Season Seven Episode Three: Colostomy UK Rugby League Team 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 Paterson: Welcome to Stoma and Continence Conversations from Coloplast Professional, where healthcare professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Paterson. I've worked in specialist care and I'm currently the ostomy care associate education manager at Coloplast. This time we're exploring how people living with a stoma can continue to participate in contact sports and I'm joined by members of the Colostomy UK Rugby League team. Gio: What better way could there be to like challenge and change those perceptions, but also potentially encourage people to get active as well, than like having a rugby league team predominantly made up of people living with Stoma’s. Hannah Gagen: It's not just the physical thing. It's that camaraderie you get from it. Tom Kaye: Rugby’s like life. You get knocked down, you get back up. You're not always on the winning side. Sometimes you've got to claw your way back a little bit. Hannah Gagen: My body's stronger. I'm able to do weights. I'm able to be at the gym. I'm able to do that stuff. And that is just more precious to me than I can ever really explain. Hannah Paterson: I'm really, really excited today. I've actually got three guests with me today. I'm going to start off by bringing my first guest in. It's another Hannah, so this could get quite confusing at some point. So Hannah, if you'd like to introduce yourself, please. Hannah Gagen: Hello, Hannah. I am Hannah Gagan. I work for Coloplast. I'm head of government affairs and patient advocacy, but I also have a Stoma and I'm a bit of intrudence to this conversation, but I have been on the same field, field or pitch as Tom, let's call it a big old green space. And don't worry, Giovanni can take all of the mick out of me for getting all my terminology wrong for the next twenty five minutes. Hannah Paterson: So Hannah has given a bit of a clue there as to who we've got. So we've got Giovanni and Tom with us who are part of Colostomy UK, the rugby team. I'm going to ask Giovanni to do a little introduction to himself first, if you wouldn't mind, Giovanni. Gio: Hi Hannah, yes, I'm Giovanni. I'm the Marketing and Campaigns Manager at Colostomy UK and I'm also, though Tom will laugh at this, the Team Manager for Team Colostomy UK Rugby League. Hannah Paterson: He's not laughing, I'm sure. So, Tom, if you'd like to introduce yourself as well. Tom Kaye: I’m Tom. I am a player of the Colostomy UK and I am also Giovanni's keeper. Hannah Paterson: Is that officially in your job title, Tom? Tom Kaye: Yeah, I have to babysit him a couple of days a week. Hannah Paterson: So, guys, I'm so excited for this discussion. I've been watching you quite closely on social media and things like that, and obviously I've spoken with Hannah after she came and joined you guys on the pitch. So, I don’t know who's gonna be best placed to tell me this. How did colostomy UK the rugby team start? [00:03:01] Gio: I used to work for the Rugby football league, in South London before I worked for Colostomy UK. And when I joined the charity back in 2015 and, one of the first things that I noticed it was obviously those negative perceptions that can exist a lot in society around I guess Stoma’s being life limiting and also soon discovered a lot of research, a lot of evidence that there's a lot of barriers to people with a Stoma being active. You know, some of them psychological, some of them physical. After a while, I just thought what better way could there be to challenge and change those perceptions, but also potentially encourage people to get active as well. Than having a rugby league team, predominantly made up of people living with Stoma’s playing what is a collision sport like rugby league. So the idea sat in my head for maybe a year or so. And then I think it was midway through 2017. I thought, well, let's give this a go. So we put a little shout out on Colostomy UK social media and Free of Tidings magazine just to see if anyone would be interested in seeing if we could put together an ostomate based rugby league team. First person who actually got in touch was a guy called Cav Ellison and I don't think it would have happened without Cav and so much of our success after that has been down to him but I think rushing through the story we managed to cobble together enough players to make our debut against Medway Dragons that was in the July 2018 down in Kent and to be honest not sure if it's the right word it's just been slightly bonkers. Since then ,in a positive way each year that awareness of us as a team has grown to the extent where I would struggle to say that there's been a better stoma awareness campaign than team Colostomy UK in terms of going out there. a bold statement by our standby that in terms of that consistent positive messaging that's hit mainstream media to the extent of where we're now that we're being interviewed by Coloplast for their podcast. So it's obviously going all right. Hannah Paterson: It doesn't get any better, does it? Than being on a podcast. Hannah Gagen: Dizzy heights. Hannah Paterson: Dizzy Heights of the podcast. No, it so great because like you say, there are so many common misconceptions around having a stoma, stoma being life limiting, and especially when it comes to things like a contact sport and you don't get much more contact than Rugby, really. I mean, I do watch a bit of rugby myself and yeah, you don't get much more contact than that. And so, Tom, how did you come to be involved? Tom Kaye: My ex partner, she come across an advert when Giovanni arranged a fixture against PDRL. PDRL United, was it? Or Featherstone. which is not far from where I live. This is probably why I do what I do for the charity. My perception of a bad guy, [a]I had a reversal when I was sixteen . Such a negative opinion of it, self esteem, like literally rock bottom. And when I had it back on through no choice of my own, I carried that with me and then I just got referenced to play and from that game, snowballed and I've, become the person I am today, really. Hannah Paterson: It is that empowerment, isn't it? And especially, it turns out for yourself, Tom, you came from such an active background prior to your stoma that it really took away from you. So actually, Colostomy UK has really brought you back part of what was your big thing prior to having your stoma as well. Tom Kaye: Yeah, the rugby's in my blood. My brother played professional, semi professional, my dad played semi professional. I was a good player when I was younger and it's the condition limited that of my participation levels. So, hence probably another reason why I had a negative opinion of Stoma’s and Colostomy bags. Hannah Paterson: So Hannah, I've got to ask, how on earth did you manage to get yourself involved with all of this? Hannah Gagen: I fought for a really long time not to have a stoma. I wanted an internal pouch. That was what the original surgery was from Crohn's and Colitis. It was like, that's what I was meant to get. And for a year I was in hospital and I had multiple, multiple operations, and I became like a former shadow of myself. I literally went in at like eighteen stone on steroids and came out at about six or seven stone in a wheelchair. I, you know, I was active before, but actually one of the things that I say to people about having a stoma is it wasn't just about regaining what I did before. I've done so much more since I've had a stoma. Like I know we are talking about rugby and saying it's a super contact sport. You should see our netball games. You know what I mean, there's definitely contest in there. It's not just contact. There's a lot of contest. And I think the reason why is I was like, I always preach to people that you should get out and try new things and do new things, put yourself outside your comfort zone. And although I swim and run and play netball, I was like rugby was something to me that was going to be a real challenge because yeah, I was like, can I really do a sport like that? And I thought, well, put my money where my mouth is. So I said to Gio, yeah, I'll have a go. And, I did I did it really badly. So, Gio pulled me off pretty early, but you know what, we got some good social media and I got to meet, Tom and the rest of the team and got a couple of decent blisters off the back of it, which I'm still nursing months later. Hannah Paterson: So how often do you play at the moment? Gio: So we aim to play like five, six, seven games a year. And the reason behind that is because Team Colostomy UK is, if you like, an awareness campaign, the aim is to create an impact around each match. And if we play every week, every month, it just becomes like another game, if you like. So it might not look it, but there is like a strategic element to all the games that we play. You're wanting to raise as much publicity and create as much coverage as possible. So you're then either looking at creating that by who you're playing against, where you're playing or why you're playing. So it could be geographical location. For example, for the last couple of years up in Batley and West Yorkshire, we've played curtain raisers to their professional games against the British Asian Rugby Association. And then the idea behind that is to help us as a wider charity to start to raise that awareness of us in South Asian communities. through the publicity that that's generating. So yeah, because of that strategic element, it will always be five or six games a year, though that will increase next year because we're obviously adding to new teams in women's and wheelchair sites as well. So you're probably then looking at across all the three, maybe ten to fifteen next year. Hannah Paterson: I'm sure Hannah's going to be your first signing to the female team, is she not? Hannah Gagen: Quite possibly. I've been doing my research, I even know the difference between league and union now, I'm on it. Gio: And you know that, of course, we are a rugby league team. A rugby team? Hannah Gagen: I know you're a league team, I know, I know. Hannah Paterson: So this is going to get me to ask a bit of a personal question. So Hannah knows, and I know a lot of the listeners out there know, I am actually the owner of an internal pouch, an owner of a J pouch. So I know that you say it’s a charity and most of your players have stoma’s. Would I be welcome to join Hannah on the pitch as another player? Gio: Of course you would. Everyone's welcome regardless of age, experience, whether you have a stoma, a J pouch, IBD, none of the above, but just want to play because you'd like to help us raise awareness. Yeah, everyone is more than welcome. Hannah Paterson: Oh, there you go, Hannah. I will probably be the most useless person on the pitch then at that point. Oh, I'll compete. Hannah Gagen: Oh, I'll compete for that trophy. It was honestly, like, seeing Tom and the rest of the team play was brilliant. Like, the stand, I mean, like I said, I'm not an expert, but the stand, I was like, oh my God, this is impact. Do you know what I mean? It was brilliant. It was fast. It was, like, rough. It was joyous. It was brilliant. Like, fully recommend. If you're not going to play, then go and see it, to be fair. So, from Colplast perspective, we're delighted to be supporting it. We were a little bit late to the game, but what Gio and Tom and the team is doing is, is brilliant. So, full respect. Hannah Paterson:. So, Tom, from your perspective, you've been playing for them for a while now, and it initially started up in your own backyard, up in Yorkshire. Do you go all over now and play, or do you try and stay around your own area more? Tom Kaye: It's a really tough one, if I'm being honest, because Rugby League, known as like, the northern sport, it has teams down south, but we get a lot of publicity from my part of the world. We do get fixtures working more towards the south, got one pending next year already, but we get a lot of exposure from the north, due to the nature of the game, where it's being played, and the majority of the focus is up here. But yeah, we've got some good plans for next year, with Giovanni, not trying to spoil any news that might come out. So yeah, we're looking to branch those games wider than the M62 corridor, as it's called. So yeah, we're looking to get more and more people involved, more and more teams, like I say, with the women in the wheelchair. It's looking good for the next couple of years anyway. Hannah Paterson: So how can people find out where the fixtures are? So if they wanted to come along and support, how would they find out where your fixtures are? Gio: Yeah, we try and schedule our fixture announcements out. It's just the idea that we might be creating a little bit of excitement if we do them one at a time rather than just go, here's our fixtures for the year. It also might be because I'm a bit rubbish at organising and it takes me a while to sort all the games out. So we're on X, previously known as Twitter and Instagram @ Team Colostomy UK. And if you go to the. Clostomyuk.org website as well and click on Team Clostomy UK then all our latest news and player profiles and fixtures are on there now. We've got one game left to go this year which we'll talk about that geographical expanse. We're playing our first game in Wales on the 28th of October in Port Talbot. We're playing against Aberavon Fighting Irish and it's a curtain raiser to the England Lionhearts against Welsh Dragonhearts international game. So, that's our last one of this year and then because we try and tie our games in as much as possible to play curtain raisers to professional team matches our fixtures announcements will probably start appearing like December this year, January next year. Hannah Paterson: And what we've got is we have got the links for all your social medias and your website in the podcast description there as well so people can have a look and have a follow and keep an eye on where things are. So you say you play a lot of so how do you find these not just Your picture is where you're going to become the curtain raisers, but also your opposition as well. How do you seek those sorts of things out? Gio: In a good way, it's getting more challenging each year because I think when we started off, we our standard was all wrong. I mean, I used to play a bit of rugby league in my past and I've described what Tom's going to laugh at a shaking his head and I would describe myself as a below average prop when I played and Hannah Paterson: That sounds like a bad night out, doesn't it? Gio: Yeah, if someone gives me the ball, I can run at people at the people running straight at me. probably tackle them, but if they're a half a foot to the left or the right, because I'm so flat footed, I've got no agility at all. They're gone. Hannah Gagen: It’s flat footed. Is that what is it Giovanni? Gio: Yeah. Yeah. Yeah, absolutely. That's, the best quote ever. I'll take that as a submarine, but as we've grown on. The standard of rugby league that we play is actually getting better and better. And because that's partly because we're spending more time together, it's also because we're attracting better players with stoma’s. And it's also because if you look at Tom as an example, Back in 2018, he came along and played for us. That was his first exposure to rugby league for a long time. The confidence that he's got from playing for us means that he now plays on a regular basis as well for the physical disability rugby league team at Leeds Rhinos, which is a really good standard of PDRL. Other of our players who live in that region, Ryan, Liam. Jamie, have also gone on and followed Tom to play for Leeds Rhinos PDRL as well. So they're playing a good standard of rugby every week, which has made them better players. So, we want to be able to tell a story and that story. So the next game that we've got coming up, playing against Aberavon fighting Irish. We've got five Welsh players on our team, three of them play for the Aberavon club. They've been massively supportive of us in terms of raising awareness. So it just makes sense for our first game to be in Wales, which we've been trying to for the last few years to be able to give that game to Aberavon, we had a meeting about the game yesterday evening and on the back of playing against us, Aberavon are looking at setting up a physical disability team next year, looking at loads of other ways they can get people of different abilities and backgrounds involved in rugby league in Port Talbot where they are. And, as they were saying, that thought process wouldn't have come out without that friendship and relationship that we've got with them because of Alex, Sean and Matt who play for both teams. So if the venue is the key, so for example, when we were playing at Hunsler, which is in South Leeds, then the story we've got to tell around that the first time we did it was generating the publicity of being a curtain raiser to a professional game. So we're obviously tapping into their supporter base, their social media, their websites, talking about the game. Local newspapers are talking about it, local radios talking about it. So people are hearing that word stoma or hearing that word colostomy around before and after the game, we're just starting to sow seeds in people's heads about that. So if a friend or a family member or they actually maybe end up needing stoma surgery or they see someone who's using an accessible toilet and they don't look like they need to use one, maybe that that experience of our team and the stories they've read will kind of sitting on their shoulder there and will allow them to think differently, maybe think more positively than they did beforehand. Hannah Gagen: Gio, something you said then about raising awareness, so obviously there's, I know that when Hannah, some of our clinical team were up there with Christy, and Jackie, they were talking to some people who said, oh, you know, my nan's was saying, like, my stoma. On the back of that, people were able to, like, put them in contact, help them out, do that stuff. So it was almost like, killing lots of birds with one stone. So we were there obviously to raise awareness and to support. But out the back of that, there's people who from the clinical side have been helped as well by just coming up and, maybe it's, it's that nice and you're removing a barrier potentially of having to go into a GP, or go online. It's like having somebody there to talk to about some of this stuff. I think that's really important about it. And I think the other thing that just reflection on what Tom was saying about when he came back into it and the negative perceptions of having a stoma. I think the other thing that sport just generally, not just rugby, but sport does for me, and I don't know if it's the same for you, Tom, but it's not just the physical thing. It's that camaraderie you get from it, like meeting other people. that have the same condition as you where you can talk about how many times you might have like leaked or your funny stories about you know bags exploding or just whatever it is is this moment of meeting people who have the same things in common with you and you meet not necessarily because of your stoma but because of your love of sport and that's really important. Tom Kaye: Gio knows I have like multiple sides so you've seen me on the pitch I'm incredibly demanded. really assertive and, so how I play is very like aggressive, but I also like taking the mick, I'm a bit of a grub. I wind people up, uh, just like little niggles and stuff like that, but I'm also soft and quite approachable. Gio’s, we've had many a conversation where we've had put his arm around people and stuff like that. The thing I like about rugby, the reason why I instantly fell in love with it when I come back was, rugby's like life, you get knocked down, you get back up. You're not always on the winning side, sometimes you've got to claw your way back a little bit, and, you're surrounded by a team that's got to help you achieve that goal. So, for me, that's what's key about rugby, because you're only as good as your weakest players, as good as you feel you might be, or as fast or strong, whatever it may be. You're only as good as your weakest team member, and you've got to prop them up, help them out. And things like that. But also it's a laugh afterwards. You've got to like debrief and have that catch up and take mick out of Giovanna, tell him how lazy he is, and things like that. So like as soon as serious as I am, as you saw, I'm the clown of the class. Hannah Paterson: Coloplast professional offers a lot of educational material for specialist nurses and healthcare professionals. Visit Collar plus professional.co.uk to find out more. Hannah Gagen: That's one of the most beautiful things about sport for me. Obviously, it like keeps you fair. But you know, after having stoma surgery or surgeries or, whatever it might be, I think there are so many perceptions, as Gio said, about what you can or can't do. And actually it is like challenging that, but it's getting the confidence back. And it could be for some people, it's walking down the shops for the first time. Yeah, we're not saying you've got to get on a rugby field and have a go. It's that building your confidence back, whether it's yoga, Pilates, and then you move into something else. It's, the physical stuff that you're getting for me, the biggest joy about stoma sport is just, I feel stronger now than I ever did before. I have to go to the toilet to empty my bag and stuff, but I'm not rushing all the time. Like I used to be. My body's stronger. I'm able to do weights, I'm able to be at the gym, I'm able to do that stuff. And that is just more precious to me than I can ever really explain really, which is why I gave rugby a go. I mean, I'm not good, but I gave it a go. [00:21:38] Hannah Paterson: Yeah, so sport is definitely that thing that if it's something that's in your DNA anyway, that once you've had your surgery, it's certainly something that again, we've all spoken about those taboos where you can't get, it's the poo taboo, as I call it, where you can't get back to what you used to do. I remember you saying for Tom, I think your light bulb moment was getting back on the rugby pitch. For me, after I had all my surgery, I remember the first time I got back on a horse. Cause I'd become convinced that I couldn't get on a horse with a stoma bag, anything like that. And I remember the first time I fell off with my stoma bag, rolled around on the floor a bit, tried to see if I'd had a leak on the floor. I was fine. Got straight back on. And it echoed what you were saying about you get knocked down, you get back up again. I got thrown off a horse, got straight back up and got back on again. And sport does give you that mentality to have that. That bit of fight, that bit of grit as well, I think, in that way. Thinking about the contact side of things, I don't know if it's something that you bring in as a, that people have to, or if it's a personal choice. Does everyone have to wear some form of support wear, any stoma guards, or is that personal, individual choice for the players. [00:22:46] Tom Kaye: So I wear, hernia garments, shorts, and vest, but I don't wear any stoma shields. But I, I've worked really hard since coming back into the sport to get in shape in my life. And I feel confident enough I don't need to wear one. So I think some people, I know some people who are more, I won't name names, who are more comfortable wearing guards and things like that, or additional other types of protection. But also the game we play, it's formatted for people who don't necessarily want contact neither. Like, like we said, the gold or the red shorts.[b] So, yeah, so it's, it's all about personal comfort. Cause rugby is a sport where your body naturally protects itself. So when you're running into a collision, your body naturally protects itself a little bit because it's like, Oh, what's going on here. And that's probably the best way to describe it. Hannah Gagen: Yeah, I don't, it depends what the sport is really like. And also I suppose, coming back to that clinical piece, isn't it? It's like having chat early days with the stoma nurses and stuff. Like I don't, for me, the biggest challenge was learning how to walk again, cause I'd lost so much muscle. I was in a wheelchair, right? So for me, it wasn't like, so my entry back into doing sport was swimming just because it was, although people worry, I never worried I was going to leak, it was the last thing on my mind, really. It was just more like, am I going to drown. Like, it was building the muscle back bit by bit. And you know what, after I got back in the pool, was able to, like, start walking again and everything. I signed myself up to swim, I think, the Great East Swim, and I raised probably, like, two, just under three grand for a stoma charity. Sorry, it was the IA Giovanni. I had an ileostomy. I didn't know you catered for me in those days. And I raised it for those guys, and I haven't really looked back. So, yeah, I only think the only time I've ever had any extra support is when I put a stoma belt on, when I've done, like, like a 10k run, like a proper, like, one of the London ones or something. literally as a safety belt really, but otherwise I think I've built up so much muscle and I'm pretty strong now, but it's again, it's like getting that guidance early days clinically about what you can do, what's advised. I know Gio’s got, they've got an active ostomates page on their website as well with different, about different sports and things, but yeah, stoma nurse clinician, have a chat with them and I suppose listen to your body. Yeah, I don't, I'm not really giving medical advice. I'm just saying for me, it was more, I felt I just, I listened to my body. Yeah. And I took it bit by bit to the point now where I'm an international rugby star. So it's fine. Gio: I think the biggest one of that is it's just sometimes everyone forgets that everyone's an individual. I mean, there are so many stories of our players who were told that they'd never be able to play sport again. Yes, you know, everyone is different and everyone has to be careful and everyone's recovery is different as well, but not being controversial, but I don't think anyone should be told. that there's always ways and means and there's different versions of sport that you can play and even if you used to play like normal football. There's different versions of that, whether it's walking football or, or things like that. Looking at our own sport, rugby league, there's so many different opportunities for as in Tom's colleagues for Leeds Rhinos, PDRL, there's people, everything from brain injuries to lost limbs and things like that, that played in England's winning PDRL World Cup team last year. There's opportunities out there for everyone. Everyone just needs the right advice, the right support as well. And just to be allowed to find their way rather than be told. I mean, I'll name him, John Floods guy who plays for us. He had thirty nine surgeries in three years prior to him playing for us, was told they'd never be able to play rugby again. And lo and behold, he'll be running out for us on the 28th of October against Aberavon, just like lots of other people who were told that they wouldn't be able to get back to playing contact sports will again. Tom Kaye: One of the additional issues to that is the negative news stories and drowning out the bad noise. I think social media is an incredibly powerful tool for spreading awareness campaigns, but it can be used for it's bad ways. So you get people who put stories up and you're like, and I look at them and I think they don't need to say that or how much truth is in that just for in regards to attention, because for me, it's positive news only the bag saved my life. I'm in such a better position. The things I do outside associated just surely through just being in touch with the charity and I've snowballed. And like I said, we do know you're bound to have bad days with a bag. It happens, but I tell you what, I have a hell of a lot more good ones. Hannah Gagen: Here, here, totally agree. GRI were up in Scotland last week at an event in Hollyrood, and our Brian Devlin, little legend that he is, he did a little video and he was like, I was told, a bag. It's not a bag for life, it's a bag for living. And it's like, absolutely. And we joke, like my partner and I, we joke about it. People ask, people talk about can you, like sport, sex, swimming, like whatever it is. And it's like one of these things that actually my bag has. It has fundamentally changed my life for the better. And unfortunately, as Tom was saying, those early negative things like, I was told that my bag was a failure because my J pouch didn't work. And that word failure sticks with you for some time. And maybe that's why, I don't know, people like Tom and I and others, that resilience, we want to do sport. It's not about proving people wrong. It's about maybe proving to ourselves that we can do most things we put our mind to, essentially. And I definitely don't think I could have done the recent sporting things that I've done when I had UC, because I'd be constantly in a bog. Hannah Paterson: I love what you said then, Hannah, about the, the failure issue. That's something I've spoken a lot about previously. Because to me, I was told I was a failure of medical management. It was like, well, what did I fail? Was I given some exam I didn't know about. And, and actually it's switching that round and making it a really, really positive aspect. And I think that's the thing that you three are absolutely shouting from the rooftops that stoma surgery, stomas themselves. They're a positive thing. They're not these negative thoughts that people have and it's that positivity that I just get from all of you and that energy from all of you. Now this podcast is going out in November so hopefully when people are listening to this you guys will have won your match on the 28th. England will have won the Rugby Union World Cup and that will be the scenario that when this podcast goes out. That's what I'm hoping. Hannah Gagen: And Hannah you'll be on the pitch in the women's. rugby with myself and Giovanni. Hannah Paterson: Absolutely, absolutely. Gio: I'm not playing. Hannah Gagen: But aren't you managing the team, Gio? That's what you do. Or is it Tom that will... Gio: I'll be managing, yes. Hannah Gagen: Tom can upward manage you, and then you can manage us. Because that's how it works. Tom Kaye: We can't rely on Giovanni to coach Rugby League, because he's never played at a decent level. Outro

Hannah Paterson: But thank you so much guys, I've absolutely loved this conversation. And all the best of luck, and I promise I will come out on the pitch with you. You may regret that I've promised that, but I promise I will. Thank you for listening. To see more of the wide variety of education we offer, please visit coloplastprofessional.co.uk. See you next time. Narrator: Stoma and Consonance Conversations is a Vibrant Sound Media production for Coloplast Professional.

[a]6:20 - what does he say here? [b]23:19 - what does he say here?