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 incontinence, hosted by former Olympian Rower and Coloplast Ambassador Pete Reed. Today, Pete and Emma talk about the challenges faced by people living with intermittent self-catheterisation, and in particular the recurring issue of urinary tract infections, often referred to as UTIs.

Emma Russell 0:44
So you went through quite a few different catheter types, so did you use a set when you started? You said you mentioned about the bag that's sort of you were able to see, and then you've moved on to what you can just drain straight into the toilet.

Pete Reed 0:58
So my first ISC catheter had a bag attached. It was the only one that I was shown actually in hospital.

Emma Russell 1:05
So you weren’t given a choice?

Pete Reed 1:06
So I wasn't given a choice, I was given this thing okay, this, this is an intermittent self-catheter, that was what I was told, which is true, and, and I used this product, and I thought, okay, this is working, and occasionally I'd get UTIs, urinary tract infections from pushing something up, or getting the procedure a bit wrong, or they can just happen, because you're traumatising your urethra a bit, your bladder lining a bit. This was a a previous generation catheter with two eyelets, so you've got to have a hole in the end of it, to let the pee through out of the bladder, and typically ISC catheters have got two holes, so you push it through the sphincter, and this has been the norm for a few decades now. Pee runs out of these two holes, but they're quite big, these two holes, and they're maybe a millimeter or two, it doesn't sound big, but it is when you're looking at scales of bladders, and what was happening was, as I was peeing, occasionally the pee would just stop flowing, it's called a flow stop. I would feel this sort of fluttering and vibrations in my bladder, didn't know what was going on, and then what happened is you're taught to twist and move the catheter so that the flow then starts again, so this was a product that I used for a long time, it had a bag on it which was really useful. I think something really useful that I did at this time, maybe this is the navy in me, or maybe it's the athlete in me, but I kept a record of every single time I peed for three years until it became more of an art than a science, but I kept a diary of when I peed, the quantity, the colour, and I've still got my diary history of that now, which was actually really useful as I was getting started. Maybe three years was a bit over-deligent, but it was still kind of useful, and it helped me track when I had UTIs as well, infections. So I used this product for a while and I remember thinking that it's good enough. There wasn't anyone telling me on podcasts or YouTube or what the other options were, it's not like cars or tablets or phones where every beautiful person in the world is telling you which new one to get and what the upgrades are. And I thought that was it, and I thought what I had was good enough. So I'm talking about my transition to Coloplast now. In that time, I guess I did try some other products here and there when I moved from secondary care in Dereford to the spinal unit, there was a bit more understanding from the nurses about something else could work better for you. I tried Coloplast, speedy cathe for the first time, but I remember the day, it was a couple of years later, so now we're in 2021 when I started talking to Coloplast about innovations coming and something secret and exciting that they're producing, and then it was 2023 when I spoke to the senior team, they were really excited about this new product, and at the time, it's out now, it's called Luja, but they wouldn't mention the name at the time. They said that we've got something really, really exciting. It's a new generation of ISC technology to help empty the bladder, and at the time I was just thinking, "Yeah, yeah, it's okay. I've got my catheter product. Thanks very much.” Even though it wasn't working well, I didn't know that. And I was convinced at the end, just please try it and have a look. So I used a pre-production but early model of Luja, and if I said wonderful, it's so exciting. It felt more comfortable putting it up inside. I remember the first time I heard the pee coming out. It didn't have a bag on it, it doesn't have a bag on it. So I changed the way I sort of navigate up to a toilet. So I wheel up to it and empty my flies, and I can get close enough to pee through the catheter straight into the loo. I remember hearing the sound of pee going into the toilet for the first time in four years at the time, and it brought a smile to my face. I don't know whether that's just a nice satisfying human thing of hearing your own pee going into the toilet, but I hadn't heard it for so long that I felt like a patient, like pouring a big bag into the loo every time with a sploosh. This time I had this nice stream, and it was lovely, it felt refreshing. This sounds so weird to talk about. Crucially, the pee was flowing much more readily than the previous device I had. When it came to a stop, I assumed that there was a flow stop, and when I repositioned, there was nothing else in my bladder, so it was fully emptied the bladder. The way they do that is the technology is instead of two big holes. I think my size of catheter has 120 micro-holes, so the flow rate is coming through lots of small holes. They're big enough for sediment to drain through. They don't cause micro-traumas on the delicate bladder lining, which were previously, like, lovebites, traumatizing the lining, which was where bacteria was hiding. That was the fluttering that I was feeling, and every time you repositioned, what you're doing is repositioning on the old system. The bladder lining is getting sucked through the big holes into the catheter, like a popcorn exploding, but it's your own skin. When you reposition, you're shearing that skin off so that you're getting these little lovebites. That isn't happening with the Luja product that I use now. I spasm a lot less. Spasms are caused by pain, but I can't feel the pain, so they present it as your legs shaking. In some cases, so violently in the past, that I was thrown out of my wheelchair in a disabled loo by spasm, so lurching forwards with nothing to hold on to, which was a bad day. So these things aren't happening anymore, and because you're having a full clear out with less trauma, my reoccurring UTI’s plummeted, like, just for the first year down to zero, it was amazing.

Emma Russell 6:59
I'm just about to ask you about UTIs, and whether, are your urinary tract infections were an issue for you in first few years.

Pete Reed 7:06
Yeah, they were. I didn't understand why, is that normal?

Emma Russell 7:10
Usually, depending on what research you read, users can get sort of two to three UTIs on average a year. It is unfortunately one of those statistics, but we can do our best to reduce those. It's really important that you have that good education prior to teaching ISC, so that the nurse teaching you can talk you through the risks of UTIs, how you can alleviate these, getting the right product, and sticking to the right regime, because that's a lot of other users will struggle with, is sticking to their regime, and that's when you can put them into giving them UTI sometimes. So there's a lot of reasons why we get UTIs, and the main symptoms, you know, it can vary, but, you know, so that you were saying that sort of a shivery that, and, you know, not feeling well, bringing you down, hallucinations and temperature, smelly urine, cloudy urine. These are all sort of reasons, you know, the symptoms of a UTI.

Pete Reed 8:14
And they're horrible as well, are UTI people shouldn't think that it's just a bit of pain or stinging when you pee, or they shouldn't be shrugged off as cystitis. It's not a case of you’re dirty or disgusting or just drink more water or cranberry juice. That can help some people on the, on the left hand edge of the bell curve of UTIs, because they can be mild, but they can also be really severe. And what I was finding was increasingly, as they set in, not only do you get feverish, so sweaty, smelly as well as shaky, but you also have the indignity of voiding. So I know when they're coming because I'll just start peeing. If I'm in my wheelchair, or in uniform, or giving a talk, or with the great and the good, or at home with Jeanie, or looking after Fred, just at any time, you can just start dribbling. And that's when I know a UTI is coming. And there's an indignity in that as well, especially in the wheelchair. But for everybody, you don't want to be dribbling into your cushion and sitting in it. And I've had nights where it affects the way you think, really, and makes you despondent. It causes delirium in some cases. So you see that in some elderly people in hospital, but in young retired rowers as well, when you're in bed, you wake up and there's a wet patch. And the first thing you do is just get yourself into your wheelchair somehow, because you feel weak and lacking in energy as well, physically weak. And there are a few nights in my life where I've sat in my shower chair, just dribbling into the shower drain, not really knowing when it's going to stop. It's hot. UTIs are horrible. And they are, they're the worst thing about my spinal cord injury. It was having re-occurring UTIs.

Emma Russell 10:06
But you know, UTIs can happen to anybody. And that's sometimes be trigger to why people start having incontinence or need to go to their GPs so they need to be aware of those recurrent UTIs as maybe they're not emptying properly. Maybe they have got that obstruction.

Pete Reed 10:23
Maybe they're using a product that's not right for them either, and I'm not saying the Luja product that works for me will work for everybody. But getting the one that works for you is really important. So knowing that there are options that you can talk through with a GP and urology nurses, that's important as well. Knowing that you're not disgusting. It's happening to a lot of people, but it really is rough. And I think it's not the, maybe it's not the worst thing, but something that really bothers me is it makes me unreliable, which I hate. If I say I'm going to be somewhere and do something, I do it. And nobody likes putting up their hand at last minute and saying, I'm sorry, I can't be there. But I've got a UTI. Some people might not want to mention that anyway. They might make up another excuse, but no one likes to make excuses. But unfortunately, whatever it is, whoever it's for, whatever the occasion, if you start voiding, and the UTI sets in, you're not going. And it doesn't matter what, you're not going to sit in a car or a taxi or a train traveling, voiding, peeing, peeing, sweating, feeling horrible. Yeah, and I've had a few occasions in my life where I've had to call something, whether it's friends or professional way, you just say, I'm really sorry. In some cases, Sir, to the Navy Admiralty, I'm sorry, I can't be there. And cancel at the last minute. And it feels rubbish, especially when people have rolled out the red carpet and traveled all over the world in some cases for you, or as for someone you love as much as your wife or your son or your friends, it's horrible.

Emma Russell 11:57
So that sounds really difficult having to cancel on people and having to make plans, you know, making plans and then having to change it. Have you seen an improvement now?

Pete Reed 12:06
Enormous improvement, I think because my reoccurring UTIs, they're not reoccurring anymore. I have had the occasional UTI since starting Luja, but it's, it's few and far between like you would kind of hope for and below what the average is for people who self-catherterise. And that makes life extraordinarily easy. I mean, I still think about where I'm going to pee all the time every day because it's not just as normal as nipping into any pub or hotel or public toilets. It's not quite that easy, but where I'm going to pee that's an access and society problem that's outside the scope of this podcast and we can talk about that elsewhere. But the not having UTIs, yeah, it's, it's changed everything. I mean, it's given me more confidence. Well, we're doing this podcast. We're talking about this subject. It's, yeah, it is about wee and poo. We're talking about it very openly in a public space. Maybe five years ago, I wouldn't have had the confidence to talk about it. Maybe three years ago, as I was having these reoccurring UTIs, I wouldn't have the energy and inclination and it wouldn't have been a positive story. That was real hardship. I tried to navigate that space. But now, because of fewer UTIs, especially, I feel a lot healthier. If you have fewer UTIs as well, you've got your strength, you can do your rehab, you can get more exercise, you can be with family, you can be with your friends that you don't have to cancel on, you can do more work that you don't have to postpone or cancel on. And all of this is a self-fulfilling prophecy. And I think being able to talk about it with you is a real sign of joy and hope and an achievement. Actually, I feel quite proud that we're doing this and that I'm able to talk about it. Well, that feels hopeful to me for the future and hopefully gives hope to some of the others who catheterise or have problems with their incontinence, urology. Hopefully, it gives them something to look forward to as well. My career in the Navy, I rejoined in a wheelchair so it's called medically upgraded from being in rehab back into service. And I had a wonderful job. I was excited again, a career ahead of me that was starting to pan out after 20 years of spending too much time rowing. It was looking great. And it wasn't because of the wheelchair that I was medically discharged in the end, it was a very adult conversation of, I can't do this job and I can't see me having this career when I've got a week of having a UTI, a week of being on antibiotics, a week of being okay and at my desk and traveling and then another UTI comes to long. So it was, it was UTIs that cost me my career. If I had Luja four years before, there'd be less trauma to my bladder lining. I possibly wouldn't have lost my career in the Navy. The point here is Luja does exist. There are ways to get products to your door swiftly. And it's a really good time to need self to catheterise because there's more out there to help more people do more things. It's not a silver bullet, none of these things are, but it's progress in the right direction.

Emma Russell 15:15
Making life easier.

Pete Reed 15:16
Oh for sure. Well, yeah, making life easier.

Emma Russell 15:18
So you've navigated your life now, actually from being medically discharged to doing all these things you're doing now, it's absolutely great. What advice would you have for anybody that's out there that's maybe struggling with incontinence?

Pete Reed 15:32
Oh goodness. So firstly, don't give up. Don't think you're alone. Don't think you're disgusting. You’re not. It's far far more people than you would imagine deal with incontinence. Please don't suffer in silence. I think the first thing to do is if you have continent problems, or you're incontinence, even if it's just a little bit, go and see your GP, see your medical professionals, seek some help. You can go onto the Coloplast website to learn a little bit more and they'll be signposting to charities. So seek out charities. And it's only a quick internet search away of the charities that are available. I'm sure when we put the podcast out, there'll be a way that we can signpost people to things. But in the first instance, don't feel alone or horrible. See your GP recognise that there are products that can help you with your bladder and bowel management. Find the product that works for you as well. Just the one that works for me doesn't mean it's right for you. You've got your own condition, body, anatomy, urology, shape, sizes. So just like we don't all drive the same car, there are lots of things available. Do your research. We're here to help with that as well. And I think that's it. You know that, it's just a, take a leap of faith and don't suffer in silence. Know that there's a spectrum of continent's issues. And if you're leaking or if you can't feel that you need to pee or if you can't pee, if you're in retention or you can't sit on the toilet and go speak to somebody. I can't stress that enough because you have every right to a lead a normal healthy life in that space, a normal and healthy. Like I've tried to say can mean self-catheterising or can it can mean having a stoma or using a perestine product. It's not disgusting. It's normal life for me now. And actually, even though people will be shocked by some of the content in this podcast, I have a lovely life. I'm really lucky. I lead a normal life. I use the loo. Not like everybody does, but I use the loo. I'm healthy. Home is great. Professional’s great. There are challenges always, but then normal challenges. And it's not related to this subject. And I hope people can take some confidence from that.

Emma Russell 17:54
So Pete, we've touched on interest in self-catheterisation. We've talked about perestine, the transanal irrigation. But also there are other options out there. What else are you going to be discussing in these podcasts?

Pete Reed 18:08
Something else we need to touch on is stoma options, for me and for other people as well. A stoma is it's an operation where part of your colon or higher up in your digestive system, a part of your body comes out of your body as the stoma, and then effectively pooing into a bag. And we see that quite a lot on social media now. There are lots of influencers showing off their stoma bags and talking about it. And it's become very normal and natural, so it proves that conversation normalises these things. But for me, while I irrigate at the moment, I use the perestine product from Coloplast to sit over a loo everyday and make sure I'm fully cleaned out. An option for me going forward and I've been considering it for a couple of years now is having an elective surgery to have a stoma because there are parts of that that would free up my life enormously, not having to think too much about where I sit on a loo. I wouldn't at all really. I'd just be changing a stoma bag. It's clean, it's no fuss. There are medical advancements in that area as well. I'm learning a lot about it and it's something we can talk about in other episodes of this podcast and I'm happy to do so. But that's a process that's ongoing with me. What's right for me and the family at the moment? What's right for me isn't necessarily the same as what's right for everybody else, but I would like to make a really informed decision at a time that suits me and Jeanie and Fred, the most important people in my life.

Emma Russell 19:34
I think that's really important because actually the stoma is the tip of the pyramid on long treatment options. Whilst you're sitting nicely with your perestine, and it's suiting you, it's probably the best way to go at the moment.

Pete Reed 19:49
Thanks, that confidence, Bees. I've heard really good things from people with spinal cord injuries in particular about changing to having a stoma. I think it would give me a new lease of life in lots of areas, especially travel, actually not having to rely on finding accessible wet rooms and hotels every time, but whilst I've got a little boy sitting on my lap kicking and pulling everything, I just... Yeah, it's a process. And I'll sit down and talk to you about it at length on the podcast and offline as well. There are professionals that can help guide me through that process. And that's ongoing. If I think throughout the course of this series we'll discuss more with you as well Emma, but with microbiologists, we'll talk about antibiotics. We'll talk about stomas. We'll talk about perestine at length a little bit more, but I think maybe I can just round off by saying what a pleasure it is to get started in this podcast series with you. And thank you for being here to make sure I get my big words right, to bring your expertise, to share a little bit of behind the scenes about how the healthcare professionals learn about this stuff, to help patients who are hearing it for the first time today as they're listening to this. And thank you for giving me the confidence as well to share some of my more personal things. It's been easy for me in the past to talk about wheelchairs on the back of rowing and paralysis and spinal cord injury. And because of that loo taboo, it's been harder to talk about, weeing and pooing and those personal bodily functions, how mechanically they work for me on a daily basis. And I really appreciate that you're hand holding and support to get started in a really positive way in this podcast series. So thank you very much for coming in.

Emma Russell 21:36
Thank you very much for having me. It's been an absolute pleasure and hopefully we can break that loot a boo.

Hannah Paterson 21:41
On our next episode, Pete talks to consultant microbiologist, Dr. Carmel Curtis, to find out more about urinary tract infection. 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. I remember to consult your GP if you have any worries about your own continence.