really come up with solutions. And it’s not wrong to do it with the plastic surgeon, that’s how it’s done at most places. And the plastic surgeon that I work with is one of the best surgeons I’ve ever seen.

And so it’s one of those situations where I think you got to know what’s right for you. And we’re always welcoming to patients from far away. I do telephone conferences too. So patients from far away, we can just meet and talk and see if it’s right for you and just have an open, honest discussion really, and because it may not be right for you. And so I think being honest with ourselves and really trying to do what’s best for the patient is what really drives these decisions.

Patricia Rios:

And we’re grateful for the years of schooling you’ve dedicated to be able to provide the service to our patient population, Dr. Lee. Darrell, I have a question for you related to the hernia. When you first became aware of it, did you know that it was a hernia? Did you know what it looked like? How did you first become aware of that and what tips do you have for others who are not sure and are considering whether to get that evaluated?

Darrell Nakagawa:

My hernia developed, started developing probably around the six-month post-cystectomy, and I just noted a little additional bump around the stoma. And I think I did ask my urologist because that was a time of more frequent visits, and he did sort of confirm that yes, there was a slight hernia, and we did sort of say we could hold off addressing it because we’d want to see if it gets any worse. And the protrusion of around the stoma did get larger over time. So the picture or the video, or the picture of the hernia that Dr. Lee showed was pretty much similar to what my hernia looked like. And Dr. Lee, that picture looked pretty even. Are there hernias that are more tilted or strangely formed?

Dr. Ziho Lee:

Yeah, I mean, I think that’s a great point. I think the ones that we showed, I do agree with you, they do kind of look anatomically symmetric. We do I do see some odd shape hernia. Sometimes it could be a combined hernia with the incision where the cystectomy was performed. And so yes, like you can see some pretty nasty hernias. Fortunately, those are the minority of the hernias that we see.

Darrell Nakagawa:

Great.

Patricia Rios:

And related to delay, I know Darrell, you waited around seven, eight years to have the surgery. Dr. Lee, are there any, sort of, I don’t know, complications or things that patients should be aware of if they postpone the hernia surgery? Does it affect their outcomes?

Dr. Ziho Lee:

Well, so most patients have this chronically and most patients wait for there to be an issue just because of the complex nature of the surgery. I will say with the hernia, especially if there’s intestine in there, there’s always a risk that can twist and get stuck and swell up, and that really is an emergency. And so if anyone’s having intermittent pain in that area, I think getting prompt evaluation is important.

Patricia Rios:

Thank you. So another question that has come up is around patients who are exploring their diversion options. And a patient may say that the parastomal hernias is something that worries them as they’re trying to decide whether to go for an ileal conduit or let’s say a neobladder. Do you have any thoughts on this?

Dr. Ziho Lee:

Yeah, I mean, I think that’s a great question. And its really that is something that it really has to be individualized for the patient because it’s trade-offs. I think there’s risks and benefits with every type of decision. With an ileal conduit, I typically say it’s the most time tested, simplest urinary diversion. You’re in and you’re out. Complications from it are pretty … A lot more people can manage the complications of them and you’re taking a smaller piece of bowel … And for example, I’ve done ileal conduit on very young children who’ve had it 30 years ago and it’s time for a new one and I don’t have a problem with taking another piece of bowel because only a small piece was taken to make it.

With the neobladder, obviously I think it sounds amazing like you just get a new bladder. Complications from that can be pretty significant. Some patients don’t like having mucus in their urine, but again, it’s trade-offs. I think complications-wise, there’s more recent data showing that the complications can be similar. But for me, it’s really kind of a trade-off on what the patient wants and what they really value. Because again, it’s kind of their lives. I mean, you know your life best and my job is just to tell you about the options and for you to make an informed decision.

And so I think with neobladders, if you have an issue with that, there’s many less physicians willing to take that on. There could be sometimes issues with nighttime bedwetting, there’s you can have some incontinence, there’s … There are risk and benefits to everything. And so I think really you got to talk with your urologist in detail and ask questions. And you don’t have to ask them all at once. I always say, “If you have more, make a list, send it to me on MyChart and we’ll figure it out. And talk with your family or your friend or someone and bounce ideas off of them.” And so I think it really has to be individualized.

Patricia Rios:

And I’ll add to say that another resource that we have available is our survivor to survivor program where we match peers, volunteers with someone who has gone through a similar program, and Darrell can speak more about that. But we find that it is helpful as patients are trying to decide which diversion to choose that talking to someone who has one of the diversions, it becomes helpful. Darrell, do you have any comments?

Darrell Nakagawa:

Not really. I guess one question I keep seeing in the chat or question is, can there be hernias as an effect from all of the other diversions? So if someone has a neobladder or an Indiana pouch, can they get a hernia as well and can it be fixed robotically?

Dr. Ziho Lee:

Yes. So for example, I just recently did a patient who had an Indiana pouch. In those patients, so an Indiana pouch is essentially you’re taking a piece of colon and you’re making a reservoir or a container and you have a piece of intestine that can go through either the belly button or through your belly. And the patient every four to six hours will take a catheter and catheterize themselves to empty the urine. You can have hernias from that. I just did a case of that. In that situation, I do not like to use my mesh suture technique. What I do is I will actually close that fascia with the mesh suture and I’ll place the stoma site at a different location, so I’ll just move it.

Patricia Rios:

Okay. Thanks, Darrell, for bringing that up. Yes. And Dr. Lee, there’s a question here from one of our patients. Regarding belly fat question, I’ve been told that I have a small parastomal hernia, but my urologist didn’t seem worried about it or offer any ways to manage it. Any comments or suggestions for patients who are experiencing small hernias?

Dr. Ziho Lee:

Yeah, I mean, I think it’s … Obviously I’m not there at time of evaluation or what was said or what was done. In my experience, what I can say is if the hernia is asymptomatic, meaning that patients have no symptoms from it, it’s small, they’re not bothered by it, I typically recommend not operating on it. And it’s because for me, sometimes less is more. And you really don’t … Every operation I do, no matter how good someone is, it’s an operation. There’s always risks. With not doing surgery, there’s no surgical complications if you don’t do surgery. And so if they’re not having symptoms, I typically don’t recommend treatment.

Again, as urologists in training, we all know what a parastomal hernia is, but in my training, I actually don’t even remember if I even repaired one parastomal hernia and we know it’s common and usually because we would just send it to the plastic surgeons or to a general surgeon or someone else to fix. And so I think for me, if you’re bothered by it, I think I would speak up and just make sure they’re addressed. If someone does not have the expertise to address it, maybe asking to see someone else, a plastic surgeon or someone who’s willing to see that or has more experience with that, I think that’s what I would recommend.

Patricia Rios:

Thank you. And do you see these hernias more prevalent in older adults? Do you think the patient’s age affects the recurrence of these hernias?

Dr. Ziho Lee:

Yeah, I certainly think with age, less muscle mass, the tissues get just, they’re not as tight. I do think that older patients have high risk of hernias.

Patricia Rios:

And there’s a question from one of our listeners around the evaluation of the hernias. Can hernias be evaluated with ultrasound? Does the CT have to have some sort of contrast or can it be evaluated without contrast? There’s a question about can the mesh travel postoperative?

Dr. Ziho Lee:

Yeah, so I mean, those are great questions as well. The mesh, always you can have complications with mesh. And that’s why I like my suture technique because you’re using such a small amount and the only part that’s actually visible in the body is the knot. And then each throw, which if it’s tight, you’re not going to really see much mesh. And so that’s why I like that compared to putting a sheet of mesh, which I’ve had cases where I had to take that out and it could be quite difficult. What was the first part of that question? Sorry, I lost my train of thought there.

Patricia Rios:

No, it was about ultrasound using that for evaluation.

Dr. Ziho Lee:

I typically like a CT. I think it’s much easier to see. I don’t use any contrast. Usually if there is contrast, it’s fine, but a quick non-contrast low dose CT is good enough for me and it shows everything that I need to see. And I think when patients see that, it’s a very much easier to process.

Patricia Rios:

Okay. And there are quite a few questions around exercise. Again, if there is any exercise programs you recommend, or I know we talked about avoiding, not so much the avoiding, but more about the weight loss. And can you speak about BMI? Because there’s a question about what would be the ideal BMI for individuals?

Dr. Ziho Lee:

Yeah, I mean, it’s hard because everyone has a different BMI and it’s a lot of times things that you can’t control like genetics and things of that nature. As a surgeon, I love seeing low BMIs, low 20s. I maybe get one of those every three, four months. A lot of the patients that I get referred are the higher BMIs where there’s a lot higher risk for these hernias. I don’t think there’s an ideal BMI. What I recommend is just general health. A lot of times if you have bladder cancer, you got to get the cancer treated. I would not wait for surgery. Do your best, but that’s why it’s important just every day being intentional, trying to be healthy, trying to do some exercise a couple times a week, maybe 20, 30 minutes, it’s very important. But just because you have a high BMI doesn’t mean you’re destined for complications. I’ve done cystectomies on BMI as high as 65, I think. So it’s a wide range, and for me, it’s like the situation is a situation and you just got to do your best. And that’s how I approach these things.

Patricia Rios:

Two last questions before we close. This one is more around, again, identifying the hernias. This person wants to know if a bulge or a bump, does that necessarily mean it’s a parastomal hernia or could it be something else?

Dr. Ziho Lee:

Not always a parastomal hernia. Sometimes initially at the early onset of surgery, just the way that the skin comes together, sometimes you can have a slight little outpouching that typically goes away with time. Usually though, if it’s a bulge around the area, it’s usually a stoma. Those are pretty easy to evaluate. I think it’s worth an evaluation.

Patricia Rios:

Okay. And do you see bleeding by any chance? Is that rare?

Dr. Ziho Lee:

Typically not. You mean bleeding from the stoma?

Patricia Rios:

Stoma, around the stoma?

Dr. Ziho Lee:

Typically not, sometimes patients with really bad liver disease or cirrhosis, you could see some really bad bleeding. Typically, you shouldn’t really be having that much bleeding from the stoma itself.

Patricia Rios:

Okay. All right. Well, thank you so much for staying a few minutes extra to be able to go through the questions. I know we didn’t go through all of them. There were so many good questions submitted in advance and also in the chat. I wanted to give the two of you an opportunity to really provide the take-home message. What would you like our listeners to take home or remember after this presentation? And we’ll start with Darrell and then we’ll close out with Dr. Lee.

Darrell Nakagawa:

I’m really thankful that I did have the opportunity to get my parastomal hernia fixed. Living with it with minimal pain was also acceptable, but it’s a personal choice of what’s going to work for you and what is going to provide the easiest life for you.

Patricia Rios:

Thank you, Darrell. Dr. Lee?

Dr. Ziho Lee:

I think my biggest takeaway is, again, I agree with Darrell, just to piggyback, it’s very personal. I think most of the hernias, it’s not going to cause a life-threatening bowel incarceration, but I think having education and having a talk and an honest discussion with someone who has expertise in this area, I would strongly recommend. Some patients, it’s the right answer, but again, for others, it may not be. And so I think it’s really a personal decision and everyone’s different. And I think that’s very cool that in this day and age, a lot of our medicine is going towards more individualized care because not everyone is the same and everyone has different goals and values. And having the option to do something doesn’t mean you have to do that something, and then it may be right for you and it may not be right for you. And I think the best way to know is talk to someone, talk to a medical professional, and it doesn’t hurt. And so I think that would be my big takeaway.

Patricia Rios:

And thank you for emphasizing the importance of patients being able to express what’s important to them. And so I think it’s important for patients to be able to express that with their providers and with loved ones as they’re considering many options, whether it is parastomal repair or other treatments.

So with that, I want to really thank the two of you for a phenomenal presentation. Thank you so much for your time, and we hope to have you back for a different webinar at a later time this year.