Latest / Numotion Ally Program Podcast / The CathCast With Leah: Bladder Management Beyond Mobility With Dr. Daniel Stein
Transcript
- Leah Holderbaum: Hey friends, it's Leah with the Cathcast, part of the Ally program. And today I am joined by the fantastic Dr. Daniel Stein. He leads the Department of Urology at George Washington University as the chair, and he specializes primarily in complex urological conditions. His specific expertise is in urethral stricture, bladder injuries, and neurogenic bladder, specifically for individuals that have spinal cord injury or multiple sclerosis. He has his Master of Health Science from Johns Hopkins, a medical degree with honors at UCLA David Geffen School of Medicine. He did his residency at Northwestern University and his fellowship at Detroit Medical Center. He has received awards for excellence in teaching as well as clinical innovation. And he is committed to global health and serving the community worldwide. Dr. Stein, thank you so much for being here with us today. We are very excited to have you. Thanks for having me. Absolutely. So my first question, you've built a career that surrounds urology, trauma, global health. What originally drew you to this very specialized field? clinically what drew me to it, you know, when I started off my career, I started off in as you had mentioned, at the School of Public Health and I did epidemiology, biostats, I did sort of vaccine development applications. So I've always had an interest in global health. As a clinician, that's a little bit hard. but I've tried where I can to sort of go out and do some global work. Mostly it has to do with surgical teaching globally, trying to empower other people. and then in terms of my clinical interests where I ended up getting involved with trauma and with neurogenic bladder, was the trauma was just sort of an interesting field where everything is unique and specialized. You know, everything we do is sort of a custom job each time, so that's just sort of interesting. And then neurogenic bladder was actually more out of a need. Originally I had no interest in doing it. And then when I got into practice, I realized there just weren't a lot of people doing it. And there was a big need for among patient care. So that's how I end up falling into that. I like it. What are some of the things that you feel like the public is not necessarily aware of or that they rarely see in regard to neurogenic bladder? the one of the main things what people think about, especially if we're talking about spinal cord injuries or sort of acute neurologic conditions. People often think about mobility. That's sort of the main thing that comes to mind for people, you know, walking, wheelchairs. but bowel and bladder disease or bowel and bladder continence or quality of life is really probably more important to patients down the road than even mobility might be. And and it just gets overlooked and isn't addressed very much. and also a lot of times patients won't bring that up because they're embarrassed by it or they just think that this is just the reality they have to live with. and so it's just important to. Bring that up with people and talk to it and you realize that there's actually a lot of work they could do. As an occupational therapist, with my background in in patient rehab, so many times I would have to ask a patient, you know, what is your goal for rehab? And in the beginning they would say, I want to be able to walk again or I want to get back to normal. But to your point, you know, six, nine months a year down the road, it changes. And they really do just want to have some normalcy in their, you know, bowel and bladder function. Absolutely. I mean, I think for some patients, it affects their ability to go out. Socialize, maintain relationships. And you know, at the end of the day, people get used to I'm not saying it's a good thing people get used to being in a wheelchair, get used to their mobility, they can find ways around it. They're living in a diaper or if they're needing someone to change them, that's gonna affect their lives. Absolutely tremendously. Everything for those individuals that aren't necessarily as well versed in neurogenic bladder, spinal cord injury, all of the mobility issues. How do you explain what you do on a daily basis for someone who may not necessarily be in the medical field with that clinical background? Well, mostly explain to people that, as we said, with any sort of neurologic condition, that the bat the bladder, I mean, I focus mostly on bladder health, obviously. the bladder is a muscle and it's a group just like anything else. And just like people need to learn how to manage their, you know, paralysis in their legs or anything like that, we need to figure out how to manage their bladder. And There's a lot of management approaches to it. There's a lot of testing that we can do, but we have to figure out what is going on in order to help people and then figure out how to live their lives. Right. And to that point, you help folks not just regain function of their bladder, but you're giving them a sense of dignity and independence and confidence. Can you speak a little bit more about how you help patients regain that very important facet of their life? sure. I mean, when I first see a patient and they come in to see me. First conversation I have with them is I set sort of the goals of what we are there to do. Right. And when we're dealing with neurogenic bladder, I I sort of put things in three big categories for patients. Right. Number one is well, number one and two are sort of on me to do, right? And I say that's really keeping their kidneys healthy, right? because that's one thing that people just don't think about, and that can be a long term problem. So it's on me to make sure that we're maintaining kidney health, keeping them away from severe infections, urinary tract infections, but Most importantly, and what I launch into probably most is quality of life for patients, right? That's a third big category that we work on. And I break that down to patients to say, look, for the most part, that is continence. So being dry. I mean, I've had patients who break down in tears if I tell them, Hey, I'm I could get you dry and you don't have to live in diapers. Right. I mean, that's huge for especially young patients. Absolutely. and then independence, right? Just like mobility, people don't want to be pushed around in a wheelchair. They want to be independent. Same thing with their bladder management. They want to be independent and We work with them on that. And then one of the things that's often overlooked from a quality of life perspective with patients is sexual health, which is something that is just generally under addressed. Which isn't exactly bladder health, but I'm a urologist, so it falls in my cap anyway. Yes. Yes. They are connected. They're absolutely intertwined. and everybody's embarrassed to talk about it and I'm not. So there you go. We need to normalize it more, you know. Absolutely. And that's one thing that I've learned as a clinician is the more comfortable and confident we are in delivering that message. Then that's going to be exuded, you know, to our patients. And so I think it's a crucial piece of the educational puzzle. Is there anything specific that you wish individuals would be aware of or anything that they should do before coming to see a urologist? Well, those are two questions, right? So what should they be aware of and what should they do before coming to see me? aware of is exactly what I said: is that there are probably other ways to manage the bladder than they have initially, right? The initial management after. someone gets diagnosed, probably whatever they had for the first six months, k he's probably not usually the only way out there. There's lots of options, there's lots of things we can do. so that I think is just first and foremost is that people don't have to get stuck in their status quo and just like, well, this is how I have to live and this is what it is. what should they do before they see me? Mostly just bring their records. Yeah. Trying to piece the information is a little bit hard. But getting in to see someone, I think, is the importance. And I think patients need to advocate for themselves on that. Unfortunately, is people need to say, look, you know, this is you know, if this isn't the way I want to live, sort of go out there and say, you know, what are to ask questions. Yeah. What can I do? is this the only way that I can manage this? And there's so many other solutions. Yeah. Normally there it's not one size fits all. There's not just one solution that's gonna work best. It's, you know, a variety. Absolutely. what about It's very important to have a multidisciplinary approach when it comes to treating bladder health. Whether it's infection management, we're looking at, you know, functionality, we need the urologist's place. In your own words, how would you explain the importance of that multidisciplinary approach in promoting quality of life? Well, true in a lot of fields of medicine. This among them. True. Anything we can do multidisciplinary tends to be better. Unfortunately, we're at is the realities of healthcare tend to preclude a lot of that. Right. What we can usually do is at least have clean lines of communication between providers. And that doesn't only mean healthcare providers, that also might be, you know, therapists, that might also be distributors of supplies, that might be home health, that might be any number of different factors. So if we can't get true multidisciplinary, which would be ideal, I agree. If someone could come in and we'd have a whole team of people, that'd be great. But I've tried to build that for years and it's financially awfully difficult. It is. but at least lines of communication could be good. And that's where I think I found, at least in my own network, you know, I'll find really good rehab docs who are willing to go the extra mile and give a call and discuss a patient. And that way everyone's on the same page. Or you know, patients come in with their caregivers or with their friends or with a family member. So at least there's a sort of internal multi-group effort to sort of get. But you're right. If we could get true multidisciplinary, that would be ideal. I know. It'd be so fantastic. Doesn't work in the system. It doesn't, unfortunately. We can hope though, maybe someday. Try to keep track. So we've spoken a little bit about infection prevention and keeping individuals healthy. And I think that is very important. And in much of the research that I've done, that is always a very top priority when it comes to bladder health. But when it comes to individuals with spinal cord injury, and you've touched a little bit on sexual intimacy as well as maintaining, you know, skin health. What are some of the other important facets of bladder health when it comes to individuals who have spinal cord injury? Well, one b thing that in specifically I talk to patients a lot about is that the bladder health and the bowel health are quite closely interrelated. And and oftentimes we're struggling on both. so that's just important for people to realize that those two go hand in hand. and obviously sexual health comes into play on both of those. so I mean. Part of it is also just to explain how things work to patients so that they understand identifying what an infection truly is. That's a struggle that we have. you know, especially our patients who catherize or things like that. Right. Not all bacteria are bad. Right. We're not trying to get everything sterile. We're not trying to scrub away all good bacteria from our skin. We're not so there's a lot of factors that's just educational as just explaining to patients, you know, antibiotics aren't always good. Usually not. Right. and there's a lot of work in other in other aspects to try to get, you know, reduction of sort of infection at least in that regard. Yeah, absolutely. We've discussed quality of life. You've mentioned it a few times as a note, it's something I'm incredibly passionate about. And you've been published regarding quality of life when it comes to urologic care. So, in your own words, can you elaborate a bit more on what quality of life means to you as well as for the patients that you have the opportunity to serve? So two questions. What it means to me, what it means to me is kind of irrelevant. And that's what I explained to patients. So it's like quality of life is individualized, right? There is no one size fits all. And that's when I explained to patients at the beginning, I look, quality of life is what you tell me. Right. My goal is to tell you what the options are, right? But it's what their goals are. So I mean, with regard at least to neurogenic patients, for the most part, it breaks down to a few like bigger categories. One is independence, right? and that's different for different people and different levels of spinal cord and different abilities. but it's what kind of independence are they looking for? What kind of independence can they have? but independence is very important. as I'm sure you're well aware with a lot of our neurogenic patients, there's a strong sense of needing to be independent. I understand that. And that's especially people who've lost mobility. Any kind of independence would be really important for them. Right. So I think independence is a big deal. continence is probably one of the biggest deals for quality of life. I mean, just being dry on its own is a huge thing for many of our patients. and so I do talk to them a little about that. there are other factors too that come into play as we talk about sexual health that kind of comes to play into quality of life, intimacy, socializing, being able to go out for dinner, being able to go out with friends, you know, being comfortable at work. I mean any number of different factors come up. Now but not that's not true for everyone. Right. some patients don't care. Mm-hmm. Some patients do care about this. so I think it's just a question of being open and and communicating with patients and getting them to start talking and then listening to what they have to say. I think once you open up the door, you can figure out for a patient what they need. But you just gotta open up the door for them to talk. I agree. And there's, you know, like you said before, it is a topic that not everyone is overly comfortable. talking about. And so, you know, in in your role, I think the more that you are addressing it and, you know, giving patients the opportunity to ask you questions is going to speak volumes and give them, you know, more of a quality of life in that instance. Another thing that I wanted to kind of bring up is, you know, again, we've talked about infection prevention and we've talked about, you know, being continent, staying dry. Ultimately, what does success look like? Well, it's those three categories that I started off saying before, right? So I see successes and those three categories are independent of each other. I can have patients who are perfectly happy with their quality of life, but their kidney function isn't doing too great. And so I got patients whose kidney function is okay and their quality of life is okay, but they keep having hospitalized urinary tract infections. So to me, success is those three categories, right? So you're not getting recurrent urinary tract infections that are however we define urinary tract infections. Okay, it's a whole nother conversation. Their kidneys are safe. And they're happy, whatever that means to them. Right. And there's no answer to that one. Quality of life is really individualized. Right. So it's them telling me, I'm good. I can, I can live like this and I'm happy. Okay. You know, or at least with regard to what I can do. Yeah. And when it comes to, you know, these long-term outcomes and how success must be completely individualized. What are some ways that you encourage folks to advocate for themselves and for their health when it comes to bladder management. Is talking to patients and getting in to see the right person. Right. I mean, a lot of my patients are coming to see me after they've gone to see multiple places. They haven't gotten care with a urologist. so I think part of it's advocating just to to talk to people and get referred to someone who can help them. and to advocate for themselves to at least to get in the door right for the right care. I mean that's the that's the start of it really. The other thing that I do try to remind patients and doctors in general is that it's a moving target a lot of the time. It is. So we might be fine for a few years with a patient, but then things change. Life changes, their bodies change, their disease might change. especially if we're talking about things like, you know, transverseulitis or MS or things that are sort of evolving disease states. and so it's important to sort of stay with them and maintain a relationship so that they feel comfortable speaking up if things have changed. Absolutely. If you had any words of wisdom or tips and tricks for any of our friends that are listening to this podcast right now, what would that be? Words of wisdom or tips and tricks. That's a harder one. I know. tips and tricks is really it depends on the on the patient, really. I mean that that's and that's usually technical stuff. Right. what I do tell people, especially when it comes to calfing themselves, is that There's a bazillion types of catheters out there. There's a bazillion options. There's lots of things we can do. So that if they can really work on identifying, if they're having a challenge of figuring out what it is that's challenging for them, there are things we can do about that. Absolutely. That might be physical position, that might be, you know, their hand mobility, their eyesight, their body shape, social stuff. Right. I've had patients who work in places where they can't get to a bathroom or exactly can't get out of their chair or Things of that sort. So there are solutions that we can come up with. but it really is individualized for patients in that. Words of wisdom. I don't know. I mean words of wisdom. I know. The world is the oyster, right? What about any adaptive equipment? Is there anything that you found to be successful for individuals, such as whether it's A pant holder or a positioning device or a catheter insert or anything that you found to be vulnerable. Patients come up with the most interesting adaptive behavior and things like that. That's what I find more interesting than anything else. I think some of the most interesting things I've seen are these contraptions that my patients have come up with. Yes. you know, if there's any doctors listening, it's more of a question of asking your patients what works for them and then sort of rolling with that. that to me is more interesting. I've had patients who come up with all sorts of interesting things. Haven't had seen too many off the market. There'd be some things that would be nice if people could create. mostly for patients who have hand mobility and their ability to cat themselves. Because I have some patients who are really motivated to cat themselves but just don't have, you know, high cervical injuries where they just don't have the hand mobility. And they're kind of stuck to some regards. And we find other solutions, but they're not always perfect. Right. But it's always trial and error. It's come, you know, it's gonna come down to The positioning, the equipment, the type of products that they're using, their goal. Exactly. Caregiver support, all of that. It's it's so dynamic. Yeah. and that's one thing that I've always said is, you know, bladder management is so dynamic. It's not one size fits all. There are so many different parts and pieces and steps and things that we can do to promote that independence. I also you asked me about w words of wisdom going back a second to patients. Yes. I also tell patients to be at patience. Yes. Right. And that's another thing. A lot of patients come to me frustrated. annoyed and tell them we can get you better. It might take a little time. Absolutely. Be stepwise. We might need do some t trial and error. We might need to do some testing, things like that. It can eventually get you there, but it might take a little time and sometimes just getting people understand that might take a little while. There's not a recipe book. Every person is so different. Trial and error, troubleshooting and problem solving. Yeah. So I know you've done a lot of research in this realm as well. Is there anything that you are currently working on that you would like to share with us? Not that I'm currently working on, although some of the interesting things I've seen is the use of probiotics and various, you know, bladder installations of that sort of sort. Those are the things I think are most interesting coming out, but TBD on what works and what doesn't. But there's some work on on the use of probiotics, avoidance of antibiotics. I think that's probably the biggest push right now on the research world. I think probably the things that's hurt my patients the most is just overuse of antibiotics. Yes. And I think if we can if we can curb that We'll do some we'll do some better work for patients. I think you're completely right. Normally we're just, you know, so quick to give someone an antibiotic and say, good luck, but I mean that's going to kill off a lot of good bacteria as well. It messes with the gut. There's just so many We see just a lot of trouble with overuse of antibiotics. And that I think now there's a lot of work. There's a lot of recognition of that and a lot of research trying to figure out how to avoid that. Well, as we are gearing up to wrap up this podcast, do you have any closing thoughts that you would like to share with our listeners? Well, I'll harp a little more on the the sexual function sex factor of that, because I think that's one of the things that I think people are most hesitant to talk about. Even patients are sort of hesitant to talk about it. And I think patients need to be open about it, doctors need to be open about it. especially on our young patients. I shouldn't say that. Older patients also need to talk about it. but a lot of people think, I've had this, I have this disease, I have this condition, that's it. I'm not gonna be able to be sexually intimate with anyone or be And and that's just not true. And there's a lot of solutions that we can come up with, and there's a lot of things that we can do for people to get them back to living their lives the way they want to live their lives. Are there any resources that you would recommend to folks? I always go towards the pleasure able guide. I'm not sure if you're familiar. It is great. It's called Pleasure Able. It's geared towards individuals that have disabilities and it is everything from positioning, equipment. It is fantastic. Yes. What about any resources that you I don't have any books or anything. I just ended up talking to patients about it. But now you've given me an idea. So now I still have to go look. I will give you some resources. Absolutely. It's something I'm very passionate about. Okay. So it's a project down the road for I find as soon as I open up the door and just start talking to patients about it. Yeah, they just they open up about things. Yeah. So it's just educational. Agreed. You know, little things like telling people to calf before they have sex. Yes. They don't leak. You know, or things of that sort, which is sort of simple, simple solutions, but But so many times they're just not aware of it. They don't even realize that it's an option. We'll just say where I just say that this is something that you can try. Mm-hmm. Sometimes it's important to have the partner there. It's a delicate balance because sometimes people don't want to open up when their partner's there. Sometimes they do. but sometimes it's nice for the partner to hear this too, which is another thing that's important. And that's key is they have to have that open communication and they have to be prepared for, you know, any potential barriers that might arise. And I think it's a crucial piece. Absolutely. Yeah. Well, I am So thrilled that you were able to chat with us today. I greatly appreciate your time. And it was so much fun to chat with you. And friends, I just want to encourage you, check out the Ally Program podcast wherever you listen. Like, follow, subscribe, and check us out on Instagram. And we look forward to having you all back in the future listening to more episodes. Have a great day.