Season Seven, Episode Six: Peristeen Plus Introduction

Narrator: This podcast is intended to support UK healthcare professionals with education. The information provided in this podcast is not a substitute for professional medical advice or treatment, and patients are encouraged to consult healthcare providers, including nurses, for any medical questions or concerns. Interview Hannah: Welcome to stoma and continence conversations from Coloplast Professional where health care professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Patterson, I've worked in specialist care and I'm currently the Ostomy Care Associate Education Manager at Coloplast. This time, we're talking all things Peristeen Plus. Laura: Even thinking back to like, oh, you go out with the family, but we need to go somewhere where there's a toilet nearby, just in case. And then looking now to, with the Peristeen, I'm back in control now. Monica: Had Peristeen been offered to me at a younger age, I definitely would have used it. And there is a bit of a taboo in this country, but I tell you what, if when I was a teenager, if I had been offered it, if I thought it would have given me the life back that it does now, I would say that everyone at every age should take it. Hannah: Today I'm joined by two of my colleagues, Laura McLaughlin and Carly Cheshire, and then I'm joined by a Coloplast ambassador, Monica. So I'll allow them to introduce themselves first before we go any further. Laura, I'm going to start with you. Thank you for joining me. Laura: I'm Laura. I am a Coloplast employee. I've worked with Coloplast for seven years and ostomy industry for nearly twenty two years, but I also have MS, and I'm a Coloplast Ambassador. Carly: Hello, my name is Carly Cheshire. I've been working for Coloplast for the last eight years and the last six I have focused on predominantly looking after Peristeen Plus patients. So my background is that I'm a bowel nurse specialist. Monica: Hey, I'm Monica. I run a personal training business. I'm a really keen runner and I am a Peristeen Plus ambassador for Coloplast. I have a condition called Ehlers Danlos syndrome and I have been a Peristeen user for about three years now. Hannah: Fantastic. Well, I say thank you all so much for joining me. I really, really appreciate you taking your time with me today. I really just wanted to talk through, because some of our listeners may not have even heard of Peristeen or be aware of what Peristeen is and really the benefits it can have for people. So really just want to have a bit of a chat with you. Obviously, you're all looking at things from very, very different perspectives here. Laura, Monica, you've got quite different conditions for the reason that you use it and obviously Carly, you probably support, again, very, very different patients. So I suppose my first question to you really, Carly, is what is the difference between Peristine Plus and other maybe trans anal irrigation systems that are out there? Carly: Okay, so Peristeen Plus is a transanal irrigation. So it's something that's, which is designed for a higher water volume irrigation. So it starts at about three hundred mls of water, and the maximum for Peristeen Plus is one thousand mls of water. What differentiates Peristeen Plus from other, systems on the market is it's the only system available on the market currently that has full NICE guidance approval and accreditation. So that's the National Institute for Health and Care Excellence, which is a really high process of testing for safety and effectiveness and cost holistically. So it's had the most clinical documentation written on it than any other device out there at the minute. So it's a really tried and tested piece of kit basically. Hannah: I know we always keep referring to Peristeen Plus, so this is like the next generation isn't it? So we've had Peristeen and so how long has Peristeen Plus been around and how does that differentiate from the original Peristeen? Carly: The two systems are very similar. We don't manufacture the Peristeen original anymore. The Peristeen Plus is just like the new generation, a bit like a car upgrade. It turned out with a nicer toiletry bag and, it's turquoise and grey now. It was navy and grey before. And the things that we really focused on was the key differences were that the connectors that connect the tube into the machine are now a bit easier and more robust to use. We'd listen to patient feedback and some patients were feeding back that they found the previous connectors a little fiddly. So the connectors are a lot more user friendly now, the same as the dial, as well. The dial is a bit more higher, so it's easier for people, particularly with. Any issues with their hands to grip and turn the symbols are much more intuitive as well. They're in the same place on the dial as they always were, but they're a lot more intuitive now. So you've got water drops for your water, for example, little things like that. And then the other thing is the water bag has got like a temperature dot on it. So. We always say we want to have nice warm water for irrigating, the bowel doesn't like cold water, and for people that are maybe not sure, is it tepid, is it lukewarm, I always say when I'm training patients it's a baby's bath temperature, it's a bit warmer than lukewarm. We want it around body temperature so we don't stress out the bowel when the water goes in. But basically we've got a temperature dot now on the front of the bag, which is great because that will flash to green. Green's for go. If it stays on blue, then you're a little bit on the chilly side. And if it goes over to red, your water's a little bit hot, so it will flash and indicate that it doesn't stay on that color. It'll just indicate that when you're first filling up the water bag, they're the main differentiations really with Peristeen Plus and the original Peristeen. Hannah: Laura and Monica, were you both users of the original Peristeen and then you've gone on to the Peristeen Plus or were you both straight in on the Plus? Monica: So I personally started on the Peristeen Plus, I was listening to Carly there and her saying that the grey and the turquoise is newer packaging and that's the only product I've ever used so I assume I wasn't part of the gang when, the original Peristeen was around. Hannah: Fantastic. How about you, Laura? Laura: Yeah, so I was an original user. I've gone from the original to Peristeen Plus and I love the additional features. With MS, you can't always tell the temperature. So I haven't got that necessarily. I can put my hands in water and I don't necessarily feel how warm or cold it is. So they have a gauge there to make sure that it is the right temperature. It makes a massive difference. Hannah: So I'm going to look more now, Monica and Laura, about your conditions and what brought your conditions to you needing to use Peristeen. So what was the symptoms in your runner to then go down the Peristeen route? So, Laura, let's start with you there. Laura: Well I was diagnosed with MS back in 2006 and I guess actually the issues with all of the research that you read, it's all around fatigue, it's around numbness, it's around speech, eyesight, but nothing around, your bowels or your bladder or anything like that. So my delay in going to the toilet, if you like, it got further and further and further but to the point where I didn't actually realise that it was getting any worse because it was just right for me, that was my normal. So it got to the point, I mean, I go to see my nurse and she'd be like, oh, so how's your vision, how's your swallow, how's your speech, blah, blah, blah. How's your bowel? How's your bladder? So for me, it's just like, yeah, yeah, yeah, it's fine. It wasn't until around 2013, I started taking laxatives, I was going up to a week, sometimes even longer than that without going, of which, you know, the laxatives are just horrendous. I had all sorts of horrendous experiences using those. And it wasn't until then that I started talking about it with my nurse saying, can you help me? That's when I started on the paracetamol. Hannah: Okay, lovely. And how about yourself, Monica? Monica: So I had slow transit bowel symptoms from about the age of maybe about eight throughout up until I was about my early 20s. It was always just put down as slow transit constipation, but I would end up in hospital numerous times a year with And similarly to Laura, I was given by the GP and doctors just lots and lots of different laxatives. Got to a stage where I was taking five or six dulcolax a day, senna, movicol, lactulose, taking picolax, which I think is like a thing you give patients before they're having bowel surgery. It's a real clearer and still just wasn't having consistent bowel movements. And then I was, I think three, four years ago now, diagnosed with something called Ehlers Danlos Syndrome, which most people, if you do know what that condition is, most people associate it with hypermobility and how it affects the MSK symptoms of your body. So people think it's black skin. joint instability, but a huge, huge part of the condition is slow transit bowels. And it's essentially because my body doesn't produce collagen. I don't have that squeeze to cause peristalsis to happen. So it's, everything's very relaxed and isn't very tight. I initially started on a different irrigation system. Because my bowel nurse at the time was really good. She said try this one, which unfortunately didn't really do much for me at all. And then it was only, as I say, about two or three years ago, I was, well it was on a off the cusp conversation. One of the nurses said, oh, well, I assume you've used Peristeen. I assume you've used this. And I said, well, no, I haven't. Let's give it a try. And yeah, it's been one of the main reasons as to why I'm still up until now, not had to have any major surgery, but it really has kept me being able to go. Hannah: Don't you say that that's really kept you away from surgery because I will just add at this point here everyone that Monica is a personal trainer so she doesn't take life easy or slow down because of the use of Peristeen or the elistan loss system. So the fact that you carry on going the way you are. I think it's a real testament to how well Peristeen has worked for you. The fact you are able to keep up such an active lifestyle and things like that. I think he's a real testament to that. Carly, would these be the patients that you would normally see? Patients that have had a bit of a rollercoaster to get there? I mean, both Laura and Monica there mentioned laxatives in the run up. Is that a normal thing you'd see? Carly: Yeah, definitely, Hannah. The thing that is frustrating for me, actually, when I see my patients in my working life is that we have this pyramid of the way that we operate with the healthcare system in this country, that we start very much with conservative management and things like Peristeen and medical devices tend to be offered really as almost a like a last resort before we're thinking about a surgical intervention. And for me, it's so frustrating because when people don't encounter these devices until later on in their health journey, other damage has occurred because it's never one thing with the bowels. So you have an initial problem, which could be neurogenic or could be functional and would be either constipation, or it could be soiling urgency, but then when you're not evacuating properly for a really long period of time, it causes all sorts of what I like to see as mechanical issues at the lower end of your bowel. So things like extra strain on the anal sphincter, hemorrhoids, issues with your rectal dysnergia, which is like a rexhole problem when you're actually trying to evacuate. And it can cause real like sphincter damage. It can cause people to start to develop prolapses internally, such as erectocele. And all of that really is like wear and tear. It's like driving a car. with a broken component for another five years, you're going to have even more issues with the car by the end of it. And it's so like that. And it's such a shame. And I think that within communities like, for example, MS, where we've got specialist nurses that are out there that they are now starting to identify and screen patients of bladder and bowel issues as part of their holistic care. Lots of patients are now starting to access support earlier. But when we listen to patients like Monica that have had this history of slow transit constipation, it's very often the same story. And it's such a shame because the thing is long term laxative use, people will build up a resistance to laxatives and they'll need higher and higher doses to get the same result as they initially got with their lower dose. And what I love about Peristeen Plus is that it's just water. You can't, it doesn't contraindicate with any other medicine. You can't build up a resistance to it. So from my perspective, the sooner we can intervene with something like Peristeen Plus, the better because then we can start regulating the toileting and stop the bowel from getting further damage from straining and from incomplete evacuation, and different things like that. Hannah: I've spoke to a lot of our ambassadors then asked me about this and it's that selling options as a last resort. When it's not always a last resort. It's sometimes the best resort and yeah, it seems like this is exactly what's happening almost with this as well that irrigation is seen as a last resort rather than actually maybe it should be further up there. Carly: I agree. And I think it's a British thing, Hannah. I think we're a little bit stuffy about bums and poo in this country. The poo to bums. Italy, for example, very forward thinking with things like irrigation. I mean, Peristeen Plus is licensed for children. see a lot of children in my practice and it's actually licensed for children from about the age of two, but it's only going to be specialists, maybe more forward thinking centres that are going to start intervening with children at an earlier age. And I think that some of that is just a little bit of our British. mentality. I think we are getting a lot more forward thinking with it. I think it's becoming a lot more popular. It's only really been used in this country for the last twenty years. So I think that specialist bowel centres, specialist nurses are now really starting to get more clued up and they're offering irrigation. We're getting a lot of good pelvic health physios and And different things like that really good MDT, different multidisciplinary teams that are now much more aware, but it does still remain quite a specialist thing that so children, for example, that are attending their GP regularly, mum saying, they're not pooing, they're pooing once a week, and I have to get them in the bath to try and warm their tummies up and things like that, they're still very much going down a conservative route. And people that haven't got like a real definitive chronic illness or a spinal cord injury or some proper diagnosis at a very young age, people are getting missed. And I think that Monica's story is very true for other people that I've met as adults that are dealing with EDS. It's something that wasn't really picked up. It wasn't, there's an underdiagnosis of it. And I think that's a real pity because those types of people really struggle for a long time, but I think the awareness is getting better and I think that we are progressing definitely with it. And I think particularly in the fields of like, the spinal community, the MS community, things like that, there is definitely a lot more forward thinking approach. I think we've got a long way to come with our idiopathic constipations, where we don't really know of an underlying cause or we don't think there's an underlying cause, or there's not enough knowledge about the underlying cause. I think we've got a little way to come and it's a shame because I just wish that a lot of people had the option to do this earlier in their health journey, because I think that it prevents them further issues along the line, really. Hannah: Yeah, think about what you said there, Laura, Monica, would you have both said you wish you'd been offered it earlier in your journeys? Monica: I absolutely would, as I say, I really struggled for about twenty years having to take the line of laxatives. And I did try everything from, Carly was saying this specialist pelvic floor physios, I tried all of that. I had all of those lines of treatment. And the issue with long term laxative use is things, I should say, the other side effects such as man absorption issues, the fact that it can cause other damage and one hundred percent had Peristeen been offered to me at a younger age, I definitely would have used it. And, there is a bit of a taboo in this country, but I tell you what, if when I was a teenager, if I had been offered it, if I thought it would have given me the life back that it does now, I would say that everyone at every age should take it. Hannah: Yeah. And I know you said yes as well. Well, Laura, so do you echo a lot of what Monica said then that you might have been able to have a smoother journey? Laura: Absolutely. Cause I mean, it took around ten years for me to be, well, a point of recognising the symptoms to actually being offered Peristeen. And then, in the meantime, it was affecting my quality of life at the day. I'm taking laxatives. I was a keen runner. So, if I was going out running and I had to make sure, can we do a bush route run today? Cause what's going to happen? I will call in my manager at work, say, I'm really sorry. I've got to go home because, the unthinkable has happened. Just say the embarrassment more than anything else, because, it is embarrassing. And, even thinking back to like, oh, you go out with the family, but we need to go somewhere where there's a toilet nearby, just in case. And then looking now to, with the Peristeen, I'm back in control now. Because I know that if I've used the Peristeen, I know that I can go out and be absolutely fine. Hannah: Coloplast Plus Professional offers a lot of educational material for specialists, nurses and healthcare professionals. Visit coloplastplusprofessional.co.uk to find out more. So looking to both your Peristeen usages, how often do you use peristine then, Laura? Laura: Every other day. every other day. Hannah: How about you, Monica? Monica: So I use it every day. Hannah: And again, can I just look at you, is that quite normal that some patients, they almost titrate it to what their own personal preference, their own personal conditions, is that something that would happen? Carly: Yeah I mean the key to good irrigation is consistency, it's consistent use. With a high volume irrigation, we're not looking at ad hoc use, because you can't ad hoc put a litre of water into your bowel, there's not space. So, it, is very much dependent on consistent use as a rule of thumb, but for adults, if they're getting about five hundred mils in, they can look at going to an alternate day routines and averagely adults are irrigating with around seven, eight mils. So for that sort of amount, we can go to an alternate day routine because it's gone high enough in the descending colon that it would take forty eight hours for the bowel to re deliver to the left side. People that are doing say five hundred mils. or below because they're not able to tolerate the higher volumes that could be for many reasons it could be to do with strength of the sphincters it could be to do with pelvic floor strength multiple reasons if they're doing say five hundred or below so between say three and five hundred. They might stick to a daily routine and also people that are maybe worried about soiling and incontinence. They might just feel better with a daily routine. There's nothing wrong with you with doing daily or alternate days. We don't normally suggest less than alternate days. Because you just want to keep up that consistency of evacuating regularly, really with the Peristeen, but we don't recommend irrigating more than once a day because obviously that can cause too much stimulation to the bowel. But yeah, so daily alternate days of both. Great routines with Peristeen. Hannah: And how long does it take you both to irrigate? So thinking of the fact that one of you's daily and one's every other day, Laura, how long would it take you when you do it alternate days? Laura: Oh, I would say no more than 10, 15 minutes maybe. Hannah: Wow. And how about yourself, Monica? Monica: I find it really just depends. Like, so the one thing that I really struggle with my condition, is that, for no odd reason, some days I will have a good bowel day and some days I have a bad bowel day. And on a good day, like Laura said, it literally might be ten minutes in and out job and I feel like I've had a full irrigation. Other days, for some reason, I will send all the water in and for some reason my bowels just don't want to send it back out and that can be really uncomfortable. I will have huge distention of my tummy. And it's incredibly painful. It makes you feel very lethargic. And that sometimes can, it can take like an hour of me getting up, going for a walk, thinking, oh God, I need to go back, get up, go for a walk. But yeah, so for me, it really, really varies just depending on how my bowels are doing. Laura: And that's reassuring to hear as well, because I've had that, where you are putting it in but not coming out and it's the worst thing ever because you just you want to sort of push your tummy hard I'm sure that's not recommended. Hannah: Guarantee, I'm guessing from both of you when you've had those experiences where it's taken longer It's normally when you've got something else planned afterwards where you're having to almost being a semi rush. If you've got all the time in the world to do your irrigation, it'd happen simply as anything. Which Monica: Which is why, so Carly was saying a really important thing is that we have regular timings for the irrigation. What I would say along with that is that you have to really treasure that time and that is precious time. No one is allowed to distract you in that time because things like if someone's, on the other side of the door, going like, oh, you've got ten minutes, we've got to go out. That really, stressing your bowels out is the worst thing you can do. You have to try and put yourself in a relaxation. Like, I would admit, I sit and watch silly YouTube videos on my phone whilst I'm doing it, because it's the only thing that seems to keep me chilled. Hannah: It likens me to when I used to have to change my stoma bag. If somebody was like pushing me or anything like that, you can guarantee my stoma would be working left, right and centre while I was trying to change it. It'd be like firing on all cylinders. If I had complete peace and quiet where I could just get on and do it. I could do the whole change within about five minutes without any problem at all. But second, like you say, Monica, I did have to laugh when you were saying that. If I say something like, we're going out in ten minutes, you can guarantee that'll be the point where they say, your bowels go, you reckon.

Monica: Exactly. Hannah: As I said at the very start of the podcast there, a lot of people probably aren't even aware of Peristeen Plus, there may be nurses out there listening, thinking. This might be something that's suitable for my patient. What is the best thing that they then do, Carly, from that point of view? Carly: I would say that if nurses are feeling that Peristeen is something that might help with with their patients. And the thing with Peristeen, it works on both ends of the spectrum. It works for patients that have got either a functional or neurological reason that they're constipated and they can't evacuate or that they are soiling, urgency, frequency, whatever. The best thing they can do is reach out to their Peristeen advisor and if they're not sure who that is if they contact Coloplast or Coloplast charter we will be able to get them in the right direction. And one of our Peristeen advisors would be able to make contact with them and really just advise them, go through, give them any training on Peristeen if they needed it or whatever. So they would be able to identify the right type of patients for it. It's quite a diverse group of patients that can use Peristeen, but yeah, and they'd obviously go through any red flags or contraindications. which is normally around people that have got any inflammatory disorder with their bowel, then they wouldn't be suitable for Peristeen Plus. But that's something they could reach out to their local Peristeen advisor. We do require a referral from either a specialist nurse or from a specialist doctor for Peristeen Plus, but we'd be able to just guide them through that process. And just quickly touching back on what Monica and Laura were just saying about their timings. We do say about half an hour to allow for irrigation, but I always say to patients, once that water's come out, fifteen minutes and see where we are. But what they were both saying is so, so true. Sometimes our bowel is just lying in a different position internally. And sometimes our bodies just do different things. Our immune system can, our connective tissues or just this and that. And sometimes it can take longer for the water to come out. It depends sometimes where it's gone or whether it's gone into like a little pocket. And I always. suggest to people this exactly the stuff that Monica's doing is like maybe just get up, stay near your loo, but move around a lot, lots of rocking or tummy massage right to left. Just move around and hopefully then that water will come down. What goes up must come down. The body can absorb from water. If it stayed in there, but we wouldn't want people to just be retaining lots of water on an alternate or a daily basis because that would make them feel really quite bloated and stuff like that. My advice as well to a patient, if they were retaining water quite regularly, would probably look at just lowering the volume a little bit, but I can see why. And with EDS, it's very much, it can be very, the consistency of how the bowels react, I know, can be a little bit a mind of its own at times, can't it, Monica? Monica: So, it's very bespoke for each person doing it, but I mean, we're all individuals, aren't we? So, that's how it goes. But I always think half an hour to escape into the bathroom and hide from everybody is never a bad thing. And it doesn't matter when it is either, I always say to people, just fit it into a time of day that works for you. It's your lifestyle, it's your life and stick to a similar time of day because the bowels, oh, they love a routine, even though they give us, keep us on our toes at times, but they do love a routine, even though they give us jip. Outro

Hannah: Thank you all so so much for joining me. It's been great listening to you all. And I feel like I've learned something today. I really, really do. So thank you from my point of view as well. Because obviously I've heard of Peristeen Plus, but to hear, well, quite literally the ins and outs today, it's been really, really interesting. So thank you and we'll see everybody next time. Thank you for listening. To see more of the wide variety of education we offer, please visit coloplastplusprofessional.co.uk. See you next time. Narrator: Stoma and Continence Conversations is a Vibrant Sound Media production for Coloplast Professional.