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. Today, he talks to Samantha Cole about his own incontinence experience, the impact of UTIs and how their relationships help them through.

Pete Reed 0:41
On the subject of confidence, you just told me that some of your friends and closest friends don't know and they maybe they suspect, but you don't feel or you haven't felt so far, like you've been able to talk to them about it. But we're on a podcast, and this isn't just for me and you, it's for everybody. So why now? What makes you feel so confident to do this presumably you will message your friends and say can you give this a listen please?

Samantha Cole 1:08
Yeah, it's an interesting question because I don't know if I know the answer myself. I'm not embarrassed about it. I'm not ashamed of it, and why should I be? I don't need to carry those thoughts from childhood into now because it didn't serve me. I don't want anyone to feel the same way that I did. And if I can do something to help other people not feel that horrific sense of shame or isolation, I'll do it.

Pete Reed 1:39
So that's amazing. And selfless, it's a little bit different to my experience because I'm trying, I'm putting myself in a position of a young lady going through this in the 90s, and then as well how lucky I feel to have gone through at age 38, I think wrongly as a man, it does make a difference, but 38-year-old in 2019, 2020, 2021. The technology is very different. The internet's here. People talk about all sorts of things now, not incontinence, but I don't think. So before we have this opportunity to speak with each other on this podcast with Coloplast, I couldn't find anything out there about incontinence, whether that's blood as all bowels, so wee or poo. There's just nothing out there because it's not being said, but this, I mean this is an opportunity to talk about it. And we'll continue to do so. I feel like it's been a lot easier for me than it was for you. And part of that as well is because I'm a wheelchair user, so people can see that there's something wrong. And it's made it much easier for me to feel very open with talking about some of these things in the background, one because it's new, I think because I had an injury with a small public profile. Some people, especially rowers, knew who I was, and enough of a profile for people to run a few stories and press things. And I became the spinal stroke guy. Spinal strokes that was the injury that I had but they're very, very rare. You'll know better than I do, but apparently 1% of all strokes are in your spinal cord rather than your brain. So suddenly when spinal stroke, as a spinal cord injury, was in the press, lots of people were reaching out to me and it felt like I had a bit of a platform to talk about this stuff. And I felt comfortable doing it, but also a little bit of a sense of duty. So if I'm prepared to talk about these things, then hopefully it'll make it easier for people who are suffering in silence a little bit. And I feel like that might have been the Samantha in 1990, there'll still be a Samantha in 2025, benefiting from this conversation we're having in the stories that you're sharing. And I think that's really selfless.

Samantha Cole 3:59
I wondered, you know, I shared some of the experiences when I wet myself in public and it was very embarrassing for me. Are there any times in your past where you've sort of had a wet patch or had an embarrassing moment that you found difficult to deal with?

Pete Reed 4:16
Yeah, so they definitely are very soon after injury. I came out to meet my mate Tom and we went to a pub together in London. We were just, you know, ye-oldy, just by Trafalgar Square, I forget the name, but it's on the northeast side, and they're a step or two to get in and I was feeling full of bravado. And he helped me into this pub. Like we just did a bit of a lift and this was in a safe time to do it obviously because the pubs were open, but it was around the COVID time of things being open or not. So it's very quiet in London. And I remember we had a pint together and it was, I was new to a wheelchair. It was lovely to see him. And because it's lovely to have a pint with your mate, we had a second pint. And because it's lovely to have a second pint, wrongly, I wasn't thinking about this stuff, but I didn't need to go to the loo. I didn't feel it. So we had a third pint and just like half way down the third pint, I remember the nurses that had been saying, OK, you can't feel it, so think about your intake. And by two and a half pints, you sort of forgot about all this stuff. Anyway, just having a nice time with your buddy. And then I looked at this and thought, I probably need to go for a wee. Not at least because he had already gone and come back. So I went to the bar and said, do you have an accessible loo that I can use? And he looked at me just like shock. Sorry mate, it's the toilets down those concrete steps. Down this narrow passageway like London pubs are. So I explained to Tom. He knew that I needed to catheterise anyway, but I said, we've got to find an accessible Loo. So we dropped out of this dangerously out of this two step pub and then it was a case of where I hadn't didn't have a database. I needed to find a place to go and have a pit stop. And the hotels know that we went up and down the street a little bit and it was a long roll through town. Anyone that knows London, we got as far as St James's Park, which is a long roll away. And by that point, I'd started leaking and he doesn't know this even. But I didn't tell him, but I had a wet patch and it was starting to leak out. We did get there, not in time because I'd been leaking and I was trying to hide it with my coat a bit in my jumper. And then I did get to use the accessible loo. I did get self-catheterised four or five minutes too late. And I remember the volume that was coming out of me was scary. I mean, at the time I was using a product with a bag on it and I needed to use a second bag and it filled up to it was well over a litre. I didn't tell the nurses that but not not good and I just felt a bit ashamed really. It's not just the wet patch, but as well I know that I would be sitting in a, the wheelchair cushion would have had wee in it and I can't just get up to change. I can't stand up and I didn't have clean clothes. I guess yeah, I think I just felt dirty and embarrassed. Yeah, that was the first time that it was a tough day.

Samantha Cole 7:15
How soon after injury was that?

Pete Reed 7:18
Only a few months. I can't remember exactly when, but the earliest time I felt a bladder problem was I was still in primary care at Dereford Hospital, really trying to understand what was going on with my body. Like just a information overload from medical professionals of different areas and I had started a physio process to try and get some stimulation on my muscles and I remember being on the physio bed with and the physios she was with me. I remember violently shaking like spasming so I didn't know what that was, but my legs were shaking moving up and down. I was like completely out of control. She was a little bit worried because I couldn't lie down flat and I had a sensation not like a healthy person sensation, but I remember thinking I've just been for a pee. It can't be that. I've just catheterised. She went to get me a catheter and I couldn't get into my wheelchair because I was shaking so much. I was catheterising shaking and it was the first time I had a UTI, which I didn't know. A urinary tract infection. So I had a bladder infection going on that was brewing. That's why I didn't know what it felt like and I remember the bag of this catheter filling up with what looked like horrible sedimentary, orangey brown urine that I hadn't ever seen before. It was quite scary because this was all very new, scary anyway. And it must have been so painful, but I couldn't feel pain, it must have been so painful that I was peeing and then spasmed off the side of the bed that I was on to the hospital floor with a big old crunch. And in that process the catheter came out. So for male catheters are quite long because they've got a bit further to travel. And the catheter came out, I landed on the bag, the bag split and there was all this rank pee all over the floor and then the blue curtains that were there for privacy, they were opened up and there must have been. I wouldn't let the truth get in the way of a good story, but like six or seven people in the room, so the two physios and a nurse and a sister, and everybody was in there trying to lift a hundred kilo lump that was spasming out of a pool of pee back onto the bed. It's just, it's the first time I felt just disgusting, quite frankly, I felt rank and embarrassed and I didn't and scared and I didn't know what was going on. I know that's a learning process, but I think it's important, like so many people have been going through these things in the background and it's unsaid, and it's a really horrible time.

Samantha Cole 10:00
Sounds really difficult and so early on as well. Did you feel like a sense of loss of dignity?

Pete Reed 10:08
Yes, yeah, yeah. So a loss of dignity. The shame I suppose, I didn't need to in a hospital. It's nothing they hadn't seen before, but it's something I hadn't experienced before. And up until that point, maybe three weeks before, not only had I been able-bodied, but particularly like very able-bodied, this was a new world to me. Yeah, there was a huge loss of dignity and I think that's just in my own head. That's on me. And I don't blame people for feeling like that, but I hope that our conversations can make them reassure people that they don't need to lose their dignity every of these things, that there's a learning process and especially the very professional healthcare professionals that they're working with, they've seen it before and they're there to help. Without going on too much, there's one other one that happened more recently. So a problem I have with urology being a bit wonky and broken and catheterisation and UTIs, that space and why it's tippy top of my A list of things I'd like to have back is because I know there's always a threat of this creeping in, and when I'm feeling robust and healthy, like I am today, actually, I feel normal, I'm just sitting in a wheelchair but getting on with my day, I think that I'll never be unhealthy again as sitting here, which is absurd, because the worst part of this is that you might have to cancel and no notice, and I pride myself on being reliable. I know I've got an idea of the extent to which you've had to prepare to be here to chat to me today, it's extensive and it's it's pure chance that you didn't get a UTI and have to call this morning and say I'm really sorry, I can't come down, I can't be there and my one recently was, I'm named dropping a little bit so sorry about that and it happens quite a lot but I do get invited to some really nice places and I always hope that I can go and I always arrange this one because I'm an honoree Captain in the Royal Navy, it was the annual dinner for the honoree officers, there are 35 of us, and they're an amazing group of people. The occasion was being hosted by the First Sea Lord and the Admiralty to have a briefing about geopolitics and to have a discussion about what we've seen and the advice that we can give to the Admiralty in our areas, it was on the Isle of White, I don't think I'm breaching anything at the moment but in a really splendid place it would have been amazing, I'd already done three quarters of the leg to to be there, to travel, to rest overnight and and in the morning I started spasming and voiding and I had to call First Sea Lord and the group and say I'm sorry I can't come and that’s horrible I felt like I was missing out but I also felt dirty again and the practicalities of that are, I got three tails, folded them up, put them on my car seat and sat on the car seat voiding and dribbling, with a jumper I shoved down my trousers for an hour and a half drive back to Devon with my uniform still cleaned and pressed in the back, not going and saying I'm sorry and that's it's just tough, I hate it and I think I'll hate that for the rest of my life, just having to say no at no notice and pure chance that we can be here today without calling and saying I'm really sorry and it doesn't matter who it is, it could be the king, it could be the First Sea Lord, it could be the team from Coloplast, it could be family, love one, it's really, I hate that aspect of it

Samantha Cole 13:55
And I think it's something that's so unrecognised, you know, UTIs, urinary tract infections or such a big thing for people with a neurogenic bladder and I think because they're different to a regular UTI, it has such an impact, like you've just described, well it can do, people don't realise that and hopefully talking, sharing your story there, will help people realise it and, yeah, UTIs have been a big thing for me as well and I know what you mean about, you know, I've not had that experience or you've just shared but feeling dirty when you've got one, they've got that certain scent, you know, the urine smells really,

Pete Reed 14:38
It smells like a farm.

Samantha Cole 14:41
But yeah, I'm sorry to hear that story.

Pete Reed 14:45
It's really so, it's an aspect that's rubbish but important to share and we're talking about lifestyle here, so the loads of things I can socially, I feel really guilty if friends are meeting somewhere but I know that I can't go because there's an inaccessible toilet so then the choices are, do I not tell them and not go or do I tell them they might feel bad and everyone has to rearrange everything to accommodate me. It's a small little social thing but if we're talking about life and lifestyle these things matter, it's tough. Something that we haven't touched on yet. I wonder if you feel this as well. I call it range anxiety, right? So it's to do with having enough products, having a supply and I think at the moment this is, it's platinum standard for me now. I almost take it for granted that I have enough product and I should, I should really shouldn't because it's the alternative is very scary but the range anxiety is for those people that don't characterise who wake up, walk to a loo, have a pee wherever they want or behind a tree or whatever the situation calls for, I think and I think we can't pee without characterising so I need to make sure that if I'm safe, for example, coming to London to meet you and have a podcast, I've got enough product with me to and actually product in a half, maybe two times the amount just in case because if you don't have it, it's a hospital trip and you're having an indwelling catheter and a medical procedure. I used to get really scared that there are six boxes at home and then there are five then there are four and I'm thinking if this gets down to one box, I'm going to hospital if I run out of catheters because that's serious, you're bladder fills up, pee goes back up to your kidneys and for me that causes a condition called autonomic dysreflexia which we won't go into too much but if you're listening, can be bothered to look it up, it's a really scary potentially fatal condition that happens to some people with spinal cord injuries, so that that's terrifying. So the range anxiety is how do you get this product and make sure that you've got enough just to live, just to be at home just for the basics and that doesn't even go into the anxiety I suppose if you're going to travel overseas.

Samantha Cole 17:13
I knew exactly what you were talking about even though I've not heard that term before, so I was sitting here with a big smile on my face because yes I've got quite a lot of catheters in my bag just for an overnight stay because we don't want to run out and you might lose some or there's just this worry that you're going to be without a way to empty your bladder and then you can end up in A&E and this happened to me before, back in the day when I had that one catheter every three months, that broke because obviously it's a rubber thing and it's just perished so I had to go to A&E because my doctors wouldn't give me one and I was waiting in A&E for ages and ages with a bladder getting more and more distended, maybe it's not the best story for this podcast but they inserted a male catheter but just once, not like a long-term catheter and my bladder had so much urine in it but they wouldn't give me one to take home and I didn't have any, so luckily nowadays things are very, very different and I have more than enough product and traveling overseas. I have one of thosecabin suitcases, that's just got catheters, stoma bags, all the other additional supportive products.

Pete Reed 18:34
The one that you take with you onto the plane in your head locker is so you know when you arrive, you've got to do the same?

Samantha Cole 18:39
Yeah, I would never put it in the main hold.

Pete Reed 18:43
So let's just talk about numbers here. Let's say you pee five times a day, you can't pack five per day because it needs to be more like seven or eight or maybe even ten. There's an old Royal Marine saying two is one and one is none so always packed double. So ten per day and the male ones are slightly bigger and female because there's a bit more pipe. So this is taking up a lot of luggage space, there's no such thing as traveling light anymore. It's a lot to carry. If you're traveling, have you ever been stopped going through security if it's hand luggage because there's liquid in there?

Samantha Cole 19:19
Not because there's liquid in there but I have been stopped just for them to have a little look in my bag and it's never been an issue luckily. For anyone who's listening, who's not traveled with their catheters before or potentially stoma products as well, you do get a free cabin bag allowance. If you're on one of those airlines that don't give you a cabin bag with your medical products, your essential medical products. I just thought that was important to say.

Pete Reed 19:47
I didn't know that. I didn't know that yet. The reason why I said range anxiety. That's just a, I've stolen that phrase from people who have electric cars who don't, who get genuine anxiety that they can't get to where they're going and I found that same thing with a range of how far can I go into the next week or days because I'm running out of product here before I have to go into hospital and that was before as well I was in the Navy and the sick bay were ordering direct from the supplier and then I became aware of Colplast Charter, which is an online ordering service to select the devices and equipment that you need to healthily use the loo. I used Peristeen for bowel care and I used Luja for for emptying my bladder and Coloplast and send off for a request to your GP for a prescription and then all of the complex stuff is done in the background and you can receive a parcel, a beautiful parcel, like a rescue package the next day and or certainly within a couple of days which is so reassuring. Maybe wrongly I take this for granted now because this is the platinum standard around the world but it's so important just because I feel like one step closer to my able-bodied peers that I can go for a pee and I'll always need to and I'm grateful to Coloplast in the extreme for providing that service because it takes one bit of worry away from me. Looking ahead ten years, 20 years, 30 years, 40 years, if I get lucky, I hope that's still available and still there because it's a little bit political as well. We've got the best service and we need it as well so that we can be here and contribute and have jobs and pay taxes. Do you use Charter? Colplast Charter? Do you use that service and can you relate to the range anxiety thing?

Samantha Cole 21:48
Oh definitely it's great to be able to just order your items and then they arrive within a day or two, it's reassuring and it's another thing off your worry list. You can also order your products over the phone if that's the way you prefer all by email so I think that's nice to have the option.

Pete Reed 22:07
I'd know that. We'll finish up our conversation with some really positive things. Do you feel like your continence issues are under control now or more under control?

Samantha Cole 22:19
I'm very happy. I'm so much happier than I was certainly and I would say then 95 plus percent better than they were.

Pete Reed 22:28
That's enormous.

Samantha Cole 22:29
Which is incredible, especially going by what I said about how it does affect my self-esteem. I don't even, I don't remember how I used to go to the toilet before. This is just my norm now and like I said about the innovations coming along year by year things are just better, better and better and I just I self-catheterise five, six times a day and I don't really think about it. I'm very very rarely wet. I don't leak due to Botox and catheterisation. It's not high up there on my radar at all and if it wasn't for these products, if it wasn't for the peer support that I've been able to get, if it wasn't for being an ambassador where I get to talk to people who self-cathetise because it's quite hidden still. Not people, people don't really come out about it yet and being able to access the products I need in a timely fashion that reduces my risk of UTIs. I mean it couldn't be better at the moment. I couldn't really think of anything better at the moment and I do, I use Luja Female, I use SpeediCath with a bag attached having an operation next week where I'm having an indwelling catheter for a day while my arm is in, numb and I'm not that worried about it. I've got a solution, I've got a solution and I've got what I need.

Pete Reed 24:01
That's such an important message because you've been doing this for a long time now. I've been doing it for a fair while and it's normal jogging for me now as well. It's just normal routine, I barely think about it. It's a hygienic as swift as it can be process that doesn't affect my day-to-day with my wife and little baby son and that that's the important thing in life is just having as as much of an easy normal routine as possible.

Samantha Cole 24:30
So I suppose talking about things like relationships, partners etc. It can really have a different impact depending on what age you are when you develop certain issues and whether you're already in a relationship or not. And I think for both of us it's it's been different. For example if you're younger when you develop continence issues pre-puberty during puberty or just after puberty that adds a whole extra layer to things when you starting to get interested in having a partner, having a boyfriend , girlfriend, whatever. For me personally I definitely felt unattractive so I felt no one would want to go out with me so I didn't even bother putting the feelers out there and I imagine that some of our listeners would relate to that.

Pete Reed 25:17
I certainly can. I imagine they can as well. You know when we were talking about dignity earlier that definitely bleeds over into your relationships. And I remember very early on when I was injured I had an indwelling catheter so I didn't self-catheterise. It wasn't intermittent where I do the process myself and five times a day. It was a rather large yellow rubber tube that was indwelling while I was horizontal in a hospital bed. And I remember Jeanie my girlfriend at the time. She's now my wife, but I remember feeling helpless and vulnerable in front of her. So I was naked but with a sheet over me in a hospital bed with this pipe coming out out and a big bag of urine filling up. No valves on it. It's called a flip-flow but nothing. It was just so running out into this bag and blessed Jeanie crouching down next to it and emptying it into one of those, I guess like a little portable urinal thing that she can empty into the toilet. So she was doing my the bag on the side of the bed and I felt very, very vulnerable and she was my girlfriend and my lover and all those intimate things and now suddenly she's handling my pee. And I think before then and we, of course, were adults, we both knew that we used the toilet and we pee and poo, but it's not like we're in the room. At the time you have your private time even with your intimate partners and that was a massive change and it's the first time I'd been vulnerable around Jeanie. And it's it was hard. Yeah, really hard. And I think going through the process of learning how to self-catheterise with nurses and in hospital, I think I was very lucky to have Jeanie on board with that process as she was learning as I was learning as well. And now it's for both of us it's a normal process. Jeanie and I, we don't discuss it, we don't even think about it. I'll say I'm nipping to the loo if that's even a thing for us anymore. I feel like I can nip anywhere. But she knows I catheterise. She's seen me do it. It's not on her radar as something important but I think something important is that if I'm incapacitated for whatever reason she can catheterise me and that's, I mean, that's a reality. That can easily happen so she can catheterise me so that I'm safe, but also so that it doesn't affect our intimate relationship as well. I think there's something that it feels quite nice that when we go to sleep at night, I'm not plugged into anything and I think that's the bonus of self-catheterising is I feel like I've got my body back from the medics now. It's my own and I share it with Jeanie and I share it with Fred as well. We have a home family time and it's it's all normal. I think we've got to be grateful for the products that we have now that enable us to do that, I think, 50 years ago. If you lasted long at all, you'd have been plugged into something in hospital, felt disgusting, never have a relationship again. And then get an infection and die. Sorry. I’m talking about like years ago, you’d be in a box somewhere and 2025 it’s very very different to that. Yeah i think Jeanie’s onboard with my process and I don't feel disgusting, I just feel normal. It's not even an issue.

Samantha Cole 28:44
I was just thinking you know when you said Jeanie was emptying your catheter bag at the hospital? Yeah. That sounds like such an almost an intimate moment where of acceptance of your situation and I thought that that was just really like an act of love. It just came across that way to me.

Pete Reed 29:04
Thank you. I think you're right as well. She's a very, very empathetic person and very loving she's a natural caregiver, but it was am intimate time and so I'm not trying to cheapen that moment, but my hobby and my background is in photography and one of the things when I was horizontal in the hospital bed, one of the things I really wanted to have was a camera, not for any vulgar social media purposes but I sort of felt safe having a camera with me and so I have this beautiful photograph, it is a thing, it's a beautiful photograph of Jeanie emptying my catheter bag from my perspective, so from my pillow in a hospital bed through the sheets, through a gap in the bed and Jeanie just crouched down in the corner emptying a bag of urine into a pot to take away and that is very intimate and it's important and I don't think I've ever shared that one that my photos are for me and for Jeanie and just a visual record of what we've been through and it's special to go back through, but when we're talking about all the like the if we look at this conversation from the top down at about how your life is affected by catheterisation, this is all part of it, it's real life and some parts are raw, some parts of beautiful, some parts of romantic and loving and special and you don't want to forget and even the parts where you know we would both wish this hadn't happened to us if that was such a thing or we could rewind time and roll the dice again, but that's that's not an option so you look back sort of fondly at your experiences of what's happened, how it's happened and even back to the past, the stories that you shared from when you're a young girl, you can't change those, it's shaped who you are today, I'm sure you wouldn't change the person you are today and I wouldn't change the person I am today and the difficult experiences are all part of that and I think the hardest times from our pasts are probably the most useful for people in our futures. I want to tell you so something that mum said at the time, my late mother she she died sadly in 2023 but when I was going through this process in 2019 and 2020 I remember mum telling me that this will be really important for my and Jeanie’s relationship so she reminded me that it's the it's the first time Jeanie would have seen me vulnerable and that our roles in certain things will have to change and that will be very bonding for both of us and yeah she's proved right I think it was really important for our relationship. I'd never choose these things and a note yeah you wouldn't know no one that goes through it would but I wouldn't change what the outcomes who I am or my relationship or relationship with friends or direction careers gone I wouldn't change any of that because it's all right it's okay you'll be fine and thank you so much for sharing your experiences that help those people who are going through it right now because I think that's valuable in the extreme and shouldn't be understated or underestimated.

Samantha Cole 32:26
Thank you.

Hannah Paterson 32:28
On our next episode, Pete is talking all things bladder and bowel health with Michelle Hogan-Tricks and Emma Russell from Coloplast. There are lots of amazing charities that can provide focus support depending on your particular need 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.