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 joined by ISC users and Coloplast Ambassadors, Samantha Cole and Dani Logan, to share their experiences of ISC.

Pete Reed 0:41
So Samantha and Dani, it's so wonderful to see you again. It's lovely to have you on the podcast. Are there any ways to overcome the stigma of self-catheterisation? Samantha.

Samantha Cole 0:51
Well, I'll start because I've been self-catheterising since I was 18, I'm now 46, so I'm quite a dab hand at it now. I've seen the impression of self-catheterisation from multiple different perspectives because I started doing it in South Africa, then I moved to the UK and the sort of health care systems are very different. I also have a stoma and I've noticed a real difference between how people act towards those, with stomas versus self-catheterisation. It seems no one's talking about ISC.

Pete Reed 1:25
Why do you think that is?

Samantha Cole 1:27
I've had a good old thing about this and I think partly it's very much an intimate process and for stomas, people can stand on Instagram or social media with their stomas out showing people, 'Oh, this is what I've got attached to me.' Whereas I can't go to a live self-catheterisation episode. I think it's to do with your private areas. People don't really like talking about that. And I also sometimes think there's an element of stigma related to anything toilet related. And I think that goes right back to childhood when you're potty trained and your parents are saying, 'Don't do that. It's dirty.' Getting in trouble for wetting pants, things like that. I just really don't think it's in the public eye at all. And I think that needs to change.

Pete Reed 2:17
I agree. I did some searches before we came on the show and it's very easy to find actually very beautiful people with their stomas out. And it looks flawless and it's almost impossible to find anything to do with, I want to say ISC. But for the listeners that stands for intermittent self-catheterisation. So the process of, it's a medical procedure. It's putting something, I'll use big words and small words. You'll correct me because you're both healthcare professionals, but putting something inside your urethra. So up your pee hole, whether you're male or female, it's the same process. But it's a medical procedure. It's very private and personal. And of course, you don't see that on the internet. Dani, the same question. I mean, how can we increase public awareness about the, so it's a vital routine for all people to do it, very normal routine, five, six times a day, four times a day. But no one knows about it.

Dani Logan 3:11
Absolutely. I started catheterising when I was 14, so very, very young. And I've had two experiences with it. That, that one wasn't a great experience. I wasn't given any support or guidance, you know, in terms of a specialist bladder nurse or anything like that. So I really had no idea what, what catheterisation was. I'd just gone from having an indwelling surgery to being told, oh, you can't be normally anymore. So you're going to need to, to use a catheter. It wasn't shown to me. I wasn't, I didn't see the products, and I didn't have any support. So it wasn't in the ether at all for me. I had no idea what ISC was. And then suddenly I'm being told, you need to do this for an unspecified amount of time. And it was really difficult for that journey. It has got better. But even when I came back to needing to use ISC in my 20s, 30s, and now my 40s. And now I, ISC full time. I was really shocked when I came back to it to find that really nothing had changed. There wasn't anything out there for me to, to prepare myself in terms of research. The only, the second time that I got was a more positive experience with the help of a bladder nurse. And that was, I suppose, where I saw that things have changed. But certainly within the general public, there was nothing out there. And the people that I spoke to about it, it really came across that they were very shocked that somebody, at such a young age, like me was having to do this. Because to them, the word 'continence' or bladder issues refers to an 80 year old lady. And the only continence intimate products that they were aware of was pads. They were completely unaware of catheters or how that would work or how you'd fit that into a daily routine outside of what they perceived to be a medical procedure of an indwelling catheter in hospital. So trying to figure out how that slotted into my everyday life was really difficult when there was no information out there.

Pete Reed 5:07
You were 14 when you're going through this process. And I've never been a 14 year old girl. But I remember being 14 and these are formative years and your body's changing and your hormones are changing. How did you feel when you're having this first discussion about continence and how did that process being taught what to do, what the medical procedure is? We've already said how intimate it is. How was that for you first time around?

Dani Logan 5:32
It was an absolutely awful experience. I was handed a bag by the nurse who wasn't a bladder nurse and just told you know taken that big tube catheter out of you now. You are still not able to pee normally. We're not sure when that will return. Handed a bag and told to get on my way. I wasn't shown the product. So I wasn't taught how to do it. So I wasn't taught how to ISC. I'm very lucky that my mum was a nurse. So I did have somebody that I could talk to. But essentially I was mortified. I felt embarrassed. I felt ashamed. I thought I was the only 14 year old in the world that was having to experience this. And I essentially withdrew from my life. I stopped going to school. I didn't feel that I could talk to any of my peers about it. The one friend that I did tell about it couldn't really, maybe it was information overload but she couldn't really understand it. And there was nothing out there for people. So she kind of withdrew as well. And I just shut down in terms of my life and felt like I couldn't really go out in society and really shut myself at home. And luckily I was able to get back to some form of normal routine for a while before needing to do it again as an adult. And again it was such a far better experience as an adult. But as a teenager it really shaped my experience of what you can and can't talk about and made me think that you know something is wrong with me. And this is something that does need to be because the adults around me didn't want to talk about it either. And whether they didn't want to or they didn't know enough about it but it was very much engendered. This is a private matter and it's about your body and about intimate areas of your body. So we really need to talk about it in really hushed tones and don't mention it around the men in the family and things like that, especially you know going to a Catholic school and things like that I wasn't able to really. I just didn't feel like I had anybody that I could share it with or talk about it with and it was a really lonely time.

Pete Reed 7:25
And I don't want to age you but what decade are we talking here just so people have got an idea of society at that time?

Dani Logan 7:31
The same in the 1990s.

Pete Reed 7:33
Okay cool. And so Samantha but the same for you did you have a similar experience when you were being taught how to do it? Did somebody show you were they there? Because I can relate someone was with me at the time when we went through catheterisation but this is in 2019 and it was a different world. What was your experience of being taught the process?

Samantha Cole 7:50
My teaching experience was back in the 90s as well. And I'd actually gone through 7 years of incontinence by this point, severe incontinence and no one ever offering to do self-catheterisation. I had a little operation to try and improve my continence and it meant that I was in complete retention afterwards so there was no other option but to self-catheterise. And I had a nurse come and show me five minutes in the ward toilet with a mirror, stick it there, that was it. I was given one catheter to use for three months, wash and reuse. This was bearing in mind, this was in South Africa. I wasn't followed up by anybody. I was just told to get on with it. And of course I got a lot of UTIs because what I know now compared to then it wasn't really something I was expecting but it did improve my incontinence a bit.

Pete Reed 8:43
Because we've got lots of listeners that this isn't their world at all so they'll be healthy and they'll take it for granted in the morning they jump up, nip to the loo, have a wee, have a poo, get clean, have a shower and off they go and you've used lots of big words that we're not used to but continence issues, if you're leaking or voiding is the medical term, but you can't stop yourself from peeing. So your options are either have an empty bladder, you'd think a lot about how much you drink at that time or you wear pads or a product that just mops it up and try and get on with your day with this sort of must feel like a dirty secret. And then after the operation you went into full retention so at that point you can't pee so could you feel. So could you feel when you were your bladder was full?

Samantha Cole 9:31
No, I've not been able to feel my bladder being full since I was 11 due to the paralysis of the bladder. Just for a bit of background I had a spinal cord problem and it lets paralysis of the bladder and bowel so from the age of 11 I've not been. I couldn't feel when I needed to go. I can't voluntarily go to the toilet in any way shape or form but I can't stop my bladder contracting when it's decided too. So it was a bit of a combination of everything and the utter shame that I felt not being able to control my bodily functions had such a massive impact on my self esteem and you know catheterising did improve my incontinence. That operation I had didn't work for very long so after that I wasn't fully in retention but I also couldn't voluntarily urinate. So it's been really difficult and it's something like you said a regular person can get up in the morning and not really think about these things, go to the toilet. I have to think every minute of the day, have I got enough catheters with me? Where are the toilets? Take medication that makes my mouth really dry. I have Botox injections into my bladder.

Pete Reed 10:46
What does that do?

Samantha Cole 10:47
So that stops the muscle from involuntarily contracting due to the nerve damage and that is great. I was already in partial retention. It can make you go into full retention but that's not a problem for me. I'd rather be in retention than leaking everywhere. So it stops you leaking.

Pete Reed 11:05
So I'm just trying to remember back to my experiences of when I first had a spinal cord injury and the medical teams, so the urologist is the people that specialise in bladder, bowel, bladder, kidneys, renal system. They explain that your body now speaks a different language and they also taught me at the time, Urology is such a complex neurological system so without digging too deep into anatomy because I'll trip myself up, but there's a sphincter. So a valve to the bladder which is neurologically it’s closed all of the time so the door is closed to stop you from leaking in my case. What also needs to happen in a healthy person is the muscles around the bladder are relaxed so that during the day when your bladder is filling there’s space for it to move into. So you've got one system, relaxed, one system contracted, and then a signal sent when your bladder is filling, so your mind knows what's going on and when you get to the loo, then the process is squeeze muscles to squeeze the bag and relax the muscles to open the door and that's so complex without much damage at all to a spinal cord or lots of other conditions that process just doesn't work. And Samantha, I'm in the same camp as you where the door is closed and the muscles can relax but I can't feel so a lot of knowing when to catheterise, it's an art more than a science I think and everybody knows their body well, it's making sure that you know how much you're drinking, exactly what you're drinking, what medication you're taking, where the next toilet is and looking at your watch. Dani, does that sort of sound familiar to you as well and they've got a different neurology and processes going on, maybe you can talk us through that.

Dani Logan 12:51
Yeah, mine’s a bit different. I went into full urinary retention post major surgery for a bowel tumour when I was 14 and at the time it was thought that it was just a complication of the surgery and there was a lot of adhesion so they just thought it would settle but as we've sort of moved on, I have a lifelong immune deficiency so I'm very prone to getting infections. One of them being UTIs of the bladder and that can move up the system to my kidneys to a kidney infection which is Pylonophytus and years of repeat infections of UTIs and Pylonophytus and infection has led to more scarring of the bladder itself but I also have quite severe endometriosis that has infiltrated my bladder and my bowel and all of those things together really has created a perfect storm and so my bladder just it just doesn't work anymore and so I'm in retention all the time unless I use my catheters to pee so I do get a lot of pain and a lot of spasms surrounding ISC still but I am able to get relief still when I'm able to pass catheter.

Pete Reed 13:58
I'm speaking to the listeners now who this isn't their world and they're interested and curious for all the right reasons so thank you for tuning in. What do you think the general public perception of UTI is?

Dani Logan 14:12
I feel that the general perception is of something very minimal of a very minor ailment and that is not completely wrong for many people it is a very minor ailment that with proper treatment will go away very quickly after a trip to the doctor in a short course of antibiotics but for many more people there is a real problem with recurrent or chronic UTIs that don't necessarily always stay in the bladder they can as in my case progress up to the kidneys and become a more serious kidney infection or pyelonephritis and again for me that leads to I get UTI I've been getting them since I was five years old. In my early days I would get a UTI maybe once every three months. Now most people would maybe get one or two bad ones in their lifetime. I'm experiencing now concurrent back to back, never getting a break from them infections and UTIs that are so severe that I'm having admissions to hospital every month and I've had 10 episodes of sepsis in the last two years alone so they have become something from being seen in the public eye as something very minimal and very, you know a very minor thing obviously in my life it is a very big thing and it affects every single aspect of my life.

Pete Reed 15:34
You mentioned sepsis there and I don't know much about sepsis other than it's very scary. Can you help the listeners with a definition of what it means to you please?

Dani Logan 15:44
So for me where I have an immune deficiency the infections become quite bad quite quickly so I will go from having a normal UTI to having a very bad kidney infection which is pyelonephritis and that very quickly overwhelms my body system and can become what's known as sepsis which is just an overwhelming infection within the body and that needs admission and it's quite quite dangerous and it needs you know very urgent attention and usually admissions to hospital for quite intense antibiotics because the infection has become so so bad. And I'm really happy to see that in recent years there has been a huge campaign in drive around people making people aware of the signs of sepsis and that's fantastic because it needs to be out there just as much as what we're talking about UTI's and continent's issues. So for me I'm very happy to see that that is gaining awareness but living it you know every other month is very very scary.

Pete Reed 16:40
I've got a similar question for you Samantha rather than being about UTI's it's what do you think the public perception of a catheter is or catheterisation if you just said to somebody who's not in this world, what would they think of and how did that affect your decision to tell or not tell friends and family?

Samantha Cole 17:03
I think if you want to call them the lay population would say a catheter in their minds is an indwelling long-term catheter with a bag attached strapped to your leg and they may have seen it in an elderly relative in hospital or may have had one themselves after an operation. I don't know if there's actually anyone who would know what an intermittent catheter is that you just insert it and then discard it. And to say there's a lot of people who use them, it's not really suitable, it's not what we need we need to be raising awareness because a lot of people use them and if there's no awareness of it it's harder to disclose that to somebody to say I you know for example you're at work I need to go to the toilet I need a bit longer because they use a catheter. In my case I was working as a doctor so people knew what it was but for example if you worked in a shop you might ask your boss I need a bit longer to go to the toilet and they'd be like I don't understand I don't know what you mean and then you have to pull your catheter and explain the whole process I haven't told many people in my life I haven't told many people and I don't know whether that's because I've been struggling with bladder issues from a young age and I have that overarching shame feeling about it even though now I know better now I'm medically trained now I talk openly about these things I find it difficult to, I would rather tell someone I've got a stoma than that I self catheterise. You would it would be the other way around because you know who is seen as a bit dirtier than urine. I find it difficult to tell people and I tell people on a need to know basis.

Pete Reed 18:50
Dani, what's your experience of the same question have you found talking to friends and family?

Dani Logan 18:56
Well as I say I was so young at the time when I first started my experience and it was a negative experience and it did in a way force me to withdraw from the world you know and I missed out on things like my school prom and things like that because I was terrified of somebody finding out or pretty sure that at the time I felt that you know perhaps boys wouldn't want to date me things like that and I as I got older and I needed, went back into retention and started to have to use catheters again I really looked around for information and was so aware that considering so many people suffer with bladder conditions and continence issues there was just nothing out there especially for the younger generation it was being only represented for the elder generation and I really thought this isn't right we need support we need, this is something everybody has to pee I just have to do it this way and it really I suppose by that point being medically trained I really wanted to go out there and kind of change that and so I did go about trying to be more honest and it did take a little while to, especially with in terms of work and telling friends and family outside of my my close knit group, but I did find a bit of strength to be brave about it because I thought if I don't ever start talking about it just with people in my circle how will it ever get out there so I did find that I was able to start talking to people at work and especially in terms of allowing that to help my own routine so by telling people it made them aware of what my needs were and it really did help I think to be able to start telling people and once I started going down those circles I was able to see that there is a very small community but there is an ISC community out there and it was really warm and really welcoming and it's led me to to where I am now.

Pete Reed 20:48
So I don't want to age any of us but none of us are 18 anymore and I'm thinking back to if if this had happened in my 20s if I'd started catheterising how would I have felt but in 2019 when I had my injury I was 38 to the different stage of life and it made it easier for me to talk about. Samantha you started when you were young and now you're on a podcast talking about it and and maybe your friends and family still don't know but they they will soon. Is it do you think an experience thing or an age thing where you just get to a stage of life where you said that this is really important or is it a society thing it's 2025 now, it's this is the time to start talking about these things for people who are starting this process and they're still 18 and 20 and, and a bit worried do you have any advice for them about how to maybe broach the subject of self-catheterisation with their friends and family?

Samantha Cole 21:39
Yeah I think obviously now there's the internet. The internet wasn't around when we started self-catheterising was it and there's peer support there's Coloplast ambassadors there's bladder nurses. There's all sorts of support so I I wonder if I started nowadays at the age I was with them my whole experience would have been different and telling people now I think it's a combination of all those factors you mentioned and I don't see why I should feel shame about it anymore it's sort of self-imposed shame because I wouldn't think badly of someone else who needed to use any kind of medical device I would actually probably think wow they're getting on with their life you know there's nothing to be embarrassed about I'd probably be interested in all what's happened to you and so I think yeah as I'm getting older I'm just letting those things go. But it has been a huge source of embarrassment, loss of esteem. Really really difficult and I think I was talking about these things now I hope that people are listening and saying I'm going to go and ask for help or I'm going to find a bit more about this or I'm going to share this information with someone who needs it and I think there's probably people out there who need to use it who aren't aware of it.

Pete Reed 23:04
I totally agree and I think it's really important to say at this stage that the more that we talk about this more that we all talk about this the less sensitive it becomes and that's true of anything but we're adding our voice and I think if it's true that if you're if you're offended by something then expose yourself to it and we're increasing that exposure.
I hope it gives people confidence that they're listening to this conversation and awareness is spreading because the listeners are going to fall into one of two categories: those who don't know anything about intimate and self-catheterisation and those and don't need it or use it and those who do. On the back of your answer I've just thought of another category the people who don't do it don't know about it but actually do need to use it you know that so if there's something a little bit wrong and and they're just a little bit too embarrassed because whether it's a spinal cord injury medical condition and something after an operation they might be saying to the doctor everything's fine but actually it's not they're wearing different pads or they're concerned about their sensations and actually they do need to see a doctor about something that's very very normal and very clean, very hygienic and, and I've said this a lot in the past, 2025 is a really great time to be into self-catheterisation and to need to use it because it's not South Africa in in the 1990s where you're given a device that you need to wash and reuse.

Narrator 24:37
On our next episode Pete, Samantha and Dani continue their conversation and talk about finding the right solution for ISC. There are lots of amazing charities that can provide focus support depending on your particular needs as well of lots of information at Coloplast.co.uk. Thank you for listening to Incontinence Talks and I remember to consult your GP if you have any worries about your own continence.