Bowel incontinence is NOT what you think it is!

If you’re thinking, “I don’t have a problem with bowel incontinence because I don’t have explosive episodes,” you may not realize just how broad a condition bowel incontinence actually is and all the different issues it encompasses. In fact, by some estimates, 27 million people in America experience some form of bowel incontinence – that’s an enormous number of people, most of whom are terribly uncomfortable talking about it. 

That’s why we’re excited to be joined today by Dr. Jannah Thompson. She’s a board certified urogynecologist and urologist in private practice in Grand Rapids, Michigan, and she’s an expert not only about the diagnosis and treatment of bowel issues, but also about making patients feel comfortable reaching out and finding the help they need. 

Dr. Thompson can be found at happybladdermi.com, and you can visit her on Facebook @jannahthompsonmd.com.

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 joining us today is Steve Gregg, the executive director for the National Association for Continence. Welcome Steve. 

Steve Gregg: Thank you, Bruce. Great to be here. 

Bruce Kassover: And joining us again today is Dr. Jannah Thompson. She’s a friend of the podcast and a board certified urogynecologist and urologist in private practice in Grand Rapids, Michigan. She has a particular focus on pelvic organ prolapse, overactive bladder, fecal incontinence and other bladder and bowel disorders. Thank you for joining us, Dr. Thompson. 

Dr. Thompson: Thank you, Bruce and Steve. 

Bruce Kassover: Excellent. Now today I was hoping that we could focus a little bit about fecal incontinence. We talk a lot about bladder disorders and one of the things that doesn’t get the attention it deserves, because it really is a fairly common incontinence issue, is fecal incontinence.

So maybe you could tell us a little bit about fecal incontinence, how common it is, what sort of conditions are included in that umbrella, get a little overall introduction to it. 

Dr. Thompson: Sure. Well, I’m really happy that you guys have chosen this as a topic to speak about because it really is not talked about.

And for those of you who aren’t aware, bowel incontinence is where someone involuntarily loses stool, so they’re having accidents of stool. And while that may sound horrifying, you may find that if you are willing to talk to friends or family, there’s a lot of people who are suffering from this if you aren’t yourself.

And there’s, as you can imagine, extremely embarrassing condition. There’s sort of a shroud of secrecy around it, and for many women, they feel very alone. They don’t know who to turn to. They feel embarrassed to tell their doctors about it. I think that’s one of the unique things coming from a urology background is that, as a urologist, you really do need to be comfortable talking to patients about very sensitive issues and sensitive parts of their body.

And so bowel incontinence is something that I really try to ask each patient several times about when they come to the office. Because again, there’s that, “I’m not sure why you’re asking,” or “I’m not sure I want to completely divulge this.” Or what’s been more astounding or a learning thing for myself is that women and men have done so much in their life to make sure it doesn’t happen that they almost have convinced themselves that it’s not an issue or it’s happening so infrequently because they have controlled every aspect of their personal and professional life so that it doesn’t happen.

And so when we talk about the prevalence, it’s about one in 12 individuals in the United States have this. And if you consider something like overactive bladder, which is one in six, that’s, that tells you that there are a lot of people that have both going on, both bowel and bladder incontinence.

Bruce Kassover: That’s an incredible, I was just sitting here, I pulled out my phone, I was just going to do the math. So if we have 325 million people. Wow. That’s 27 million people who experience it. That is, that’s an astounding number. I would have never imagined that it was, that it was nearly that prevalent. 

Dr. Thompson: And the most common reason that it occurs in the, in the United States, there’s different causes in other countries, but the most common is childbirth.

So for women, that’s really their biggest risk factor now, things like chronic constipation, pelvic surgery, pelvic tumors do play a role, but that is the number one cause. And the signs of that are really having stool in the pad or the underwear. And that’s usually how I ask a patient, I ask them, do you have stool in the pad or the underwear?

When you get the feeling that you need to go to the bathroom, is it urgent? Do you feel like you have to run there? Does sometimes it happen without, without you even knowing about it? So all of those things can occur to some degree. What is a fairly typical common symptom, though, is that these patients will find that it takes them a long time to wipe clean, so they’ll be in the bathroom trying to get clean, and then when they come back to the bathroom, maybe because they’re urinating frequently or it’s just time to go, and they wipe their stool there, and they think, you know, “Well, I, I know I wiped clean.”

I didn’t leave the bathroom not clean. And so then they’ll blame it on things like maybe it was a hemorrhoid or, or maybe I need to get those flushable wipes or things like that, but the biggest thing that they start to do is they start to limit their social interactions and they change, you know, they’re never wearing white clothes and they’re taking extra clothes with them to work and to social events to just try and control for as many factors as possible.

Bruce Kassover: That brings up so many questions. First, I want to ask you more about childbirth. For people who experience FI as a result of childbirth, are their symptoms transitory? They, do they wind up getting over it? Or is that something that, that sort of, once it starts to occur is a chronic issue that they’re going to have to learn to, to address for the long term?

Dr. Thompson: I think there’s probably two groups, one where it happens afterwards and it maybe doesn’t improve, but more commonly it would be that they develop it later on. And probably the trauma of the child birth and then the change in the stools over time, or maybe they have a rectocele, those things over a lifetime start to contribute to the condition.

And there’s a lot that we don’t understand about it. You know, there’s testing that can be done looking at the nerve potential, looking at the defect in the sphincter muscle. Like how big is it? But none of those have really sort of sharpened the treatment options for the patient. They don’t tell us, you know, whether one option would be better than another, but probably all – both the nerves, the muscle, the tone the what you’re eating and drinking, all of those things are impacting the condition.

Bruce Kassover: Thank you. And beyond childbirth, I know that if we’re thinking about that whole universe of 27 million patients, you know, certainly you hear a lot about things like Crohn’s disease and IBS and IBD and all sorts of initials and names thrown out. What is the family of different conditions that, that are covered by the overall umbrella of fecal incontinence.

Dr. Thompson: Well those conditions you mentioned are many of them inflammatory conditions where the, the bowel is impacted at various levels. But those patients may or may not have bowel incontinence. And there’s far more patients out there that have bowel incontinence than have Crohn’s or ulcerative colitis-related bowel incontinence.

And so it does take sort of several specialists when you’re looking at Crohn’s and ulcerative colitis to be able to decrease the inflammation and work on the diet. But those are the same things that we work on in patients that have bowel incontinence without another underlying condition. So just like in our friends with urinary issues, what we eat and drink is important. So looking at, are there triggers for the bowels to be softer, right? If I go out and eat greasy food, I’m going to have a harder time. Or you know what? Dairy seems to be a big trigger for many people. And so those are usually the places that we start and educating about, okay, is there something potentially that you’re eating or drinking? Is it the consistency of the stool itself? If you’re having constipation and we can get the constipation to improve, you may see that you’re no longer leaking. Or if you’re having diarrhea, then the diarrhea needs to have a workup, make sure it’s not from an infectious source or an inflammatory source, and then try to bulk the stool more so that there’s more form and less likely to have accidents. So those that’s a big part of the initial treatment. 

Bruce Kassover: So if I come to you and either I’m willing and comfortable to discuss symptoms or you through the consultative process are able to get me to talk about it, what is the diagnostic process like? What sort of questions do you ask? What sort of tests or other things would be done to help get a better sense of what’s really going on?

Dr. Thompson: Well, I think first is what we, what I just mentioned with really understanding what their bowel movements are. So how often are they having a bowel movement? What’s the consistency of it? And I really get them to try and describe that, which for most women, I don’t think they look at their stool. So they may have to start doing that, but knowing what the consistency is, because if it’s not soft and formed, if they’re more towards diarrhea or constipation, then we try to get those conditions better managed.

And then it’s a diary, really understanding how often it’s happening. And this is where I’ve learned to be a better history taker for my patients, as particularly with this condition, because I think patients with bowel incontinence think explosive episodes, right? Ones where they’re having to leave immediately.

But bowel incontinence can be much smaller. You can have those explosive episodes, but you might just have smearing. You might have it where it’s taking a long time to wipe clean and you come back and there’s stool there when you wipe or they, they lost a piece of stool and they only noticed it because they went to the bathroom. They didn’t even feel it. And so I try to get them to tell me how, how often these episodes are happening and, and sort of the severity of the episodes and then, you know what, what things they’ve done. So many times they’ve already tried fiber, right? They’ve tried to bulk the stool or maybe they’ve tried Miralax if they’re having constipation. And if they haven’t, then that’s an easy place for me to start. Testing those such as like anal manometry, which looks at the like a tear in the anal sphincter or pudendal latency, nerve latency testing. Those things really have not shown to predict who might respond to one kind of treatment or the other.

They gain information, but they don’t really change our treatment course. And so what I’ve learned from my colleagues in colorectal surgery is that in general, they aren’t needing to do those tests to determine if somebody is a candidate. It’s really about making sure their diarrhea has been worked up, that they’re using bulking or fiber, and if they’re having constipation, that they’re using Miralax, and if those things don’t work, prescription medications. And then at that point we can move on to other treatment options if those conservative measures aren’t working. 

Bruce Kassover: If you are living with a bladder or bowel issue, you know firsthand that it could be a daily struggle. It’s not like it’s something you could just ignore when there are other things you want to focus on.

That’s why it’s a good idea to follow the National Association for Continence on social media. We have an active Facebook, Instagram and Twitter page, and we put out daily tips and insider information to help you manage your condition. If you’re looking for a little bit of inspiration or motivation, if you’re interested in finding out about new therapies or new treatment approaches, check us out.

We’re putting links in the show notes to help you get there in a click, and you’ll see that it’s really worth a follow. 

Steve Gregg: Dr. Thompson, one of the areas that we struggle with is helping patients get to specialists. And we have seen data and others have seen the same data that when a patient goes in and talks their primary care, they went to primary care to ask questions.

Primary cares don’t want to answer questions either because they have a limited amount of time and or knowledge. And we know that’s a huge struggle with SUI and overactive bladder. And as we think about FI, it’s even worse. And we’re trying to find ways that maybe with folks like yourself, you can start having recommendations that primary cares ask one or two questions to help identify whether they need to refer them on immediately. Have you seen anything like that that’s worked? 

Dr. Thompson: Well, initially when they started coming out, CMS, with guidelines about, you know, questions that the primary care would need to ask, you know, there’s the depression scores, there’s, you know, making sure patients are up to date on all their screening, whether it’s mammography or pap smears or colonoscopy, there was initially a bank of questions that were very straightforward about at least urinary incontinence. I don’t believe I saw any on bowel. And I had tried to work closely with people in town thinking that “Hey, if they do uncover that, these are some simple things that could be done. And these are the times when the specialist would need to…” but quite honestly, primary care is so inundated with all of these different measures and going through the history and making sure things are up to date that it leaves very little time to uncover conditions that are outside of that.

And I almost think in order for that to be part of more routine practice, it would really need to be a specific measure, even if it just triggered, “Hey, you have these concerns. We’re going to bring you back with a focused appointment with the nurse practitioner or P. A. to really delve into that.” But I really think that, unfortunately, because these aren’t life threatening conditions, it’s going to be very hard to put that into sort-of primary care routine physical exams.

Having said that, it’s interesting, they did a study looking at patients who had gone and spoken up about their complaints, and it took on average six different physicians before the patient got to someone who could help them with that, which clearly tells us there’s a lot that could be done. And cardiologists actually did a pretty good job in getting a bowel history, which I thought was fascinating; I’d like to delve into that more. But yeah, I think that’s why for myself, even though a patient often doesn’t come to me for bowel incontinence, that’s why I’m asking about it, because usually there aren’t other people, other medical providers that are asking those questions or probing about it. And when I see my urinary patients, they often tell me, “look, I had to bring this up several times,” or, “You know, I was tried on different medications,” or “I finally had to sort of be an advocate for myself and say, I want a referral.”

And I think that comes down to the fact that it’s probably more of a quality of life…well, it is, it’s a quality of life issue and not a life threatening issue. 

Steve Gregg: We struggle with this a little bit, trying to get patients to see those that can actually help manage their condition. On one of our recent podcasts the physician mentioned that they’re probably about, there are about ten thousand, eleven thousand urologists in America, about 2, 500 urogynes.

But of the urologists, only about 3,500 of them are really focused on incontinence. So the population of doctors that have that as a specialty that they like doing and are good at is a relatively small group. And so we struggle and get requests all the time, you know, “How do I find Dr Thompson?” Well, if you’re in Michigan, I can get you to Dr Thompson. You know, if you’re rural America, it’s a little hard. 

Dr. Thompson: It’s very difficult. It’s very difficult. And I think, you know, it would almost be a shift in how we look at things, you know, coming from a career where I really do focus on quality of life issues, I really feel strongly that if a patient’s quality of life is considered, they may be potentially more motivated or more able to treat those conditions that aren’t affecting their quality of life.

I often say, you know, the patient doesn’t necessarily care what their hemoglobin A1C is at any moment. Now there are patients that are, you know, really trying to titrate that down and really working hard on their diet and their medications, but there’s many patients who aren’t. And I often think, you know, when it starts to affect the urinary system and they come in and see me for that and then we get to have a conversation about, “Hey, what’s happening with your sugars,” you know, there may be different motivations there for the patient, depending on the individual. 

Bruce Kassover: So maybe you can tell us a little bit about the treatments that are out there for people who present with some of these symptoms.

Dr. Thompson: Well, for a long time, there was really only one treatment, and that was what was called a sphincterplasty, which is where you go in surgically and you repair the anal sphincter where it’s torn or there’s a defect, but what was found, and this is backed up by not only the American Colorectal Society, but also the Gastroenterology Society, is that less than 10% of those patients in a year were continent of stool, meaning they didn’t have leaks, so less than 10% in a year. And the potential complications that they could have from that surgery, like a fistula or pain or reoccurrence was too high. And so then there were things like InterStim and bulking agents. 

Now a bulking agent is actually an injection. It’s where you would inject the anal sphincter with a substance that would give the sphincter more bulk. So instead of repairing it, you would try to tighten it by this bulking agent, but those really had abysmal results, too. And so really the, the recommended treatment for bowel incontinence after working through what we’ve talked about above is InterStim.

And what InterStim is, it’s a form of neural modulation, and you might have heard of things like pain stimulators. “Hey, my friend has a pain stimulator,” or there are stimulators now for sleep apnea and other conditions. But this is specific to bowel and bladder symptoms. And what’s fascinating about it is that it helps to improve how the brain and the bowel or the brain in the bladder communicate. 

And many patients will say, “Oh, that makes sense. You know, when I get this urge to go, there’s no waiting, right? It just happens.” And if I tell them, “Hey, what if we could bring in a new conductor for that bowel that said, ‘Wait a second, it’s not your turn to play,’ or ‘I want you to play a little more softly’, or ‘I want you to bring down sort of the tempo.’”

That starts to make sense to them, or, or maybe the analogy of a thermostat, right? Somebody turns your thermostat up so high that now you’re aware of that bowel and bladder when it really should be a background noise or that thermostat should be turned down. So what if we could come in and turn that down and set it at a level that is much more acceptable.

Now I get the message to go, maybe there’s more time that I can finish up so that I can get to the bathroom and evacuate the bowel or bladder in a more acceptable place. And so the goal with this is really to give them a trial and see what it’s like. And that’s also the thing I love about this therapy is that the patient gets to experience it before anything permanent has occurred. 

And so they would come in, they would have a testing phase where a simple wire, looks like two strands of hair, is placed in the natural openings in our tailbone. So it’s below the spinal cord. There’s no risk of nerve injury, and that wire is simply placed. And it kind of floats or surfs, we call it surfing the nerve, it surfs near the nerve to the bowel and bladder and with some comfortable, mild stimulation, like a hum, buzz, tap, they will begin to hopefully experience less bowel incontinent episodes or less urgency or less bladder incontinent episodes if we’re using it for that.

The goal in this treatment is to get 50% improvement. So let’s say a patient is having three episodes a day. Maybe they’re down to zero to one. Or if their episode is large and it’s not contained to a pad, maybe it’s down to a smear or something that is easier to clean up from or easier to finish their task at hand.

And so we really look at our diaries before the procedure and after to help counsel the patient on whether or not the trial was successful. From the trial, then they have the option of having a procedure to place that permanently. This is where now the wire goes in the same way, but it connects to a battery and the battery simply sits in the upper butt cheek.

And most people are like, oh, battery. But if you think about it like a pacemaker battery, it goes through a very small incision. It sits in the butt cheek. Really, if you slide your hand over the bottom, you can’t feel it. And it’s there working behind the scenes. There’s nothing they have to push or activate to empty their bowel.

They simply hopefully are having less incontinence episodes. With that technology over time we now have a device that has a battery life of 10 plus years, which is remarkable in terms of reducing the number of times the patient has to go back to surgery. 

Bruce Kassover: And how effective is that once it’s permanent or once it’s once it’s implanted? Is it also still shooting for 50% or does it kind of go even better than that? 

Dr. Thompson: Well, we still shoot for 50% in terms of improvement. And the reason with that is that there’s a lot of things that impact the bowel, just like the bladder, right? The patient has to keep up on their fiber. If they tend more towards diarrhea, if dairy is a trigger, it’s still going to be a trigger that the InterStim device can’t override that, but if they are seeing that improvement, usually over time that does maintain, and that’s what has been shown in a five year study is that patients that experienced 50% or more improvement, the vast majority, about 89%, if you’re talking about bowel patients, 89% of them continued to experience 50% or more over those five-year period of time of symptom improvement. 

Bruce Kassover: Yeah, that really is encouraging because I would imagine that of all the conditions that we’re talking about, this has to be right at the top of the list of those conditions that people want to find meaningful solutions for. We’ve talked before on the podcast about neuromodulation for bladder conditions, so I was interested to find that that it also works for bowel disorders as well.

Dr. Thompson: Yes. And it’s the same procedure. So if a patient, as I mentioned, I think in a different podcast, you know, there’s a lot of overlap between the bladder and the urine symptoms, and so if a patient is experiencing both, it would be the same procedure. 

Bruce Kassover: I’m interested, physiologically then, because if you would ask me ahead of time, what causes bowel disorders, aside from, you know, the inflammatory things we’ve mentioned very briefly earlier, that I would have thought it has something to do with, you know, weakened muscles, but I’m guessing that if we’re talking about improving brain bowel communication through electrical stimulation, that it’s something neurological also, or at least at least in addition, am I understanding it correctly?

Dr. Thompson: I think that it’s that medicine has started to take a shift. And instead of all these conditions being the problem with the organ itself, right? The bladders, the problem, the bowels, the problem we’ve taken a step back and said, “okay, well, we have treatments and we’ve tried it at that and they’ve worked okay, but what else could be impacting the bowel and the bladder?”

Well, definitely, you know, that the signal that tells you it’s time to go, that is coming from the brain. And when your bowel gets full, and you feel like you need to go, that message is sent to the brain and the brain says, “okay, it’s now time to do that,” or “No, wait. You need to finish what you’re doing. Walk to the bathroom to an acceptable place.” And so when we took that shift, now you’re starting to see, like I said, in pain, in Parkinson’s disease, gastroparesis, which is a slowing of the stomach emptying, sleep apnea, bowel, bladder incontinence, all have treatments that are based on this modulating the nerve or quieting the abnormal sensation that’s coming from the organs so that there’s time for the brain to communicate back. So yes, there is a, there is a neurologic aspect to it. 

Bruce Kassover: That’s fascinating. So if there’s somebody who’s who suspects that they may have an issue, is there a single takeaway or a single piece of advice that you would like to leave with them?

Dr. Thompson: Yeah, I think just really trying to find someone who can help you with that condition and there are great resources like this podcast.

So I think the best way is to try and find information or someone that can help you with this. You can go on a physician finder for Medtronic and see about a physician in your area that treats this condition. You can go to some of the society websites and try to find a physician in your area that way.

And so getting the education that you need and being an advocate for yourself. Unfortunately, I wish that it was streamlined… if you went into a primary care office in Arizona or Alabama or Michigan, that you would be directed to where you need help. But a lot of times you have to be your own advocate, especially for conditions like this, where it may not come up in a standard medical exam, and so being able to ask for a referral to a urogynecologist or urologist that specializes in this would be the foremost thing I would have you do. 

Bruce Kassover: Great advice. Well, we appreciate it. And thank you for joining us again. 

Dr. Thompson: Thank you. 

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 the InterStim systems for bladder and bowel control. To learn more about InterStim systems, visit controlleaks.com. Our music is Rainbows by Kevin McLeod and can be found online at incompetech.com.