Voiceover:
Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.
Julia Morahan:
Hello, welcome to The Raw Nerve. I’m Dr Julia Morahan, Head of Research at MS Australia, and today we have an important conversation lined up for you. Reflecting on the recent World Continence Week, which raised awareness of issues including bladder, bowel, incontinence, and mental health, we wanted to explore this area, particularly in relation to living with multiple sclerosis or MS for short. Many people with MS experience some form of bladder or bowel issues at some stage. Continence refers to the ability to control bladder or bowel function and incontinence is the loss of this control. Incontinence is a common symptom for people with MS, although the severity and longevity vary from person to person. For some people, this may be short-term with a relapse and for others the problems can be more long-term. With the right information, support and resources, incontinence can be managed effectively to maintain a healthy and active lifestyle.
We’re joined by Andrew Potter, Lived Experience Partner at MS Australia, who lives with MS. And K-J Lazarus, a specialist MS nurse, passionate about continence. Welcome, Andrew and K-J.
K-J Lazarus:
Hello and thank you for having us.
Julia Morahan:
K-J let’s start with you. For many people living with or without MS, the subject of bladder, bowel and incontinence is taboo. The elephant in the room if you like, but these issues can severely hamper people’s lives and affect their mental health as a result. Fortunately, though, there’s help at hand. So, can you tell me, what are some of the typical bladder and bowel issues people living with MS face in their day-to-day lives?
K-J Lazarus:
Thanks, Julia. It’s a very good question and like you mentioned before, continence dysfunction – incontinence – is really common in MS or multiple sclerosis, possibly more so than people appreciate and understand. And so, we see a lot of continence dysfunction both with the bladder and/or the bowel. And so, some of the common symptoms that we often see in relation to the bladder is we have overactivity or neurogenic (related to or caused by the nervous system) overactivity, and neurogenic is just referring to the cause of the dysfunction being from neurology, because of the MS. And so, people often with the bladder have symptoms of frequency, where they’re going to the toilet much more often and very frequently obviously, and urgency where they need to go, they need to go right this second out of nowhere, plus or minus nocturia where they have to get up three or more times overnight. And that can be really disruptive to sleep.
And you can see how some of these symptoms can be impactful on one’s quality of life in addition to other symptoms people may be living with…with multiple sclerosis and overall, their mental health, because of the impacts on their quality of life and sometimes leak as well. And so, it’s also important to realise that whilst continence dysfunction can be really common in MS, it might not be the only cause of it. And so, I’m really grateful for this opportunity that we can actually openly talk about wee and poo, and continence, and try and get through some of these taboos and elephants in the room, because we all wee and poo. And so, I think it’s really important that we get more comfortable talking about this, and especially in the population with MS and people living with MS, and their carers and loved ones. And in relation to their bowels, their bowels, the common thing we see is constipation.
And that…I think we’re going to touch on a little bit later why that is, but that’s the most common problem that we see with MS. But you can also have the opposite, where you have frequency and bowel frequency, and poor control as well. And there can be a different…few different reasons why you have the bladder and/or bowel dysfunction, but it’s very important to talk about. And in reflection of the recent World Continence Week, and I think we definitely fit in with what their aims were for this year around talking about it and overactivity, and trying to get on top of those, try and get rid of some of the stigma and taboos around talking about it.
Julia Morahan:
Yeah. Well, thank you so much to you, K-J, and also to Andrew for being here and talking about it. So, you talked about a few different symptoms there and a little bit about the fact that they’re neurogenic, but did you want to maybe talk a little bit more about the causes of the bladder and bowel issues in people with MS within that context?
K-J Lazarus:
Yeah, so I think too, you mentioned before that everybody’s symptoms in relation to continence may be a little bit different. And so, whilst we have very common symptoms that we see, the actual specific causes are generally similar and the same but may be different from person to person. And so, basically with neurogenic continence dysfunction, either of the bladder or bowel, the reason that there is dysfunction is because there is an alteration or poor communication of the nerve pathways due to lesions or MS lesions, or the spots that the docs talk about on your MRIs, that are on the pathway anywhere up the spinal cord through the base of the brain, through to the frontal part of the brain, and in return. It is a bit of a complex process for both bladder and bowel to work in conjunction with the nerve pathways. So, if there happens to be a little white dot or a MS lesion along the way, it can really impact on that communication and the coordination that is needed for the bladder and the bowels to work in their normal flow of way.
Julia Morahan:
Yep. Yeah, it’s very complicated, but definitely related to that damage to the nerves that happens with MS. So, K-J, as a specialist continence MS nurse, how do you help and support your patients, people you care for to manage their bladder and bowel issues? What are some of the things that you do with your management?
K-J Lazarus:
I think education’s really important. And so, whilst finding management strategies to improve each individual’s lifestyle, quality of life, mental health in relation to the actual symptoms, I think education is a good place to start…to understanding what is happening to them, is A, related to their MS. Because I do meet a lot of people who don’t appreciate the fact that their bladder and/or bowel symptoms are and could be related to the MS, or an MS symptom. I think we’re getting better at sharing that information, but I think there’s still a bit of a way to go with that. And so, I think education and also, it’s very important to have shared care and share decision-making around the assessment processes, and the strategy options that are available. And there are quite a few different strategies that are available. There’s some gold standard things, which can be quite confronting for some people.
And so, it’s a matter of understanding what is happening to your body, why you are having these types of dysfunctions, what assessments are done to understand it better, and then what the different management strategies might be for you. And they’re often, there’s a few things you can do. There’s often some lifestyle strategies that we talk about and encourage people to try to see if the impact of those. And sometimes there’s more interventional things that need the expert opinion and resources from, either urologists or gastroenterologists, or the like.
But it’s about shared care, encouraging the patients to be their own self-advocate and finding a voice, and knowing and understanding that there are things out there that can make their quality of life better, and that they can get some control back in this part of their MS symptoms, if there’s somebody suffering from bladder and bowel dysfunction. And so, whilst there are many MS symptoms that we assist as a nurse, as an MS nurse that I assist patients with in their MS journey, continence is actually one of those that we actually have pretty good strategies for… not everyone, but for most people that whilst initially can be quite confronting are actually really, really effective and can give individuals really a lot of control back of that part of their wellbeing.
Julia Morahan:
Yeah, that’s excellent. So, I think there’s a few messages there. Maybe one that people are maybe not realising that the incontinence issues are related to their MS in the first place and we really need to make people aware of that, but then also you need to speak up about it when you are seeing your doctor or your MS nurse. Absolutely, because they can’t help you with something they don’t know is happening.
K-J Lazarus:
Absolutely, absolutely.
Julia Morahan:
And then, I think the other thing is…
K-J Lazarus:
We say that a lot.
Julia Morahan:
… K-J, also, we’ll talk about some of those specific tips that you have for management in a second, but there’s lots that you can do in conjunction with your health team and your MS nurse. So, it’s in your favour to say something, because we’ll hopefully be able to do something about it.
K-J Lazarus:
Absolutely.
Julia Morahan:
So, I have a bit of a cheeky question now. Obviously, this is a serious subject and a problem for people to manage, and can be difficult, but do you and your patients sometimes see the funny side? Do you have (a) cute story for me?
K-J Lazarus:
Clearly, I’m not a very serious person. No. Whilst I appreciate that this can be, because of the taboo and the stigma that’s associated with continence conversations and continence dysfunction, it does…I appreciate that this can be a sensitive and a confronting thing, but I do tend to use a fair bit of humour, and possibly the inappropriate word here and there for all age groups of people that I have met along my journey in taking care of people in regards to their continence. But realistically, we all wee and poo, and I think sometimes having a little bit of humour sort of breaks the ice and allows for a bit more open conversation, and hopefully building a relationship, because like a lot of MS symptoms, this is not going to be something short, sweet, we are going to fix tomorrow and we’re going to move on. This is something that you need to have understanding about and where you’re at now, and potentially in the future to come back to that and circle back to that again.
And so, I think it’s really important, and I do have a tendency to use humour. I do try to do it with sensitivity. I do try to read the room and sometimes it’s not always appropriate, but I do think it’s helpful often in breaking down the barriers around embarrassment and taboos, and stigma, and who hasn’t heard a good fart joke, like let’s be honest? So, I think as much as it is serious and sensitive, I really hope that people feel more comfortable to actually approach this and take some ownership, not ownership, but direction in taking care of this part of their wellbeing.
Julia Morahan:
Yeah, great. So, I think if we had people listening along today and thinking that they have some of these issues, and symptoms, and wondering what they could try, what are some simple management strategies for the common symptoms that you would recommend?
K-J Lazarus:
So, talking up is probably one of them. I think that’s really important and that can be to your healthcare professionals. So, whether that is a nurse practitioner or your MS nurse if you’re lucky enough to have one, or your neurologist or your GP even. And I think there needs to be; we are getting better with understanding that neurogenic continence dysfunction has management strategies out there. And so, whilst back in the past a lot of people said, it’s part of your MS, it’s common, there’s not much we can do about it. There’s actually a lot of things we can do about it. And I think understanding that is really important and this is where a little bit of the…self-advocacy is really important, and because not everybody can know everything, and so just sort of following up on that, but there’s lifestyle things that people can do.
So, ensuring that even if you’re going frequently, it seems to make sense that if you drink less, because you’re peeing more may be really helpful, but actually it can make things a little bit worse, because you’re dehydrating yourself. So, if you drink more, you actually won’t really pee all that much more. But there are some certain times of day if you have a lot of, you get up a lot overnight, you might want to limit your fluids a little bit before bed, but it’s still really important to keep your fluids up. It’s important to look at your diet in relation to your bowels. What is your nutrition intake? MS can impact people in many different ways and even preparing three meals a day can be overtly difficult for some people, and so therefore that’ll impact on the diet, which can impact on the bowel as well.
And so, along with the education and looking at other areas, whether MS might be affecting people is really important to address some of those other things as well. And the lifestyle strategies. Move as much as, we’re very big advocates of exercise within your own ability, so it’s really important to keep moving as far as you can tolerate in relation to your other MS symptoms. And all of those things really help impact on the bladder and bowel, but also just talk up about it, get some advice from some people and learn about it, and figure out, learn about the strategy so it can improve that part of your wellbeing.
Julia Morahan:
Thanks, K-J. I think that’s all really helpful, sensible stuff that people can think about.
MS has many symptoms which can be variable and unpredictable, and no two people will experience exactly the same symptoms, and these symptoms can be a one-off occurrence, can come and go or change in severity over time.
Andrew, you have lived with MS for over 25 years. Managing a chronic condition like MS while leading a busy life would be challenging enough. Can you share with us some insight into your lived experience of continence issues and how you manage them, and what strategies work for you?
Andrew Potter:
I can. Thank you. Insight of mine relating to continence is multiple, given I’ve lived with MS for a very long time. The first is absolutely to demystify I suppose, and to become really aware of what is in relation to continence, what your bowel and bladder function is. It’s very normal, as K-J says, for us all, every day. And it’s interesting. It’s a challenging subject when it should just be very opaque and a very normal or regular conversation for all of us each and every day. I think that’s been one thing for myself that out of necessity, it’s become part of my everyday conversation.
How I manage? I prepare, do my research, and I plan where and how, and who I’m with, and at what time, where I am in the community, whether it’s work or leisure. I’m open about my continence challenges. Urgency for me is my every day. That’s my normal. So, I need to prepare for that. Strategies that assist me include things like having a nutritious diet and a regular diet, high level of water consumption to ensure I rehydrate every day and having a pattern, a regular pattern in my lifestyle that assists.
As has been mentioned, I exercise every day as best I can to maintain my physical capacity, which assists me as well. And I also always research where I’m going at whatever time of day, no matter what time or where, anywhere in the region I live or the state I live, or the country, I might be traveling around. I research it no matter where I’m headed, to ensure that I’ve got all the information I need, so that I can plan as best I possibly can. So, I’m meticulous about this particular subject for my own benefit. It’s my normal, it’s no big deal and as people who know me well, this is part of Andrew’s demeanor.
Julia Morahan:
This is true. So, you mentioned the planning ahead, so living with MS and continence issues, tell me about that. How much planning ahead and research do you need to do with things like visiting buildings or travelling, or transport, airports, other spaces?
Andrew Potter:
You’re going to find out a fair bit about me, Julia and K-J. For example, in any event that includes ensuring as best I can that if I need to go out in the morning I avoid or empty my bowel and bladder. That’s a regular for me. So, if I’ve got a morning meeting or if I’m going to the gym early in the morning, it’s really good to, if I get up early and go through the motions, my everyday motions quite literally, and I avoid bowel and bladder, so that I’m feeling not at risk and I’m feeling safe for access and community.
When I’m going to a meeting, I will do an assessment prior to heading to the building facility to find out where the, just so I know where the toilet facilities are, whether I’m familiar with it or not, I’ll use the app if I’m not, the public amenity app, or if I’m still a bit concerned, I’ll do surveillance of the building or find out where the accessible bathrooms might be. If I’m travelling…in a vehicle or a train, or a plane, or a tram or whatever, I’ve done the research too, to make sure I know where public facilities are and where the private facilities might be.
Also, if I’m travelling away, I make sure that I have my kit bag of goodies as well. So that might be a change of clothes, it might be toilet tissue, it might be pads, it might be wipes, it might be pull-ups if I need those, it might be additional medication if I need that to assist, it might be access to a showering facility. If I’m looking to…I think, “Oh, what happens if I do have an accident?” And they do happen, sometimes.
I may well require a shower, so I’ll make sure I do my surveillance or my research, and where I might be able to access a shower facility. Not only for my own benefit and my own dignity, but also for everyone else’s obviously. But it’s a settling influence as well. If you know what facilities are available to you, you feel more confident to access community generically. And my kids laugh about the fact…they’re adult now…that they laugh about that I know all the trees, but I also pretty much know where every public amenity is. (To) everyone’s benefit, but it certainly makes you feel safe and maintains your self-worth, I suppose too…and your dignity in that it’s an ok space to bring if you’re well-equipped and you’ve got all information that you feel comfortable having, then you can venture out and do regular things like everyone else, but it’s back to your research.
K-J Lazarus:
I think it also…with all that research too, it gives you a little bit of control on something too, that I imagine. Does that help as well?
Andrew Potter:
Absolutely. It does give me an inflated sense of control and power of self, if I’m well-equipped. And I don’t feel as insecure and I’m not as nervous of travelling or commuting or going for a meeting if I know where the facilities are and I’m in close proximity. I’ve been known to say, “I’ve got about a minute up my sleeve,” and if the planning was in place and I know I’m going to be safe, then that’s empowering for me and it’s easy. It happens sometimes, I might need to rush out of meetings, that’s regular. But that’s all good.
Julia Morahan:
Yeah. So, we talk about this a lot in Australia, but also something that we talk about a lot at MS Australia in terms of advocating for accessible public toilets and clear signage, and directions for the amenities. Do you think there has been much improvement in these things or do you think we still have a lot of work to be done?
Andrew Potter:
It’s a very different place today than it was almost 36 years ago when I was first going through a diagnosis process of MS. One very important thing…it’s talked about whereas years ago, it was more decades ago, it was not talked about. If you did talk about it, it was awkward and strange. Now it’s common discussion in my MS community, in my family. So, I think because it’s raised its level of integration into our regular conversation, it’s not such a big deal at all. And that makes it much easier.
I think facilities have improved tumultuously over the last three decades particularly, and even post-COVID they’ve improved even more, which is a positive outcome from our COVID experience not so long ago. So, it can always get better for those that need to use facilities spontaneously like myself a lot of the time, but it’s a much better place our community to be in today than it’s ever been. And facilities are increasingly becoming more accessible and that is now becoming more and more our norm, that we’ll need things to be… building facilities, including public amenities, to be holistically accessible for us all, no matter what part of community you are in.
Julia Morahan:
I know Andrew very well and I know his sense of humour, so I’m going to ask you, are you happy to share a lighthearted continence-related anecdote, but one that we can broadcast please, Andrew?
Andrew Potter:
I know it comes with conditions, thanks Julia. Yeah, I can. It’s embarrassing for me and it’s okay to share this. I wouldn’t be sharing if it were not. A couple of years ago I did a film promoting living with MS for a long time and one’s resilience. And part of that was dealing with continence challenges, and so I was with a film crew in my local community. I live in the country in Tasmania, and they were filming me as I’m going in and out of a public amenity, because we were talking about continence and urgency. And so, I was trying to demonstrate that it’s great if the public facility is open or if you can open the door, or if it’s clean, or if…so anyway, I’m going for take after take after take to do this. There was a man walking his dog and he looked at me strangely. So, I just said when I’m heading back, I said, “Oh, I’m just doing a film.” And then there was this awkward silence, and I said, “Oh, it’s for research.”
I think I meant to say resilience…so I just kept filming and he wandered off, and he just shook his head. That night with the film and it all went really quiet, it was embarrassing to talk about stuff back in the day, but I wanted to put the message out there that this is part of our normal routine, rushing to public amenities sometimes. That was it. The film crew took my wife and I out for dinner that night and we’re sitting with dinner. It was really nice though, really respectful, nice people. And we’re sitting down chatting and we looked to my left at the next table, and there was that man who was walking his dog. And he still had the same look on his face, I gave him my business card, and he went to the film…but you put yourself in the public’s space. I certainly thought that that day. Anyway… as I said, my kids know where every tree is in Tasmania, and every public amenity. It’s awful.
Julia Morahan:
That’s great. Excellent. So, they tell me, we had a guest in a previous Raw Nerve episode who lives with MS and is a keen runner, and he told us that for someone who has challenges with bowel and bladder, there is nothing more that gets the bowels moving than going for a run. So, his neurologist told him that other people (have) experienced that too and that they run with some toilet paper in their back pocket. So, as we’ve been discussing, it’s important to find the management strategies tailored to your circumstances and to keep doing the things that you love. So, we might just have a bit more of a general chat now and what I think might be helpful again for our listeners is K-J and Andrew, what are some of the typical questions you get when people are talking about continence and MS? What are the things that come up over and over again?
K-J Lazarus:
Well, for me it’s actually quite interesting, because like I was saying before, not everyone appreciates that their bladder dysfunction in particular, well their constipation is related to their MS. So, they might not actually be asking me anything…I might be asking them, bringing it to their attention in the first instance. But once we start going down the road, I think a lot of it, the questions are very personal as far as trying to understand what they’re experiencing and how that links to…what is potentially happening and what the link is to MS and understanding that and then…the things that they can do. So, I think when I talk about continence, I find it really interesting when you ask the right questions. And I think Andrew was talking about this earlier, that it’s definitely something that as MS healthcare professionals…that we are doing better now than what we used to.
I’ve been around in the MS space for quite a long time as well, and when I first started, I felt comfortable asking the questions, but I had no idea what to do with the answers that I was getting. And so, we probably weren’t asking the right questions and then directing patients in the right direction. But I think that has definitely changed in the last 10 years or so. And I know from the MS nurses that I know from around Australia and New Zealand, we are definitely doing that better. And the neurologists that I work with also, instead of just saying, “How’s your bladder?”
And the patient says, “Good.”
And then that’s ticked off for the assessment scale, they’re now asking much more specific questions. “How often do you go to the toilet during the day? Do you get up overnight? Do you have urgency?”
And so, I think when we ask those questions, we’re able to help more people, because we know what’s going on and people aren’t just saying, “Fine,” because they’ve adapted. And also appreciating that the key time of diagnosis of multiple sclerosis is in women of childbearing age. And with all the ads that have been on TV for the last 30 years or so, if you laugh and you giggle, and you leak a bit, well that’s just because you’re female and plus or minus you’ve had children. And so, to get some understanding that that’s not necessarily what’s happening to you in some of the young women that we see with multiple sclerosis and explaining that this is not that, this is something different, because stress urinary incontinence is actually quite different to neurogenic bladder problems. And so, I think a lot of it is around education and understanding, and then the questions come later, which is more to do with their own personal journey. Andrew, what do you think?
Andrew Potter:
I see a lot of people that are recently diagnosed, and their questions are usually based on some substantial levels of anxiety after having been diagnosed. And it’s things like, is this going to be like …is it going to be like this forever? Do you have this too? Will it get better, or will it increase as I age? What’s going to happen? So, all of those fear challenges come to the forefront, and I’ll see that a lot in the different peer support meetings and gatherings that I attend. And that’s quite challenging. And you see yourself years back, we’re living just that fear and that anxiety that you go through, because of this change in your body’s function.
And it may, as has been mentioned – it might stop. It might improve or it might stay the same, or you may have additional challenges. Who knows? It’s different for all of us, but it’s that fear I think that I see mostly. And albeit we’re better talking about this subject matter now than never before, if it’s new for the person, then their fear and their anxiety as well, if they’ve just been diagnosed, and that’s the one I’ll probably see the most. And the take home for me is always when I’m chatting with folk that the best thing I can do is consult with their MS specialist and neurologist, and establish a relationship with their MS nurse, because for information and advice, and support like this, those two professionals are gold in your journey, in your life. And that’s been absolutely part and parcel of my survival. And I suppose my sense of integrity and sanity in a way over the years, and sense of self-regard and self-respect, because it’s great to talk about it and to have supports, and it becomes more manageable the more information you’ve got.
Julia Morahan:
Yeah, we would definitely endorse that, Andrew, as you know. But I think that’s a really good point you made about even if maybe as a community and healthcare professionals, and other people that think about these things in the research side of things like myself, we’re getting better at talking about it and thinking about it, and aware of things. But if it’s new to you, it’s new to you, and so it must be hard. So, I think Andrew, you’re the perfect person for my next question, which is about advice for others with MS who may have continence issues, and they don’t really know where to turn and they haven’t got anyone to chat to. What would you say to them?
Andrew Potter:
Ask their neurologist firstly. Speak to the MS organisation in the state or territory that they live in and request or demand that they are put in touch with an MS nurse. Your MS nurse is going to be the key to finding out more information for you, whether it’s close by or hundreds of miles away, doesn’t matter. But get your MS nurse, phone them on the 1-800 number in their respective states or territories and use them. That’s what they’re there for. And it’s a really good space to jump into, to speak to somebody who knows what we’re talking about and can offer you guidance and support. And it takes away the stigma and the embarrassing nature of some of this stuff…the MS game. And it can be wonderful having more information and more new strategies to manage as best as possibly can, and it’s not such a big deal.
Julia Morahan:
Yeah, gold, as you said before, this is gold. This is…access it. Access it. So, K-J, so besides the National Public Toilet Map that Andrew mentioned before and the MS Australia website of course, what other resources do you recommend for people living with MS around ways to manage their continence issues?
K-J Lazarus:
Yeah, I think…I very much support what Andrew was saying, and that’s what I would encourage people who don’t maybe belong to an MS service that has readable access to either an MS nurse or a nurse practitioner, is to reach out to your local, state or territory MS support service where you live. And I know for a fact that there are very good and supportive MS nurses who are also passionate about good continence care around the country, that I get together with every now and then. And we talk about things and we’re trying to improve that part of the wellbeing of people living with MS.
And so, they’re definitely out there, so give them a call. There’s also organisations like Continence Health Australia. They also have a nurse on call, a nurse that you can call and ask questions of. They also have a website that has a lot of really good patient information sheets if you haven’t got access to a nurse directly and you just want to have a look for yourself to start with, some really good advice on the lifestyle things, some pamphlets to explain urgency and some of those other symptoms that you may experience with neurogenic continence dysfunction.
And then there’s other, if you talk to your healthcare professional, there are other resources around some funding that you can get, not just the NDIS, but there’s also, if you don’t have NDIS, that there are some other smaller areas of funding that’s available, that you can talk to your healthcare professionals about. Just reach out to your MS healthcare professionals, whether they’re nurses, nurse practitioners, neurologists, just talk to somebody, because there are strategies out there and people who really want to help. And so, please use your voice. And if you’ve got questions, ask, and it may be something really simple that we can assist with.
Julia Morahan:
Amazing. That was great. Thank you so much to our guests, Andrew and K-J, for sharing their stories, insights, and expertise on this special episode on continence, MS and helpful resources. Thank you for joining us today on The Raw Nerve. We hope this conversation has provided both knowledge and encouragement for those living with MS, and their loved ones. Until next time, thank you.
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