Managing Life After Neobladder: Incontinence Tips That Help

July 16, 2025

Transcript

Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit BCAN.org.

Rick Bangs:

Hi. I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast. I’m pleased to welcome today’s guest, Dr. Brian Zheng. Dr. Zheng is associate surgeon at Brigham and Women’s Hospital, and assistant professor of surgery at the Harvard Medical School. His clinical interests include urinary incontinence, overactive bladder, stress incontinence, bladder dysfunction, and reconstructive urologic surgeries. Dr. Zheng, thanks for joining our podcast.

Dr. Brian Zheng:

Thank you, Rick. It’s a privilege to be here and to talk about a very important subject today, which is urinary incontinence after a neobladder. This is something that profoundly impacts many people who’ve had neobladder as a result of bladder cancer and radical cystectomy.

Rick Bangs:

Yeah, very important topic. As you’ve mentioned, we’re going to talk about one of the more common problems, which is urinary incontinence. We’ve discussed offline not a lot of information about this, so we’re going to focus here on some tips and tricks that patients can use to address it, and go into a little more detail on the neobladder side. So, I’d like to start with the types and causes of urinary incontinence, because I think that’ll be helpful to have that kind of foundation, and have you call out those that bladder cancer survivors might experience because of the disease or their treatments or post-treats.

Dr. Brian Zheng:

Yeah, so Rick, I would say probably the two most common types of incontinence after a neobladder is what we call stress incontinence and urge incontinence. Stress incontinence, this is leakage that happens when there is abdominal pressure on the neobladder itself. What patients often describe is that they will have urine leakage or incontinence if they sneeze, if they laugh, if they bend over and pick something up, and this is because there’s a disruption of the urethral sphincter complexes that really kind of hold urine back, and these complexes are disrupted during a cystectomy.

On the other hand, there is also something called urge incontinence, and this is what we describe as patients will say, “There’s a strong …” when they feel like they need to go and pee, they get up, but before they reach the bathroom, they will have either voided on themselves or leaked on themselves. Leaks can happen in the evening at night as well where patients say they are constantly getting up at night to go pee and they don’t always make it to the bathroom. This is often due to just how much a neobladder capacity, how much it can hold, because the neobladder is often made of bowel and these bowels are contracting.

Other types of incontinence that neobladder patients can experience, or there’s something called overflow incontinence, and this is leakage because the bladder itself doesn’t empty completely. And then patients can always have a mixture of these types of incontinence as well. I think something maybe we should also mention that a lot of neobladder patients can experience, but often is somewhat intimate subject, is incontinence during intercourse. During intercourse, patients with neobladders can experience urinary incontinence. And often there’s multiple reasons why this happens, but often this is related to a sphincter issue, because the urethral sphincter itself doesn’t close well during intercourse.

Rick Bangs:

And so given all of that, what’s the impact of incontinence on the patient and quality of life? And I’m assuming there are things like you’re going to talk about things like maybe depression and isolation, and maybe people delay treatments, or they don’t even feel comfortable having conversations. So, what are some of the impacts?

Dr. Brian Zheng:

Yeah, so I would say incontinence after a neobladder is really, it’s a huge impact. And I would say it’s actually probably very under-reported in literature, because like you said, these are things that patients can be very ashamed of, or not brought up all the time during their patient visits. This is a huge impact not only socially, but I would say financially as well. Using incontinence products, like things like pads and Depends and diapers, they can be really expensive, so I think there’s a huge financial component to this as well. And like you said, incontinence can lead to patients saying, “I don’t do certain activities, like going out with friends or going to the gym,” because they are afraid that they go out smelling like urine all the time.

Rick Bangs:

Mm. Very debilitating. And you’ve kind of already hinted at this, but is this getting the attention that it might warrant in these discussions that we should be having with doctors and nurses?

Dr. Brian Zheng:

Yeah. I would say, like I said, it’s a little under-reported and under-discussed, even in the setting of a healthcare visit. And I think what happens is that during your healthcare visit or your post-op visit to your urologist after your bladder cancer treatment, a neobladder, and after surgery, patients and physicians alike are hyperfocused on the pathology. What did the latest CT scan show? How does the blood work look like? And everyone’s focused on what is the next step to beat bladder cancer. But then what’s often left on the table is the day-to-day implications of living with a neobladder and having incontinence. Obviously, addressing the cancer first is a main priority during these visits, but I think it’s important that we let patients know that incontinence is something that profoundly affects a patient’s recovery and future happiness, and it’s something that patients have to live with on a day-to-day basis.

Rick Bangs:

Yeah, and it’s also something that you might be able, depending on what’s causing it, you may be able to offer some tips and tricks like we’re talking about today, so it’s well worth the discussion, I think.

Dr. Brian Zheng:

Yeah. No, and I completely agree. I think maybe the other hand of it, besides everyone being focused on the cancer part, is that patients may think that it’s normal after their procedure to have this type of incontinence, or they feel like they’re just lucky to be alive and therefore this incontinence is trivial, which is … Or they’re concerned that there’s really nothing that you can do about this. But I think I’m really glad that we’re having this podcast today to really discuss about, there are lots of things that we can do to help or minimize this type of incontinence.

Rick Bangs:

Okay, so given our focus on neobladders, how does urinary incontinence resulting from a radical cystectomy differ in males versus females? Because I think there’s some anatomical differences here.

Dr. Brian Zheng:

Right, that’s a great question, because I think when people think of cystectomy, it’s not just removing the bladder.

Rick Bangs:

Yes.

Dr. Brian Zheng:

So for example, in men, it’s really what we call a cystoprostatectomy, and this means that the prostate itself is removed during a cystectomy for men. The prostate is combined with what we call the internal sphincter. These are muscles in the complex that work to hold urine back in patients with normal anatomy, and this is weakened or disrupted during a cystoprostatectomy.

On the flip side, for women, oftentimes women who undergo a cystectomy, not only are they having their bladder removed, but a lot of their other pelvic organs are removed as well, something that we call an anterior exenteration. This means that oftentimes the uterus is removed and the anterior vaginal wall. What the implication of this is that the pelvic floor is disrupted, and females generally rely on their pelvic floor to help them hold urine and prevent things like stress incontinence and prolapse.

Rick Bangs:

Hmm, okay, so we have different impacts, but there’s some similarity in terms of facing incontinence. Now I want to shift gears and get to the heart of the discussion, which is tips and tricks, and I’ve asked you to kind of prioritize by probability and success. You’ve given me three nice categories that we’re going to talk about, and those categories are behavioral changes, incontinence products, and medications and surgeries, so let’s start with the behavioral changes. What kinds of tips and tricks fall into that category?

Dr. Brian Zheng:

I think the behavioral changes are really important because these are things that all patients with neobladders who have incontinence can do, and these are things that patients can do at home with behavioral changes and minimal kind of effort on their hand. What I mean by that is, I would say, under behavioral changes, one of the big categories is something called fluid management. I never tell patients how much exactly they need to drink in terms of fluid consumption-wise, because everybody’s a little different, but I would always tell patients that they should drink when they’re thirsty. And the goal is to keep your urine at a light color, light yellow color. That’s how you kind of know that you’re hydrated.

I don’t have a magic number, but for example, let’s say it does take you 64 ounces of water a day to keep yourself hydrated, keep that urine at the light yellow color, then spread it out. So, I would say steady fluid intake throughout the day, because it keeps your bladder kind of filling at a steady rate so you’re not experiencing these sudden influxes of urine in your bladder, and that can help minimize incontinence.

Other things to think about when we think about fluid management is minimizing what I call bladder irritants. These are things like alcohol or caffeine, or some of the medications that patients may be taking, like diuretics. What things like alcohol and caffeine do is that they really stimulate your kidneys to make more urine rapidly in a short window of time. So, it’s okay. I never say, “You’re not allowed to have a beer anymore. You’re not allowed to have a cup of coffee anymore.” That’s not living. It’s hard to maintain that type of lifestyle.

Rick Bangs:

Right.

Dr. Brian Zheng:

Be cognizant, right? So, if you have a cup of coffee in the morning, maybe you just have to go to the bathroom a few more times so that you don’t wait for that urgency to kick in and leak. So, I think those things are important.

And then in the next big category, what I call behavioral changes, are kind of voiding pattern changes. Probably one of the most important things is something called double voiding, so that’s what you do when after you go to the bathroom and void, you sit on the toilet for a couple more minutes and take a little extra time and try to pee again before you get up. What this does is it helps the bladder empty more completely. Some patients with neobladders, they never empty their bladder all the way, which leads them to have a lot of urgency and frequency. They feel like they’re going to the bathroom all the time because the tank is never empty.

Rick Bangs:

Right, and that’s going to lower your capacity, right, because now you’ve already got some urine in there.

Dr. Brian Zheng:

Yeah, exactly, so double voiding will help with that.

Other things that are going to be important are something called time voiding. So what time voiding is is that you would go to the bathroom to void every two to three hours on the clock without waiting for that urgency to kick in, so you’re kind of preventing the bladder for being overdistended, and then you have that sudden urgency and leakage. And also, preventing your bladder from being overdistended is where you have stress incontinence where any kind of little bit of pressure just tips you over the edge and cause you to leak.

I would say maybe one of the other last things for voiding pattern changes is something called setting nighttime alarms, because some patients with neobladders can have incontinence at night, because their bladder capacity is not probably as big as it was before. I think a little bit of this is you have to be a little reasonable, right? So, getting up every two hours at night is probably not feasible, probably super disruptive to having good quality sleep,

Rick Bangs:

I can verify that, because the regimen that I had when I had my neobladder put in for the first week after the catheter came out was every two hours around the clock.

Dr. Brian Zheng:

Yeah, so that’s something in the beginning, it’s probably you’re like, “I’m going to suffer through for a couple weeks, and after I heal it’ll be better.” But I think doing that lifelong is pretty difficult.

Rick Bangs:

Yeah, I would say so.

Dr. Brian Zheng:

But I would say something reasonable would be setting an alarm to get up one, maybe two times a night, just so that you can empty your bladder and you’re not leaking on your sheets. That’s probably reasonable.

Rick Bangs:

Okay. All right, so I have two questions. On the double voiding, if I were to do a little bit of walking rather than sitting on the toilet, would that be better in terms of shifting the neobladder, or whatever? Because I think I heard somebody tell me that walking as part of the double voiding is a good thing.

Dr. Brian Zheng:

Yeah, definitely, I have some patients who will do that. Well, I think that can help kind of just shift around. It can help kind of relax the pelvic floor muscles a little more to help you empty, because it is true. Sometimes you’re just sitting on the toilet, people get so stressed out, they’re like, I’m trying to push and pee again, their actually muscles will tighten up. So yeah, I have patients who they will, after they finish peeing, get up. They’ll walk around, do some activity, and then five minutes later go back to the bathroom and try again.

Rick Bangs:

Right, right. Okay, and then nighttime, is more urine made at night than during the day? Because I remember I had a neobladder stone and we had to do … I had to urinate into a jug for 24 hours or something, and I remember, I think they told me that there’s more urine produced during the night? Is that right?

Dr. Brian Zheng:

Not typically.

Rick Bangs:

Oh, okay.

Dr. Brian Zheng:

Typically, usually two-thirds of the total urine volume in a 24-hour span, usually two-thirds of that is made during the day and then a third of that is made at night. Sometimes if patients have a lot of urine at night, we call it primary nocturia where their urine volume actually exceeds that a third amount.

Rick Bangs:

Okay. All right, good. I mean, because I like your answer better than the rumor that I had heard. Okay. All right, and then you’ve got a third behavioral change.

Dr. Brian Zheng:

Oh, yes. Pelvic floor exercise or Kegels, so these are exercises that patients can do on their own, but I’m always an advocate of actually seeing a pelvic floor physical therapist. And the reason for that is, for example, right now if I told you to … Well, Rick, you might be a little bit of a special case, but if I asked-

Rick Bangs:

I’m always a special case, Brian.

Dr. Brian Zheng:

I would say maybe the general population, if I asked them to, “Squeeze your pelvic floor muscle,” most people would look at me blankly.

Rick Bangs:

Yes.

Dr. Brian Zheng:

And the reason for that is, these are not muscles that you typically see on a day-to-day basis. It’s not like asking you to contract your biceps, which everyone can do that, right?

Rick Bangs:

That’s right.

Dr. Brian Zheng:

Well, I think it’s important to see a pelvic floor physical therapist because they can really teach you where those muscles are at and how to contract them appropriately. You can read the handouts and do it at home, but oftentimes, it’s like going to the gym versus having a personal trainer. I think the personal trainer will get you to your goal faster than just going to the gym.

Rick Bangs:

Right, so one of the things I think I heard, and again this may or may not be true, but I think clamping down my Kegels really hard is actually not the way you want to do these pelvic floor exercises.

Dr. Brian Zheng:

Correct, yeah. Often it’s kind of like a controlled squeeze and then a controlled relax. That’s how you kind of really focus that, so that’s why I’m always an advocate of taking a little extra time, seeing the pelvic floor physical therapist, and you don’t have to see them forever. Once you learn those exercises, you take that home and you keep doing it, being consistent at home.

Rick Bangs:

Right, and that pelvic floor therapist is somebody that you would make a referral to?

Dr. Brian Zheng:

Correct.

Rick Bangs:

Okay. All right, so now we’re going to talk about category two. Category two is incontinence products, and it’s a pretty wide range here.

Dr. Brian Zheng:

Yeah, so I would say, and these are really things that you have incontinence, you try your best with behavioral things to manage it, but you’re still leaking, so it’s like, what do you do? Some people you don’t do anything. It’s a lot of laundry, I would say, but things like adult diapers and adult bed pads at night are helpful. They can be bought in bulk at any of the grocery stores. I think the biggest issue, and things I find that are maybe a little disheartening, is that they’re often not covered by insurance.

Rick Bangs:

Yeah, that’s right.

Dr. Brian Zheng:

So, they can be extremely expensive.

Rick Bangs:

Right, and they’re not all the same, so I think the term for some of the male ones is guards, and not all guards are constructed equally. And I won’t promote a specific brand, but check out the way that they are laid out, because it makes a huge difference.

Dr. Brian Zheng:

Correct, yeah. And that, and everybody’s body shape and size is a little different, so you really have to play around with one that works for you.

And then I would say the next thing is something called condom catheters, or for females, something like PureWick or a vacuum kind of suction device. Condom catheters is exactly what it sounds like. It’s a condom that essentially one puts on your penis and then it drains into a bag that collects urine. And then for something like for female incontinence catheters, these are often … I think one of the popular brands is PureWick where it’s a vacuum device where it kind of sucks urine out of the vaginal area and collects it into a tube as well. Once again, the issue with these is they may not be covered by insurance. Especially for the PureWick, for female catheters, the condom catheters sometimes are, and then-

Rick Bangs:

Really?

Dr. Brian Zheng:

Yeah, so you can ask for a durable medical supply and those will often be covered. What I get concerned about is long-term use of these devices. Keeping a condom catheter on for long periods of time can lead to things like pressure injury or skin abrasions on a penis. I think places where these condom catheters and incontinence devices work is if you’re using it for short-term. So for example, if you’re going on a road trip and you just don’t want to be sitting in diapers and pads all day because you’re not able to use the restroom as regularly, then I think it’s okay to have a condom catheter, incontinence catheter in, right?

Rick Bangs:

Yeah, yeah, and if you were flying overnight, for example.

Dr. Brian Zheng:

Yeah. Exactly. Yeah, that’s like a perfect example of one.

And then the next thing is something what we call penile clamps. Once again, these, it’s exactly what it sounds like. It’s usually a styrofoam or a rubber clamp that one puts around their penis and would prevent incontinence. Once again, it’s not the most comfortable thing in the world, but it works. And I would say intermittent use, I would say is okay, because I think long-term, one, it’s not comfortable, and two, it can lead to pressure injury of the penis long-term.

But I often have patients who, say, for example, if I go to the gym and I know that I leak significantly if I’m at the gym, use a penile clamp then for an hour or two, and then when you’re done, take it off. Or if you’re doing a specific activity, like if I’m playing tennis, I know I’ll leak, then use a penile clamp. When you’re done with it, you can take it off. And then the last thing I would say is something called intermittent catheterization, so this is something that you should really talk to your urologist about before starting, but some people have incontinence or leakage because the bladder isn’t fully empty, so that’s when intermittent catheterization can be helpful.

Rick Bangs:

Okay. All right. So now we’re going to talk about the third category and we’re kind of getting a little more, I’m going to put it in quotes, “invasive,” more on the medical side of intervention, so we’re going to talk about medications and surgeries.

Dr. Brian Zheng:

Mm-hmm. These are things that we’re going to talk about, but obviously one should, as a patient, always be evaluated by a urologist before starting these things. So for medications, there’s not great medications for incontinence after a neobladder, but sometimes things like anticholinergic medication or what we call beta-agonists can basically prevent the neobladder from squeezing as often as, or contract as often as it does. And it can help with things like urge incontinence. Or there’s also medications if the issue is because the bladder doesn’t empty all the way, things like alpha-blockers, or a common name is tamsulosin, can help relax the sphincter muscles and help patients empty their bladder better. So those I would say are the medication side, and once again, I would encourage everyone to talk to their urologist about it to see if it’s helpful.

And then there are procedures that can be done, or surgeries that can be done, to help treat incontinence, and it really depends on what type of incontinence you have. So, things like slings or urethral sphincters or urethral kind of bulking agents can be helpful for patients who have what we call stress incontinence. And then for overactive bladder, there is a potential role for things like bladder Botox as well in patients with neobladders. But once again, these are, I would say, advanced therapies, I don’t necessarily like to call them, because they’re not necessarily invasive. Yes, they [inaudible 00:23:16] procedure or a surgery, but they often are well-tolerated and actually very effective for incontinence.

Rick Bangs:

So these would have, the last two you mentioned, the slings, urethral bulking, and the Botox, these would have just kind of general applicability. Are these tricky with a neobladder?

Dr. Brian Zheng:

The urethral bulking and the slings, yes. I would say they are trickier with patients with neobladders. Their anatomy’s a little different and a little altered compared to someone who doesn’t. It is trickier, but it’s certainly doable and effective.

Rick Bangs:

Okay. All right, so you talked in one case and I asked you who we can talk to, so let’s talk more broadly. I’m facing incontinence. I know I have this issue, daytime, nighttime, maybe both, so who can I turn to on my medical team to help with that?

Dr. Brian Zheng:

Yeah, so I would say the best person to talk to is actually your urologist, or either your urologic oncologist who did the neobladder, or whoever you’re following up locally. And the reason for that is often they’re the point person who knows, often you’re seeing either a reconstructive urologist or kind of a voiding dysfunction specialists who do that. It’s usually not your urologic oncologist who will treat the incontinence. Oftentimes you’re seeing a different urologist who kind of subspecialize, such as myself, who deal with voiding dysfunction. It’s oftentimes hard to know who these people are just by looking at websites and things like that, but oftentimes if you talk to your urologic oncologist, they often know the people. So, they’re usually a good first point person to talk to about this.

Rick Bangs:

Yeah. All right. And so, when should I seek help? How would I know this is something that’s reached a point where I can get help and I should ask for it?

Dr. Brian Zheng:

Yeah, so everybody’s threshold of bother for incontinence, I feel like, is a little different. Some people, if they’re doing one pad a day, this is the worst thing that’s ever happened to them, and other people are, they go through five or six pads and they’re like, “Oh, it’s fine.” So, everybody’s threshold is different. But what I would encourage or have patients think about is, how is this incontinence affecting their quality of life? Is this incontinence restricting them from doing the things that they’ve always enjoyed or wanted to do? If the answer to that is yes, then they should talk to somebody or see someone about this.

There’s no need to, what I would call, suffer in silence or be afraid of talking about this, because there are effective treatments, options out there. I would encourage everybody who’s, after listening to this podcast, doing the behavioral things, you can start that on your own without really talking to anybody because those are all helpful things. But if your incontinence is really not managed beyond those things, then talk to your urologist and see who they can have you see to help with managing the incontinence.

Rick Bangs:

Okay, great. Okay. Any final thoughts?

Dr. Brian Zheng:

I think this is a extremely important topic, and I’m so glad to get the opportunity to talk about this today, because I think it’s really under-discussed. I would encourage, I think, all patients, if they’re dealing with incontinence, to seek help because it may not be medications, or it may not be surgery, but there are just behavioral things, or even seeing a physical therapist that can really improve incontinence and quality of life. I think some people are, they’re like, “I just can’t imagine,” because a cystectomy and a neobladder is a big surgery, and they’re like, “Well, if dealing with incontinence is another big surgery, I can’t deal with that.” I encourage them just to see someone and talk about it, because there’s a lot of other things that we can talk about besides a big surgery or procedure.

Rick Bangs:

Right. All right. You’ve got a whole arsenal, which we’ve discussed today. So Dr. Zheng, I want to thank you for giving us a better understanding of urinary incontinence and some tips and tricks that people can use to address it.

Dr. Brian Zheng:

No, it was my pleasure, Rick. Thank you.

Rick Bangs:

If you’d like more information on bladder cancer, please visit the BCAN website, www.BCAN.org. In case people wanted to get in touch with you, could you share an email or Twitter handle or some other contact information?

Dr. Brian Zheng:

I don’t have a Twitter, but feel free to email me. My email is [email protected].

Rick Bangs:

Excellent. Thank you. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Please like, comment or subscribe so that we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Dr. Zheng.

Dr. Brian Zheng:

Thank you.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit BCAN.org.