Narrator 0:00
The information provided in this podcast is not a substitute for medical advice or treatment. If you’re concerned about your health in any way, we encourage you to consult your GP.

Hannah Paterson 0:12
People don't like talking about it, but incontinence can affect anyone. You may have a friend or relative who lives with it every day, or maybe you're worried about your own incontinence. Incontinence Talks is here to make us all feel more confident about continence, hosted by former Olympian Rower and Coloplast Ambassador Pete Reed. In this episode, Pete chats to Continence Care Education Manager at Coloplast, Emma Russell about his own continence journey and together they shine a light on an issue facing many people in the UK. Continence.

Pete Reed 0:45
Hello everyone and welcome to Incontinence Talks, the podcast that's here to make us all feel more confident about continence. I'm Pete Reed and in this episode, I'll be setting the scene for what you can expect to hear through the series as well as sharing my personal journey to help me with this and I'll need a lot of help. I'll be joined by Emma Russell here who's a Continence Care Professional Education Manager from Coloplast, and the first question I've got for you is, why has Coloplast decided to make this podcast at all?

Emma Russell 1:15
Hi, thank you for having me. It's great to be here. I think it's really important for us to talk about continence because there is a loo taboo. So I think being able to have that discussion with people and have it openly I think really helps.

Pete Reed 1:31
A loo taboo, I like it. I've never heard that before, but we're talking about, so sorry if this is shocking for anybody, but you'll get used to it as we talk about more and more. We're talking about wee and poo and bladder and bowel functions and I'm really happy to be talking through my experiences with you and I'm grateful for you, given me a steer. I also wanted to ask you before we get started, what does Continence Care Professional Education Manager to Coloplast mean? What's your day to day job?

Emma Russell 2:00
So I'm a registered nurse, I specialised in Urology for 17 years and I joined Coloplast in March and my job role as Coloplast Professional Education Manager is about educating healthcare professionals. I might say HCPs later on in the podcast.

Pete Reed 2:18
So what is a health care professional? For anyone that just doesn't know and it hasn't used the NHS for decades.

Emma Russell 2:24
Healthcare professionals, nurses, physios, doctors, occupational therapists, community nurses, midwives.

Pete Reed 2:32
So thank you because it was before your time ay Coloplast when I got injured but I had some really important and intimate and sensitive and amazing experiences with Urology nurses in particular talking me through catheterisation and we'll come on to this episode and through the series. Before we do, you mentioned the word urology. So that's your bread and butter but maybe not for all of the listeners, what's urology?

Emma Russell 2:56
So Urology is the easiest way to say, is for kidneys downwards. So your kidneys, urethras, the bladder, obviously males, your genitalia, your prostate, women, obviously, just the bladder, urethra. So anything that could go wrong with that sort of system, the urinary system.

Pete Reed 3:14
I know the anatomy well now because especially over that I didn't know it before five years ago but you can become something of an expert in your injury and your change of circumstances and tippy-top of the list of areas that affect my life is urology, bladder function. We'll get to bowel function as well but the kidneys filter the blood and get rid of waste products. The urether that you mentioned is the pipe that goes from kidney to bladder. The bladder is the balloon that's a very sensitive organ that inflates during the day and deflates when you pee and it's a complex neurological system I know at the bottom of that balloon. So the neck of the balloon there's a piece of your anatomy called the bladder's sphincter which is the door to the urethra. The next thing you mentioned that's the pipe that goes. The urethra. Your pee pipe and then you get to females, you get to the exit hole and for men you get to the exit hole as well, the pee hole and this is all really important because for normal functioning people you don't just don't think about this almost ever. Just the most natural process of filling and voiding so peeing the medical word voiding and I know so much about the system now because it changed immediately for me and so I guess as we are getting started off for the listeners out there they're not in your world Emma so this is not their bread and butter. Typically around the world we don't talk about wee and poo because it's just seen as a private thing even though we all do it. It's behind closed doors, it's not brought up at the dinner table or in polite conversation. I think the reason for that is just because people aren't expecting it so the more people talk about it the more it will be normalised. It's more normal in some circles or for families than others I suppose. What's your experience on the taboos of wee and poo in your subject area?

Emma Russell 5:18
So being a nurse, well I'm not worried and scared to talk about it. Sometimes to the detriment of my family they don't like me talking about it and they tell me off sometimes but yeah people don't like talking about it. It's not glamorous, it's not something you're going to share with people which is why I say it's like a loo taboo and a lot of people go a long time without seeking help. They think it's themselves, if they think maybe they've had a baby that's why they're leaking or they're getting old and that's why they can't hold their wee as much and so they don't seek help which is really heart wrenching sometimes because people can be suffering for so long without seeking help.

Pete Reed 6:01
What other common reasons are there for people to be concerned about their urology and whether they're peeing but people will have heard about thisness?

Emma Russell 6:09
So we'll start with men if you think you're if they're getting it up at night quite a lot. That's what we call nocturia. That can sometimes be caused by an enlarged prostate and that can sometimes cause other symptoms like frequency where you have to go a lot or maybe you leak when you're trying to get to the toilet. That's called urgency and incontinence. You can also get a weak detrusor so that can be over time.

Pete Reed 6:35
Big word there Emma.

Emma Russell 6:36
Yeah, weak detrusor. That's the bladder muscle. If that becomes weak and can't actually hold urine people might leak that way. When women, when they carry babies, there will be a certain amount of pressure put on the pelvic floor so that can sometimes cause what we call stres incontinence but basically when they cough and sneeze they might leak at the time or when they're jumping on trampolines. A lot of women say, I can't jump on a trampoline anymore.

Pete Reed 7:03
Yeah or the laughing, sneezing coughing and then with a cancer diagnosis and an operation or MS are there other conditions that people will have heard of that they just wouldn't have thought would relate to bladders and bowels?

Emma Russell 7:16
Yeah, MS is a big one. Okay. Cord Equina.

Pete Reed 7:19
Yup. Cord Equina, I know what it is but for anyone that hasn't heard of Cord Equina.

Emma Russell 7:24
So that's the condition that affects the spine. That's probably the easiest way to describe it. There are also the MS. They have issues with their bladder on their bowel but they may not know that they're an issue with their MS because when they first get diagnosed they might not be aware that that's going to be an issue.

Pete Reed 7:43
The reason why I'm asking you those questions is because this isn't just a podcast for people who are disabled or old. There'll be thousands. There are thousands of people in the UK alone dealing with urological problems and continence problems and incontinence. So continence is the subjective of weeing and pooing and incontinence when that doesn't work well or doesn't function normally so there are either it could be retention or it could be voiding so spills and that's why we're talking about this really vital subject today and just shining a light. My feeling is the listeners will fall into three camps but they'll, they'll either be fully healthy and interested so leaning into something that's a bit new, having a light shone and somewhere that I haven't seen online anywhere, no one's talking about catheterisation and urology. You see a lot on stoma bags at the moment so we can talk about that but for whatever reason you see stomas a lot more than catheters. So there'll be a healthy camp who are interested and curious for all the right reasons. There'll be listeners who have incontinence problems and they'll fall into a camp. They'll be curious, maybe they'll be excited for the first time that they're seeing or validated. That's my hope that we can discuss the things in this episode and during the series that they either don't feel like they can say because of the loo taiboo's they feel like they can't say it or maybe they don't have the platform that Coloplast has given us with this podcast but there's also another group where perhaps they're a little bit worried that there's something not quite right with their urology with their bladders and bowels with their continence but they they think it might be normal. They might be too ashamed to go to their doctors. They might think nothing can be done. They might think they're just getting old and they might be a bit scared. So those are the listeners we're reaching out to.

Emma Russell 9:42
So Pete I know you're a nice guy but come on let us know all about you come on tell us a bit about your history.

Pete Reed 9:50
I think lots of people have heard my story from joining Royal Navy at 18 and then found rowing and then got three Olympic gold medals over a 12 year period and then re-join the Royal Navy but then very sadly soon after I had a life changing injury which affected my spinal cord and the latest chapter. I mean chapter two of my life is life in a wheelchair with paralysis and coping with all things continence which we're going to be talking about now as well as many other challenges but now my life is with my wife Jeanie my newborn son Freddie who's just over a year old now I'm an ambassador for Coloplast and still an honorary captain in the Royal Navy so there are many challenges but there are many wonderful moments in my life. I would love to walk again there are lots of things I miss I miss standing up hugs with my wife and as bad as that is and it is really bad it doesn't make the top five things I'd like to have back and tippy top of that list is having my bladder and bowel function back. When I was first injured you hand your body over to the medics I mean that you're in hospital you're in primary care and the first thing they do is you're stripped down your clothes are taken off they, explain that it's not just your legs that are paralyzed this is my first bit of learning that it's your your your bladder is also paralyzed so you go through this medical procedure, a surgical cleaning of your undercarriage and a nurse catheterised me for the first time with an indwelling catheter it was a yellow rubber hose that was rather larger than you might like and I was pleased that I didn't have any sensation so I couldn't feel this thing this catheter long rubber tube was pushed up inside my pee hole up the John Thomas into the bladder and all of a sudden I could see a bag next to me in the hospital bed getting filled up and then by the end of that day they're also explaining that your bowels are paralyzed and I'll butcher these terms so I'll try and get some help from you. A term called parastesis which is the

Emma Russell 11:55
Peristalsis. Yeah.

Pete Reed 11:57
Thanks I told you the yeah the the munching of your waste product down through your your small intestine large intestine around your colon out through your rectum and you know when you need to go for a poo and then and then it's easy to do it now that system's paralyzed as well that that is an autonomic nervous system process as opposed to a central nervous system so it still works with me except I don't I have flaccid muscles on a flaccid core I don't get the sensation that I need to go and sit on the loo and the nurses explain this to me and by the end of my first day in hospital I was rolled onto my side in the hospital bed in the bay with seven other people, blue curtains were drawn around the bed and the nurses are so professional you'd be so proud they're just brilliant this is their day-to-day but it wasn't my day-to-day this was running over hills with soldiers and marines the day before and fit as a flee and then suddenly I'm gripping the bed frame as the nurse explains the process, puts on a rubber glove and it's a PR check so a gloved finger in your back passage which then moves around stimulates that Peristalsis and then the smell of rubber gloves turns to the smell of a sewage treatment plant in your own hospital bed and I'm just thinking what what an earth has happened to my life it was the first day in the first door to okay the big changes here it's not just I can't swing my legs out and stand up and go about my daily routines because daily routines from that point on included how am I going to have a wee and how am I gonna have a poo and at that point I wasn't independent at all it was all on healthcare nurses caring for me like we care for baby Fred in every way it was a lot to deal with then yeah a lot to deal with a crazy start and you get a lot of information at that time for me it was a spinal cord injury but this isn't a podcast about spinal cord injury but there will be lots of people for the reasons that we've discussed already for various reasons going through a change of circumstances that affects the things, bladders and bowels which is so taboo that people don't talk about it so they get scared.

Emma Russell 14:14
So how do you feel at the start of your intermittent self-catheterisation journey?

Pete Reed 14:19
There's a learning process where for very early on I was I had a lot of resolve in thinking right how am I going to reclaim my identity from the medics so I was told at the time in medicine bad things happened very very quickly and good things take a long time they take hard work and time and dedication and diligence and so I made it I made it my aim to learn as much as I could knowing I wouldn't be in hospital forever I mean the aim is to go home the aim is to be as independent as possible and to have purpose and fulfillment and over the course of the next few weeks and months the aim was to learn from the nurses to remove the indwelling catheter the big yellow pipe that was causing problems I learned to self-catheterise so it's called intermittent self-catheterisation ISC we'll talk about that through the series but instead of having a pipe that just sits in the pee hole up the urethra into the bladder which is just and constantly draining out I went through a process of training my bladder to hold urine again which you add a valve at some point called a flip flow of valve in the in the pipe that you can turn off so your bladder fills and the bladder starts doing its job again and it's like you're constantly going through this upgrade process over time depending on how your body's responding and you'll be pleased here this as well the urology nurses in Dereford Hospital were amazing. I remember the coaching and advice I got about ISC about catheterising myself I remember the day and it is taboo you've got a complete stranger that has to form a relationship with you quickly because they're showing you with a model what ISC is all about so using a new product to push inside yourself to empty your bladder 5 or 6 times a day in that region I learned as well that I couldn't feel when I needed to go to have a wee I don't have that feedback to my brain anymore because the spinal cord is closed where it was damaged so I don't get that feedback so I'm I'm peeing every day on the clock but learning to ISC learning the right techniques, learning about the products available knowing that it's a it's a medical procedure every time hygiene is paramount because things aren't designed to go up that hole the design to come out so you don't want to be pushing dirt or bacteria in and actually if you learn this properly if you really pay attention if you're as diligent as you can be it's not a silver bullet because things can go wrong but it's a really clean and healthy process and then that's the start of my my wee journey I suppose and now it's just completely normal I pee 5 times a day through a catheter it feels normal even though it's it affects every part of my day as I need to I need to think hard about where I can use the loo the other part is the poo journey I think my body has improved a little bit neurologically since 2019 but I still need to go through that process myself every day there's something called a bowel routine everyone has a bowel routine your body behaves a certain way you know everyone knows when they need to go and sometimes sometimes people are clockwork but it's really important for me and lots of others if they've got a paralysed bowel to have a routine which really makes you think about where you stay overnight I use a product called Peristeen that Coloplast produce which is effectively it's plumbing it's an irrigation system which is it's clean and hygienic but in order to stimulate my bowel I put a catheter inside my back passage in the morning I put water ,so water gets pumped up there with with a everyone can search for Peristeen if they like or go onto the Coloplast website and look at Peristeen so I'm sure Coloplast have videos of how it works so if you're interested I won't try explain something that's very visual but that's my process every day and even that's hygiene it because it means that during the day I'm clean and empty I haven't had any spills actually back passage spills throughout my whole time in a wheelchair because I've been clean which is that's really reassuring but I know it's only a matter of time before I have some problems just down to luck or judgment or not being able to find a toilet where I can I can do that process.

Emma Russell 18:56
What do you want the listeners to get out from you sharing your experience?

Pete Reed 19:00
I don't think I can over share on this podcast I want listeners to know that I feel very empowered to talk about this stuff and and I've shared some of my experiences there are other options as well for other people maybe we can go on to talk about options of stoma bags how they work in this episode but I know we will later on as well in the series but I guess the reassuring message is and I've often thought this 2025 is a really really good time to need to use these products you know we all have slips and falls and life changing experiences they'll be up to some 10 people today having a spinal cord injury in the UK alone that will be learning about these processes and going through their own changes. There'll be people in hospital that have had diagnoses or or operations that mean they need to learn about this stuff as well and the reassuring message is there are products procedures and methods to make help and help yeah to make this part of life as easy and clean and normal as possible and the reason why I'm an ambassador for Coloplast is because you guys are amazing at this like you really care I really feel like there's a strong trajectory of technological advancements from people that really care about making this easier for people with intimate healthcare needs.

Emma Russell 20:30
Thank you so much for sharing and I think it's really good to for people to hear that you know there is there is light at the end of the tunnel when there is incontinence. You touched on your ISC journey and that's quite close to my heart I do a lot of the ISC days for healthcare professionals nurses. How were you introduced to intermittent self catheterisation? You touched on that you know they took the urethra at the urethra one out after they train the bladder with the valve but how did you come to terms how did you start being able to do it what was the initial sort of regime like?

Pete Reed 21:05
So the initial conversations really early on in hospital you don't have to have a bag a pipe coming out of you and a bag on the side of your wheelchair in my case and that's not the same for everybody but I remember the first time I heard intermittent self catheterisation and being really excited about it as well because it was exciting because it's part of me reclaiming my body it's taking a medical device that was permanent for the first I don't know a couple of weeks maybe it's removing something that was put in immediately as my life changed so I was all ears it was just listening to somebody who was telling me that I could reclaim some of my identity and independence as well because although you have that that tricky conversation with a stranger I mean they’re professional and brilliant but stranger about pushing something up inside your penis yeah and showing you how that's done they showed me on a model and then we went through the process and that's not I mean that's not a normal process but bit by bit and day by day that became routine to the point where now I don't think about it so much.

Emma Russell 22:17
I think that's really important you know when when when when you are having to do ISC or when you're that that advice is put to you that actually how am I going to how am I going to cope with this how is it going to fit into my life the psychological side of intermittent self catheterisation can take on a world of different sort of meanings to lots of people you know women who who don't go down there or I've never looked down there before and don't know they've got two holes or the men that think oh you want me to put what were and that sort of psychological impact that has but actually how it can improve their quality of life is is immense

Pete Reed 22:57
It was a game changer for me I think for lots of other people that might that and I would encourage people I think we all would to seek their medical advice from their GPs and go through the process and speak to urology consultants if they need to we're just sharing our experience and I'm sharing my my personal experience at the moment we should on that note speak about ISC so what the actual process is because effectively you go from a big rubber yellow indwelling catheter with a bag on the side of the bed that I've got a lovely photo actually that I think Jeanie won't mind me sharing of Jeanie emptying my catheter bag which is very intimate and caring and a sort of a lovely moment but I don't want that forever and she doesn't want that forever. So the transition to ISC there are lots of products available from lots of different manufacturers there have been huge advancements over decades since they were introduced because these conditions were happening to people throughout time. Historically a thousand years ago people would have just died whether it was something horrible happening in the renal system or infection or but much more recently in the last few decades catheters were invented and but they weren't single use they were put in and remove and wash and later on in this series we will talk about innovations so we'll talk about the history of the catheter there but the modern intermittent catheter is the typically one use packets that arrive that are hygienic that are sterile that are covered and sheathed that some of them have a bag on so that you can see the quantity that you're peeing the colour which is really important for some people some are just a tube that's hygienic that empties out into a loo and there are female and male versions because females have a much shorter urethra pee pipe than the men typically 3 to 4 centimetres for women because they don't have to twist and turn around prostates so that just goes straight to the bladder of the men typically between 20 and 23 centimetres for the urethra length so there's a longer pipe that twists and turns you need to position yourself well and the process is for me, I wheel up to a loo in an accessible toilet I need room to navigate ideally it needs to be clean so there's a you need to put your catheter on a shelf that somewhere clean some of the packets have sticky bits on so they can go on a wall to make these things easier they open easily for people with who have dexterity problems you need to be wash your hands before the process and make sure the area is clean open the packet carefully and not drop it I hope of course but hold this hold a pipe and I'll explain what I use at the moment but then hold the tip and the end of the urethra open so you're not getting outside to the inside and then the pipe pushes up through your urethra and this is normal to me but I recognise that it's not to all the listeners until you feel it go through the and you can I can't feel the process internally but I can feel on the pipe when it goes through the sphincter and then urine will start coming out and into the into the loo so that's my process and I will move the catheter a little bit so that there's this free flow of urine coming out until it stops. Recently this is really exciting for me it's been one flow and one stop crucially the bladder is fully empty which wasn't always the case but that's really important for people who catheterise to make sure you get all of the urine out and then you remove the catheter nice and hygienic rapid up there's often a waste bin in loos wash your hands tidy up and go about your day and it takes a little bit longer than going for a pee it doesn't feel as refreshing but that's normal routine and normal life and this is really important with modern products the more refreshing it feels the more confident you can be that you fully fully voided fully emptied your bladder I think it is important the if it takes less time that's really important as well because no one likes to be last in the loo with people waiting for them outside there's a sense of pride if you catheterise of doing the process efficiently and then getting out first that's really nice so that's my weighing process for five six times a day depending on how much fluid you intake not normal but normal for me.

Hannah Paterson 27:48
On our next episode Pete and Emma talk about the challenges faced by people living with intermittent self-catheterisation. There are lots of amazing charities that can provide focus support depending on your particular needs as well as lots of information at coloplast.co.uk Thank you for listening to Incontinence Talks and remember to consult your GP if you have any worries about your own continence.