Bowel Incontinence After Cancer: A Patient’s Story

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 as always is Sarah Jenkins, the Executive Director for the National Association for Continence. Welcome Sarah. 

Sarah Jenkins: Thanks, Bruce. It’s great to be here. 

Bruce Kassover: Yeah. Thank you. And today we have as a guest, a patient named Judy who is going to be sharing with us her experience with bowel incontinence. Something that a lot of people are really uncomfortable talking about, and that makes it so much more important that we hear from patients themselves, because the more we hear from patients, the more other people feel comfortable talking about it and seeking out help themselves. Judy, thank you so much for joining us today. We really appreciate it.

Judy: Oh, you’re welcome. 

Bruce Kassover: So maybe you could start out by telling us a little bit about yourself, maybe where you’re from or what you do, what your life looks like outside of your health challenges. 

Judy: I was always a secretary in a school for about 30 years. And right now I am just taking exercises a couple of times a week at a swimming pool here. But basically going out is really tough for me because I’m always worried about having an accident and it usually happens. So it’s very anxiety creating for me. And outside of that, just my husband and I are retired now and living comfortably and enjoying, just enjoying, not the stress of working and everything like that. 

Bruce Kassover: I look forward to enjoying the not stress of working also, or the stress of not working also. So I’m hoping to be there eventually. Now, you’re talking about accidents and how anxiety inducing that can be. I’m wondering if maybe you could tell us, at the beginning, when did you first notice that something was going wrong and when did you first recognize that this is a problem that has to be treated? 

Judy: It started out in 2007, I had endometrial cancer stage three, and about 10 lymph nodes removed. And for a few years I was doing quite well. And then after that, the incontinence started. It wasn’t it wasn’t actually too bad at that point. It started out being pretty mild and the accidents not happening very often, but as the years went by, it continues to get worse. And right now it’s it’s not good.

Every time I go out, I have to find public washrooms and quite often don’t make it. So always carry clothes and extra Depends with me. And it’s just as I said, just very, so much anxiety towards going out, or now it’s, I can’t even make it from one room to another without having a bowel accident.

So it rules my life now, to be close to a washroom. I’m very happy that I survived the cancer and that, but it would be really nice to live more and enjoy life more than what I have been. It just, it’s just always on my mind, always worried about it and especially when I go out somewhere and that’s really hard on me.

Bruce Kassover: I could only imagine… talk about, added the frying pan into the fire. You managed to beat cancer. And at stage three cancer, one of the most challenging sorts of, health issues that you could possibly overcome, only to find that sort of, as a result of what got you through is that you have this other problem that is clearly life limiting and really got to be just psychically very damaging. That’s a remarkable story. 

Judy: Yes, and I know that it was from the chemo for six months and the radiation, it was every weekday for three months, so I’m sure that’s when the damage happened. 

Bruce Kassover: So when we’re talking about incontinence issues, is it entirely bowel incontinence or is it also bladder incontinence?

Judy: Just bowel. 

Bruce Kassover: Okay. So you started to notice these problems. Obviously when something like this happens, you realize this is not expected, it’s not normal. Did you immediately go to your doctor and say, “Hey, what’s going on?” Or did you try and manage for a while? 

Judy: I tried to manage for a while. 

Bruce Kassover: And I’m guessing it wasn’t terribly successful if you eventually wound up going to a doctor.

Judy: No. I have an amazing doctor. And he’s a surgeon. And when I started talking about things, he gave me lots of good ideas and I tried them all. I tried, like, physiotherapy to strengthen the muscles in my sphincter. I went there for about a month, three times a week, and she would check it, but she said because of the damage to the sphincter the exercises weren’t working ’cause there was no real muscles there to to regain strength. So I tried that and then he suggested the Emsella chair. So I went to body measure, it’s called, and went for treatment there. It was very expensive. It was over $3,000. And, yeah, what you’d do is you’d sit in a chair and then it would send like this magnetic voltage, and it was supposed to strengthen your core and your muscles in your bowel, and I found that it did help a little bit.

But I have another problem that’s called bowel obstructions. I have it every three months, so as soon as I had a bowel obstruction, whatever help it did for me was gone. And I couldn’t really afford another $3,000. So that was the end of that. And the surgeon said that he could go in there and try and help me, but he said the adhesions and scar tissue are all over, like it’s not in one spot.

So he said, if I do go in there to help your bowel obstruction, I’ll be opening you up and it’ll cause more bowel obstruction. So that’s why he’s just. I’m seeing him again next month. But other than that he’s pretty much tried everything for me, but nothing has helped. 

Bruce Kassover: Wow. So do you have any idea what the future may hold from a treatment perspective? Has he given you any inklings about what the next steps might be? 

Judy: No. He always said, things are improving. You never know what’s in the future. And that’s why I made another appointment. I haven’t seen him for probably about three years. So I’m looking forward to seeing if there’s anything available now for me.

Bruce Kassover: That’s one thing, in, what we’ve been doing with the National Association for Continence for years is we can say definitively that the technology, the medications, the therapies are genuinely always improving. So if he has a hopeful outlook, then there may very well be some good reason that there are things out there that could really deliver you the sort of relief you’re looking for.

But that sort of gets me onto that question… as somebody who is in the process of going down this treatment path, faced with a condition that a lot of people would find, really, and you’ve already admitted is really very difficult to manage from a mental health perspective, how do you find that you motivate yourself to deal with it? What do you, you do to keep yourself going? 

Judy: I try to, I have these ladies, we call ourself the golf bags, and we meet every Wednesday. So before I go, it’s stressful and anxiety, but once I’m there with them and we’re just joking and talking in that, it really helps me to feel in a better mood and, just just walking outside, possibly in the mornings and going to these exercise classes and that, it seems like I’m doing something like that. It’s still there in the back of my mind, but not as forward as usual in my mind about having an accident. 

Bruce Kassover: Everybody talks about how having a community is really one of the most important things you can do for your own mental health. So it sounds like you’ve found one. Are you open with people who are close to you about the struggles that you’re dealing with? 

Judy: Not everyone. My husband realizes, ’cause I’m in the washroom probably, 30, 40 times a day, so he knows. And a really close friend. Actually she’s in Calgary and one here in Winnipeg, but the rest of the time I don’t, because when you’re out and everybody’s having a good time and that, I would never mention anything about it. 

Bruce Kassover: I can imagine it’s the sort of thing that I would think most people would be very reticent sharing because it’s not ordinary, pleasant conversation. But the fact that you even have one or two close people that you can share it with has got to be some sort of relief, I would imagine.

Judy: Yes, it is. 

Bruce Kassover: So aside from the mental health challenges that you’re working to manage, what about the physical things that you do to help manage your condition? Are there products you use or do you follow any behaviors or dietary changes, things like that, that might make a difference for you?

Judy: Yes, I I eat the same foods every day for supper. Every night I have a chicken breast and some well-cooked carrots and usually some rice. And that’s every night. And if I go out, I usually have, like, pizza, but gluten-free pizza with no sauce. No cheese, just some pepperoni in that. And it seems okay, but I only do that once a week.

And yeah, I think my heating pad is really the best for me. Sometimes when I even think there’s pain coming on for a bowel obstruction, I take my heating pad and use that quite a bit, and I find that helps a lot. Just to calm me down and make me feel better. I don’t take any meds. I was taking Imodium to help, and I saw a fellow, like a gastroenterologist , and he told me to up my Imodium, two in the morning and two at night.

So I started that and two days later I had a bowel obstruction. And the the surgeon said to stop taking the Imodium. So I’m really not taking anything for my incontinence. I just make sure when I go out I have extra clothes, extra Depends, wipes and yeah. 

Bruce Kassover: I was going to ask you about absorbent products or barrier products, if there’s anything that you found that was particularly helpful. And it sounds like you, you’re saying that some protective garments are really useful for you? 

Judy: Yes. I use Depends and, yeah, usually, usually they work. But if I have an accident, like my accidents are very, how should I put it nicely? Very messy. So I usually have to come home and shower afterwards. So other than Depends, I’m not using anything. And they work if it’s not a large incontinence, but, but the larger ones, which happen quite often, I just have to go home and change and shower and everything. 

Bruce Kassover: I can imagine. Maybe that actually brings up another question that I have is, do you have any advice or suggestions from a personal hygiene perspective as somebody who’s, who has to deal with , cleanup issues and showering and laundry, any thoughts on those things for people who might be experiencing similar challenges?

Judy: Nothing really works for me when it’s a large one, but yeah, I just make sure, like I always wear Depends now even in the house and that, ’cause I don’t make it to the bathroom now. But I always make sure where the bathroom is whenever I’m out.

And I find there’s my favorite washrooms that if I’m close to it, I will try and make it to that one. But other than that, I’ve been reading about these other Depends. They’re North Shore, I think it is, and they have an extra, like a mega pad that I might try and it also has sides on it, so I thought that I might try that to, maybe that would help if there’s sides to keep it in for longer if I have an accident.

Bruce Kassover: Yeah we’re actually familiar with them, and a number of absorbent product providers. If you go to… the fact that we’re talking means that you’re probably already familiar with nafc.org, but if you go and you take a look there, there are some product providers you can check out that may have just the right thing for you.

Especially because one thing we know is that it often takes patients a lot of time to find the products that really work for them, and they go through a lot of trial and error, and it’s to be expected. Don’t get discouraged if you try Product X and it’s not right. I promise that product Y may be just the thing that the doctor ordered. Sizing, fit, there’s so many different variables that go into it that it’s really worth shopping around till you get that right one.

In fact, one other thing that you just mentioned that I wanted to ask you about is you talk about, always looking for a bathroom, being prepared to go to a bathroom. Is part of what you deal with urgency? Does this sort of take you by surprise when it just happens? Or do you get that sense like, oh my goodness, I got to go and you just can’t get there in time? 

Judy: I’ve only maybe got sometimes I only have maybe two seconds. It’s that… it just comes right away. Even without warning. It’s just comes, and yeah, if I make it to the washroom and there’s people in there and that, then I just have to let it go and just go home and deal with it there. But yeah, most of the washrooms that are my favorites, like they’re very clean and everything, so I hate using them like a couple of, I think a couple of weeks ago I was out for three hours shopping and I had to go to four different washrooms with, and they were all accidents, and at that point, I felt really down. I figured, this really bothered me because it was just too many, too fast. And I thought, oh brother, things are getting worse for sure. But most days, if I do get to a washroom, then I just clean up and everything is okay. I can carry on after that.

Bruce Kassover: I got to say that is really a testament to your own personal fortitude and bravery and really, just an amazing resolve that you deal with this and you deal with what seems inside you may be feeling, the anxiety and the concern, but at least outwardly you appear confident and comfortable talking about it, so that’s remarkable testament to you. So really I got to say I’m very impressed. It’s really remarkable.

Judy: Thank you.

Sarah Jenkins: Have you guys, or you and your doctor explored surgical options to treat this? 

Judy: Yes. The one doctor, he he just said he didn’t want to do anything surgically ’cause it will create more of my bowel obstructions. And he also said the scar tissue and adhesions are all over.

If it was in one spot, he mentioned that he could do a resection, but he still wasn’t, doesn’t want to do anything sur surgically. Because of the bowel obstructions are about every three months, and that means an emergency to the hospital and ice chips for four days and then I’m released on the fifth if I can eat something.

And that every three months is, to tell you the truth, I really don’t want any more of those. They’re horrible. So it’s that’s why I trying to steer away, but I had a colonoscopy about two months ago with this amazing doctor, and before the operation I just said, what do you think about a colostomy bag?

And he said, make an appointment and we’ll talk about it. It’s possible. I’m not really, I really don’t want to do that, but I may have to for that reason. 

Bruce Kassover: Let me give you a little bit of encouragement because if it turns out that is the best solution for you, it’s one of those things that, in our experience you hear you have to have an ostomy, and people naturally are like, “No, there’s no, I’m just not going to have it. It’s nothing that I can ever imagine for myself. I don’t want to live that way.” However, if you hear the stories of the patients who have them, nobody has it lightly. Nobody has it just on a whim, it’s done in situations that really, require it. And I can’t tell you how many people we’ve spoken with who say, “I was afraid of it. I didn’t want it. It’s the best thing that ever happened to me. It’s changed my life for the better.” If it turns out that is the case and your experience is, anything like so many of the patients we’ve spoken with, then it’s not nearly as scary as it might be at first. So always listen to your doctor’s advice and make the best decision for you, but don’t let you know what you imagine it might be get in the way of what it could actually become. 

Judy: That’s good to hear. Thank you for that. 

Bruce Kassover: Excellent. But with that being said, while you’re still in this process and you’re still managing on a day-to-day basis, do you have any sort of little hint, tips, strategy, bit of advice to leave other listeners who might be in a similar situation with, so that they can also, have a better experience?

Judy: It would be really nice to have a group in the city where you could meet and discuss it. I haven’t had, lately, I haven’t had too many successes with the bowel incontinence. Even changing my diet to the same thing every day and to get to have these every day, it’s, I’m, I guess I really don’t have anything positive to say other than the fact is to just try and go out and still do it, when even though you know it might happen, and, my friends are all aware of the problems I have, but we don’t talk about them. But I’m sure if I had a, had an accident while we were out and I had to go home, they would totally understand. 

Bruce Kassover: That goes back to what we were saying about having a community and just how important it is. And so we really appreciate that. Before we, one thing I did want to mention is, are you familiar with the message boards at nafc.org, by the way? 

Judy: Yes, I’ve seen a few of them actually, and they seem really good. 

Bruce Kassover: I was going to say, because you talked about having a support group that’s like an online support group. So if you haven’t really explored them a bit I reckon ’cause it’s free, you can sign up and there are other people out there who I promise are going through similar situations and even if they don’t have advice that’s necessarily helpful for you, you can share experiences, commiserate, help each other, lift each other up.

So it’s worth spending a little time, and I certainly recommend it. And there’s, like I said, it’s free, so there’s nothing lost by, by taking a look at it.

And with that being said, Judy, thank you so much for joining us today and sharing your story. Like I was saying earlier, it means an enormous amount to so many people you’ll never meet, but you will have an impact on. So really thank you for sharing everything with us today. 

Judy: You’re so welcome. Thanks for having me. 

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.