From Zero Control to Total Control - How One Patient Overcame Bowel Incontinence

Imagine being a 35-year-old woman who suddenly develops bowel and bladder incontinence following childbirth - incontinence so difficult to treat that even a major surgery fails to deliver lasting, meaningful relief. That's the situation today's guest, Hope, found herself in - that is, until she discovered a simple procedure that changed her life completely, giving her back control after 17 years of struggling. Listen now to find out how she overcame her incontinence...

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Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
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Transcript

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. This podcast is supported by our sponsor partner, Medtronic, maker of InterStim systems for bladder and bowel control. To learn more about InterStim therapy, visit controlleaks.com. 

Welcome back to another episode of life without leaks. I'm your host, Bruce Kassover. And today we have a really fascinating story. It's a patient story. It's from a woman named Hope who's going to share with us her journey that she took as she sought treatment for her incontinence issues. So welcome, Hope; thank you for joining us. 

Hope: Thank you for having me. I'm so pleased to be here. 

Bruce Kassover: And we're pleased to have you. We really appreciate it because incontinence is a subject that a lot of people are reluctant to talk about and having somebody who can share her story firsthand and really give us the insights that patients go through is incredibly important, so I really do thank you, and I hope that our listeners are going to get an enormous amount out of this. So let's start by, tell us a little bit about yourself, your career and just who you are in general. 

Hope: So, I am 58 years old. As you said, I live in the suburbs of Philadelphia. I am a mother of three children, all adults, and I work as a senior caregiver in people's homes. Something I started doing about 18 years ago when my youngest went to first grade, and I absolutely love what I do. 

Bruce Kassover: Who are most of the people you deal with – older patients or are they all different ages or any particular type of person? 

Hope: Typically over 75 or so. A lot of, just, people that can't be in their homes alone and just need assistance and just somebody there to guide them, prompt them to do things, friendly reminders. And I just, I absolutely love what I do. 

Bruce Kassover: That's great. I would imagine that you're probably then no stranger to dealing with incontinence from the caregiver side. I'm sure you have some patients who deal with that as well. 

Hope: Absolutely. You know, they say things get worse as you get older and it’s true.

Bruce Kassover: But I guess that that also probably gives you a somewhat different perspective when you started to experience it yourself. 

Hope: Yes. So, I was very young, 35 years old when this started for me. So, it was a whole different perspective because you associate this more with an older person. People assume these are things that just happen as you get older, but it happens to young people as well. 

Bruce Kassover: It's true. I've heard that, you know, people talk about how sometime they hear – even from physicians – saying, “Oh, it's just normal as you get older.” But the best analogy I heard when we once had a guest on the podcast who says, yeah, well, you know, heart attacks are normal as you get older too, but that doesn't mean that, that, you know, it's something you should just accept. 

Hope: So, so true. It's not – even with age, like, these things can be helped and prevented. It's, it's really not acceptable at any age.

Bruce Kassover: Certainly, and especially though, at 35, I mean, you talk about, you know, one of the most vibrant periods of your life. So, so what happened that you started to experience incontinence then? 

Hope: So, in 2001, I gave birth to my third child, and during that delivery, there were things that happened that made it a very stressful birth and – my son was fine, thank goodness. It wasn't until I got home, maybe 2 days after I got home, that I realized I was having a problem, and that problem was not being able to hold anything, bowel or bladder. It was just happening. 

Bruce Kassover: That must have been very, very distressing. 

Hope: It was. You know, I think sometimes after you give birth, you kind of feel like, well, these things can happen. Never did with the other two births. You know, I think in the beginning, I was able to kind of laugh about it. But as it progressed, you know, as time went on and I went back and forth to see my doctor several times and, you know, there was really no explanation for it. So it wasn't so funny as time went on. I couldn't really laugh it off, although I feel like I do hide things pretty well. So, I don't think I was showing my family, my husband, how distressed I was. 

Bruce Kassover: We often hear that pregnancy is one of the primary causes of bladder incontinence in particular for many women. And I guess that you were even beyond that, though, because you said there was also experiencing bowel issues as well.

Hope: Yeah, I would say the bulk of my issue was bowel. There was bladder as well, but I think when you have a bowel incontinence problem, you're really not even focused on the bladder anymore. At that point, I just was not getting the signal that I had to go to the bathroom. It was just happening regardless of where I was.

Bruce Kassover: Really? So you really didn't have any real meaningful control then? 

Hope: Nothing at all. I had, you know, what they call ‘zero control’ and it just was very unpredictable. There was no sign, no warning. It was just happening. 

Bruce Kassover: So I can imagine that in addition to just dealing with your symptoms, that would have had to been incredibly difficult just for, you know, going out shopping, going to the movies, having any sort of outside-the-home life.

Hope: It was. You know, I had three young children and, you know, I was fortunate to be a stay-at-home mom at that time. And that, so that was very comforting to be able to, if I had to get up and get myself ready and go to work outside of the home at that time, I don't think I would have been able to do it. But you know, I limited my time going out.

Sometimes I waited till my husband got home or he would stop and pick things up on the way home. But there were certain situations I couldn't avoid with my kids that I had to, I had to go out. So, and things happened when I went out. 

Bruce Kassover: Wow. So what did you do to manage initially? 

Hope: So in the early on, in the beginning, I think I, in my mind, I was, I was very careful with what I was eating because I felt like, well, if I don't eat this, nothing's going to happen. Or I was very regimented with a lot of binding-type food products. I really thought everything out, like something so simple as to go to the grocery store, I knew when I got up that day to not eat before we went. So in the early days, that's how I tried to manage everything, mostly with food. 

Bruce Kassover: So I guess it was like an all cheese diet all the time.

Hope: Thank God I love cheese. So I love cheese. White rice was my very good friend, white potatoes, lots of bread, all just binding things. You know, when you're put in that situation, I think you'll do just about anything to feel better and feel secure that you can go from point A to point B.

Bruce Kassover: Yeah, but that doesn't really sound like a way to live. Yeah. So what did you do that when you realized that, you know, just adjusting your diet is not really doing the trick. 

Hope: So at that point, after, you know, having some issues the first couple months that my doctor felt might subside after I was healed, I finally, I just, took it upon myself and I called a specialist, local and, you know, went to see him for an appointment and he sent me to one of the city hospitals for a special testing.

And it was an, it was an ultrasound that they didn't do at this local hospital and they determined that my sphincter muscle was not a circle anymore. That explained why I wasn't able to hold anything because typically the sphincter muscle is a circle and it's working 24/7 to not let anything escape, where mine was not functioning at all. 

Bruce Kassover: Well, I want to get to that in a second, but first I want to go back just a little bit to where you first were talking with your physicians, because you mentioned that you spoke with your doctor. Now, was that first doctor your OBGYN shortly after pregnancy, or was that your general practitioner?

Hope: So I, pretty much everything was with my OBGYN in the beginning, and at my six week checkup postpartum, he couldn't physically see or feel anything that was wrong and just said, you know, “It's up to you, but you know, if things don't get better in the next couple of months, you should probably see a specialist.” So I didn't wait the couple of months because it was really getting to me. 

Bruce Kassover: That sounds like a good decision. 

Hope: Yeah. Yeah. I wasn't, I just, I tend to be pretty proactive and I need to know why this is happening. So went to, as I said, a local doctor, and he was very horrified as to what the results of the test was.

Bruce Kassover: I suppose at that point you've been experiencing these symptoms enough that it didn't take an enormous amount of courage to reach out to the specials either. You were, you were probably ready to talk to anybody who's going to be able to help. Or is that a bad assumption on my part? 

Hope: I can honestly say up until 2001, I've never been a very “running to the doctor” type person. I just fix things on my own. And if I really need to go, I go. This situation was so hard to live with that I just, not only did I need an answer as to why this is happening, but I needed to know what I can do about it. 

It was uncomfortable. It was a male doctor, probably 15, 20 years younger than me. Yeah, maybe 10 now that I'm thinking about it, but it was very uncomfortable, but I needed to figure out what was happening. I couldn't manage these three kids and all of this, like, I was changing my clothes more than I was changing theirs.

Bruce Kassover: You didn't even have any choice at that point, I would imagine; it's just, you've got to get it taken care of. 

Hope: I did. Yeah. So, you know, I went to this doctor to get some resolution and find out what exactly I could do to change the current situation.

Bruce Kassover: So you get your ultrasound and your ultrasound comes back and your sphincter muscle is not what it should be. What were the recommendations or what are the options that you were presented with? 

Hope: Yeah, so, at that time, I had one option with him to do a sphincteroplasty, where they reattach the sphincter muscle into a full circle. It wasn't a lifelong cure or resolution; it, you know, there was like a 50 percent chance it would work, but it was something that, that's really the only thing he could offer me. So I really didn't want to do it. I was nursing my son and I did the same for number one and number two child, and I wasn't going to do anything different with him.

And he said, “You know, you're going to have to stop nursing because you're going to have to be in the hospital for five days with IV medications.” And I slept on it for a couple days and had several bad days and just decided, I have to do this. And I found a way with a lactation consultant that I could do everything for my son and have this done as well.

Bruce Kassover: Wow, so that's really fortunate you were able to make it work out. So how did the surgery go for you then? 

Hope: So, the surgery went well. And again, it was stressed to me that this is not a lifetime solution. It's a temporary fix. It was, the recovery was not pleasant. There was no sitting for about five weeks.

I was a little rough. I was in the hospital for five days on IV antibiotics. It was, you know, it wasn't comfortable, but, you know, I had hope that that was going to help. And it did, it did, I would say it lasted, I would say it was probably about 40 percent better. So I was having less accidents, but it was maybe a year that lasted. 

Bruce Kassover: Wow. So that sounds like, I mean, maybe a little encouraging, but also, you know, a little disappointing. You go through a pretty significant procedure. You don't get quite as much relief as you really were hoping for, and it doesn't last very long. What was your mindset like when you started to realize that this was not really going to be a long-term solution?

Hope: So I did follow up with the doctor and, you know, he, they don't do it a second time. This is like a one-time procedure. It's not something that can be redone. So that's where I started with Imodium; that became my very best friend over the next 15, 16 years. And, and that helped to keep me in check. It helped me to be able to go to the store, to do, go to soccer games and football games. And, you know, that was pretty much how I managed everything in addition to the food. And it was kind of like, just kind of hoping something else would come along at some point. 

Bruce Kassover: And did something else come along at some point? 

Hope: It did. So, in, in the meantime, I had consulted with a different surgeon in, at a city hospital around here. And she was fabulous. She was so informative, gave me so many ideas again, that was, you know, it was, it was probably five years into this and she, the only resolution at that time was a colostomy. She was not willing to do that at that time because of my age and assured me that something else is going to come along – we just have to hang in there. And she was wonderful. 

I finally, she wasn't someone that I saw on a regular basis, but I did go back to see her around almost six years ago. And she introduced me to this idea of the InterStim, but she's not the doctor that performs it; suggested I see one of her colleagues who does this procedure.

Bruce Kassover: So, essentially, she said that you could get a colostomy, which for those people who are not entirely sure what we're talking about, it's where they, essentially, reroute your intestine through, they make a little, like a hole in your abdomen. And then you have to wear a bag that the waste goes into, which, I'm sure just from that description, anybody can hear is not something that anybody gets really excited about having done – although we have had patients on before who said that it was so life changing for them that they were incredibly happy and grateful for it. So certainly it can be really of benefit. But like I was saying, I don't imagine anybody says, wakes up in the morning, says, “You know what I want to do today!”

So she says, “Hang on. There may be stuff coming.” And then you hear about InterStim. Now, for people who are familiar with, with some of our previous podcasts, they may have heard about InterStim, but maybe you want to tell a little bit about what InterStim is from your perspective when you first learned about it, what, how was it positioned to you? 

Hope: So we were going to table the colostomy for, at that point, I agreed to see her colleague who ended up just being unbelievable. He's amazing. I ended up having an appointment with him and he explained how the device works, where it gets implanted, sent me home with brochures, so much information on how the procedure works and basically just everything I really needed to know, which didn't stop me from researching more.

But there is a lead that goes inside of your body. And then there's a battery that also is implanted after a trial period. 

Bruce Kassover: Yeah. So, it's like a little device. It's like, like about the size of maybe like a 50-cent piece. Is that about right? 

Hope: Yeah. Mm. That's about right. 

Bruce Kassover: Although when was the last time anybody actually saw a 50 cent piece?

Hope: That's true. 

Bruce Kassover: But yes, you take it, so this, this is a little device and that gets implanted, sort-of, like, right in your back, like right above your buttocks, right? And there's a, like a little wire, like you said, a lead that goes to a particular nerve back there. Is that, that right also? 

Hope: Correct. So the lead was implanted first and that is at your sacral nerve.

And for the trial period, so it's kind of like a test drive to see how it works with your body. That was taped onto my back. So I had an external battery with an internal lead and I did what's called a two-week trial. So I wore it for two weeks and I had results from Day One. 

Bruce Kassover: Results from Day One! That, I got to imagine that that must've been like the most unbelievable feeling to all of a sudden see like, wow, it just did it.

Hope: You know what? I feel like I'm a pretty positive person, but I have to honestly say I went into this procedure with a backup in mind, which was the colostomy, because it's something you just really can't comprehend on how it works until you have it done. I didn't have high hopes. I remember leaving for the hospital that day and I was like, well, you know, hey, we'll just see what happens.

And, you know, like, the colostomy for me would have been permanent. There would be no reversing. So this idea of the InterStim was like a safe next step. If it failed then I would have done the colostomy, but I had great results from Day One. I actually went to my son's soccer game the same day and stood for 90 minutes at his game, which I couldn't do before.

Bruce Kassover: Wow, that sounds amazing. I can only imagine now there's somebody who's wondering, because it does sound a little like, like magic, but correct me if I'm wrong, essentially, what happens is that your bladder and your bowels are controlled through your nervous system and through, either, there's a brain-bladder and a brain-bowel connection.

Hope: Correct. 

Bruce Kassover: And what this device does is that it stimulates, it just sends just barely perceptible electrical stimulation to this particular nerve that's believed to be involved with this brain-bladder or brain-bowel communication, and that stimulation is what has the effect of calming the incontinence. Does that sound right to you? 

Hope: Yes. And it all made sense because I was getting the urge to have to go. I knew when I had to go, where I didn't experience that the prior 17 years. So it was my life before the InterStim, I was racing to the bathroom within like, if I was not within like five seconds to a bathroom, I was done. With the InterStim, it varies. Like there's sometimes where I'm at the grocery store and I feel like I might have to go and I just continue my shopping, come home and then go to the bathroom. It made such an impact on my life. I can't even, I can't even describe it other than, like you said, it was like magic. 

Bruce Kassover: Now, I know that it doesn't always work for everybody, of course, because nothing always works for everybody. But I don't think that you're alone in getting good results. I mean, this is, you know, it sounds like it was, it was certainly new information and a new introduction to you. But I also believe that InterStim has been done for literally hundreds of thousands of people over, you know, something like 20 years. I mean, I may be mistaken about how long, but for a long period of time, this has really been very well tested and proven technology. So your experience is certainly not unique, that's for sure. 

Hope: You know what? I think some people, they don't achieve immediate results and that's why there's a length to the trial period. I certainly didn't expect it. I wasn't told that, “Oh, you're going to go home and have results the first day.” I certainly was not told that it was, you know, some point during the trial period that you will see results, ye hope that you'll see results, and I was floored. You know, I mean, I was on top of the world, but I was just, I couldn't believe it.

The 17 years was kind of, I don't want to say forgotten because a lot of things happened in that time period that you just can't forget. But this just was, it just, it just changed my whole outlook on life completely. 

Bruce Kassover: I would imagine that after that first, after that soccer game, you probably wanted to call up the doctor and say, “Put this in me now!”

Hope: Yeah. Oh, I did. I did. And yes, like I said, I had a two-week trial, and it's not the most comfortable thing to have something external, a lot of bulk in the back area, like around the hip area. But you know what? It was so worth every second. Like now when I talk to people about it, a lot of times the people that I speak with will say, “What do you mean, I can't take a shower during the trial?”

And I'm like, ah, that's the easy part. It's no big deal. So at the time when you decide to possibly have it done, the thought of not being able to take a shower is like your biggest crisis. But during the trial and getting, having good results, it's the last thing on your mind. 

Bruce Kassover: I could imagine. So you decide that you are, you and your doctor together decide that you are going to have the implant done. How does that procedure go? 

Hope: There are different trials that they do. So my trial could be different from someone else's, but when I went in for the procedure, exactly two weeks from the date of the first procedure, they implanted the battery and then connect the lead to the battery. So now the battery is internal.

And as you said, like, it's kind of like your backside, but your back, lower hip area is probably the best way I would describe it. Mine is on my left side. I don't know if they do them on different sides. I would imagine so. Very short, in and out 30 minutes, and I came home. So it was nice to have the battery internal now at this point versus external.

Bruce Kassover: And so is this forever now?

Hope: For me it is! So at the time I had, what was only in existence was a five year battery. They now have longer term batteries. So when my battery is ready for replacement, they will go in and remove the old battery and replace it with a new battery. 

Bruce Kassover: Well, that's great. So you really do have something that's going to be a lasting solution. And do you find that it continues to deliver the same sort of results that you experienced towards the beginning? 

Hope: It absolutely does. You know, it's really, it's still hard to comprehend like how this little lead in this battery is making such a big difference. I've had times of what I would call urgency, where I've noticed that I'm having to get to the bathroom quicker.

So, this device comes with multiple programs where you can change the program, which will help to give you better results. I've done that on occasion, but for the most part, it just, it functions on its own. I visit the doctor once or twice a year to have the battery life checked. And that, that's really it. I mean, it just functions on its own. I'm not really doing anything. 

Bruce Kassover: That's unbelievable. I bet you, you wish that you had heard about InterStim a long time before you actually did. 

Hope: You know, one question that I get asked often is, “If you could change anything, what would it be?” And I always say I would have done this a lot sooner. That's my only regret, is not doing it sooner. 

Bruce Kassover: And I guess what that also speaks to is that you really do need to speak with a specialist. Go seek out help because if you find people who are aware of the treatment options that are out there, they can offer them. 

Hope: Exactly. And I have to believe that there are so many more people out there that are having incontinence issues and they maybe have been told that, “Well, you know, you're getting older, this is going to happen.”

A lot of times I think for women, it's, “Well, you've had children,” and you know, you can't, don't settle, don't settle for that. You have to, you know, advocate for yourself and be able to go out and talk about it. Like I don't, it's, was it a comfortable thing? No, but the specialists that I've gone to are colorectal. This is what they deal with. So this is not new news for them. 

Bruce Kassover: Yeah. I hope that's encouraging because it really should be that, yeah, you're right, it's not comfortable, but you know, it's even less comfortable is dealing with issues like that for the rest of your life. 

Hope: Oh yeah. You know, I think a big trigger for me was that I was with my youngest son, we were looking at colleges and had, I always had a backpack in the backseat of my car, always had a change of clothes, wipes, anything and everything I could possibly need. And we arrived for a tour somewhere and I went in the back to get something and he saw the bag and he's like, “Do you need that mom?” And I said, “I hope not,” you know, and we just, we kind of went on our way and that just kind of stuck with me. 

Bruce Kassover: Wow. I could definitely imagine. So, Hope, is there anything in particular that you want listeners to know? 

Hope: I think what I would advise, suggest would be to, you know, you have to be your own advocate. It's something that's not easy to talk about. You have to seek help for it. It's just, it's not acceptable to live like that. And there are viable solutions out there. The InterStim therapy being what I found for resolution and being able to move forward with my life. So I think that's so important to speak up about it.

And don't be, don't be embarrassed. Again, it's not an easy thing to discuss with anyone. 

Bruce Kassover: Yeah. One of the things that we say at the National Association for Continence is that there's no shame in being human, and trying to stress to people, yeah, you don't, you know what, everybody, you know, everybody has issues and you know what? Just go to the professionals who deal with it – that's their job – and get it done. 

So, you know, though, this is Life Without Leaks, and even though we haven't really been talking about bladder leaks today, we have been talking a lot about incontinence-related issues, and we always like to end with one little bit of advice, a hint, or a tip, or something for people to take away. So I'm wondering if you might have one that you could share as well. 

Hope: So, seeking this device could be life changing, as it was for me. And I feel like, what have you got to lose? That was said to me before I had this done and has always resonated in my mind. And I really had nothing to lose, but everything to gain.

Bruce Kassover: And it sounds like you gained an enormous amount. Thank you for joining us. We really appreciate you sharing your story. And I hope that, that you are giving a lot of hope to the, to the people out there who are struggling with this issue and who are unsure of what options they have and maybe a little insecure about seeing somebody and talking about it. So thank you, I mean, it an enormous amount.  

Hope: Thank you. I appreciate you having me, and it was a pleasure.

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. This podcast was supported by our sponsor partner, Medtronic, makers of InterStim systems for bladder and bowel control. To learn more about InterStim therapy, visit talkleaks.com. Our music is “Rainbows” by Kevin MacLeod and can be found online at incompetech.com.