The Continence Challenge Podcast – A Service User’s Story

This episode hears the story of a young service user with Multiple sclerosis and their lived experience of a bladder dysfunction. In a difference to the previous service user’s story, this episode presents a service user currently in the service and explores their symptoms and what might be contributing to their bladder dysfunction. We hear the strategies the service user is implementing to re-train their bladder and what other factors might be contributing to their bladder dysfunction. This episode It is supported by evidence based knowledge and guidance from the Northern Trust Continence Service staff.

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What is The Continence Challenge Podcast – Helping You Regain Control?

A podcast from the Continence Service in the Northern Trust, providing listeners with a greater understanding of bladder and bowel dysfunction and education of what may be contributing to the problem and supportive measures which could be implemented to improve bladder and bowel difficulties. The series will give an introduction to the Continence Service and discuss common types of bladder and bowel incontinence difficulties, such as overactive bladder, stress urinary incontinence and functional incontinence. It will also look at how good bowel management can help with incontinence overall. The series will also feature service user stories and learn about the lived experience of someone with a bladder and/or bowel dysfunction.

continence challenge podcast - service user
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Welcome to the Continence Challenge Podcast. Helping you regain control. Brought to you by the Continence Advisory Service staff of the Northern Health and Social Care Trust. My name is Deirdre O'Brien. I am the Continence Nurse Coordinator for Adult Services. Today I am joined with one of my Continence Advisor colleagues, Colleen McErlean, and we have another guest speaker, and she is, um, a service user of the Continent Service who has gladly come here today to tell us her story.

So I'd just like to welcome you today and if you just want to, in your own words, tell us your story and how you came to be a service user of our service and how things are going for you. Hello, so basically I have multiple sclerosis and I was diagnosed with it a year and a half ago after a very long time of just ongoing tests and whatever and I'm 28 and a lot of my symptoms started whenever I was 18.

Basically how I came around to your service was through my MS nurse. I was having problems with like, getting an urgency to use the toilet and I was up a lot during the night I was actually up about six times a night having to pee and whatever a lot and Basically, it's like I can't get rid of my pee.

That's the nicest way to say it. Um So you feel the need to go and then when you get there nothing happens? Yeah, and then there is times that it will happen That's basically it, yeah. Do you have any time where you leak any urine at all? No, I have no problems like that. So you have no incontinence as such, but a bladder dysfunction?

Yeah. Yeah. And I think that's also useful, you know, to let our service users know that not everybody who attends our service is leaking. Yeah. You know, because sometimes there's that misconception that it's just to treat people who actually leak urine or faeces, but it's bladder and bowel dysfunctions that we will treat.

So, um, yeah. So how's things been for you then since coming to the service, or? It's actually been okay. I started a tablet, but it caused a bit of problems with my eyesight. But I'm going to get that sorted. And that's really that. So the tablet that you were put on, am I right in thinking that was to treat urgency?

Yes, it was, yes. And the idea behind that would be to try and reduce those symptoms. Urgent episodes or frequency of going to the bathroom. You mentioned you were up a lot overnight. Yeah. And ideally, the thinking would be that it would increase your bladder capacity and therefore if you had a bigger volume of urine to, to void that, um, whenever you went to the toilet, that it would aid, aid you to empty your bladder.

Mm hmm. Or sometimes, sometimes people have an urgency to go but there's actually very little in the bladder and then actually getting. The ability to pass that can be a problem, but you've stopped that tablet. Yeah. I've stopped it for now, yeah. Okay. And has your urgency symptoms, when you were on the tablet, did they, were they any, did it change them at all?

It did, yeah. They were a lot better because I wasn't up during the night and that's kind of what I wanted, more or less, because I would get very bad fatigue. So, I just sort of wanted a good night's sleep. As well. And whenever that was working and not making you get up at night did you have any better, was your bladder emptying better?

Or was it still not emptying? There was still, I could still feel a wee bit there but it just didn't seem as bad as what it was before. Now that you're off it, has the symptoms come back full force or have Have you noticed? No, the symptoms are back, yeah. They're the same as you were before? For example, last night I was up three times.

Just wanted to see. Maybe not as bad, I suppose, but it's still there, yeah. And were you given any other advice for your bladder for to maybe help that bladder emptying or with regards to the urge symptoms? Um, Like fluids and, you know, what sort of fluids are you drinking in the day? Oh, a lot of water and I was told to sort of, sort of stop at a certain time of night or in the evening time.

So obviously it would help. I wouldn't need to be up so much in the middle of night. So, um, do you remember when you visited my clinic, I would, um, I provided you with a wee leaflet and gave some information in regards to some lifestyle factors. So your fluid intake, um, so ensuring that you drink plenty of fluids, plenty of water and fluids which didn't contain sort of caffeine or things like that, evenly throughout the day.

Okay. Stop in your last fluid like two and a half hours before bed and try not to drink any more fluids from sort of tea time onwards and bladder emptying techniques. So after you've finished passing urine, sort of sitting on the toilet and, you know, rocking forwards and backwards and side to side and really trying to empty, empty the bladder and tilt the bladder in order to empty it properly.

And that's it. All those other wee lifestyle factors. We had sort of discussed the bladder re training. How did you get on with the bladder re training? Yeah, it was actually, it was actually good because I find it does help. But. And in terms of, you know, how often you're going or how, you know. No, it seems to be more to do with the often I'm going because you had said like try and watch the time.

Yes, yeah. And um, and I was actually doing that and I was saying to actually Family members of mine, you should try and do that because it would help. Yeah. And they say that actually does help. It definitely does. When you, when you, it's, it is very hard at the start, but I suppose it's setting yourself an achievable goal, isn't it?

So how, would you be adding on maybe 10 or 15 minutes each time? Yeah. Or? Cause I was trying it even yesterday just to sort of see, and I was adding on like maybe 10 minutes here and like 20 minutes here just to see what would help, and it does help, you know, because I find then. You feel like you're emptying your bladder that wee bit more.

Good, good. So, I suppose during the day, during the day have things improved a bit for you or? Things, yeah, things during the day is grand. It seems to be as I said before, it's the night time. Yeah. Do you think whenever you're going to the bathroom during the day, how frequently would you go? Oh, I could be like maybe going to the bathroom like say like now and in 10 minutes I could have to go again.

Then it could change. It could be maybe I don't have to go to the toilet for like an hour. It's just sort of like, there's no real pattern to it. It's just kind of all over the place. I think, um, and we've said it in one of the previous podcasts about, you know, when you have that urgency, um, and I know in your case you're having urgency, but you're not leaking.

Yeah. We're also concerned whether or not you're getting your bladder completely emptied. I think it's good if you can maybe, not all the time, but maybe for a few days this week, keep a bladder diary and then maybe in a couple of weeks time, do it again. Yeah. Just see, does it change? And then give it another couple of weeks just to keep that, um, to see, are you making progress?

Because when you're living in the day to day. You don't see, you don't notice changes, but keep, you know, as Colleen mentioned, maybe adding on time, um, to train your bladder to go for longer periods of time. Yeah. Might enable you to have a bigger bladder capacity and then when you do go, you know, when you extend those times in between your toilet visits, you'll have more to pass and you might get a better emptying, um, which you.

You mentioned when you were on the medication things were a bit better. Yeah. But now that you're off the medication, you're back to having to train it. There's nothing taking that urge feeling off you. Yeah. As such, now, now you have to distract yourself. Mm hmm. And try and think about something else when it comes on you.

Mm hmm. Yeah. Because the medication was dampening that feeling. Mm hmm. And allowing you to have a longer period of time, but now you have to try and do that yourself. The other thing is that, you know, whilst medication's not the first thing that we would step in with, as Colleen mentioned, all those other lifestyle advice that we give.

Yeah. Some people do need medication. Yeah. To actually get there. And in your case, you had unpleasant side effects and you've stopped it. And that quite often happens. Sometimes. We would start, get patients started on like an anticholinergic medication, and if that doesn't work for them, the pathways that we follow, the NICE guidelines pathways, would suggest if the first one doesn't work, try a second.

Yeah. If it doesn't work, try the beta-3 agonist medication, which was the one that you were on. Yeah. So potentially there is room, you know, if things don't get better for you and you can't manage it on your own, there is room to either. Try that medication again and see does that, does those side effects reoccur, or potentially try a different one.

Yeah. Most people will have some benefit from that. It's great if you don't need any medication, you know, because polypharmacy, we don't want people on lots of different things and you've already said there you have, you know, you have MS and, you know, you don't want to be on medication if you don't need to be on it.

Yeah. It's brilliant what you're doing, keep going and, you know, you're encouraging others as well, which is really good. So keep trying that bladder retraining. Um. I know you're still attending our service, so Colleen will be seeing you again and keeping an eye on a check that your bladder's not retaining, you know, because that's, that's another issue that if it was retaining, we would maybe have to talk about other interventions that would enable your bladder to empty.

We've talked with another service user and again, we've talked amongst ourselves about different types of incontinence and whilst you, um, have talked to us today about bladder, bladder symptoms. I just want to know, does your bowel impact at all on your bladder, or do you have a good bowel habit? My bowel has had a lot of different problems over the years.

Mine really started was, I was at university at the time. They didn't really know what was going on with me. And basically, I was getting this urgency having to use the toilet a lot. And that was fine. Then, there was a lot of, like, diarrhea, basically. So, I went to the GP, and basically asked, could I get this seen about?

And that was grand, got it seen, whatever. And, ended up, I paid for a colonoscopy. And, went and got that sorted. And it was, they said everything was normal. So then, I think it was about a year after that, Whenever I started to take more symptoms worse to do with my MS at this time I didn't know it was MS and only the GP said to me It seems like you have MS and you see a neurologist and then that's sort of when it all linked together and then now my bowels went a bit different over time as I said, I was running the toilet a lot with diarrhea but now it seems to be that I'm starting to get really badly constipated and And it's like you're but you're back and forward to the toilet But nothing is really happening.

Okay. So yeah. And you know sometimes, and I'm not sure if that was the case back those other years. Yeah. When you were having the diarrhea. Sometimes people can have what they think is diarrhea, but it's actually overflow. Yes, that's true. I've heard that before. It's overflow faecal matter. And it comes about.

It's coming out in liquid form but it's because there's a blockage further up of maybe faecal impaction with hard stool blocking the colon and only what can get past is the liquid stool. And maybe that diarrhea you were having all those years ago could have been due to that and maybe wasn't noticed because of that.

In preparation for your colonoscopy, you've got plenty of medication to clear you out. Oh yeah. So they wouldn't have seen an impaction as such. Yeah. But, so it's, it's common with, with MS to have a slower transit in the bowel, which means that you're higher risk of constipation. Yeah. And, um, what can happen then is a constipated, very full bowel.

Yeah. Okay. Creates pressure in your bladder. Mm hmm. And. It can cause urgency because it's pushing on it. It's a bit like, you know, you've heard, I'm sure, women, when they're carrying a baby and when they're in their, their third trimester, the baby's sitting on their bladder and they're back and forth and back and forth to the toilet.

Oh, I hear it. I have a lot of sisters. But sometimes, you know, a full bowel can put that pressure on a bladder and can cause that urgency and feeling that you need to go. But also what it can do is the tube that we have that lets the urine flow from the bladder to the toilet, is your urethra. It's a wee small tube, but sometimes if you think of it as a hose and your bowel's pushing on it, if you're pressing and creating a pressure on that hose when you go to the toilet and you're trying to release, if your bowel's creating a kink in that, Yeah, you're not able to get away.

I have actually heard that before from the doctor. Yeah, so some another thing that you maybe can do And Colleen will talk to you at clinic about that and about your diet and your fluids is maybe look at how you can Change your bowel habit. Yeah to make things and it potentially will make your bladder symptoms better as well We had discussed that.

Yeah, we had discussed that. Yeah Remember about the increase in the fibre? Yeah Making sure that, um, trying to add more, like, sort of, Weetabix, Bran flakes, things like that in for breakfast, along with fruit, and increasing your vegetables, and things like that. Maybe adding flaxseed to your cereal. Yeah. Or over your soup at lunchtime, or something like that, or your salads.

And you'll not, you'll not like all of them things, but try, try them all at a time. You know, try and see what, you know, some people can't abide flaxseed, and some people don't mind it. Try on different stuff and see what works for you, yeah, you know. I think, you know, a massive part of the bladder issues is probably coming in from the bowels.

Yeah, I was thinking that myself at one stage, yeah. Which is difficult. Yeah, it's a bit of a like, it's like a cycle. It's like one thing seems like it's not working right, then the other one doesn't seem like it's working right. And then you're very tired obviously with the fatigue then. Yeah. Which is just a bit of a vicious circle for you at the moment.

Yeah. Um, and it's just a bit unfortunate that that medication worked really well for your bladder at night time. Um, and that, unfortunately, you're just having those horrible side effects. Yeah. Um, but there are other options, so it's not, it's, um, about not losing hope either. Yeah. Keep going with all the advice I've given in clinic.

Yeah. And, um, you know, we can, we can follow up on it and, and hopefully you'll get better results. Yeah. You know, very soon. And thank you for sharing your story because, you know, we have an awful lot of, um, patients come into our service, um, with very similar stories. Everybody's individual and how we treat each one is individual too.

There will be a lot of people that will listen to this podcast, or hopefully that will be able to relate to what you've talked about. Your experiences and what you've found helped you, um, or what we've maybe encouraged you to try in the future will hopefully be useful to them as well. So thank you so much for sharing your story.

Thank you very much. Thank you for listening and I hope that you find this information useful. There will be other episodes within this podcast series, and I would encourage you to listen to them too because again, we find that patients very seldom fit into one particular box. So I would think that you would find the other episodes useful too.

So thank you very much for listening. Please provide feedback on our podcast, which can be found on the podcast summary or the Northern Trust website. Thank you.