When Urgency Becomes Your Reality: One Many’s Journey To Acceptance And Advocacy

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately. 

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us today is Sarah Jenkins, the Executive Director for the National Association for Continence. Welcome, Sarah. 

Sarah Jenkins: Thanks, Bruce. 

Bruce Kassover: Yeah. Today our guest is a patient named Brad, who’s going to be sharing with us the story of his journey through his incontinence, how he discovered he had a problem and what he did about it. Brad, welcome. Thank you for joining us today.

Brad: Thanks for having me. Been a long time listener of the podcast it’s just quite the treat to, to be on it and share my journey with people as well. 

Bruce Kassover: Trust me, it’s more of a treat for them because hearing from patients about their own stories is always something that’s particularly motivating and really makes a difference for those people who are just starting out and who are uncomfortable, talking with others about it. So we appreciate it. And maybe you want to start by just telling us a little bit about who you are outside of this podcast. 

Brad: Sure. So I am a otherwise healthy 44-year-old man. I grew up in, in Colorado and I’ve been pretty active in the outdoor scene as far as like rock climbing, mountain biking, and doing all the outdoor activities.

And yeah, I would say throughout, my journey with all this it’s been difficult for me just because I’ve been healthy, I would feel like most of my life. So then encountering something like this I would say like midlife has just been really life altering.

Bruce Kassover: Maybe you can tell us a little bit about that encounter. What happened that made you start to realize that there was a problem? 

Brad: Oh, that, that’s been quite a long journey in itself. I would say the first time I had an episode would’ve been 22 years ago, I think. Yeah, it was about 22 years ago, I was in the Marine Corps and that was the first time that I experienced like urgency with not being able to make it to a bathroom on time. And that was perplexing to me, but I had chalked that incident up as just being a a fluke, oh, I ate something that disagreed with me or I wasn’t I was just in like, in a bad situation where there wasn’t a bathroom available. So I completely wrote that off. And then over the next probably 18 years I had several bouts with with that as well.

So these are like similar situations where you’re just, you can’t get to a bathroom in time and you mess yourself. And but I’d always, they were so infrequent that I would just, chalk that up, is. Is just a fluke. You’re like, oh, this is just a product of the situation. And then over the next 18 years, those became more frequent and more happening more often.

So that was what led me to speaking to a doctor about that. 

Bruce Kassover: Are we talking about bowel incontinence or bladder incontinence or both? 

Brad: It started with just bowel incontinence and like I said, it was infrequent. So that was I think the hardest part about it. ’cause it was almost like having a trick knee or something like that.

You’d be out and about and maybe you’ve been fined for months and you haven’t had any problems. And then one of these issues would hit and, you’d have an accident and you’d just be left, scratching your head wondering why that happened. And so over that 18 years, I would say, that would happen maybe once or twice a year.

And then became more and more frequent as time went on to the point now where it’s both urgency, fecal and urinary incontinence. 

Bruce Kassover: Really now, were you able to identify any things that might be triggering it, or did it seem to be totally random? 

Brad: It seemed to be completely random, and I think that was the real problem, because there wasn’t a specific triggering event like a car accident or something like that. As I’ve talked with other people are like, oh, this was specifically from an injury. So I’d had like several skiing injuries and mountain bike crashes and stuff like that were maybe pretty hard on the body, but there was no like one particular incident where I was like, “Oh, that changed my life. Things have not been the same. I haven’t had a full recovery from that.” And I think that’s what really made it challenging not only for myself but to describe this to healthcare professionals. So really at that point like I said, I’d just been writing these office flukes it was about six years ago. I was on my way to work one day and was stuck in traffic and just completely messed myself. Like I could not get out of the car because I was at a stoplight, a busy intersection, and work was still minutes away. So there was just, there was nowhere to go. And anytime I’ve been like in these situations in the past, I’ve at least been able to pull over, like on the side of the freeway and run into the woods or something like that, or, there’s always been like a place to tuck off, even if it wasn’t, PC, you could probably get away with it. But this time in particular, there was just, there was nowhere to go. That was the thing that really brought light to this because I was like, maybe I do have a problem because I was like, I literally had no, no way of stopping this. I don’t care how strong you think you are, there was just, this is like an unstoppable enemy, rebel force. At that point I was like, all right, I’m going to make a doctor’s appointment to to talk about this. Finally got into the doctor and I think that might have even matched up with an annual checkup.

And at that point we went through the entire physical and whatnot, and I just felt like I, I couldn’t even talk to the doctor about that. It did take me all these years to even raise my hand to go to a doctor about it. And then at that point, I’m sitting in there, only one thing on my mind because I wanted to mention I was having some incontinence issues, but I just felt completely crippled to even talk to my primary care physician… we had a doctor I’ve been seeing for years at this point.

It still was so embarrassing and so overwhelming to me that I could not even talk to him about it. So we go through the entire appointment, I’m in there for probably, 30 minutes or something like that, and he’s getting ready to wrap up. He puts his notes in and he says, “Is there anything else?”

And if he didn’t ask that one question, I think I would’ve just glazed over and been like, “Okay, thanks, Doc.” And he would’ve walked out. But he was like, is there anything else? And then paused. And I was like and at that point. He leaned in just complete silence and that gave me the opportunity to speak because otherwise I don’t think I would’ve said anything that was like literally one of the hardest conversations I ever had to have in my life at that point.

And at that time I was, I think 39 years old. That was what led, to my treatment and, really just becoming like a student of this stuff because I feel like I’ve been a research grad student or something like that with all the research that I’ve done, over the last six years since my diagnosis.

Bruce Kassover: What you’re describing is something that we hear a lot, and it’s one of the reasons why a lot of people take so long to get treatment is that it is absolutely mortifying to discuss with other people for so many patients.

Bladder incontinence is something that, that many people find difficult to discuss, and, bowel incontinence is even, is that much more challenging. So I’m wondering, and this may not even be something that, that you could remember because it was a while ago, but when the doctor said that, is there anything else, do you remember what you said to start that conversation, how you were able to break the ice from your end?

Brad: I don’t remember exactly, But just having him pause for a second to say, is there anything else? And then silence gave me, what felt like, a long time to say I’ve been experiencing, some bouts with the incontinence. And he was like, “Say more about that.” And he was like, “How often does this happen?”

And I just remember telling him like “How often do you sneeze?” That was my, reaction to that because it’s, there was just no rhyme or reason behind it. You might be good for a long time. And when I thought about that, like, how often do you sneeze? I don’t know, maybe you don’t sneeze for two weeks or something like that, but then you might have a day where that’s all that’s happening, that opened a door for that. And then he is think about how often this has happened. So when I went home that night, he gave me a referral to a GI doctor, and then I went home that night and just kinda opened a notepad up and I started thinking with the first episode that I had ever had, and to date, like how many times had it happened? I filled the whole page up. And so once I saw that, I was like, “Oh wow!” And those were just the memorable ones, things that stuck out, in my mind over the last 18 years. And when I did that, I’m like, this is a problem. But it wasn’t until I put the pen to paper and filled that whole page up with all the memories of that, that I was like this is a problem. So that’s when I realized, okay this is something that needs to be addressed. And then went through a full workup with a GI doctor.

And I think the really frustrating part, even today with my treatment and, going through all the tests and things of that nature is just that, when I got done, she finished her colonoscopy and she was like the good news is we didn’t find anything, but the bad news is we didn’t find anything. So I’m just going to chalk this up as being irritable bowel syndrome. And if you’ve done any real research on irritable bowel syndrome, that could just be anything under the sun. But it essentially is a diagnosis of we don’t know, what’s wrong with you. And so that was, really frustrating in a lot of ways because the more research I did there, I’m like, oh, so we don’t know how to treat it. We don’t know how to fix it. We don’t know what it is. And that’s what just made it, so frustrating and then, overwhelming from there. 

Bruce Kassover: There’s something that you said just a moment ago before we talk about the diagnostic process a little bit more that I just really wanted to reiterate because you talked about how seeing it when you put it down on paper, it made it seem real in a way that you hadn’t realized before and one of the things that we often stress at the National Association for Continence is just how important it is to do some sort of tracking or use a diary to help your physician really figure out what’s going on and to help you really understand what’s going on. Because sometimes you don’t realize just how significant the problem is.

We have free trackers and diaries available online, but even if you don’t have those, even if you don’t download them, just keeping some sort of a record can really make a real difference. So I’m glad to hear you say that was something that was meaningful for your own treatment. Now before I go on, Sarah, it looks like Sarah has a question she wants to mention also .

Sarah Jenkins: Yeah. I was just wondering, you had all of these different episodes that clearly stood out to you in your mind that you know so much that you were able to write them all down. How much had your life been affected before you talked to your doctor? What kinds of adjustments were you making? How were you managing on your own? 

Brad: There… up to that point, I was still in complete denial, so I just was, it wasn’t affecting me that much. I just felt like I was playing Russian roulette every day that I left the house because I wasn’t paying attention to, if I had an episode, what maybe triggered that through food diaries or anything.

Now I can tell you, oh, dairy is a problem for me. Alcohol is a problem for me. And there’s a host of other things, but I was just going about my life as if, there really wasn’t any problems. And, these are just one off episodes, but there were times, like when these things would happen where you would just want to say, “Oh, okay, where’s the nearest bathroom going to be at?” Or if somebody wanted to invite you to something that there might not be a bathroom or something. That was always in the back of my mind, but I still hadn’t accepted any of this as being a problem. It really wasn’t stopping like my behavior or changing my behavior at at that point.

It wasn’t until that last episode six years ago on my way to work… that was like the last straw where I was like, “Oh God, this is a problem. There’s something wrong.” And so once that had happened, that’s when, when everything changed for me. And then when I did the journaling and then realized there was a problem that was reinforced by a doctor, yeah, this is, that’s not normal. It’s common, but it’s not normal. And that’s where everything changed for me. 

Sarah Jenkins: It sounded like it took a while for them to really pinpoint your triggers and things that were causing this. After you talked to your doctor and before you found out what it was, how did you manage? Did you bring up a, just in case bag, places, or limit what you did? How much did this affect you then? 

Brad: This all kind of came to light at the same time, you know that the doctor conversation happened. So after that I was like, wow, this is a real problem because I was at work and I was unprepared.

It’s happened on my way into work, and I was like if this ever happens again this could be, I happened to have a change in the car, like in my gym bag or something like that day, but I wasn’t prepared at all. So then that led me to, okay, what can I do to to mitigate this in the future?

And that’s led to always having a a bag in the car like what I would call a kit. And change of clothes, things to get cleaned up with wipes. And, since my diagnosis, or even really a little bit before that, I’ve if I’m leaving the house now or going to be in a situation where there’s not going to be like, a bathroom around I that I just, I wear diapers now.

Bruce Kassover: You talk about that sort of urgency that you were experiencing, and I’m wondering, a lot of people who’ve experienced bowel issues, they have a sense like, okay, I got to get I got to find somewhere fast. When you experienced it, was it just really all of a sudden I don’t even have time? Was it like, okay, I have a few minutes? Or was it something like, wow, what just happened? 

Brad: I would say they would vary a little bit, but as time has gone on, the urgency has become more often and the timeframe to make it to a bathroom has shrunk as well. So I would say, years ago when these things first started happening, that might have been as much as five minutes to make it to a bathroom, where that timeframe has just shrunk down to now you might only have seconds, like less than a minute to get into a bathroom. And if you’re not in a bathroom, like that’s, this is happening, and so that’s been really frustrating. But before, like I wouldn’t wear protection or anything like that. And then I started to wear only if I was going to be in a situation, like in a long car ride on a flight or out in town where there might not be a bathroom available. But that timeframe has shrank so much now that I don’t feel comfortable leaving my home without wearing protection. 

Bruce Kassover: Wow, that’s really got to be very difficult to mean, talk about limiting your life. That, that you can’t even, leave your home without feeling safe is really challenging.

I’m wondering, as you started to see these symptoms get worse, you were talking earlier about how you’ve done a lot of research. Was it even before you went to the physician that you started doing your own research and trying to figure things out on your own? Or was it really only after you started to get that diagnosis that you really began to dig deeper into what might have been going on?

Brad: I think I was lurking around, with sites like yours just to see what was out there, or if you could just Web MD this yourself to see, what was there. But knowing now that like the doctors still really haven’t figured out completely why this is happening, I was I wasn’t able to figure that out, but I definitely did some research on my own, loosely, but it wasn’t until after having these doctor visits and whatnot that I was like, they confirmed that I really do have a problem. So now what can we do about it? Where do we go from here? That’s what’s, led the charge for all the research that I’ve done over the last six years.

Bruce Kassover: Sure. Now, there are a lot of people listening to this who may find themselves in the same situation that you were before you had made that first mention to your doctor. And, they’re concerned, of course, about saying something in the first place because it’s very embarrassing, but they may also be concerned about the actual diagnostic process itself.

So maybe you can give them a little bit of an idea of when you went to that gastroenterologist, what did she actually do to help you come to that diagnosis? What was what sort of testing or questioning was involved? 

Brad: It’s been a lot over the years, but from my memory, we did a full, lab workup. There were stool samples, there was checking for parasites and things like that. And, during my time in the Marine Corps, I was pretty traveled all over the world and in different jungles and things like that. I was always worried that maybe I drank some contaminated water or something like that.

But when all that came back negative, that really left me scratching my head even more. So they weren’t able to find anything there. And then a colonoscopy after that. And that’s where she didn’t find anything. She said that everything had looked good. Start the food diary and just really paying attention to what you ate yesterday or last when one of these episodes happens.

And then, I can’t remember if I had brought it up or if she did, but she gave me a referral to pelvic floor physical therapy. And I would say that is a, probably one of the most overlooked providers for incontinence that is out there, but they’re also one of the most helpful and I found more insights and help from pelvic floor physical therapy than I have from any other doctor or physician that I’ve been to.

I’ve been doing that off and on for a couple of years now. And one thing I’ll say about that as well is, especially for the male patients out there, once I got the referral, I’d seen one and we’d done some work and then took some time off and I was trying to find another one years later and not everybody will take male clients.

And that blew my mind because I was like, I don’t even know how you can legally say that to me. But some of these offices, they. They only see female patients. Don’t be caught off guard by that. That was mostly a surprise to me. That was definitely a surprise to me. But they were able just to make some connections that nobody else was. Even the GI doctor did not explain to me that I had a tight pelvic floor, and that was also causing a loss of control. So that’s a whole ‘nother, with some of these things, 

Bruce Kassover: I can’t tell you how much we love hearing that you had a good experience with pelvic floor physical therapy because it’s something that we stress time and again, and a lot of people, they don’t give it the sort of attention that they do to their regular, doctor’s appointments, and like you’re saying, it could have a remarkable effect. And a lot of people like you, you’re also talking about the difference between men and women. A lot of people think that, they think about things like Kegel exercises and imagine that they’re only for women and don’t realize that men can benefit from that as well. So I’m really glad to hear that worked out for you. 

Brad: Bruce, I’ll be honest with you, I didn’t even know that men had a pelvic floor and I always thought a pelvic floor physical therapist was just for women postpartum, that it had a hard pregnancy. And they fix women’s problems . Like I didn’t even understand the full scope of what they do and they’re coming at medicine from a different angle because. The GI doctor didn’t diagnose that I had a tight pelvic floor. So I thought that was very interesting. And to this day I’m still working with a pelvic floor physical therapist, but that was another one.

That’s just been a long journey over time because I was getting dry needling done on my elbows for tendonitis that was causing me problems and that physical therapist recommended a another pelvic floor physical therapist that said they could do. Dry needling to your pelvic floor. And I was like, “Yeah, I don’t think so. I’m not ready for that at all.”

So that took me two years to work up enough courage to call that clinic and get in there and actually do dry needling on my pelvic floor.

Sarah Jenkins: That’s pretty incredible, Brad. I’d love to hear a little bit more from your perspective what you experience at pelvic floor physical therapy? A lot of women even don’t know what to expect when they go to an appointment, and like you said, many men don’t even know that it’s an option for them. And even that it’s an option for bowel incontinence. A lot of people think of it as something you do for urinary incontinence. So I’d love to just check what could someone expect? When they see a PT? What kinds of things do you do during your appointments and what’s the timeframe for how that has helped you? 

Brad: I would say, going in there I watched a couple of videos and read a little bit about what to expect, and then you could even get on, whatever PT’s website that they have, and they’ll have some direction on like how that goes. The first, appointment is usually just a consultation. These are the types of things that we do here. What are your symptoms? This is how we might be able to help you. And so I’ve been to three different public floor physical therapists over the last six years now, and I would say that they’re all a little bit different and everybody is pretty cautious because it’s such like a, I don’t know, like a taboo treatment almost, because a lot of people are not comfortable with what goes on in there. But you can definitely expect to have an internal exam. And so I think that’s overwhelming to a lot of people. Male or female. Poking and prodding around inside your body is usually not comfortable for folks, but that’s really the only way that they’re going to be able to diagnose your pelvic floor, see if there’s a problem there or an injury.

That is for me, I guess that was the, in the initial consultation, ’cause I came in there prepared with yeah, I just assumed that was going to be a part of the exam. So they move forward with that. And then it was like a once a week visit, just like you would go to any other physical therapist and they’ll give you some exercises.

This may or may not include Kegels. It just depends on what if you have a weak pelvic floor that might include Kegels and different exercises, but a tight pelvic floor as people can imagine, it’s harder to relax a muscle than it is to strengthen one. There’s a lot of different stretches and things of that nature that they do, and then a bunch of different exercises that they’ll do as well as internal work to try and relax those muscles.

Sarah Jenkins: Yeah. That’s great to hear. I’m glad that you experienced so much success with that. I know it, it’s not any easy thing to always stick with because it does take a while to see the results, but it’s such a great way to improve your symptoms in a more natural way. 

Brad: And I’m adverse to taking medications, so that’s why I’ve leaned into this. But the reason why I was seeing three different ones over the last six years is because it takes a long time for this kind of therapy to work. So the first time I went, I don’t know, I maybe did six visits or eight visits or something like that, and they were kinda like, so what do you think?

I’m like “I’m good. I’m not seeing any benefits from this. I don’t enjoy these visits. I’m all set there.” So then maybe took a year off or something like that. You do some more research and be on forums and things of that nature. And some other people have given some testimony that this really helped them out.

And I’m like maybe I should go again. But I wanted to go to a different one and I wanted to see if they had the same conclusions. And sure enough that’s exactly what they said. “Oh, you have a tight pelvic floor.” And I didn’t tell them that I’d even been to another pelvic floor physical therapies ’cause I wanted to see what they were going to say.

And so that was conclusive. I was like, oh, all right. At least two people are saying the same thing. And we again would do all the treatments and exercises and things of that nature, but I live a pretty busy lifestyle, and then we moved into the summer season. I was like I’m not coming in here anymore.

So I just kinda let that lie where it was and then took another year, two years off. And that was the only reason I started going to the PT again was because dry needling helped my tendonitis and my elbows so much that I was like maybe this would help out in the pelvic floor arena, and from the research that I had seen, most people had said that would get you the quickest results of any other treatment out there.

Sarah Jenkins: Yeah. Yeah. That’s great. 

Bruce Kassover: There’s something you said that’s really an important lesson for a lot of people out there which is persistence and perseverance, because many people, if they try something or they, they go to, say a physical therapist or a physician that really isn’t effective for them, they give up. And the fact that you didn’t give up really shows that, you know what, there are treatments out there, but you have to continue to go for them. And you can’t, just, if you forget about them and you don’t do them, they’re never going to be able to help you.

And you can’t abandon things that have been shown so many times to be effective for people. So that’s really encouraging to hear. Especially because with physical therapy, it’s not something that happens instantly either. It takes time for , to see results, so that’s really encouraging.

Now, you did mention that you’re somebody who tends to not want to take medicine when you don’t need to. I’m wondering though, did your doctor prescribe any other, any medications or any other sorts of therapies, treatments in addition to the physical therapy and the behavioral things like watching your diet?

Brad: So there were several prescriptions that, they had recommended. And when I had done some of the research on that and talked to other people who have taken ’em, I just didn’t really feel comfortable with that. I think I did try a medication for a short period of time and just was not a fan. So I did, I really wanted to refrain from taking something like on a daily basis that may or may not help you.

So that was, that was where that was left. And I’m sure there’s other things that I’ve been forgetting about over the last six years. But those are the major touch points, like in, in my journey there. And the other thing that I’ll share with people is, just because you start this journey, I think a lot of people think, then I have to do this.

The one thing I’ll say is, it’s been more of a collaboration with doctors like, “We could do this.” I’m like, “Yeah, I don’t want to do that.” “All right, then these are the only two options.” So, I would say these treatments go at your pace and your comfort level. Nobody’s going to make you do them. And I think that’s one of the most overwhelming things that I’ve talked to other people. They think once I get in there and say, they’ve been having these problems, they’re going to make me do some treatments that I don’t want to. At the end of the day, this is your treatment plan and your body.

You can do as much of these things or as little of them as you want. But I think really the the real ace is just education and knowing what’s out there. And then it might take some time, like the pelvic floor physical therapy, this last time took me a couple of years to go in there before I even started that treatment.

Bruce Kassover: It’s such a good point that the fact that it’s a collaboration… that your doctors cannot force you to do anything you don’t want to do. And a lot of patients they sit there and think, it’s the doctor that’s saying this. I need to do this. And you have to have a comfort level and you have to be confident enough to say, “Yeah, I want to do this, or I don’t want to do that.”

So that’s something that, that we really should make sure to stress. I really think that’s an absolutely fantastic point for people to take away. 

Brad: The other thing that I’ll add too, Bruce, is I think oftentimes, especially with incontinence the thing that’s overlooked is the mental health perspective of all of this.

And from going six years ago to not being able to talk to a doctor about it, to being able to share some of the story with you on a podcast has been so transformative for me. But I attribute a big part of that to counseling because I’ve never been to counseling as an adult before. I’ve never even thought that if there was a need for me to go, but once I started experiencing these things, I have a good network of friends that I’m very close with, that we share things and I, I’ve always just been like if there’s something I need to talk to, I’ll just call my buddy. And once it was something that I did not really feel comfortable sharing, barely with a doctor, let alone friends, close friends and family, I didn’t want to like, have this be a part of the pity party or, it just, I’d shared that with a couple of friends and there were so many questions about it that it just became like overwhelming. ” Do you, have you tried this? Have you done that?” Oh. And then everybody’s trying to help. But, in the end that it was pretty overwhelming, and I didn’t even want to have the conversation.

So when I shifted all these conversations and sharing, what had transpired throughout the last week with a counselor, that was extremely helpful. Just to have somebody to talk to about it where, you’re not going to get any judgment or it was just a place to, to park some of these, like, traumatic things that I was experiencing.

So I would say that is definitely something, maybe that’s where your treatment starts, just talking about it with somebody and maybe they can, help you work up enough courage to start the treatments or to see a doctor. And I feel like that’s one of the most overlooked things out there.

Bruce Kassover: That’s a really interesting point, especially because a lot of people like you, you mentioned yourself, are uncomfortable talking about the physical symptoms that they’re experiencing, but talking about mental health issues, talking about emotions and stress and anxiety and all those things is also very difficult for a lot of people.

A lot of people think that it’s like a it’s like a weakness to open up to somebody, a counselor about that and are re reluctant to go, I think especially, particularly among men, that’s something that you see a lot. You’re somebody you’re of a Marine, somebody who said, you were saying you, you love doing outdoor active things, very like manly types of things. And the idea of going and talking to somebody about your emotional health can really be something a lot of people are afraid of doing or uncomfortable with doing. Was that sort of, did it take some sort of over, did you have to overcome some of those feelings yourself before you sought out counseling, or was it just you know what, I know what I need to do, and you did it? 

Brad: That was definitely a part of it, and knowing that, I feel like I’ve always been in good mental health, but this was just like one of those things that like I felt out of control. There was nobody to talk to about it.

And the people that I knew, I’m sure they would talk to me about it, but I didn’t want that to even affect my relationship. So I was like where do we go from here? And one of like the health insurance that I had at the time, they introduced her like, oh, see a mental health professional, and it’s only a $20 copay.

And I was like, oh… maybe I should utilize that benefit, which is something I’d never even considered before. So that timing of them adding that to the plan was impeccable for me to get in there. 

Bruce Kassover: I’m glad that worked out. That makes a real difference, doesn’t it? 

Brad: It definitely did. And just like I said, knowing that you’re not projecting that onto your spouse or best friend or other family members was, it was huge just to be able to go in there and get, like, a weight lifted off your shoulders to, because if you’ve had an otherwise normal week, on Wednesday you had an accident when you were out and about, who do you tell that story to? If you, unless you are comfortable sharing it. And I certainly wasn’t. I’m still not. So it’s that, that’s been very helpful.

Sarah Jenkins: Brad, dealing with these issues, how has it affected your relationship and your work life?

Brad: Yeah, that’s a great question. I would say… I’m single and still in the dating scene, and so that really has been one of the most overwhelming things that I’ve had to deal with, with dealing with incontinence.

I’ve… just go about my life as if nothing is any different, and then going on dates or starting relationships, I would say the first three relationships that I’ve been in since I’ve been dealing with incontinence were the most overwhelming, not knowing how a partner is going to react to you having these issues. But then as as I’ve shared these things with people that I have gotten into relationships with, it hasn’t been an issue.

And so maybe I’m lucky in that aspect. But I’ve also just been thankful that this didn’t happen to me earlier in life. If I was in middle school or high school dealing with these issues and anybody that is, my heart goes out to you. But it’s definitely been easier to deal with other adults when talking about these situations, and I think people my age, getting into your forties, just understand that some people have issues and that doesn’t define you. In that aspect, I I’m just a little bit, I don’t share with people until I’m sure that we are moving forward in a in a meaningful way. And so that’s been how I’ve, dealt with with relationships and dating around incontinence. 

Sarah Jenkins: Yeah, that makes sense. 

Bruce Kassover: What about your work life? 

Brad: So work has been interesting and that’s been another overwhelming thing that was talked about greatly in counseling, but i’m in finance, so I now have an office job, but it wasn’t always like that.

I used to be a contractor and being on job sites without bathrooms and stuff like that were definitely a problem for me, but I was happy to be inside and have an inside job as all of these things have evolved. But I just feel like you’re always sneaking around and doing things or maybe carrying bags that might raise an eyebrow to somebody who doesn’t understand your situation.

And if you’re not ready to open up to your work colleagues about. These things, it is very difficult to deal with. All of these things were unfolding right around COVID for me. When they sent everybody home that was, honestly, a huge relief to me because then I was able to deal with the, my symptoms in my own home and I ended up working from home from years and then when they called people back to the office.

I was like, “Oh geez.” Like things have gotten bad enough now that like I can’t even go back to the normal work life that I had before. And so I had talked to my manager about that. I’m like, just hiding behind my IBS diagnosis and he’s, “Y ou’re going to have to get a doctor’s note or something like that because I can’t just say, okay, Brad doesn’t come in anymore because he’s got IBS.”

So then had to work with HR on that and then was still not comfortable really sharing the full scope of my incontinence with, with the HR department, and I worked for a large company, so I wasn’t really worried about that, like translating into the, my direct office. But with that, I finally just had to tell them, listen, I, I’m dealing with incontinence on a daily basis over here, and because of that I have to wear diapers and I’m not coming in anymore because I can’t manage this from the office.

And one, I became that bluntly honest with the HR person I was dealing with. She’s, “Okay. Now I understand what we’re dealing with,” but I think sometimes, we’re so reluctant to share with people what you’re actually going through, that they can’t relate or provide the accommodations that you need because you’re not telling the full story.

So that’s what it took for me to be able to work remotely and get the blessing from HR and management all the way down that that I could work from home. And then the other part of that too is, when I do have to go into the office or have meetings, I had to have all of my suits and things of that nature tailored to accommodate the protection and things of that nature.

So the work aspect of this is certainly was overwhelming at the time. It’s it’s gotten a lot better now, but, that was, that, and dating has certainly been two of the hardest things to overcome with all of this. 

Bruce Kassover: So many things that people don’t even realize are affected by a condition like this. Talk about having to get your suits tailored. That’s really interesting. I’m glad to hear though, that you were working at a company that was able to make an accommodation for you, that’s something that a lot of people unfortunately don’t have the benefit of. So I’m glad to hear that that at least that worked out for you.

Brad: Absolutely. I think one of the hardest things about the whole situation with incontinence is that you can’t see all handicaps. And this is a handicap that is definitely there and it definitely is a handicap, but you’re not sharing it with people and people can’t see it. So if you can’t see it, people are wondering why are you getting special accommodations? Or why are you working from home? It just spawns so many questions that you don’t want to the answer. 

Bruce Kassover: Yeah that’s an important perspective to have. I’m glad you mentioned that. 

Sarah Jenkins: Yeah, and kudos to you for speaking up. I know that’s really hard to do and there’s a lot that companies really could do to make it easier, I think. I think a lot of companies just aren’t aware that this can be such a hard thing for employees.

Brad: Absolutely.

Sarah Jenkins: It’s great that you were able to advocate for yourself. 

Brad: Certainly not easy.

Bruce Kassover: So now you have counseling support. You have, you’re watching your diet and you have a sense of what some of your triggers are. You are under the care of pelvic floor physical therapist. How are you today? What are your symptoms like in your management like? 

Brad: I would say things are as bad as they’ve ever been today. Although I’ve been doing all of the things, educating myself and pelvic floor physical therapy has certainly helped. I also feel like I’ve been deteriorating a little bit too, because all of this started out with fecal urgency and now you add urinary incontinence to that as well, which is also a product of the tight pelvic floor. So all of these things together sometimes feels pretty overwhelming because it’s the, I guess the other thing I’ll share with people is like, it doesn’t matter what kind of treatments you do, how much money you spend, how many tests you do there might not be a fix for this. You might just be in it.

And so that’s where I’ve arrived at this point in my life is how much do you want to chase it? The last six years I’ve chased this thing pretty hard and there’s little things like, the PT working with them that, that, but that might only be a five to 10% improvement.

Might be a hundred percent for some people, but in my experience, it just, it hasn’t been that much. But I keep going because it is helping, but maybe not at the level that that you want it. To answer your question, I would say it’s more now than it’s ever been in the past.

And that’s where yeah, I’ve just been seeking all these things and, but I think the ultimate thing that has helped me more than anything has just been acceptance, Bruce. I’ve accepted that I have a problem. And then it just becomes management. And I’ve just been very thankful that it’s not a life threatening, diagnosis; this could, I, cancer runs in my family and I’ve just been like very thankful that it’s not a terminal cancer treatment. These are things that are, can just be managed. And that’s acceptance has been the… and I think that all, came out of therapy really. But acceptance has been the biggest win for me. Okay, it’s a problem. How do I deal with it? The, these are the steps that I’m taking to deal with this and manage it on a, on a daily basis. 

Bruce Kassover: It sounds like that perspective is a really healthy one, even if you’re not out of the woods when it comes to your symptoms. And I suppose that, you know what, that’s going to be encouraging to a lot of people who also find themselves dealing with a problem that feels like they can’t do anything about that. That sometimes you learn to live with things and if you change your outlook, it can make a real difference. Just in terms of how you feel about yourself, how do you feel about yourself nowadays? How is your self-esteem and your the way you visualize your yourself? 

Brad: I would say stronger than ever since the diagnosis and like the episode where I said that, that was the last straw because, it was. You become withdrawn at first. You don’t want to get on an airplane, you don’t want to be a part of like large social events. You’re always thinking about, how will I get out of this if I get into one of these situations there? But now that I’ve learned how to cope with these things and manage it on a daily basis that, that’s been probably the most empowering part because I know one of the questions you had asked earlier was like, is there something out there that was more empowering to you than anything else? And I think years after the diagnosis, wearing the protection, I had another episode on the way to work, but the difference was this time I wasn’t panicked and I was just completely prepared. So I was able to deal with that and still make it to work on time and nobody knew the better. So a lot of times I would say it’s just like a matter of better to have it and not need it, than need it and not have it. It’s kinda like wearing a seatbelt or something like that, so…

Bruce Kassover: Sure. 

Brad: … that’s been the biggest thing that is, improved my mental health, I think: acceptance and being prepared. 

Bruce Kassover: Well as somebody who listens regularly to Life Without Leaks, you know that one of the things we like to do before we leave is we ask our guests if they have one little bit of a hint, a tip, or a strategy for others to to live a life without leaks themselves, and hearing your story, I’m wondering if you might have a bit of encouragement that you could share with people who find themselves in a similar situation that might help them improve their attitudes, find the help that they need. Any, anything that, that you could share with them? 

Brad: Bruce, I don’t know how to live a life without leaks, but I definitely know how to deal with them. And so thinking about that question before we got on here, I would say the three bulleted points that I have are: one, be prepared with either a bag or a kit, so that’s step one. I carry a bag if I don’t have my vehicle with me, and that just has cleanup, supplies and a change and stuff like that. It’s just, a messenger bag that allows me to carry the things I need. It’s, it is a man bag or murse as some of your Sienfeld fans may remember, but, so that’s the first one.

And then the second one, I would say is no matter where I’m going, or at least in the past at this point, I maybe don’t do these things religiously anymore. But I always had a story or an alibi of why I might have to leave if I can’t deal with this, with one of these episodes when once it happens.

And then the last thing I’ll share with you is I always drive separate now. So that is my scapegoat. I might not be able to stay the whole time. Maybe you have an excuse of, you, you may have to pick up your kids or something like that. And at least that gives you the opportunity to leave a situation or to deal with it on your own terms if if you do get caught up in one of these situations. 

Bruce Kassover: It sounds like that sort of planning ahead and that strategizing really is directly related to that sort of good attitude that you have, that you know what, I’m going to be ready and I’m going to take care of it, and it’s just, just down to business and I’m not going to let it ruin my life.

Brad: Absolutely. 

Bruce Kassover: I love hearing that and I really do love hearing your great attitude about things and your continued efforts to find whatever sorts of approaches might help deliver you some additional relief. So thank you for sharing your story with us today. There are countless people out there who also thank you for sharing your story because it means a lot and hopefully it motivates people to take action and see what treatments are out there for them as well. So we really do appreciate it. Thank you for joining us today. 

Brad: Absolutely Bruce, Sarah, I just want to thank you guys so much for what you guys do ’cause there’s not enough people like yourselves or organizations out there like this. So thank you so much. 

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.