Episode 21, 18 June 2019
To mark World Continence Week 2019 and its theme of “Laugh without leaking”, we’re joining forces with the Continence Foundation of Australia to break down the stigma and talk about bladder and bowel problems after stroke. Busting to share their knowledge and experience are Sue Blinman, manager of the nurse advisor helpline at the Continence Foundation of Australia, stroke survivor Jenny Ferrier, and regular guest Simone Russell from StrokeLine.
For more information about Continence Week visit www.laughwithoutleaking.com.au, or call the Continence Helpline 1800 33 00 66.
Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke. The advice given in this podcast is general in nature and you should discuss your own personal needs and circumstances with your health care professionals. You can join the conversation at enableme.org.au. This series is presented by Australia's Stroke Foundation, working to prevent, treat and beat stroke.
Chris: [00:45] The 17th to the 23rd of June 2019 is World Continence Week, and the theme this year is "Laugh Without Leaking", using humour to break down the stigma around bladder and bowel problems. So in the spirit of that, I apologise in advance for the many bad puns you will hear while you're streaming this episode. Because for many stroke survivors, incontinence is not just a wee issue. In fact, it can sometimes seem like the number one, and the number two problem, and it can dampen your prospects for a normal life. But do you just have to go with the flow and get used to it, or can you relieve yourself of this pressure?
Joining us in our recording cubicle today will be Sue Blinman from the Continence Foundation of Australia's helpline, and Simone Russell from the Stroke Foundation's StrokeLine. I'm sure they're both busting to share their knowledge.
But first, we have on the line, Jenny Ferrier, a stroke survivor from Launceston in Tasmania. Jenny is an advocate for stroke, a valued member of the EnableMe community, and a previous guest on this podcast. You might have heard her in our episode on emotional and personality changes after stroke. Jenny, welcome back to the podcast.
Jenny: Thank you, Chris.
Chris: [01:48] Now, like I said, we've had you on here before, but for those who haven't listened to the previous podcast, could you just quickly tell us your stroke story?
Jenny: Well, six years ago, I had a massive stroke, was totally paralysed down my left side, and spent three months in hospital, and made a miraculous recovery. But during that three months in hospital, that was where my journey with incontinence began, simply because I could not get out of bed.
Chris: [02:25] Okay, so what kind of issues did you have there?
Jenny: It just was urinary problems because I couldn't get out of bed in time to go to the toilet, that really was the beginning of it. Initially I had a, when I first went in, had a tube put in and then I developed an infection, so that was all cleared up, so from then on it was bed pans, which I hated. And then the nurses started to get fed with bringing them to me, with leaky bladder I think as well. Gradually as I strengthened, they managed to get me out of bed and put me onto what to me was like a transporter and pushed me to the toilet. From then on I had hoped that things were going to change. So that's really where it all started for me, Chris.
Chris: [03:29] Right. And how did it feel to be, suddenly I guess, be dependent on people like that and to have those issues?
Jenny: It was horrible because I hadn't had problems with urine when I went into hospital. And with the stroke as it was I really felt I had less control of my life, and even extended down to losing control of the bladder and that was horrible. I hated that.
Chris: [03:52] But I understand though that you did get some help. Who was able to help you with the incontinence?
Jenny: Well, first off, I went to my GP and talked to him and he ordered a ultrasound. And with that ultrasound I had to do a test of liquid in and fluid out just to be sure, urine out, to make sure that the bladder was working properly, which it was doing. It was emptying properly. So that meant it was just, all for me, all pure muscle damage really, from the stroke.
Chris: [04:27] Did that also help you to really understand what was happening, having the ultrasound?
Jenny: Yes. Yes it did. It did help me. And from then my GP suggested I see an incontinence nurse and she was tremendous. She gave me hope and enormous help and worked out a management plan for me, which really, really, really helped. Number one was cut right back on caffeine, she explained that caffeine irritates the bladder. Now for me, tea seems to be worse than a coffee, so I've cut that back to after half past three in the afternoon, I don't have caffeine. And if I have caffeine for my evening meal, oh goodness me, I'm up three or four times during the night. Whereas with the cutback on the caffeine I'm only up once.
Chris: [05:25] Did you have any exercises to do as well?
Jenny: Yes, she checked out whether I could do the pelvic floor exercise. I can't get on the floor of course, but you can do sitting in a chair or lying on the bed or sitting on the bed. I must admit, I'm not always that good remembering them every day, but I am aware of them. With the result that managing the problem is much, much easier for me now. She also, the nurse talked to me about medications available, and which you really have to talk to your GP about for those, they're not over-the-counter stuff. I do use them when I go out for the day or anywhere, because it usually gives me about, I only take a very small amount, but it gives me about three hours of not having to think about finding the disabled toilet that I need. So that makes going out socially so much easier.
Chris: [06:29] Fantastic. Yeah, I mean it is six years down the track now. How does it feel now? Are you a lot happier with it?
Jenny: It has improved, yes. Because I don't think, personally, it'll ever go away. But it has improved, and my neurologist told me that with time after the stroke it would improve. At the time I thought that's not going to be possible, but it has improved. Absolutely, there's no doubt about that.
Chris: [06:55] Great. So what other advice then would you give people who are dealing with incontinence after a stroke?
Jenny: Seek some help. Number one is don't try and just manage it on your own, seek some help and understand that you're not to blame for this. You haven't done anything bad. It's just all stroke stuff. They need to talk to a GP then he can explain all that. But I would say definitely go to see an incontinence nurse, because they've also got some written information that you can take away with you if you go for a face-to-face visit. Or they know, those nurses do visit at home if it's impossible to get out. The other main thing I think is to be able talk to someone, because it is a delicate subject and until you, Chris, asked me to do this podcast, I myself hadn't spoken to a lot of people. I talked to my husband, knew about it of course, and my GP and the nurses I saw, and my physio, because he's also helped me with some extra exercises.
Chris: [08:09] Well, we're very grateful that you agreed to speak to us today and yeah, thank you very much for talking to us. It's a pleasure as always.
Jenny: Thank you Chris, and I'll continue to listen to the rest of the podcast.
Chris: That was stroke survivor Jenny Ferrier.
Announcer: [08:25] In your stroke recovery, the answers you need are not always there when you need them, but you can always go online to the EnableMe website and ask the health professionals at StrokeLine. You might notice some changes and not be sure if you should get them checked out. You can ask on EnableMe. Perhaps you feel your progress has plateaued and you need some help setting new goals to keep going forward. You can ask on EnableMe. We're not here to replace your doctor, but we will give you the latest evidence-based information to help you live well after stroke. And you can also hear from other people in Australia's stroke community, who might have similar experiences. You can ask a question on the EnableMe website, that's enableme.org.au, by clicking on the 'Ask a health professional' link on the home page, or call StrokeLine on 1800 787 653.
Chris: [09:15] And now joining us in the studio we have Sue Blinman. Sue is a continence nurse herself, and she is the manager of the nurse advisor helpline at the Continence Foundation of Australia. Sue, thanks for coming in.
Sue: My pleasure. It's an absolute pleasure and privilege to be here. Thank you
Chris: And also again with us is Simone Russell, an occupational therapist who can be heard on the Stroke Foundation's StrokeLine, as well as frequently on this very podcast. Simone, good to have you here again.
Simone: Thanks Chris. Always a joy and a pleasure.
Chris: [09:43] Now Sue, I guess the first question we have to ask is, what causes incontinence after a stroke?
Sue: A couple of things. Because stroke is a neurological condition as you know, the nerve pathways to and from the brain can be affected, so therefore it can affect the signals either to empty the bladder, or the signals to try and inhibit the bladder. The other issue as has been spoken about is restriction in mobility. That's a big, big one, post stroke. And so yeah, that's probably the two main causes.
Chris: [10:39] Okay, so there are different kinds of incontinence then, it's not just one thing?
Sue: Absolutely. There's different types of incontinence. And that's where you need to have your incontinence looked at, no matter if you've had a stroke or not. With incontinence, there is a reason behind it. It's not just because we're old or we've had a fall, or we've done this and we've done that.
The types of incontinence, and particularly in in stroke survivors, is overactive bladder. It can cause the bladder to become a little bit irritable and therefore it's hard to suppress the urges and get to the toilet on time.
Chris: [11:23] Okay. Is that what, when people talk about having a weak bladder, is that the same kind of thing?
Sue: Yeah. Yeah. There's no such thing as really a "weak bladder". It's more weak pelvic floor muscles...
Chris: Right, okay.
Sue: ...more than the bladder. The bladder is a muscle, like your arms and your legs. It is a muscle that contracts and expands and works like a normal muscle. It works on slow-twitch fibres and fast-twitch fibres. So we need to work both of those different muscle fibres, and we do that with the pelvic floor muscles, which are our hold-on muscles.
Chris: [12:07] Okay, well look, I'm sure we'll get onto that a bit more, but first of all I want to bring Simone in. Simone now, you talk to people on the StrokeLine. I'm sure this is not necessarily a topic that people want to talk about. Do we have an idea how common incontinence is after a stroke?
Simone: Yeah, we do get some inquiries on the helpline. I would say that they often come in addition to some other, perhaps, challenges or questions that they might bring on the phone. But we do know from our Rehabilitation Audit data that it's around 41% at our last audit that reported there was an issue with incontinence during their rehabilitation stay. And there's other studies that have suggested around 50%, so I think somewhere between 40 and 50% seems to be realistic.
But yeah, that doesn't really specify whether someone's experiencing incontinence prior to their stroke. But it certainly gives us a good picture of how big an issue it can be for stroke survivors regardless of when the onset is. But yeah, it can be a significant challenge for people. And I think as Jenny's mentioned, it can be something that's extremely difficult for people to raise. It can be quite distressing for people and a lot of people may keep it to themselves, they might feel vulnerable, or perhaps embarrassed or even ashamed of of the problem. So it is something we do need to make people more aware of and encourage people to seek further support, because as we've already heard, and I'm sure we'll hear some more from Sue, there's a lot that can be done to manage it.
Chris: [13:39] Yeah. Now it's interesting that it is so high in, I guess, people when they are having their hospital stay, and it sounds like it does drop off a bit after people leave hospital. Sue, is that something that it does get better itself over time?
Sue: It can. It definitely does, because people's mobility improves with therapy, with treatment, if they've got what we call a functional component to their incontinence. The other thing is, people may have had a weakened pelvic floor prior to having the stroke and then it's brought to their attention that you know, their pelvic floor muscles aren't as good as what they could be, and they do embark on a pelvic floor rehabilitation program at that same time. Pelvic floor muscles are a very simple thing to do. Once you know which muscles you're working, that's the trick to it, which wmuscles you have to work. So once you know you're doing the the correct, using the correct muscles, then people can go along and do their own program and, you know, anywhere up to three times a day is the ideal while you're trying to retrain the pelvic floor muscles and retrain the bladder and bowel.
Chris: [14:57] Okay. Is it possible for you to, I guess, tell us a bit more about what those exercises are? I know we're on the radio so it's a bit...
Sue: I know it is a bit hard. That's okay. Yes, so the muscles we're looking at... I'll start with a man, 'cause it's a little bit more visual with a man. Okay? With a man, if you're using the correct muscles, the pelvic floor muscles, then you will get a scrotal lift and you'll get some penile movement. Okay? It's when you hold back, if you've got to hold back wind. I always say like you know, if the Queen's coming in the room, you'll hold back your wind. Okay? And if you can't do that, if you do let one rip, then you're incontinent. Okay? So even if you're incontinent with wind, it's classed as incontinence.
Chris: So it's the same muscles involved, really?
Sue: Absolutely. Bladder and bowel are the same muscles, they do form part of what we call sphincters or bladder taps, and anal sphincter or the bowel tap.
Yes. So with the ladies, what we're doing is holding up and... It's very hard to do it with the girls. It's sort of like when you're holding back wind once again and you've got to, you don't use your leg muscles or your buttock muscles, you use your lower abdominal muscles. But that's it. So it's not, you know, crossing your legs and doing everything like that. It's more internal muscles. That's why it's a little bit... It is good to have advice on how to do the exercises properly, because it's been shown in previous studies that around about 30% of people will do them incorrectly and will actually, can make things worse by doing them incorrectly. And that's pushing down instead of pulling up.
Chris: Okay. But they have been shown to work when they're done correctly?
Sue: Absolutely. Yes, yes. They do work very, very well, and they're our hold-on muscles.
Chris: [17:09] What other things are there, for incontinence, like Jenny mentioned medications? Is that like one of the things that can be considered?
Sue: Absolutely, yes.
It's a good idea. You know, you need to see your GP, and good on Jenny for seeing her GP first, I think that: 100%. You know, I hear that all the time, you know, on the phones, "And so who've you told about this problem?" "No one." "But your GP?" "Oh no, couldn't possibly tell them, that would be, ooh no, no." But you know, you've got to think about it, it's one in four people, so we're looking at nearly 6 million people in Australia that have an incontinence problem. So that's a lot of people within our society.
Chris: [17:52] And how about changes to food and drink? Is that sort of something else that would be recommended?
Sue: Absolutely. A healthy, a normal healthy diet, fluid intake. A lot of people think, "Oh, if I don't drink, I won't have to go to the toilet." Well no, that's incorrect, because if you're not drinking enough, the bladder will become irritated with very concentrated urine, so it'll go more often. So it sort of counteracts that theory, if I don't drink I won't have to go. You still have to go, so you're better off, I always say to people, "Look, let's get your drinks right sorted first." Yes definitely, as Jenny said, caffeine has been her problem. You know, for some people caffeine is not an issue and if it's not an issue, well I say have tea, coffee, if it's not an issue for you. We do tend to also say non-fizzy drinks, mainly the caffeinated coke, Coca Cola, those sort of drinks, because they have a high caffeine content. And also these days sports drinks actually have a high caffeine content too, so people think I'll just go and have a sports drink, but that's got a lot of caffeine in it as well,
Announcer: [19:15] If you're a family member or friend of someone that has had a stroke, you know that it's just the start of a long journey to reclaim their life. As one of Australia's biggest killers and the leading cause of adult disability, we still have a long way to go until we can say we have beaten it. At the Stroke Foundation, we draw our inspiration from the determination and persistence of stroke survivors, and that's why we work every day to prevent, treat and beat stroke. There are many ways you can join us to fight stroke, including volunteering your time, telling your story for us to share with the media, speaking up and approaching your local member of parliament with our advocacy team, getting your workplace or community group behind an event like National Stroke Week or Stride4Stroke, running a fundraiser, donating or leaving a lasting gift in your will, or just by sharing the F.A.S.T. message with the people around you, so all Australians will know how to recognise a stroke and act F.A.S.T. Join the Fight Stroke team. Find out more at strokefoundation.org.au.
Chris: [20:15] Now are there other things that might need to be done if, as we discussed, someone has problems with movement or mobility? Is this, I think that's what you call functional incontinence, is that correct?
Chris: Yep. Are there other kinds of measures that might be needed to be put in place around the way they arrange things in their house?
Sue: Yeah, absolutely. Sometimes it's a lot better to bring the toilet to the person. And this can go across the age range, because sometimes it's too far for that person. And even if they've got an ensuite, that 10 steps to the ensuite is like 10 miles to an ensuite, so you're better off to bring the toilet and have a commode chair. And I know there's a bit of a connotation, they have a bad rap in the community, commode chairs. I think Simone will go, "Yes, absolutely!" They do have a bad rap and I used to, when I was in clinic, I would purposely put people on this chair that had a cover over it. And if they didn't like the commode chair idea, I'd say, "Well actually you're sitting on one now."
"What, what?" And I'd show them, "Oh, is that what it is?" It's just people have in their minds, commode chairs these days are very different. They're very, you know, they're much nicer. It's not the old wicker, cane wicker chairs that grandma or great-grandma used to have, you know, that still smelled of urine.
Chris: [21:50] Okay, now Simone, Sue did bring you up there about attitudes to chairs. But some of these things I suppose can be... Equipment like that can be quite expensive, I imagine, if people are going to require that. Is there help for people to pay for those sort of things?
Simone: Yeah look, in most cases there are schemes available for equipment, and particularly in terms of continence aids as well. So it really depends on the individual, but there is the Continence Aids Payment Scheme, there's also the NDIS or the National Disability Insurance Scheme, or Department of Veterans Affairs too, depending on the individual and what funding might be applicable. And Sue feel free to join in if there's anything extra that you want to add.
Sue: Yes, within various states, there's also state-funded programs. There's the Medical Aids Subsidy Scheme in Queensland. There's the Enable[NSW] program in New South Wales. In Victoria, we have the State-wide Equipment Program. In Tasmania they have the, it's now called TasEquip – I found out yesterday they've changed their name. And in Western Australia they have the Continence Management assistance program. In South Australia they have it for equipment but not for continence products. And in the Northern Territory they have a program to which, I'm sorry it's just gone off the top of my head, I can't remember what that program was.
Chris: [23:10] We won't hold that against you. So when we're talking about continence aids – this is a question I guess for both of you – what kind of things, apart from commode chairs, what other kind of aids might there be?
Sue: Okay, so there's lots of different aids, whether you're a male or a female, whether you want disposable or washable products. So disposable products are probably the things that are very readily available within our supermarkets, within our pharmacies. They are costly, and I do advise people to get the assistance of a continence nurse, or to phone the National Continence Helpline for advice on which products would be best for the person.
We do get a lot of people ringing up, "I just, you know, come out of hospital, Mum's come out of hospital, I need to know what sort of pad to get, because on the supermarket shelf, I don't know which one." And it does depend on the person. It depends on their mobility, on their functional capacity. Particularly, you know you might want to replicate them with their underpants, so a pull-on pad might be best. It might be one that sticks on their underwear is a better option. For men, you can use anything from a small stick-on pad that goes into the underwear, through to a urinary sheath that goes over the penis and attaches to drainage bags. The other products that are available are washable products, so washable that actually wick the urine away. They are quite cost-effective. They do work, but usually for mild to moderate incontinence.
And there's also washable bedding products too. There's lots and lots on the market. The best thing that I ever found was a waterproof doona and waterproof pillows. Oh, it's the best thing. My son, I had a disabled child and when my continence nurse came out to us to do a home visit, I just kissed her. I said, "Oh my gosh, that's just so wonderful." You know, a waterproof doona, I didn't know they were around either. So we all learn, and that was many, many years ago, and a lot of people still today go, "What? Waterproof doonas?" And they do work. Yes.
Chris: It's pretty surprising, yeah.
Sue: Oh yeah, they're... I would say, if you have a baby, get a waterproof doona for a present, because believe me, you'll appreciate it in the middle of the night.
Chris: [25:51] Now, we have obviously talked a lot about urine and bladders, but the number two of course issue is bowel. Are the issues there different? I mean, you mentioned it's the same muscles, but is there other things that need to be addressed in terms of bowel incontinence?
Sue: Absolutely. I think that the main issue with bowel would be constipation. Okay? A lot of people think that they've got diarrhoea, or they've got a bowel-tummy upset and, sometimes it can be, or quite often it's related to constipation. So if you at all, you have any bowel incontinence, go to the GP, get an assessment done, even get a bowel ultrasound or a bowel X-ray to see what's there, to see if there is constipation there. Because sometimes there can be a constipated amount there in the bowel that just oozes. And the poo just comes around it, but you're still constipated and you can go every day, but you're still constipated. So that's a big one. And I think functional incontinence as well for the bowel as well, you know, making sure that the person has the access and the time to get onto the toilet. Accessible clothing, I think is a huge one. Yes, Simone would probably agree.
Chris: [27:22] Simone, do you have anything?
Simone: Yeah look, I mean, I think when it comes to the functional incontinence, whether it's bowel or bladder, there's certainly lots of different things that we can look at for stroke survivors. And that you know, you can try out to see what works. Ranging from, you know, I think you've already touched on bedside commodes, urinal bottles, access to the bathroom, and then clothing is a big one as well. And also whether actual support is needed. So you know, support services at home might also be something that is required to help, if someone does have significant physical limitations after their stroke. But yeah, there's certainly lots of different things that can be looked at, depending on the stroke survivor and their abilities to toilet and their continence.
Chris: [28:02] Okay. Now, Sue you mentioned that the it is World Continence Week, which the theme is "Laugh Without Leaking." Can you tell us a bit about that?
Sue: Yes. We have the wonderful Bev Killick as our ambassador for Laugh Without Leaking, and as you said, it starts on the 17th of June, and then we're going to have seven days of World Continence Week. So Monday will be urinary incontinence. Tuesday the 18th will be poor bowel control. Wednesday will be pregnancy, pelvic floor and prolapse. That's a bit of a mouthful, isn't it? Thursday will be male incontinence and the prostate. Friday will be pelvic floor exercises and sexual fitness, and then Saturday will be ageing and incontinence,, including menopause and then Sunday will be caring for someone with incontinence. So that's the seven days of the World Continence Week. So, looking forward to it.
Chris: [29:03] Excellent, sounds like quite a week. Okay, do you have any final advice that you would give to people regarding incontinence after a stroke?
Sue: Seek advice, absolutely seek advice. It's not inevitable that people will be incontinent post-stroke, and if there is some incontinence and there was nothing beforehand, then they should be fully investigated for their problem. They can also call the National Continence Helpline. Our number is a free call number, it's 1800 33 00 66, and we're open Monday to Friday 8:00 AM to 8:00 PM.
Sue: Thank you.
Chris: [29:49] Thank you. And Simone, what are your final tips?
Simone: I think my tips really echo Sue's as well, in terms of, I guess even if you're feeling embarrassed or vulnerable to speak up, and that might be at any stage of the journey. So whether you're in the acute hospital and you've just had your stroke, or whether you're in rehabilitation or further down the track and at home, it doesn't really matter where you are in the journey. But to seek help.
You know, having that team approach is really important. And we've already touched on, you know, speaking to the doctor, getting a continence nurse assessment, talking to your physio, your occupational therapist and even the dietitian can be really helpful as well. So having all of the members of a multidisciplinary team support you and your continence plan. That there's strategies, you know, there's aids available, there's continence products available that can really help make your life easier and to help improve your quality of life after stroke. And as we've touched on as well, there's funding. So a lot of people do come to us and I'm sure Sue, similar to you, they don't actually realise that there's funding available. Sometimes they think, you know we're really struggling with the cost of products. So I think that's a really big one for people as well, to know that there is funding available, to enquire about that.
Sue: Can I just add on there with the Continence Aids Payment Scheme, if people have had a stroke and they are incontinent, it is a neurological cause for the incontinence. So therefore they are eligible for the CAPS program.
Simone: Fantastic. And also a plug obviously for StrokeLine. You know, we can also discuss continence questions and also we tend to refer on to Sue's team as well. So we work together. But for those who don't know, StrokeLine 1800 787 653, and also EnableMe is another great option to start a conversation online. You can also ask our health professionals a question there, but also talk to other stroke survivors who may have tips or provide you with some support from that peer support perspective.
Chris: [31:45] Fantastic. Well thank you very much, Sue and Simone, I hope you're feeling flushed with pride about your performance today. Now, as Simone said, if you want to speak to a health professional, you can call StrokeLine on 1800 787 653, that's 1800 STROKE, or you can ask a question through EnableMe and get a response from one of our regular health professionals and other stroke survivors.
And of course for continence issues especially, you can call the Continence Helpline, which is 1800 33 00 66, or find out more about Continence Week at laughwithoutleaking.com.au.
And if you like what you've heard today, please give us a good rating and review on Apple Podcasts or wherever you found this podcast, as it helps lift up in the search ranking so other people can find our podcast. Thanks once again to our guests Jenny Ferrier, Sue Blinman and Simone Russell.
Announcer: [32:34] That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at enableme.org.au. It's free to sign up, and you can talk with thousands of other stroke survivors, carers, and supporters. You can also suggest a topic or provide feedback on this podcast.
EnableMe has qualified health professionals from StrokeLine who can answer your questions and give evidence-based advice. The advice given here is general in nature, and you should discuss your own personal needs and circumstances with your healthcare professionals.
The music in this podcast is "Signs" by stroke survivor Antonio Iannella and his band The Lion Tamers. It's recorded at Antonio's studio, which you can find out more about at facebook.com/studiofour99. This EnableMe podcast series is produced by the Stroke Foundation in Australia, working to prevent, treat and beat stroke. See strokefoundation.org.au.