S6E3 Relationships with a stoma Intro - Welcome to Stoma and Continence Conversations from Coloplast Professional. I'm Hannah, Ostomy Care Associate Education Manager at Coloplast. Working in specialist care, I know that stoma, bowel and bladder issues impact the lives of those you care for. This podcast is here to support your educational needs and help you in supporting your patients. You'll hear from fellow healthcare professionals and experts by experience, discuss the latest hot topics in the world of stoma, continence care and specialist practice. Hannah: Hi everyone, and welcome to this latest podcast. So I'm lucky enough today to be joined by actually three of our lovely ambassadors. We're having a bit of a girly get-together today to talk about relationships with a stoma. So I've got Yvette, Rachel, and Deirdre with me. So I'm gonna bring them all in now and get them just to give you a brief introduction to themselves again. We've met them before on previous podcasts, but just for a bit of a refresher. So, hi Yvette, how are you? Yvette: Hi. I am good thank you. Hannah: So can you just give us a little bit of a refresher if you like about yourself, and then we can crack on and we'll meet some of the other lovely ladies we've got with us as well today. Yvette: Yeah, sure. So I'm Yvette. I'm from Derbyshire. I have an ileostomy, and I will be celebrating my 10 year anniversary of having an ileostomy this month. I had ileostomy for ulcerative colitis. So I live with my partner who, he also has an ileostomy, and my four kids, two border colly puppies, and four cats. Hannah: My word full household! So, and also, hi Rachel. Nice to have you here as well. How are you? Rachel: Hi Hannah. Yeah, I'm good, thank you. How are you? Hannah: I'm really good thank you, I'm really excited about this conversation. I'm not gonna lie, I am really looking forward to this one! Rachel: Me too! Hannah: So again, if we could just have a bit of a refresher about you, Rachel, just for the listeners. Rachel: So my name is Rachel. I live in Bournemouth, but I'm originally from Wales and I had my ileostomy in 2012, and then I had a urostomy in 2015. I’m currently in a healthy relationship and I'm looking to work back in the NHS full-time again. Hannah: Fantastic. That's really good. Before we came on recording, Rachel was just telling us about all her job experiences and things like that, so congratulations for that as well, Rachel! And then last, but by no means least Deirdre, how are you? Deirdre: Hi. I'm good, thanks. Hannah: So again, if we could just have a bit of a refresher about you. Deirdre: Yeah, so I was diagnosed with ulcerative colitis in 2010 and had an emergency surgery to have an ileostomy. Since then, I've had two failed reversal attempts and I have a permanent stoma. And in February of this year, I had surgery to remove the internal J pouch, which had been causing me a lot of problems with fistulas and everything. And very happy to say that it was a big success, and I'm really happy with my permanent stoma and I'm getting back to living life again, and I'm so happy about it. Yeah, all good! Hannah: Fantastic. Fantastic. I'm so pleased to hear it all went well. Really pleased. Deirdre: Yes. It was a big worry and something I was putting off for a while, so I'm absolutely delighted about it. Hannah: Oh, so, so pleased. Cause I know last time we spoke on the podcast it was something we were speaking about that was coming up quite soon, so really glad it all went well for you. Deirdre: Yep. Thank you. I'm delighted. Over the moon! Hannah: So I know we touched briefly on relationships there, so I know Yvette, I think it's absolutely fascinating that you are in a relationship with also a fellow ostomate! So how did that come about? Was it, did you meet via the stoma route or was it something that neither of you had when you met or…? Yvette: When I first had my surgery, I was in a relationship, I was married. But after I'd had my surgery, my then husband was, he was supportive, but not as supportive as he could have been. And I found that having life-changing surgery, it kind of re-assesses and makes you re-assess and re-evaluate your life and your life choices and the people who you're surrounding yourselves with. And, but it was the beginning of the relationship breakdown, the relationship breakdown and failed. During that period of time after my surgery I realised there was very little support for younger people with a stoma. So I set up the support group with three of the girls a year after my surgery. My now partner Ollie, he had an ileostomy a year after me. We just met through there. We were good friends for ages almost exactly a year between our surgeries. Yeah, that's how we met through the support group that I set up! Hannah: It does just show, doesn't it? That stomas can actually benefit your life in such a way. And you guys know I've had stoma previously, and when you do have that surgery, like you say, it does make you re-evaluate things. You kind of change your way of thinking a little bit. So I was actually married at the point when I got diagnosed with my ulcerative colitis, but that marriage very soon broke down after the diagnosis. My husband at the time couldn't cope with it, couldn't cope with all the thoughts of what would come with it, and literally within a month of diagnosis, the marriage was over. It was all done and dusted. And then I met somebody else and he was with me all throughout my surgeries. But then I found that it became almost a relationship where, I felt like I owed him. I dunno if that's something any of you guys can relate to, that because he'd been with me throughout my surgeries. I then felt like I owed him rather than it being a relationship of genuine love and affection. So yeah, and I'd had my reversal done and everything at that stage. But yeah, that relationship broke down and I've been with my partner now for nearly six years and much healthier relationship. Don't feel like I owe him anything. Don't feel like he judges me as a patient or an ill person. He just sees me for me. But any of you guys had any experiences like that where you feel that, the best way I can describe is that I owed him something cuz he was there!? Rachel: Yeah, I 100% had that. So when I had my ileostomy in 2012, I was with a Greek guy, and my biggest fear was that, how would he have sex with me? And it was like I was more concerned about him and his feelings than I was about my own, about would the relationship breakdown. And I felt it was an unhealthy relationship because it was that he was the carer, but within that it was like there was a power dynamic and I definitely stayed in that relationship longer than I should have when cheating happened as well. So my biggest fear did happen and he did cheat. I stayed in it longer because I think I was like, who's gonna have me after? And it was my biggest fear and it kind of came true. So I felt like I owed him because he'd been at my worst. And you know, I lost my voice on who I was because I lost my career and my whole plan of my twenties had gone so, for me, yeah, I stayed in it longer, but then when I left that, that's when I think I really began to heal. And then when I got my urostomy more healing and acceptance around the journey happened and I’d become more boundaried on what I would and wouldn't put up with. Whereas at the beginning, I was so fearful of being on my own and just being ill and on my own. I put up with a lot that I shouldn't have. Hannah: And you're exactly right. You, do put up with that. But strange you say about cheating. That's exactly what my ex-husband did with the point of diagnosis. Just off and found someone, and like I say, your worst fears at that point get confirmed. It does, it makes you, and I love what you said there, I mean, I don't love the sentiment behind, but I love that way of putting it, you do, you lose your voice. You feel like you don't become who you are anymore. You lose that part of your identity. All of a sudden you are that person with ulcerative colitis, you're that person with a stoma, you're that person with a urostomy. You are not. Rachel, you're not Deirdre, you're not Yvette, you're not Hannah anymore. You are just that, that's your identity now. You've lost that and yeah, you do lose your voice. I know you, I think you were gonna say as well, Deirdre, you've had similar experience as well? Deirdre: When I was diagnosed, I had been going out with my partner for, I think it was four and a half years. He was very supportive, but it came outta the blue completely, I was just getting symptoms like so, pain in my back, feeling run down, pain and bleeding when I was going to the toilet. But obviously it's one of those embarrassing things, it's hard to strike up a conversation on your lunch break at work and say, oh, I've been bleeding outta my bum every time I go to the toilet, what about you guys? You know what I mean? So I kept it to myself for a long time and sort of hoped it would go away. And then by the time I actually did go into hospital, it was a very short period of time before I had to get the emergency surgery to have my large bowel taken away. As Yvette said there, it just made me, that whole experience was so traumatic and the recovery and everything, and so many things went wrong. And obviously I was meant to go away with my partner at the time to Thailand and Australia over the summer, and we had this summer planned, and then I was gonna be doing my teaching course when I got back and everything was all planned and I knew exactly what I was doing. And then it was just literally like the rug was pulled from under me. And I just didn't even know who I was anymore. You know, as you say, I had this whole future built for me and it was all taken away. And then I had a stoma bag and I felt like, I remember looking in the mirror and my hair had all fallen out at the sides, and I was under six stone and I thought, who is this person? I just didn't even feel like myself anymore. And I remember with my boyfriend, like just going back and we were sitting watching a movie one day, and I remember the exact moment when I just thought, I'm a completely different person now. It's, this has completely changed. It's just made me re-assess our whole relationship. Like as Yvette says, you sort of think, who am I spending my time with? Are these, is it, am I still the same person? Is this what I want outta life, kinda thing? And then from that, it did have a big impact and we did end up breaking up after that. He did try and be supportive and everything, but I think it's just such a life-changing thing to go through. And it's hard for the partner to go through that with you, and they're still the same person that they were before. Whereas I felt like I'd grown up about 10 years in the space of two months sort of thing, and I was just a completely different person and we just didn't gel anymore, and it was very sad. You know cuz I saw my future with this person, we talked about getting married and everything, but after going through something like that, you’re just quite depressed and dying and stuff like that thereafter, which you think a lot of people do go through. It's a life-changing experience for people to go through and in lots of different respects and it does seem to have a knock-on effect with relationships. Hannah: Yeah, I mean we've all spoken there. We all had a relationship end because of surgery, because of diagnosis, we all had relationships end at that point. It does just show, and I think what it really screams out to me from going back to my putting on almost my nursing hat on, is that partners need that support as well, as well as the patients. We focus a lot on the patient support, but actually the partners need a lot of support as well. And it does make you wonder, could our stories have been different if partners have been supported at points of diagnosis, surgery, things like that? And I, don’t know about you guys, but I wouldn't change what's happened in my past now for the world and yeah, but it does make you wonder, could your path have been a bit different if things have been different at that point? It's something I do talk about, but again, I know not everyone is comfortable with, but I know you ladies are. It's actually the nitty gritty of sex with a stoma cuz again, I dunno about you ladies, but when I had my surgery, I was not told, obviously I knew it would, having a stoma would affect my sex life, but the physical aspect of it, I wasn't told what physical implications having a stoma would have, things like that. And, were you guys told about anything like that before you had your surgery? Were you spoken enough about how it may affect things? Yvette: Not so much how it might affect things. It was more like practical advice of like, oh, well you can wear some sexy underwear if you want to hide things. You can, you can wear like waistbands and all that kind of stuff. There wasn't so much the conversation of the nitty-gritty of actually if you have sex in this position, this might be really uncomfortable for you. Or if you decide that you want to just, you know, be spontaneous, actually, high-waisted pants are great, but in the spur of the moment, they're a bit of a nightmare to get off really fast! It was very sort of glossed over and it was very general, but there wasn't the like, let's talk about the nitty-gritty of actually you should try this position because it's so much better and so much easier and you find it won't be as uncomfortable. Hannah: Yeah, exactly. And it isn't. You end up almost then going down an experimental route yourself a little bit there. I mean, yeah, and there were some things that were a definite no, no! And even to the point that I didn't function the same way as I used to previously like, but almost like there'd been nerve damage and cuz of the scar tissue as well. Things didn't work quite the same way as I had. I mean, even when it comes to myself having the good old four yearly smear test. I now can't have it done with a regular speculum because of all the scar tissue that's formed around my cervix area. I now have to do the whole feet up like legs over my head with the stirrups routine, and again, if you think about it in that respect, of course it's gonna affect your sex life! If anatomically they can't get a speculum in, then of course it's gonna affect you anatomically for your sex life as well! And, yeah, I can see you all sort of on my screen nodding like that, so it's something that we've all experienced now that none of us can do that in a normal way. So any other thoughts on that side of things? Rachel: Yeah, I did. I've done quite a lot of work around this because I found that I also was not told, and in having my urostomy formed and then my bladder removed, I had more issues, especially after having my bladder removed. I had more issues, kind of actually the act of having sex, and again, it was never discussed, you know, it was never. And then more, I did a presentation for British Urological Nurses and it was around, they asked me to do a presentation on sexual dysfunction and they didn't ask me what to do about, and they didn't know I was having this issue. I didn't tell anybody, and I've been advocating and doing loads of talks and it was one of my most powerful and most difficult emotional because it was really affecting me, and I said, you know what I'm speaking in front of 300 nurses here, and I'm not even talking, I haven't even told my team that because I write it on a piece of paper, then they start talking about sepsis kidneys, and I don't. And I've got a voice now, like I'm quite, and I don't shut up about it. But for some reason within that dynamic, and the more I, the more I did surveys, the more I kind of spoke to community and the more, especially regarding double baggers and I investigated more. It's like this is a major, major, major issue! Especially when we look at patients that have had total pelvic exenteration and things like that. You know, this is a huge, huge thing that's not been discussed. So in doing more talks and talking about it and the ASCN did a really good workshop and did one year, I think it was all around this and things are changing, which is amazing, and people are becoming more, more comfortable talking because that was my biggest issue like 13 years ago. And a lot of stuff came true. But it's also been able for us, because I think when we've been through so much, like all of us have been through loads, you can minimise it, but you know what? It's affecting my quality of life. I didn't feel like a woman. It was really affecting me, but I wasn't able to really voice it. And then since that, I told my doctor because I was doing a talk the next day and he said, oh, what talk are you doing? And I said, I'm doing this one. And I told him it was about, and he goes, closed the door and said, tell me about it then. And then I had tests and we worked. We realised why, because I've got no bladder. It's just flipped my uterus. So it's, it's, you know, that's why I get in pain and yeah. And the rest is history. So I feel quite passionate about that subject. Hannah: Yeah. And it's great to hear because ultimately now having been down the road, we are future patients voices as well. As well as the voice from our own experiences we’re future patients voices as well. And we can advocate having those discussions, having those talks and yeah, we've all had experiences there where we feel that we could have been told more, we could have been supported more when it came to that discussion. But it's a bit of a good old British thing, isn't it? People don't talk about poo, people don't talk about sex and put the two together and, oh my God, you're definitely not gonna talk about it then! And how about you, Deidre? Were you, did you feel you were supported in that side of things with the discussion? Deirdre: Well, I had a very supportive stoma nurse which I'm very grateful for, you know. And I remember actually she had a private appointment with me and was just sort of saying to me about, how you could try and re-introduce yourself into, you know. Because, having a surgery like that, you, you're dealing with your new body image as well, and you don't feel you're, as Rachel said earlier, you're sometimes more conscious of your partner's feelings rather than your own. And you're like, God, what are they gonna think when they see the bag for the first time? And, you know, are they still gonna find me attractive? And your mind is in overdrive and it's hard to kind of switch off and just relax and, you know, it's, you sort of feel on edge all the time and you've become hyper-conscious about it, I was, I didn't know whether I should have covered it all the time or, and then the slightest noise and everything and then I felt like I overthought the whole thing so much in my head, and it took a long time to let that go. But yeah, it was sort of like, I was given sort of a booklet and I think there was probably a paragraph or a few pointers on it about that, and that was kinda it sort of thing. And it was just cuz my, my stoma nurse was good and she kinda had a chat with me privately about it and things like that, cuz I was worried about it and the pain and everything. But there definitely needs to be more awareness and as Rachel said, you know, having chats and being more open about it because it is a major, major aspect of your life, especially as a young woman. I'm currently, I’m single, but I'm dating, like, you know, on the dating scene, and with a stoma, it, it is a scary time, you know what I mean? Because when do you introduce the fact that you have a stoma bag, and then you think if people don't know much about it, do they think, oh, is that gonna put someone off? Or, you know, because of the awareness, there is a lot more awareness now. People are more accepting about it, but you just don't know. And then it's one of those big things, when do you bring this into conversation or, yeah, there's just so much around it that needs to be talked about more, because I'm sure so many, you know, young women and men are going through this themselves as well. Hannah: And did you find, thinking of that side of things Yvette, but did you find that was something that, because obviously your partner Ollie has got a stoma, did you find that was something that then almost created a relief for you when it came to that conversation? Because you almost didn't need to worry about that conversation, it was on there, that's on the table already. Yvette: No, I'm glad you've said that actually, because it was just something I was thinking about as Deirdre was talking there, I’m in a, probably a really good position really to be able to sort of go, well, actually my ex-husband, you know, he didn't have a stoma bag of any kind, and it did feel very awkward and it did feel very much like, you know, they were saying, you know, Deirdre was saying about, you know, you are always thinking about how they're gonna see it, does it look okay? You know, are they just seeing that? But actually since I've been in the relationship with Ollie, sex is amazing because neither of us have got those inhibitions of like, oh my God, what does she think about the bag? We're both the same. That is a good thing because neither of us are really worried about it. Yes, there's times where the bag gets in the way, but we're both okay with it because that's just the normal to us now. So, you know, because I have got that ability to, I mean, I know that, you know, you shouldn't compare, but you do. Having that ability to be able to sort of like have no inhibitions in the bedroom, it makes it all the more enjoyable because once you've parked those inhibitions out the way, then you can actually focus on having fun and enjoying each other. Hannah: Yeah, interesting what you say there about having fun, because I think for a long time, for me, sex became almost like a functional thing rather than an enjoyment thing. I was having sex because I felt like I should be for my partner, but it wasn't actually about any enjoyment for me, or it was like I had no nerves down there anymore, I couldn't feel anything and it was more for his benefit than mine. So, but you say that once those inhibitions get stripped back, that actually you do start to enjoy it again. And it does just show that mentally as well as physically what affects your sex life, that you get by just changing your emotional stance on it, you can completely change how you approach a relationship. The thing I'm interested about, cuz I know Rachel, you said right at the start of the podcast, you're in a relationship now. How, at what point did you approach the stoma aspect of things with your partner? Rachel: Interestingly, he actually, we were friends before and he did my website, my Rocking Two Stomas website. So he jokes, because I was very poorly back then, and I made him cry and I got it for next to nothing, this website! So now he likes to throw it back in my face as a joke. Now I'm still here, I'm still alive. I'm still like, just loving life and yeah, relationships for me are different when it's built on friendship. But what I wanted to say as well is probably on from what Yvette said. I have dated somebody with a stoma and I, in all honesty, it was the most relaxed, and I think it really helped me now, it was the most relaxed, and supportive, and like all that inhibitions went, and I'm grateful for that experience because it's enabled me now to kind of put boundaries in. You know, there's a lady called Jasmine Stacy, and she did talks a few years ago, she did a lot for the community, and she said that our stomas are like a BS filter and they are! Hannah: Absolutely. And it is, I love that, the BS filter and it does, having a stoma and having surgery does make you filter out the people that you don't want in your life anymore. And interesting, it seems like we both got rid of partners along the way. They came out of the BS filter thing! So quite an interesting thought there! Rachel: Actually, it filters out all the people that you know, yeah, if you can't handle it, move on to the next. But for me, I had to do that like really internal work myself of like loving my body and really loving me and clearly I am to be able to get the confidence. And that relationship with somebody with a stoma bag helped me, I won't fail short. If somebody doesn't accept it, they can move on. I need somebody that understands that I'm wired differently, you know, and our plumbing's different. And for me, humor, having a bit of humor. So my partner jokes because when we're doing certain things, he'll go, oh, move this plastic outta the way! And we, but we joke about it and that kind of humor helps. You know, I have to use a night bag for my urostomy at night. And he goes, oh, you're plugging into the mains, you're a Stepford wife, you're plugging it in! And like jokes like that. And it just kind of, yeah, and if I'm honest, there are times when I do say to him, I'm going to the gym and my body's changing, and I do say, I wish I didn't have my bag. And he has a really severe stammer, very, very severe. And like before, people wouldn't really say anything. He'd go, well, I wish I didn't have the stammer, but we have, and we just adapt. And it's like, yeah, there's, sometimes I get glimpses where I think I wish I didn't have, because my body, you know, it goes, there's not as much, but it's like, no, it is what it is and you just work with it. Deirdre: I think it's scary for, you know, young women or men as well, on the dating scene. Because you could match with someone chat away, and at what point do you bring up that you have a stoma? And I remember this guy said to me when we matched online on the apps and he said, oh, have you got an Instagram account? And then I was kinda like, oh, cuz everything is on my Instagram account, you know, photos of me with the bag and everything like that. And then I just thought, as Rachel said, you know, BS filter, I thought, yeah, this is me. So I said, yeah, this is it, this is my Instagram page. And it was just tumbleweeds... He obviously went on, had a look and just didn't reply to me and just totally caught me out. And then, so I messaged and said like, Hi. I am not sure, what's up? I'm guessing it's to do with the page? Yes, I have a stoma bag, if that's a problem for you, you can just let me know instead of just ghosting me kind of thing. And he said, oh yeah, look, to be honest, it's kind of put me off because, if I'm being honest, I would be conscious of something like that if we did go on a date, so I'd rather just leave it if you don't mind? And it did kinda hurt me at the time, but then I thought, do you know what, it is a good BS filter cuz you think I don't want someone with that outlook! You know, I have been on other dates and most I have to say, most people are very accepting of it, very understanding and everything if I mention it and, you know, they're sympathetic towards what's happened to get to that point. And I would be very keen, you know, to explain to people the trauma and what people actually go through to get to the point about having a stoma bag. So, and a lot of people do respect that, but you do get the odd few who sort of are just, they think they have this idea about it and they just would write you off just because of that sort of thing. Hannah: It's almost like a lack of education, isn't it? It’s almost narrow-mindedness on it that they think it's for old people. So, I'm gonna say we're all young. Yeah, and we were certainly all of a similar age, I think when we had our surgeries. So that's four of us here, that were all of a younger age when we had our surgeries. And it is still thought of even now as being an older person, surgery. And here we are, four younger women talking about relationship experiences, dating experiences. It's something we've all had issues with. I say things are improving. And I think thanks to the likes of you guys on Instagram, things like that, you are putting that awareness out there. And I wish you know, almost to have my surgery now because there is so much more support out there in that respect. But I think dating is still something that's very much, swept under the rug thing. And like you say, when do you bring up that moment, do you just throw it out there on the table straight away before there's feelings involved, or do you wait a little bit…? Deirdre: After that happened to me with that guy saying about the, you know, once he saw the pictures and saw me with the bag out and everything, then it kind of did make me more cautious about, and then I thought maybe I should keep that information to myself until I meet the person and they get to know me as a person before I say that, or should I even do that because it is a big part of me, and why should I hide that? You know what I mean? So it's kind of, I don't know. It's a difficult sort of situation to be in because you think, will I keep this to myself and maybe let them like me for, you know me until I tell them about that? But then, I don't know. It's, I don't know what experience you have had, but, I definitely do find that, most people have been accepting of it, you know, and it's more in my head kind of thing. Rachel: I think everybody is individual and it's like I, you work out what, because you can Google and there's loads of suggestions now and you know now the work that's been done in the community, there's loads of YouTube videos and suggestions, but you kind of work out what works for you and you work out a system on, whether you say upfront or not. For me, after having, I was just dating a guy and my bag burst during sex and he reacted terribly. And after that I vowed that, you know what this is, I'm just gonna say it straight away. I'm not gonna worry. I'm just going to pretty much within a week or two or a few dates, I think it was two or three dates, I decided three dates was the cut-off that I would say because of what happened there. And it was like, I don't blame the guy. I think I don't, I don't blame that. I think when it is just for sex and not necessarily a relationship, it's slightly different as well. Like kind of the purpose around it. But yeah, I definitely think it's, you just work out what is right for you and what you feel is right, but at first you kind of want to get it right and you are looking and, but it is trial and error and you build experience and you just look it down as okay, it's building an experience to move it on. Deirdre: I'm almost envious of Yvette having someone, you know, being in a relationship with someone with a stoma. It must be so nice because I know even when we have our ambassador meet ups, it's just a whole, you just feel, I don't know, it's weird... like everyone's so open about having a stoma and you just feel like, oh my God, I'm here with my second family, it's brilliant! And then you see someone with their bag or showing it to someone or something like that, or talking about products and you just feel so accepted and it's such a nice feeling. Whereas when I go back to my normal life, well, I have a couple of friends that have met through wee groups and things like that, who have a stoma. And when we get together, we are just chatting away and we can laugh about things and laugh about funny stories you know, about experiences of dating and the bag making noises or something like that, or the rustling under your jeans or something like that there. And we can be open about it, but in general, everyday life, I kind of feel just on my own with it sometimes. And then it is scary to bring it up to a new partner and you don't know what way they're gonna react. It would be ideal to be in a relationship with someone who has a stoma as well. It would be great. I'd love to know what that’s like! Hannah: Take a leaf out of Yvette's book, set up a group, and then find your next man in there! Or set up a website like Rachel. There we go, we're gonna see a website and group coming off Deirdre soon! Rachel: I think it gives hope as well actually that kind of hearing from Yvette and like, you know, the thing is with this is we never plan to get ill and have stomas right? And you know, when we are younger we try and plan our life. Yeah. Kids this, we try and plan it never works out. And it is that by doing work, by being ambassadors and like meeting people then like Yvette you know, going out with somebody with a stoma, it's like you can't plan it. You almost have to go where the universe takes you and through the experiences and it gives hope actually, that if I had a choice, I would wanna go through exactly what I've been through because of the amount of I've got to know myself with the, you know, the rock bottoms to, I would never have experienced life if I hadn't have experienced that. And yeah, everything, it hasn't been, it's been difficult but, and it's been challenging. But yeah, I wouldn't have experienced that if I hadn't gone through it. And I would want to still go through that now. And it is that communities and meeting people like you guys, like, that's where I get to understand what I'm going through my life with people they don't fully understand. But you guys do nice to have both. Yvette: I think it's also very interesting is that, you know, these guys that Deirdre was talking about and others that I hear of is, you know, the ones that sort of say, oh no, I can't, I can't deal with that in my life. It's very interesting. I spoke to somebody the other week and she told me that this guy that she'd had this issue with previously, he'd come to her years down the line and said, my. Mom, I think it was, has had to have a stoma. And she had that option of sort of like being as blunt with him as he was with her, but she didn't, and she sort of, you know, gave him the support to help him support his Mom or sister or whoever it was, but I think it's just really worth, you know, thinking about how, you know these people who, all of a sudden do turn around and go, oh, you know, it's not for me. Actually any person at any point in their life can end up with a stoma for whatever reason! I was watching one of these, A&E program type things, and there was a guy on there, he'd got a stoma, he unfortunately was having a really bad prolapse and it transpired in the program that the reason that he'd had this stoma was because he'd just been some 20 something guy in a nightclub and he was, he ended up being stabbed and that was the reason he ended up with a stoma! Like, you know, there's so many people who go, oh no, it's not for me. But actually, do you know what? Tomorrow you could walk out on the street and end up with some injury, some incident, and before you know it, you could have a stoma! Hannah: I say none of us planned to have a stoma at any point. Like Rachel said, you map your life out. None of us knew sort of at the age of 20 that we were going to have stomas. None of us knew that was gonna be the way the universe sent us. And you know, you saying there was a chap that had been stabbed. I remember in work in the hospital, I had one young lad, he ended up with stoma. He was in a horrific car accident and the steering wheel column actually crushed his bowel and perforated his bowel! And then another one who, A lady who tore during labor, and she had a massive tear and they had to bring out a covering stoma to try and help heal the area because she'd had a massive vaginal to anal tear. And it, you know, I say those people didn't wake up that morning thinking they were gonna have a stoma by the end of that day. And it is that they, when people go, oh, it's not for me! Well, you, you don't know that! Unfortunately. It's not as simple as that! Rachel: And I say just for me is I have to allow a bit of compassion because they might not know cause they've not experienced it and they may. So it's like I've changed it where I used to get quite angry around that, those kind of comments. Now it's like they just don’t know and they may do in the future. And that's why we need to do more work about awareness and getting this out there because changing people's minds, because it is scary for some people at first. My partner, even though he did my website, he admits, he said, at first I didn't know how it would work. Like I think it is that he didn't really know the ins and outs and how it would really work because he didn't ask me cuz he was just a mate and we had built this up so he could say it to me. And I think it is that the not knowing, but it's also allowing people to have, they are allowed to have their opinions as well, we may not think they're right. But it's through more awareness and more people being open about it helps. Yvette: I think fear is fueled by a lot of people's reactions. It's your fear of the unknown. If somebody doesn't have an understanding of how something like that would work. Their reactions can often be fueled by fears, like you say, Rachel is, you know, if we don't, we might not necessarily agree with them, but actually the reason that that person is giving that reaction. Is it fear? Is it actually, do you know what, they're petrified because they don't want something like that to ever happen to them? Fear is a big thing for a lot of people, and actually they don't want to admit that to anybody else, especially not a new partner. Deirdre: I always think as well, you know, if you come across a situation like that or someone being a bit off about it, or they seem very skeptical about it, or it might put them off or something. Then I always try and think back to before this happened to me, I didn't even, I've never even heard of ulcerative colitis before. I remember going down to casualty and A&E, and the triage nurse sent me and brought me in, and then sent me back out to the waiting area. What it actually ended up transpiring is so far away from what I thought I was going into hospital for. I thought, oh yeah, they'll probably give me some tablets or something, send me on my way. I did not know what was gonna be in front of me, you know? And I remember when I came back out to sit in the waiting area and my Mom said like, well, what did they say? And I said, I don't know. She said, she said, have I ever heard of something called like, it begins with U, or something like that, I don't know what it was. And that was the amount of thought that I gave it because I didn't, I'd never heard about it. Whenever you come across people who you know are judgmental or something like that, then I sort of think to myself, and as you say, you know, you thought it was an older person's thing to have a stoma bag. And I remember looking around the ward and it was all pensioners and people in their eighties, and I thought, no, this cannot be happening to me, this doesn't happen to people my age! And whenever, if I come up against someone who's judgmental or something like that, I always think back and go, well, look, they could be at that point where they're so unsure, they don't know what's going on, and they think this is all really abnormal and things like that. And thank God, you know, now it's, there's so much more awareness about it and it's so important for us to have these chats and everything because the more people know about it and even, you know, I have been in long-term relationships with people and with the whole like, you know, intimate side of things, then I would be more self-conscious about it whereas they've said to me, I don't even see it, I don't even notice it! You're the one who's thinking about it, I don't even notice it’s there! You know what I mean? So sometimes you can get caught up in your own head about it. Hannah: And I think as you said about it's fear and it's fear when you've had a bad experience yourself, and it does then impact your future experiences as well. So if you've had a bad experience with how somebody's fed back on a stoma and things like that, it automatically then makes you think that everybody's gonna think in that same way. So, thank you guys so much for today, and we are definitely gonna do another one about this. So, Thank you again for spending time with me and I will see you guys soon! Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk