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. This time, Pete is chatting to Coloplast Ambassador Samantha Cole about her life as an ISC user.

Pete Reed 0:38
Sam, it's great to see you again, it's wonderful to have you back. How does using intermittent catheters affect your lifestyle?

Samantha Cole 0:45
Well, thanks for having me back, Pete. I've lived with intermittent catheters for a very long time now, so it's almost like I don't know any different.

Pete Reed 0:54
How long? How long?

Samantha Cole 0:55
Ehm, my maths isn't great, but I'm 46 now and I started using it when I was 18, so is that?

Pete Reed 1:03
That's a lot. A lot of years now.

Samantha Cole 1:04
It's a long time, and I've gone through different catheters during that period. I've had different challenges, different successes. I would say more recently I've had quite a significant problem with my foot, which means I can't go upstairs to the toilet at home.

Pete Reed 1:20
Is that related?

Samantha Cole 1:21
Yes, okay. It relates to catheters and my bladder and things like that.

Pete Reed 1:25
So I don't know this stuff. The listeners probably won’t, do you mind explaining how?

Samantha Cole 1:29
The problem with my foot is called chronic regional pain syndrome, something related to my incomplete spinal cord injury. The reason I mention it is because I don't have a downstairs toilet at home. I can't feel when I need to empty my bladder. It's very difficult for me to get upstairs, so I've been emptying my bladder much less frequently than I should. Sometimes downstairs with a bag attached to the catheter. I've had a lot of UTIs as a result, and I've been draining over a litre each time.

Pete Reed 2:01
Goodness me.

Samantha Cole 2:01
Not great for bladder health, as I'm sure you'll agree.

Pete Reed 2:04
That's not what the urology nurses would teach you in hospital.

Samantha Cole 2:08
No, no. They'd probably advise strongly against it.

Pete Reed 2:12
So typically I've heard sort of four, five hundred ml, six hundred sort of max. Are you emptying a litre?

Samantha Cole 2:19
So, so not great, and I suppose I mentioned this because over the years my needs for ISC have changed, and it kind of varies according to the rest of my health. How they affect my lifestyle, I always have to know where the toilets are, wherever I go. Trains are difficult for me at the moment, but if I would absolutely avoid going to the long train, whatsoever, because I've seen the train doors open without them needing to be open and someone being exposed, and if you're sticking a tube inside your urethra, that's a bit embarrassing. I wouldn't want that to happen on a daily basis.

Pete Reed 3:00
So I do medical things and non medical, so urethra we both know, but it's your pee pipe.

Samantha Cole 3:07
It's your pee pipe, it's where you place the catheter to drain the urine out of your bladder. So those are things that I worry about a bit, where the nearest toilet is.

Pete Reed 3:18
I totally relate to that. So I've built up like a database of the familiar places that I go of where I can go to the loo, and pretty much my whole day is going to go, what am I drinking, when do I need to go? I can't feel it either, so I'm sort of going on the clock and kind of what I'm drinking, but it's a real concern. I learnt the hard way, more recently than you I think, because my injury was in 2019 when I was 38, but did you learn this the hard way when you started to self-catheterise? Is there a horror story somewhere about when you just, this has gone wrong? I can't get to a loo, and what happened? Pre and post op as well.

Samantha Cole 3:59
I've suffered with urinary incontinence since the age of 11, so not able to control urine flowing out of my bladder with no voluntary control, and that's until the age of 30 when I started having Botox injections. So it's not completely cured me, and sometimes I still do wet myself. And I would say the fuller my bladder is the more at risk I am of having an accident. So if I am somewhere, no toilets nearby that I've clocked, that's a concern.

Pete Reed 4:29
There was a pre-operation part of your life, where you were incontinent, and so there's more of a free flow where the concern was wearing something to a pad or and post-op. effectively the door was closed, so I'm butchering this, but can you explain?

Samantha Cole 4:48
Yeah, it wasn't quite like that. Bladders are very complicated, as I'm sure everyone knows, and so are spinal cord injuries, and they all affect people differently, and you can get various types of neurogenic bladder. So disturbance your bladder due to a disrupted nervous system. And for me, age 11 my first symptom was I wet myself, and we didn't know why, and then I lost the use of my legs. Then I had an operation, and I was still wetting myself, but I couldn't voluntarily go to the toilet. And so I was on medication which made my mouth very dry. And until I was 18, I was still incontinent all the time.

Pete Reed 5:33
So that so that period of your life from 11 to 18 is like the taps left on a little bit?

Samantha Cole 5:38
Yeah, and it was still left on after I had the small urethral procedure. They injected a bulking agent around my water pipe. Then I was fully in retention. As that wore off, I was incontinent again, until I had Botox at 30. So it's a bit of a long sort of convoluted history of my bladder, but so I've experienced both retention and incontinence.

Pete Reed 6:05
So stop if I'm getting this wrong, but it's important to say how complex the neurological process of peeing is, because there's a urethra, which is your pee pipe. We've discussed that already. That leads up. So from where the pee exits, it's your body. Different on men and women, but everyone knows where that is. At the end of the urethra, there's a part of your anatomy called a bladder sphincter, which is the door that leads into the bladder. And the bladder is like a balloon, that is, when you're fully emptied, it's a balloon that's like a crushed balloon, just floppy and nothing in it, and then during the course of the day over a period of one, two, three, four hours, it fills up with pee. And that comes down from a different pipe from your kidneys after it's been filtered to the point where the balloon is so full, sending the signals to your brain to I need to go to the loo. And those processes are neurologically complex because one of the muscles needs to contract to close the door and stop pee coming out. And another set of muscles need to be relaxed so that they, so the bladder can expand. And then a signal needs to be sent and you to hear it. If you've had a spinal cord injury or a few other complications with your urology, then these messages don't get sent. So the sensation of being full and the ability to release, to open the trap door, the ability to squeeze to pee, to void the bladder, to empty the bladder, which can lead to so many complications, and the bladder as well is a very delicate organ in a fine balance because you've got a waste product with very delicate membranes in that area. So my understanding of your operation, we got there in the end, is that what they were doing is artificially closing the door around your urethra. But that's not as effective as a healthy person's sphincter. So there was, although in some parts you needed to open the door artificially with a catheter and because it wasn't as strong, sometimes you would void so a little bit of pee would come out. Is that about right for that chapter of your life?

Samantha Cole 8:19
Yeah, yeah. I suppose the only thing I would add is that some types of neurodegenerate bladder are overactive, so your bladder is just doing that all the time, or every second.

Pete Reed 8:30
What, what's that because we're a podcast?

Samantha Cole 8:32
Sorry. I'm squeezing the air.

Pete Reed 8:34
Sort of spasms around the balloon.

Samantha Cole 8:36
So your bladder is just sort of fibrillating a little bit.

Pete Reed 8:40
Yeah. Yeah.

Samantha Cole 8:41
And that can cause incontinence. So some people have a flaccid bladder, some people have a spastic bladder, and it can depend on what level you're injuries at. Flaccid like a floppy balloon. Like a floppy balloon, you can't tell it to your contract at all, and a spastic one where it's contracting, all the sphincter is contracting and you can't go past that. So there can be a real combination of these things, and it's difficult to manage and it's all an individual thing.

Pete Reed 9:10
That's what makes this complex as well, because it's all individual, the injury, the reasons why, what happens afterwards. I think we're in agreement that it affects every part of your life. If you're planning on where your next going to have a pee and do that safely, and not only when you're out and about, or on trains or in, or traveling, whether that's in the UK or otherwise, but also at home, if you're home to not quite set up, it affects every part of life. And I, for me, lots of people see the wheelchair, and so they know I'm disabled, and we'll get onto that, and a second, the difference between me and you there, because you walk, you've got a spinal cord injury, people make assumptions. But for me, typically, if anybody mentions it, they, friends might say, "How's rehab going? Are you walking yet?" There's any more strength in your legs. People in the public say, "How are you getting on? Must be hard being in a wheelchair. It's so common to be judged and just look like my legs don't work, but legs not working probably doesn't make the top five of the things I'd like to have back after spinal cord injury, and tippy top of that list is a bladder function. You've got the same tippy top of the a list problem that I've got, but nobody knows. So how does that affect how you behave with colleagues at work, for example?

Samantha Cole 10:30
Yeah, so I was working as a GP trainee, so GP registrar, and that takes a lot of training to get to that point, even. I knew I wanted to be a doctor from the age of 11 when I had my own operation, and I was very determined to get there, despite all my struggles, and I mentioned in the previous podcast, my self-esteem was massively damaged by incontinence. I wanted to be a surgeon, and I had to rule that out quite early on because you can't be taking your scrubs off, taking all your sterile gear off to go self-catheterise, come back, start again. Your patient's waiting under anesthetic. I realised that's not going to happen, and also I could not possibly stand for the length of period. I know there are doctors who are wheelchair users, in fact, and I'm not sure if you know... Dr Mo? Yeah, who operates from a wheelchair, urologist, so fantastic, but at that point, it wasn't an option for me, and so I had to start tailing my potential career prospects, guided by what my body was doing and what it would allow me to do. I have always been quite closed in the fact that I self-catheterised. I never thought anyone would be really interested and I was quite embarrassed about that incontinence, so I just tried to avoid it at all costs. And I'm not working at present, I've had to retire on health grounds, due to several other things that I've been going on. I do have a lot of health related issues due to my spinal cord injury, but also what I call regular person problems that are required along the way, and unfortunately it led to me not being able to work.

Pete Reed 12:24
How's your self-esteem now?

Samantha Cole 12:25
It's improving, and I think Coloplast has had a lot to do with that, to be honest with you, because I have a stoma as well, and I've done a lot of work with the stoma side. Given quite a few talks, done a few podcasts, being around people who have similar issues to me and realised we're all just getting on with our lives, we just happen to have, we happen to share an unfortunate experience that actually these products make it possible for us to live our lives as best as possible. Yeah, I think having to retire at the age of 46 is difficult, and I think we discussed this previously, your whole identity is made up of your career sometimes, especially in certain professions. But I would probably say, I've never been a very confident person, but I am probably the most confident I've ever been.

Pete Reed 13:21
Well, I can really relate to everything you're saying. I'm glad it's so selfishly now. I'm glad that someone else gets it and understands, and I know that if I'm listening to you with some relief, thinking, 'Oh, thank goodness Samantha gets it and understands', then there will be lots of listeners that do as well and also feel empowered. We'll talk about products in a second, but just sharing, it feels like your journey into medicine was similar to my journey through the Royal Navy. I haven't mentioned it yet, but I was a former naval officer and an elite athlete in that programme. So I spent a lot of time rowing, and I went to the Olympic Games and over 12 years I won three Olympic gold medals in different crews. And the reason why I'm mentioning that is because public perception of me was 6'6", triangular shaped, very fit and able bodied person, and it's a very long way to fall from there. If we're talking about societal expectations, you go from being one of the fittest people in the world, doing something extraordinary, being in the spotlight and being praised and going to parties and being very normal, and this stuff wasn't on my radar either. There's no shame to that, because that's the world we were living in. There is a little bit of shame because I lived and worked with Paralympic Champions as well. So it was on my doorstep in the room, and I didn't ask these questions either, but I had a very successful time in sport. I was perceived a certain way, and then I was injured once I went through my return to the Royal Navy, and it's a long way to fall. I think the reason why I mentioned it and big myself up is because it's important for listeners to know that no one's immune from this stuff. I'm not saying it to fear, I'm just saying why it's important to engage to think, and there may well be people. Even if you're not injured and don't have any continence problems, there may be people in your life, in your family, in your friendship group at work that are working through, working with, having to work around the issues that you and I are discussing today. It's actually very, very likely. I went through the rehab process and not just learning to use a wheelchair and trying to get as much muscular strength back in my lower body as possible, but also learning about urology and trying to pick up as much as I could from the people that knew so much about urology. To the extent where I went back to the Navy to reestablish my career from a wheelchair and then over a period of time, slowly realising that I'm not capable of doing this. In your case, it's shaped the direction of your career. You know it's not going to be surgery and then you became GP and a registrar, and then there's a loss when you realise this is unsustainable for me. This particular job, and I've never talked about this, but I think a lot of people think that I left the Navy because of the wheelchair I couldn't walk and couldn't get around. It wasn't that at all. It was because of reoccurring UTIs. It's because I couldn't keep up the workload with neural fatigue, having a lower battery and having one week off every three weeks with feeling as not only physically bad, but emotionally as well. It affects the way you think, and then going on to antibiotics and being back in the system, before getting another UTI. It was, so urology, bladder, related that cost me that part of my career. That's sad. That's loss. I asked you about self-esteem, but I'll offer mine. I felt really low then coming out of something I loved with people I loved, and then you leave for a bit and just think, 'Okay, what's the direction now?' And when I had a UTI, it's the only time in my life that I felt in any way despondent because you don't feel like yourself. You're not thinking clearly. You can't speak clearly. It was a really tough time. When did you leave your profession as a registrar, GP?

Samantha Cole 17:42
So officially last August, but I'd been on sick leave for two years by that point.

Pete Reed 17:50
Okay. And is there in the NHS a medical discharge process? How does that work?

Samantha Cole 17:56
Yeah, you have to take. It depends on the scenario, but I took ill health retirement, and I was awarded, I do that with quotation marks in the air, tier two, which means the top, the top tier of ill health retirement benefits. So it means I can't work again. And that's a real big pill to swallow, a real difficult pull to swallow. I was also dismissed on grounds of ill health as part of that process. And a lot of people say to me, 'But you're a doctor, how can you be dismissed because you're unwell?' And I thought that at first as well. I thought, 'How dare they sack me?' You know, it's not my fault, but I appreciate they can't keep you on their books forever if you can't actually go to work and do the job. So it's very difficult. I mean...

Pete Reed 18:51
This is not long ago either. This is August last year, I only did the podcast, but really not long ago. It's fresh. It's fresh. It's very fresh.

Samantha Cole 18:58
And I'm still sort of coming to terms with it, I think. I've had so many health issues I've had to deal with in the meantime that my all my time is taken up with what I call medical admin. And I don't know if you experience that as well, trying to get appointments, trying to taste this, and the other waiting lists for various procedures. It sometimes just takes over. And I find it very, very difficult and frustrating.

Pete Reed 19:24
Is it double frustrating because you're a doctor, so you know the process is, you know the people. And you can sort of get an idea for if you're being judged as well. Does that make a difference? Because I can relate to what you just said. But I'm not an insider in the NHS. I just... And actually, I've had generally good experiences. I think it's generally good experiences because I don't know any different.

Samantha Cole 19:49
Well, I do know different. And my experiences have been really quite poor. Despite the fact I know the system, I know how to get my needs met. I know what to ask for. I know what language to use. I still ended up not being put on a waiting list that they've told me. So like a year, been waiting for an operation, not being put on the waiting list when I've been like, where, where am I? Things like that have happened several times and...

Pete Reed 20:21
This is important as well. We both shared a story about leaving work. That process is challenging, it's emotional as well, it's part of your identity and purpose. That's not true for everybody. So if there are people out there who do have issues with their continence, what we're saying, it doesn't mean you have to leave work for employees, it doesn't mean if someone has got continence issues that they can't do it. And far from it as well, I had to repurpose and just have a bit of a rethink. And I think part of that is it's healthy acceptance and it's expectation management. But there's purpose and fulfillment and work in a different way. You just need to just have a big rethink after a reshaping of life, I guess, of what work looks like now. How do you make it work for you? So two things. One, it might not be the end of the career, just because you're going through a process involving continence and it is manageable. In no small part, because of new products that are available, new innovations that are available to people now, to make these aspects a lot easier. And two, if you do have to transition, it's amazing what you still can do with some healthy acceptance and some reshuffling of your own expectations, which even though at this early stage for you, because it's only recently that you left the NHS, you said that you found purpose the role that you're doing publicly now, to spread awareness of continents issues of self-catheterisation. How are you feeling being a brand ambassador for Coloplast as well? Do you feel in a self unhealthy place for work and purpose and fulfillment and looking to the future positively?

Samantha Cole 22:09
Yeah, I just want to go back to your point about people listening not to be terrified about if you've got continence issues you're going to have to leave work. The reason I left wasn't related to my continents or my bladder, so I just wanted to highlight that. At the moment I've got a few ideas up my sleeve, things that I can do. I love being a brand ambassador for Coloplast. Like I said before, I've met so many people. I've had so many opportunities to share my story, to speak to people, to educate and it's been a real privilege, the whole thing, and everything they've asked me to do. I jump at the chance. At the moment I'm actually co-producing a musical at Nottingham Playhouse, and I've always been interested in the creative side of things, but getting into medical school I had to put that to the side. It's about disability.

Pete Reed 23:07
What's it called?

Samantha Cole 23:08
At the moment our working title is Secret Sides of Us. We've got a few characters who are wheelchair users. One is an ambulatory wheelchair user. We've got a character with a stoma who has a big song, all about stomas, and it's co-produced by people with disabilities. I'm one of those people and we share our stories and we create the characters and then we're going to have a musical. It's been a great experience. So Pete, what about you? You have such a high public profile and suddenly the whole world will have known about all your private business.

Pete Reed 23:48
Yeah, so they know what I'm prepared to share. I think it's important that I do share this stuff. In my previous life, what I've always called chapter one, headlines might been about winning a third Olympic gold medal and now Pete Reed Olympic Champion has continence issues and bladder and bowels and this and that. It leads down the path of pipes and plumbing. I'm happy with that. I'm prepared for that. I've made an emotional transition. I'm not harking back to my old life wishing I was there. I think the discussion that we're having can really help a lot of people. I know I do have a public profile. I think it's important and I do have a sense of duty to say this stuff that not everybody's comfortable to say because it can make them feel seen and relieved and empower them to have those discussions as well. When they're ready and I do feel able, so I should be talking about it and that's what we're doing today. This is us walking the walk. Can I talk about the impact of incontinence and continence on friends?

Samantha Cole 25:02
Not many of my friends know that I self-catheterise.

Pete Reed 25:06
Close friends?

Samantha Cole 25:08
Yeah. Okay. Perhaps they suspect. They do know I have continence issues. They know I spend a lot of time on the toilet. Some of them may know I have a stoma but I've never been someone who just advertises the fact and I don't suppose many people advertise the fact that, oh, I'm going to go island urinate now and I'm going to be five minutes and this is why I don't know. But I think it's because I started doing at a younger age and my continence issues were from a really young age. I've had a lot of punctuations in my past and when I say that I mean periods of time that were punctuated by wetting myself on important occasions.

Pete Reed 25:53
Do you mind talking about those?

Samantha Cole 25:54
I don't. Two of my best friends got married at separate times in South Africa. I flew over, especially for those weddings. One of them I didn't even get to the reception because my whole dress was covered in urine. Another wedding very similar. I don't know if it was because I was too busy having fun, I didn't think I'd need to go and catheterise because like you I don't have the sensation that I need to go and I just got distracted. But that's so sad to me. I missed my friends' reception and my first day of high school. In fact with all my new friends my school dress was soaking wet.

Pete Reed 26:39
It's heartbreaking.

Samantha Cole 26:42
Mmm. It's been varied of course. Each time that happens I just want to sink into the floor. I did emotionally sink and I didn't want to sort of acknowledge it. I'm sorry to mind helping me or sorry I've got a problem with my bladder. I just got up and I left and I never said anything to anyone.

Pete Reed 27:07
Am I only saying that it's heartbreaking by the way because of society? Maybe I am. That's because I know what being, first day of school, what that feels like anyway and I know what it's like seeing a big wet patch whether that someone else saw me and childhood. But maybe it's a societal thing where that shouldn't be heartbreaking where it's 'Oh no I've got this, I haven't got this one on this occasion but this is normal for me and I need to just go and clean myself up'.

Samantha Cole 27:39
And a teacher didn't really stick up for me either. Do you know what I mean? That would have been quite nice.

Pete Reed 27:42
Are we talking 90s here? Yeah. So that's really tough and if I say traumatising is that a fair reflection?

Samantha Cole 27:51
Yeah, definitely. I mean I think my whole personality would be completely different and I suppose it should be completely different if I hadn't gone through a lot of those things that incontinence from a young age. I think I would be, I don't know, what would have, you know, I to get to be a doctor, so maybe I would have gone even further if I had more confidence.

Pete Reed 28:15
You said you loved being a brand ambassador for Coloplast, but why? Has the platform given you something?

Samantha Cole 28:22
It's given me a lot of things. I would say it made me a much more confident person. It's given me the opportunities to share my story. For example I've been to Copenhagen, I've spoken in front of a really large audience, 800 people and then thousands across the world live streamed. I would never have done that before and it's sharing my stories of being incontinent essentially and, as I've said, I don't really talk about it to friends and family, but I know I'm building that confidence. I've spoken at the house of Lords. I've done all manner of things, haven't I? And sharing my story, talking and connecting with people who suffer similar health conditions as me. It's making me realise this is my life. Being an ambassador makes this a positive thing in my life. I can share my story and I can help other people. Being a doctor helps other people. I can no longer be a doctor but I can still help. And it's just opened doors for me in terms of communications, creativity, seeing what's out there and jumping at the chance of anything that's offered.

Narrator 29:37
On our next episode Pete talks about his own incontinence experience and the impact of UTIs. 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.