Bladder and bowel health

(MUSIC)

Anna-Marie (0:09 - 0:32)

Welcome to the podcast series SpineCare's 40 Voices - and I'm Anna-Marie Reyes, the executive producer for this podcast series. In this podcast, you will hear 2SER's audio producer, Oscar Burns, discussing with guests the vital yet less visible topic of bowel and bladder health, in children with spinal cord injury. 

Oscar

Hello, welcome to SpineCare's 40 Voices for 40 years podcast, a podcast about childhood acquired spinal cord injury and dysfunction, produced by 2SER Radio for the SpineCare Foundation. We'll have families join us to swap tips and share their experiences on plenty of topics. I'm your host, Oscar. I'm an audio producer at the community radio station 2SER 107.3. In this episode, we talk to a highly experienced nurse consultant about how the bladder and bowel are affected by spinal cord injury, and how this can impact all aspects of health and engaging in life. We also chat with a parent of a young person who's going through the process of learning the best approach for their child. 

Joining me now on the podcast is Jodie Thompson, a pediatric nursing consultant with over 26 years of experience caring for kids with complex needs. A warm welcome to the podcast, Jodie. Thanks so much for taking the time to join us.

Jodie (1:49 - 1:55)

Thanks very much for inviting me to be part of the podcast. I'm happy to share what I know about wee and poo in spinal cord injury.

Oscar (1:55 - 2:20)

It's such a private but essential bodily function. I think that goes without saying. You know, how this works can have such a huge impact on a child's health, confidence, self-esteem, and just simply wanting to go out and do life, right? So, Jodie, can you just kick things off, explain a bit about how a spinal cord injury affects the bladder and bowel?

Jodie (2:22 - 3:34)

Sure. Well, if you think about the spinal cord injury, it really is a bunch of nerves, which is the information highway, I guess, between the brain and the bladder and the bowel. And so when we injure our spinal cord, it interrupts those messages, which can affect the way that our bowel and bladder behave. So one of the things we know that in the spinal cord, the nerves that kind of innovate our bowel and bladder sit really low down near our tailbone and in that kind of sacral area. So it means that for any children who have an injury above that level, and so if we're thinking about the spinal cord and what that looks like and things, we do have the segments and things in our neck, which are the cervical. We've got eight cervical, 12 thoracic, five lumbar vertebrae, and then down into our sacral.

So it's right down the bottom of our spine. So any injuries are set above that level of bowel and bladder dysfunction. So our bowel and bladder don't behave in the way in which people's bowel and bladder would.

Oscar (3:34 - 3:46)

On that, what does a child need to do to achieve healthy bowel and bladder function? What can you do after an injury like that to continue to use the toilet in a healthy manner?

Jodie (3:47 - 4:46)

Absolutely. So for children who are unable to empty their bladders, we generally will need to use a device called a catheter at regular intervals throughout the day in order to kind of tap into the bladder to actually release a lot of the urine, because children's bladders generally don't empty well following spinal cord injury. And so we need to go and help them by emptying that out regularly throughout the day. Again, for their bowels as well, we find their bowels are much more sluggish. They don't sort of move the stool through the bowel like it would do for any person without a spinal cord injury. 

And so we need to give them some further assistance and things to help soften things, to get them into some good routines at specific times of the day to be able to empty their bowels. So for life, it just means that children are needing to incorporate some different routines to actually be able to empty their bowel and bladder throughout the day.

Oscar (4:47 - 4:55)

How hard is that, I guess, on a day-to-day basis for parents and children? Do you work with parents much in that area in helping and assisting their children?

Jodie (4:56 - 6:27)

100%. And it's a really big step for families to have to incorporate that into their already super busy day. It is quite a high burden of care initially. And then for children perhaps under the age of about seven, we start to train children to be able to do as much as they can for themselves from about the age of about seven. And for children underneath that age, they completely rely on their parents to be able to provide that care for them. And so they will be the ones that are performing often the catheterisation and assisting in things with their bowel care.

There's lots of things that they need to be kind of doing to try and incorporate into their day. But routine is the biggest thing to actually get involved early, to actually get good routines, good emptying, have certain times of the day things happen. And that's just the way that life is and kind of life gets built a little bit around that, around those times. If you think about children who are going to school, those routines also fit around their schooling activities and their after school activities, as well as all the rest of the competing pressures of everything else that happens within the family. So yes, it can be really a huge thing for families to do. But once embraced that that's the way that things are, then it's much easier and better for the long term health of the child.

Oscar (6:27 - 6:36)

As a child does get older, how do they become independent and gain those skills? Obviously, it's not an easy thing to do. Touch on that a bit, if you can, Jodie.

Jodie (6:37 - 9:02)

Absolutely. So we will generally start getting children involved earlier from the age of seven, involved actually in the process. So they will be seeing their families doing a lot of these skills. And so they'll be learning about the importance of hand washing, being able to, you know, hold the catheter. So I often, especially for those younger kids, you'll actually give them a catheter to play with, you know, for those younger years, so they can actually get a feel of the catheter. And as they get a little bit older, you're getting them to help with some of the set-up.

When mum and dad do hand washing, they do hand washing. It's all about sort of stepping them through the process and gradually as a process of conditioning is being able to give them what they need, the skills that they need to do eventually to be able to do the full technique of, you know, catheterization. So I often will use books, we show them videos, all those type of things will actually, in the lead up to them actually learning how to do it for themselves, will actually use all those strategies and practice those different skills.

But again, it just depends on the child's level of injury as to whether they actually have the hand function to be able to do that type of thing. So there's lots of different factors that will actually impact on a person's ability to be able to be independent with such tasks around their toileting. And so we need to kind of build in, you know, whether it's going to be a carer that's going to be assisting them in the longer term with their toileting or once the kind of parental role transitions during those sort of years of adolescence, being able to move on from that and actually have carers assist them, I suppose is a little bit different.

So every person's level of independence will be completely reliant on their level of function. So for those children who will be independent in this task, we certainly start with that conditioning and teaching of skills very early in the piece of when they start doing catheterization. So it's a very familiar and comfortable procedure and getting like a really good trusted team of people that also assist them in different environments, say for example at school or any other sort of outside activities and if the parent isn't with them, for them to be able to do that. So yeah.

Oscar (9:03 - 9:14)

Yeah, amazing. And just to go back a bit, Jodie, you were talking about those routines and how important they are, but what are some of the risks for people if those routines aren't embraced?

Jodie (9:14 - 10:46)

So the children who have families that are very supportive of getting into those routines find that their health is actually managed quite well. So if we're not, say for example, doing regular catheterization to empty their bladders, children can be more susceptible to retaining urine, which can then lead to repeated infections. Those infections that can sit within the bladder can actually travel up to the kidneys and you can get long-term kidney damage and that can lead to things like septicemia and they can make you very unwell and be admitted to hospital. It is not great for long-term kidney health. 

And again, for the bowels as well, if you're not compliant and being able to kind of do these routines like every day, that can lead to things like constipation and impaction of their bowels, which can stretch your bowel to make it less effective than it already kind of is in the longer term. And you can actually get very sick as well from that. So as part of everyday routines, because your body is kind of not acting in the way that it should technically be doing, you need to give that extra support to support those bodily functions for you to actually be able to carry on. And this just becomes part of your everyday life in order to keep you healthy.

Oscar (10:47 - 10:59)

Right, of course. And just to finish, Jodie, for those families, you know, that you've walked through the whole process and have come out the other side, what is some feedback that has truly stuck in your mind?

Jodie (10:59 - 12:41)

Yeah, I've got one of my families whose teenage young person had said to me, you know, very reluctant, was very apprehensive about wanting to learn to do catheters. And she was kind of a bit borderline as to, you know, whether she needed to have them done or not. And one of the things that she went through several years of kind of resisting doing it. And when she finally decided that it was time that she wanted to be dry in between catheters, you know, to maintain dryness and things during the daytime, she didn't want to have to be wearing nappies anymore. And she decided that she was at an age where it's like, you know what, now is the time that I want to start doing this. 

The next time I saw her back in clinic, she was like, why did I wait so long to do this? This was one of, I don't know why I was so worried about doing this. Because for me, this has now improved my life astronomically. Like, I just feel like I'm so much more in control of what, you know, what my body is doing. And I feel much healthier and happier and things are much more certain. So for her, it was a real game, I guess, of control. And she was like, why didn't I do this earlier? Like, it was really bad. But again, there was just some reluctance to do that initially, which most people face. It's not something that, you know, everyone says, great, I want to go back and, you know, and do have to do these procedures. It's not something that people want to do. It's just something that people would need to embrace in order to live a happy and healthy and long life.

Oscar (12:41 - 12:51)

Yeah, that's really inspiring. Jodie, I've got to say a big thanks for joining the podcast and shedding really interesting and important insight onto that topic. Thank you so much.

Jodie (12:52 - 12:55)

You're very welcome. Anytime. Thanks for having me.

Oscar (12:55 - 13:05)

We have joining us Clare on the podcast, mother of an 11 year old who acquired his spinal cord injury in utero from a tumor. A very warm welcome to you, Clare. Thanks for joining us.

Clare (13:06 - 13:48)

Hi, how are you going? Thanks for having me. My son was born with a spinal cord injury. So and that was quite a surprise to us. That was from a tumor. So when he was born, I did start reading a lot about, you know, what that meant for his future. And one of the obvious things was, you know, not walking, but then you soon realize there's a lot of other complications or factors that will go into his life as someone who is a wheelchair user and has a spinal cord injury. So I did know about the bladder and bowel issues. And then I had read up and kind of understood that that could be something that he would have to work with in his future.

Oscar (13:48 - 13:53)

Clare, was there a turning point at any period during this? 

Clare (13:53 - 14:53)

Yes. So in the beginning, we were quite hopeful and the doctors and nurses in the rehab team kept us quite hopeful that he might regain function in terms of his bowel bladder. And we yes. And because he was a newborn baby in nappies anyway, you know, for those first couple of years, he just until he became a toddler that would have been toilet trained that he was just wearing the nappies. And so we weren't too concerned about that at that stage. 

I guess the turning point came when any other child would have been toilet trained. And we realised that, yeah, he wasn't, because he couldn't feel what was going on. He wasn't able to control what was going on for his bladder. So, yeah, that point probably was the turning point where we started those discussions about catheterisation and, yeah, I guess, UTIs and complications that could arise if he wasn't catheterised and clearing out that bladder.

Oscar (14:54 - 14:59)

Yeah. And urodynamics, was that also something that came into play?

Clare (14:59 - 15:33)

Yeah, I'm not sure at what point it was, but he did have a couple of UTIs and so that whether which way around it was, I'm not sure, but he did that did prompt urodynamic studies to see how much he was emptying of the bladder. Yeah. So I think at that point we realized he wasn't holding very much and then it was leaking into the nappies. So that was another reason to kind of go down that track of having to focus on him learning to catheterize or me learning first in those early days.

Oscar (15:34 - 15:44)

What was that like for you? I mean, I don't think many mothers, you know, kind of think they'll have to prepare for something like that. What was the process of catheterising your child like?

Clare (15:45 - 16:42)

The nurse at the hospital was great. She taught me how to do it. I think as once, you know, you have a child with a spinal cord injury or any disability that requires some help, then you quickly learn a lot of the nursing techniques. So this was one that I realised I would have to learn. So yeah, I guess it was quite confronting having to, you know, I think, yeah, put something into the penis to empty out the urine. But at the same time, I realised that, you know, as a mother, the instinct is to help your child, of course, in whatever way you need to. So that was how I saw it is this was just what needed to be done to help him and to learn how to deal with his body, which is what we did.

Oscar (16:43 - 16:49)

Yeah. And what was it like for your husband as well? And just the family as a whole? What was the response?

Clare (16:49 - 17:56)

Yeah, I think for me, my, I guess, motherly instinct of, yeah, this is, just needs to be done. And let's get on and do it came in, I think, a bit, you know, more difficult for my husband, you know, I guess, a male-to-male thing. And, you know, having that concept of What will this feel like? And although Evander couldn't feel, I think he couldn't get past that idea in his head of how confronting that was for him. So it was quite, to be honest, it was quite hard for him to deal with that. And also other members of the family, they, yeah, I guess, initially thought, you know, spinal cord injury was to do with the inability to move your legs and walk, but for them to understand, you know, they kept asking, Will he be able to go to the toilet like anyone else?

And, you know, they kept, you know, kept asking that same question. And, you know, I think for them, it was hard for them to understand that that was another thing that Evander would have to deal with throughout his life.

Oscar (17:57 - 18:14)

Yeah. And I mean, on that, going to school, I'm sure that came with a few challenges as well, preschool and then primary school. What was it like putting the trust in others to manage what you've described there, which is obviously a very intimate procedure?

Clare (18:14 - 19:32)

Yes. So the nurses who taught me were great, and they were able to share some tips and tricks on how to do the catheterisation, which I then was able to implement myself, but then to then try and get other care workers, particularly first at the daycare centre, you know, to help him in that way. They, yeah, it was quite, I guess, something that they weren't prepared for, I found. They, you know, took Evander on and realised there'd be some hurdles to overcome. But, yeah, I was quite surprised actually about how much of a hurdle the catheterisation side of it was. They weren't trained in it.

And that was something that we kind of had to overcome at that time. And yeah, I think in the beginning, I was just going in and doing it myself for him because it was pre, you know, him getting onto NDIS or anything like that, where we had supports and being daycare, there wasn't someone within that system. We weren't into the school system as yet. So, yeah, there was a lot of learning to be done in that area.

Oscar (19:32 - 19:47)

Yeah, I can imagine. And then with Evander himself, how did you, I guess, try and instil some good tips and tricks when it came to doing it himself and little, you know, things that would help just with the process in general?

Clare (19:47 - 20:15)

So the best tips that the nurse gave me and that I used were that you could push down on the bladder just to make sure that that helped everything release. And then how far to push in the catheter was, and then also to take it out gradually so that, yeah, it was releasing everything that was in there as well. So it was, yeah, pushing it in and then, yeah, how slowly and you would take it out.

Oscar (20:15 - 20:25)

Yeah, that's amazing. And in terms of the bowels and keeping them healthy, what are some of the things that, you know, you're doing to, I guess, instill good habits with Evander?

Clare (20:26 - 22:13)

You know, with the help of the doctors and the nurses that we've got him into a routine that works for us at the moment, which is every two days rather than, you know, I guess what everyone would imagine it would be, you know, every day emptying the bowels. But we found, you know, with him that, yeah, he doesn't eat a great deal. And so there wasn't, yeah, he was sitting there on the toilet for a long time if we were trying to do it every day. And yeah, just found that his routine worked much better to do it every second day. So he would have a suppository and then, yeah, we would empty the bowels in that way. I guess after a while of using the same suppository that, I guess the body got used to it.

And then we realised that we had to also use digital stimulation to help the bowels clear or else we'd be sitting there for, you know, hours trying to wait for the body to do it itself. And yeah, I guess we're very much learning as we go in that area and talking to other parents and seeing, you know, what other methods and the doctors, of course, what is, yeah, as he's growing into a teenager now, he's 11, and his body's changing. And yeah, also, you know, what he's willing for, I guess, as he gets into a teenage years, you know, what he's willing for others to let others do for him may change as well.

Yeah, at the moment, I think because he can't feel down below, it's hard for him, you know, he kind of removes himself from what's going on there, watch an iPad or something in the distance and yeah, just kind of zone out what because it is a timely kind of process, unfortunately.

Oscar (22:13 - 22:28)

Yeah. And you mentioned just before there, Clare, I guess how important it is to have other parents to talk to, you know, you can give each other advice, what type of advice would you give to a parent who's at the early stages of this journey with their child?

Clare (22:29 - 23:26)

I found, yeah, there were different physio groups that we went to where there was some really, and that was in person that we would talk to people, the other mums that were there. So any types of therapy groups, they'd be mums that were all in the same sort of position. One of those groups where we went, they started a Facebook group where all of the mums got on there. And that really grew. And so there was a lot of questions going around there and very specific about all of this sort of thing. So yeah, I'd really encourage anyone to jump on.

So for me, that was really amazing to find other people who are going through the same thing. And particularly if there was someone who was a bit older than your child, who had been going through this prior to you, then yeah, it was great to be able to ask them how they dealt with certain situations.

Oscar (23:26 - 23:34)

Yeah, it sounds like it has a phenomenal impact on just knowing that you're not alone throughout that whole journey and you're not isolated.

Clare (23:34 - 23:57)

No, Evander has got quite into the sporting, wheelchair sports and the other mums there, yeah, you always kind of, when you're on the sidelines, have a chat to them. And yeah, the topics can be about the sports, but yeah, often they even, yeah, we all chat about this sort of stuff. Yeah, definitely amazing to have those people to chat to.

Oscar (23:57 - 24:46)

That's great, Clare. It sounds like it has such an amazing impact on you and for those other women as well and other families. It just makes you realise you're not alone in the whole journey. Thanks so much, Clare, for taking the time to join the podcast. I really appreciate it. 

Clare

Thank you.

Oscar

Excellent. Thank you. You've been listening to Spinecare's 40 Voices for 40 Years, produced by 2SER Radio. You can subscribe wherever you get your podcasts. This series was recorded in Sydney. We acknowledge the Gadigal people of the Eora Nation as the traditional owners and ongoing custodians of the land where we record this podcast. We extend our respect to the traditional owners of the lands that you and our guests join us from. I'm your host, Oscar Byrne. Thanks for your company.

Anna-Marie (24:53 - 25:36)

In this week's podcast, you just heard the voices of guests, Jodie Thompson, who has 32 years of nursing experience and dedicated much of her career in the care of children with acquired spinal cord injury at a leading tertiary children's hospital. Also guest, Clare Conroy, who has extensive experience in stakeholder management, community engagement, disability advocate and policy... speaking there with Radio 2SER's audio producer, Oscar Byrnes.

You can find out more about their expertise in the show description online. I'm executive producer Anna-Marie Reyes for this podcast series, and ending this week's podcast. See you in the next podcast.