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, Pete is back talking to Coloplast Ambassadors Samantha Cole and Dani Logan about their experiences of ISC and the importance of finding the right solution when it comes to the products they use.

Pete Reed 0:45
We'll talk about innovations in a different episode of this podcast, but Samantha again, can you just talk a little bit about that first experience and I'll ask you Dani as well, the first experience of self-catheterisation with the product they use and how that's different to the product that you use now. I'm just talking about how clean, efficient, hygienic, fully emptying. What are your experiences of then and now?

Samantha Cole 1:11
You can't really compare. I mean, the first one I used was very, very rudimentary, just a generic catheter with two eyelets. No pre-lubrication on it, no cover, obviously reused all the time. I wasn't told to put anything on it. I was just told to insert it. I don't have any sensation so it wasn't a discomfort for me, but I know that that causes you urethral trauma. Compared to what I use now is the latest product that is taking the Urology World by storm and so the one I'm using at the moment is Luja from Coloplast, Luja Female and it is a single-use product. It's exceptionally discreet looking. You wouldn't know it's a catheter. It's now got 56 micro-holes in the micro-hole zone with the eyelets. They were two. There's now 56 of them in my size. There's different numbers in different sizes and it's got this special coating on it and there's multiple advantages to it in terms of the extra eyelets empty your bladder in one free flow so you're not leaving any little bit of residual urine behind.

Pete Reed 2:24
Why is that important?

Samantha Cole 2:25
That's really important because that stagnating urine gets infected and also any urine left in your bladder if you're prone to incontinence can start the contractions and then you, you wet yourself if that's the nature of your problem. The other thing I really like about it is I know people have said it's a very smooth insertion. Like I said, I don't have any sensation so I don't notice a difference but I know that is a big plus for some people. It's also very sustainable. A lot of the product is recyclable. It uses less plastic. The packaging that comes in is recyclable, all those kinds of things that reduces your carbon footprint. I've got to use this every day for the rest of my life five times a day, six times a day. Anything that's going to make it more sustainable, I'm all for it. So comparing the two it's unrecognizable but it's absolutely being a game changer and I had eight UTIs last year. I've not had any in the past four months.

Pete Reed 3:31
Wow, since starting using this new product so one of the one of the things that it fully empties and that makes a massive difference because you haven't got this pool of stagnating urine effectively like a cordial that when you're drinking and you're bladder is working normally, your bladder is filling up with bacteria filled from the previous void. Danny, similar experiences of the product that you use now and I think you said away from the microphones you're using, Luja as well. How does that compare to a product of the past?

Dani Logan 4:04
Yeah, I mean all I can say is between catheters of the past and where I started to where I am now is hugely different. I mean the first place I've talked to catheterise was a Royal Navy hospital I don't think they were used to young girls as complicated as me and I think I was actually given a male catheter. So I wasn't quite sure why it wasn't working and there was obviously a reason there but again very much similar to Samantha again back then all those many years ago it was reusable products washed at home and as we know now not great, certainly not great, somebody with a immune deficiency and they were latex I have a really bad latex allergy. So now I understand the pain and discomfort that I was feeling and why I was struggling so bad for so many years and I think that really fed into the feelings of I can't cope, I can't do this, this is affecting every corner of my life and what it should have been doing was helping me and helping me to live my life and that's where I'm at that now and that's that's the place I'm at and it's I still feel grateful today to to have arrived from such a place where I started to be in a place now where I can say that I have a good ISC routine and that it's not something that happens to me it's something that I control and it forms part of my daily routine but it doesn't completely overwhelm it or overtake it. I'm now able to factor it into my my daily life and a lot of that is down to the new products and since since coming to to Coloplast and I started with the Speedicath and was so having previously used something else and I was still struggling in my 20s and 30s so it was a really long time from 40 to 35 let's say of pain and discomfort and not quite getting it right and not being able to establish your routine and I keep saying to people when you find a product that works for you that's when you'll you'll get there and when you'll find that comfort that you know you need to find within your routine and again I've had a really positive experience with the new Luja. For me there's so many positives to it but again the design so I had a brain hemorrhage and so now I'm now blind in one eye so and my coordination hand to eye is really really poor so the micro embossed handle helps me really grip the product itself so I don't feel like I'm going to drop it. Very very handy when you're trying to catheterise on trains or planes so I feel like being able to travel was a little bit more opened up for me. And again it is a very discreet product so I feel very comfortable to be able to take it to university or work, if it rolled out of my bag I don't think that anybody would think it was anything other than a pen and that's really important so although I'm very open with the fact that I haven't that I ISC and I use a catheter I don't want everybody to know necessarily in the classroom if it rolls out of my bag but for me the biggest part of it is the the coating the triple coating technology, it is so much more comfortable for me on insertion and the whole way through the ISC process and I know that I'm causing less friction I'm there's less less friction happening and for me anything that causes less friction hopefully is going to reduce the risk of a UTI for me and that is my number one goal really so the whole experience has been chalk and cheese from start to finish and just really positive now.

Pete Reed 7:25
Yeah so that's wonderful I said it before I say it again it's a really good time to start to need to use these products just because of the difference in certainly the last couple of decades but even in the last few years and I just note your point about where the product being discreet. Samantha do you think the product that you use has contributed to reducing the taboo of ISC?

Samantha Cole 7:47
I think for me it has because I am generally by nature a private person and I don't want everyone to know what I'm doing all the time so the discretion, the appearance of the product works for me. If I want to tell someone this is what I've got I can but equally I don't have to I know other people might feel differently and I think it's a very individual choice but I suppose maybe I've contradicted myself there because by being very private about it I'm contributing towards the taboo.

Pete Reed 8:20
I think you have every right to be private in your private life yeah there's a balance here which is a really important point where how do you feel when if somebody comes up to you and asks you about this stuff it's very different in your DM inbox where you can do it from the privacy of your own home or if you dropped your female Luja it rolled across the floor and it looks like a pen and somebody picked it up and said what's this there's a discussion with somebody that you don't know sometimes feels a bit different and sometimes people get that right and sometimes people get it wrong and for me that's just about whether I get a sense of what their intentions are if it's curiosity great and I think maybe the product looking nice might help that process because it might feel like it's something less to be ashamed of so the conversation happens and if the conversation happens then it's something that you don't have to be ashamed of. I think is that kind of fair? Yeah yeah. The product design might help because sometimes I don't know why sometimes I have lovely conversations about these very personal subjects with people I've just met and sometimes if I just I think I'm sorry not today like I don't know your medical history you don't have any right to know mine and I think that just comes down to the kind of approach and I think that maybe product now does help I've got I use the male Luja here it comes in discreet but nice packaging I feel like it's something that I'd be less embarrassed to talk through with somebody that I don't know have a look and I've done that and maybe have you done that as well have you shown someone the product because of how it looks?

Dani Logan 9:51
Yeah, I literally had the experience of it rolling out of my bag at university. These weren't people that I knew particularly well and they said oh what's is that a pen I said it's not a pen actually it's really interesting that you said that because it's designed to look like a pen it's not a pen it's actually a catheter and I was able to actually lead to a conversation with people I maybe wouldn't normally have had the conversation with but I do like that it doesn't necessarily look like a medical device or something you know I like the sleek design I like that it looks like a lux-premium product but also and again I have days where I don't mind it looking like a catheter but for me you know popping it in and out of my bag I do like how discrete it looks and yeah but I certainly have had conversations with people just from getting the product out.

Pete Reed 10:41
We're here talking about breaking taboos of ISC and so it is important that it's discreet but wouldn't be nice if it's just normal jogging for everybody and it isn't quite yet but we're going the right direction where it's okay that people have to use products to do something really normal and the fact that it's intimate doesn't make it any less normal the thing about the product I use Luja it looks different to the female version it does look discrete but what I like about that is it's clear that lots of care and attention and passion has gone into making the product and that makes me feel valued so I feel like somebody else, a company cares about this stuff and that's a self-esteem thing Samantha you mentioned it earlier as well it makes you value yourself a bit more and feel a bit more normal and all the little details the material it's made out of, it's important so that you don't drop it because it's such an intimate procedure five times a day you need to make sure that it's tactile so that you're you're not putting something up a hole which isn't designed to happen you know with with your bladder and your urethra the pipe things are designed to come out and that's it and it's a very sensitive area it's the the organ, the bladder is very temperamental doesn't respond well to things going in because that's not how it's designed I'm going to butcher this and you're both going to look at me but the epithelial layer that they're you're nodding did I get that right that no? Okay Samantha

Samantha Cole 12:12
Urothelial but it's same thing

Pete Reed 12:15
I knew I was going to get that wrong but so that's for everyone that doesn't know their bladder anatomy as well as you do that's that's the the layer of the inside of the bladder like the inside of the balloon it's very very delicate and something that in my experience that neither of you mentioned was the old-fashioned catheters how much damage they do to that very delicate layer inside the bladder blew my mind so when I was first using catheters the two hold and I used a product because we're not selling anything it was a product from a different brand I can't remember the name of it but I used it because it's the only one that the nurses had and it's the one they showed me. It had two big eyelets what was happening was as I was catheterising so the two eyelets would go up inside your bladder, they'd push open the sphincter the valve which was an uncomfortable process and then as your bladder was draining through these two eyelets there's a pressure differential going on there and the bladder lining, called Samantha.

Samantha Cole 13:17
Urothelial.

Pete Reed 13:18
Thank you. Was sucked into these big holes and then sheared off and these micro traumas were like little love bites inside the bladder lining causing flow stops, causing spasms, causing shakes and flutters and then not fully emptying and for the first two years of my injury my bladder and yours as well took such a hammering in a place where you just want it to be smooth and perfect so that it doesn't have scars that can harm the bacteria through this process and I find the Luja product has just stop that immediately it makes a massive difference and I've had the same experiences as you Samantha that my UTIs have plummeted since using the product just because of fully draining and not traumatising the bladder lining.

Samantha Cole 14:04
You don't get that mucosal suction from those two eyelets anymore because of all the extra holes and yeah so you're not getting that trauma.

Pete Reed 14:13
I'm glad you've had that experience as well I think it's important to say it's not a silver bullet since it's stopped UTIs but anything to reduce the risk and I include that in the bracket I'm just doing a little bit of talking here but I need to see you kind of nodding and stoping me if I'm talking nonsense but from what I've learned as a layman from healthcare professionals and urologists, using a product that works for you plus making sure you're monitoring how well hydrated you are, reducing the amount of caffeine which is an irritant and a diuretic, reducing not living like a monk but reducing alcohol, fizzy drinks the amount of sugar that you have in your diet which would otherwise feed bacteria all of these things are there in your arsenal for how to make you as healthy as possible so that we can do our very very best. Dani I know it's not quite that simple and it's complex but I, do you feel like this is really sensitive now do you feel like if you'd started your process and been born 40 years later in 2025 there will be a different outlook.

Dani Logan 15:18
No I do and that makes me really really happy to know that it's not great what I've been through and I do know that if I hadn't had so much trauma to the bladder that there wouldn't be so much scarring and that does add to the problems but it makes me really happy to see the innovation that's happening whether that's just around what we're talking about sitting here right here I never thought I would be sitting here having this conversation and that makes me so happy because it makes me feel that it's okay to be me and I never thought I'd get that but to see how the products have changed to see that the care and attention that is going into it knowing that they're listening to our concerns and feedback of what issues are you facing in your daily routines, what are the main concerns to know that people are striving to make those better and find solutions that maybe don't take them away but make them easier I know that people starting an ISC journey now whether they're 40 or 80 or even, you know a teenager or a child I know that if they can start with a product that's right for them if they can be taught and educated on the product on their anatomy and the need to catheterise I know that the process for them will be so much better than it was for me and I hope that that means that they won't feel that they have to isolate. I hope that it means that they won't feel alone in this because they're really not six million people in the UK suffer with bladder conditions and so many of us are having to use ISC. So I hope that it will be a positive thing and although that I've been through all of this and it's been so hard the one thing that I always said that I wanted to come out of sharing my experience was that if I can hopefully reach one person and they think that's me that I can connect with that and it helps them to feel less alone than I will have done something that you know and help towards somebody feeling less of the way that I felt as a 14-year-old and I will have done what I had set out to do.

Pete Reed 17:19
That’s such selfless positive reflections and I feel so lucky to start this process a lot later as well. I think for everybody that's either interested in this for all the right reasons or concerned that they need to perhaps have a discussion with a doctor and then a urologist about options. We are hopefully we can be part of the influences that let them know that it's okay, safe, normal and that there are lots of products out there because if you go onto YouTube and search for anything that you enjoy whether it's the the latest tablet or gadget or car then there are a million people talking and doing reviews and showing you what's out there and back in the 90s that just didn't happen for catheter products and it's, we can be part of that scene for people that need to know that there are lots of options, there are lots of products, it's finding the thing that works for you and it's really important so do ask questions and seek medical advice.

Samantha Cole 18:20
Nowadays patients have so much more choice, you know and there's so many more products and patients have given a role within the sort of doctor patient or nurse patient interaction where you've got more of a voice and you can say can I try I've heard about this product or I saw it on instagram or you know Pete Reed was talking about Luja male I'd like to try that he's saying really good things about it. Back in the day you didn't, you weren't empowered in that same way and I agree with you and I've said it about stomas actually it's the best time to be alive if you need to do these medical procedures because we are as innovated as we can be at this present moment in time and it's only going to get better so I think it's exciting and I think you know the more people talk about it it's great.

Dani Logan 19:18
And perhaps maybe one day we'll see it on Coronation Street. Exactly. That's my goal. We've seen what talking about stomas can do and we have this conversation all the time. We've seen what talking about stomas has done it's opened doors it's brought that to the public awareness and knowledge about it and acceptance is there and we always say that we feel that ISC is about ten steps behind and we just really want it to, you know every time it's spoken about it is breaking down another part of that wall, that taboo that is still remaining and definitely more needs to be done and more awareness to be raised but you know if we could see it one day being spoken about on Coronation Street and somebody saying yeah I catheterise is you know that would be you know it's out there and then hopefully like you said if if it's we can use social media for good and if the more that is out there and the more people are able to access information then hopefully it won't feel as strange or as scary when when it's something they have to do themselves.

Pete Reed 20:17
So that's the benchmark. It appears on Corrie will know what the job's done and that's the challenge before 2030. If more people are aware of self-catheterisation these subjects that we've been talking about today, how would that affect you and other people?

Dani Logan 20:33
I think it would make day-to-day life a lot easier to not have to go into detail with people if they had some general understanding of ISC and what catheterisation is. Even as we're seeing that that that barrier be broken down with with stomas I really don't think it would take too much more conversation to have that happen with ISC and for for us I think it just means that we don't feel like social pariahs I think it would be lovely to to be able to be open and honest about ISC in the community and just feel less alone in it and the biggest way to do that is to build a community and I just hope that people will less alone in listening whenever there's a conversation.

Samantha Cole 21:15
It would be nice if people knew what it was because sometimes you do need to use an accessible toilet. Sometimes you take a long time like my bladder gets very full and so I'm draining it for a really long time and people are knocking on the door what you doing? You know I'm carrying something to the toilet with me just little things like that that aren't a huge big deal but if people kind of knew what it was it would be less of a big deal.

Dani Logan 21:41
I know both of us have been challenged using disabled toilets and again it feeds into you can't see that disability or the fact that we use ISC or a catheter. It's not visible and you know if there was a little bit more understanding around bladder conditions and continence issues I think having to justify the need to use disabled toilets you know surrounding hidden disability we can break down those barriers as well. I think that would really help day-to-day life for us.

Pete Reed 22:11
Purely practically people that don't need to use the accessible toilet might think twice now having listened about just nipping into this just quick it won't affect anybody. It can be really catastrophic from my own experience. It's meant the difference between having a wet patch that leaks all over my trousers and cushion on my wheelchair and if I'd had those extra three minutes then maybe I'd have got there in time and I wouldn't have the indignity and all of those things and I mean wider connotations that there might be clothes designers or engineers or architects or there'll be scores of people out there listening to this that it's just on their radar so when they're considering their next move or business venture or decision then they can factor in this conversation and the many others and make appropriate decisions that really help us out. Yes so we're busting taboos it's the right thing to do and and all of a sudden talking about it with you both it doesn't feel quite so taboo anymore and that's that's a process that I hope continues so that no one feels like this is a dirty subject or something that can't be broached at any point. We've been talking a lot about UTIs. It stands for urinary tract infection but why do we say UTI's are we say throat infection or ear infection? Are we trying to hide something is that part of stigma? Why is it UTI when you're going to see a doctor? Why do we whisper it?

Dani Logan 23:34
So I think within society it does really come down to being a taboo subject still and for me personally although I'm very open about saying it now I think in the past I have been, even healthcare professionals have asked me there was an association between UTIs and especially for women you know could it be linked to an STI could it be, you know sexually transmitted disease again we're doing it there we're saying STI and minimalizing it you know, or could it be down to your personal hygiene which obviously in your 40s is it's quite insulting, you know but it is a case of I think just because it comes down to being based on such an intimate infection of an intimate area it's still in society is one of those topics that is spoken about in harsh tones and made to feel like something that should be really kept very private and only discussed between you and the doctor maybe or yourself and your close family it shouldn't be out there in the wider world and yeah it’s certainly not the case.

Samantha Cole 24:36
I was just thinking obviously in medicine you do a lot of writing especially when you're training anything you can abbreviate is brilliant so I think there's an element of that. Just shortening it. The other thing is women get UTIs I don't know how many fold times more than men because of the short urethra and it's often related to sexual activity and I think this is one of the the kind of taboos a stigma and a lot of women who don't have any risk factors other than that for UTIs have to go to a doctor get three day course of antibiotics and I think a lot of doctors who aren't familiar with complicated UTIs will assume it's just oh she had sex last night so she's got a UTI today so I'll give her three days of antibiotics and you've got to say I self-catheterise I have a neurogenic bladder I need excuse me a week’s worth of with antibiotics. I don't I shouldn't have to like defend myself you know we talk a lot about male doctors not appreciating how severe the symptoms of a UTI are because not many men who don't have plumbing issues get UTIs so they don't appreciate how painful it can be if that can cause incontinence all these are the issues and you're just kind of fobbed off sometimes and you really have to plead your case like I really need treatment you know.

Pete Reed 26:02
It's a sensitive episode and this is another sensitive question but do you think there's a male female divide when it comes to taboos with self-catheterisation or UTIs or approaching a doctor just for those points that you alluded to a man going in they might not feel as judged or feel like that they're dirty they were having sex last night so is there a male female split with taboos do you think?

Dani Logan 26:27
I do. I think because in terms of medicine male UTIs are far more rare so I feel that they probably would be taken more seriously on a medical standpoint and investigated and given appropriate timely treatment. Whereas a female may have to go to and from the GP several times for that particular episode to to get treatment and may be presented with questions that probably a male wouldn't be asked.

Pete Reed 26:57
Yeah running the judgment gauntlet. Can I ask you both to have a or lead a discussion about giving practical advice for any listeners that use the product or who are interested with how to how to broach the subjects with friends, family, work, people who are interested what are your experiences what are the practical advice that you can offer Dani?

Dani Logan 27:23
So with family obviously my my husband and you know my mum and brothers and you know they know growing up with with it but you know walking into my husband's family's house they certainly weren't aware that this was something that I did and it was quite difficult to to I did feel a little fearful about broaching the subject so one of the ways that I went about that was to to have a little discussion one Sunday afternoon with my mother-in-law and said so I have to catheterise to go to the toilet now and I got the product out and I was able to show her and she was absolutely fine with it and I said it would be really helpful for me if I could leave some of the products here at the house in the bathroom so that I don't have to carry them around every time we come to stay and she said that's absolutely fine and it gave us a really lovely opportunity for her to say I didn't know that you did that can you tell me why why you have to do that and oh what's the product and to give her an opportunity to look at the product and and actually see it and feel it and to ask as many questions as she wanted to and it really allowed for a natural conversation and now we talk about it all the time so it really helped me something that I had concerns about just by saying is it okay if I leave some my catheters in your bathroom? Just to be able to to touch on the subject a little gently and and then move forward from that.

Pete Reed 28:44
Yeah that’s great, great advice. And Samantha something for practical advice or work maybe or?

Samantha Cole 28:49
Yeah I mean I think I would go about in a different way to what I did. I was working in a GP surgery as a doctor and I saw patients every half an hour and I asked my boss if I could have five minutes in between several patients to go to the toilet being as I've got a catheter I mean I've got a stoma and I use catheters. This was not allowed and now I would say probably quite a lot of people who use ISC don't have a visible disability and I think it's important to remember that it isn't, it's a disability you know having having bladder issues that require a medical device. And it's important to be upfront with your colleagues or your boss who ever needs to make the arrangements for you they need to make reasonable adjustments. I in general tend to go about my life assuming people know what I need and then getting upset when they don't. And so I would say be confident about it show them your catheter, explain it to them if need be I mean in a medical situation you don't necessarily need to do that, but you might get what you need better than what I did.

Dani Logan 30:04
I actually found that speaking to occupational health within work was really beneficial for me just so to start the ball rolling I didn't feel able to have, even in a medical environment, able to I didn't know my boss very well I didn't feel very able to have a conversation initially on the intimate level about needing and why I needed to use catheter and have toilet breaks. So I did speak to occupational health and they were able to help with getting me protected toilet breaks and factor that into my day and that was just filtered back to my boss in a very generic way but a very protected way that this young lady needs to have breaks and that sort of helped me at the beginning of my career.

Pete Reed 30:43
I just want to thank you for coming on and sharing your experiences that they're so so personal and so intimate and none of us would have dreamt of having this conversation publicly 30 years ago. I feel like it's amazing that we're able to do that now. I'm very very grateful for you both for sharing. What's the best way that if people have listened to what you've said they really resonate? They've got some more questions and maybe before they go to a doctor can they get in touch with you social media. What's the best way for them to do that Dani?

Dani Logan 31:16
Oh yeah, absolutely my inbox is always open. I have found that one of the best ways for me has been speaking to other people in the community like Samantha so yeah my inbox is always open so Instagram or any other other platforms.

Pete Reed 31:31
Can you plug yourself to make it easy for them? I'm sure we'll put it in comments and make you easy to find but

Dani Logan 31:32
yeah it's at chronically Unscore Breathless MUA.

Pete Reed 31:40
Cool and how do you feel about sharing your experiences?

Samantha Cole 31:43
Absolutely I mean I be delighted if anyone wanted to get in touch with me please feel free. I'm mostly on Twitter so it's at Doctor Ostomy and it's D O C T O R rather than D R.

Narrator 31:57
On our next episode Pete is chatting to Coloplast Ambassador Samantha Cole about her life as an ISC user. There are lots of amazing charities that can provide focus support depending on your particular need as well a lot of information at coloplast.co.uk. Thank you for listening to Incontinence Talks I remember to consult your GP if you have any worries about your own continence.