Season Seven, Episode Seven: Ben Raybould 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 Patterson. I've worked in specialist care, and I'm currently the Ostomy Care Associate Education Manager at Coloplast. This time I'm talking to another Coloplast Ambassador, Ben Raybould. Ben Raybould: I remember ringing my IBD nurse and saying, I just, I can't deal with this anymore. I literally can't take it. Like, I've had enough. I'm at a breaking point. Yeah, I remember them saying, okay, right, now we're going to put you in touch with a surgeon. I think you need to see them. It was effectively an elective surgery, but I suppose now I look back and wonder quite how elective it really was. Hannah Paterson: Ben has had his ileostomy since June 2022. So hi Ben, how are you today? Ben Raybould: I'm good, thank you. Hannah Paterson: Thank you so much for joining me. I know you joined me as part of the Q&A session we had a few weeks ago, which was absolutely brilliant, but I thought it'd be great to get to know you a little bit more now. So I know I've said you've had your ileostomy since June 2022, but can you tell us a little bit more about that, why you ended up with your ileostomy and how your journey's been so far? Ben Raybould: So yeah, I had my ileostomy made in June 2022 because of Crohn's disease. I have had Crohn's disease quite a long time. I've had it since 2009 and I've actually had quite a mild form of Crohn's disease really. It was extensive but quite mild in its severity. And I was maintained by low level drugs for quite a long time. I even had a nice period of about a year and a half where I wasn't taking any drugs. And I was in nice blissful remission for quite a long time. But I think IBD has its way with you. And, eventually caught up. And I think for me, stress is always a big trigger. And I think, I don't really know, but I put it down to lockdown and the stresses that came about from lockdown. Because it was after that point that it started to get worse and I was then having to have more doses of various different drugs and particularly then into steroids, and ultimately into biologics. And then what led me to the ileostomy in the end was I became a primary non responder. I tried two biologics and neither of them worked. They weren't having any effect whatsoever. So yeah, we decided to go for the surgery option rather than spend more time living in poor quality of life. With the job that I have, it was pretty unmanageable, really. It was effectively an elective surgery, but I suppose now I look back and wonder quite how elective it really was. I was originally meant to have a loop ileostomy, and then that ended up getting changed to an end ileostomy due to some results that they found in the ultrasounds, I think, or the CT scans that they did in the pre op. So yeah, that changed things up a little bit. Hannah Paterson: And how have you been managing with your stoma since? Because a lot of people with IBD have that moment where they're like, oh my gosh, we wish we'd done this years ago. Were you like that? Or how was it for you? Ben Raybould: Very much really. It's a really strange feeling. I remember like a day or two after the op and suddenly realising that whilst I was obviously in quite a lot of pain from the operation. Like there was this other pain that was now just gone. And this whole like part of me that had been getting me so down all of a sudden that that had been removed. And, I think it negated almost the pain that I was going through to a large extent because there's this constant pain that would disappeared. Obviously it takes a while to recover and get back into the full swing of things, but it improved my quality of life massively and it was definitely, definitely the right option for me to do. Hannah Paterson: Fantastic. I know you briefly touched on earlier the job that you do and how that was certainly impacting. What job do you do, Ben? Ben Raybould: I’m a secondary school teacher. I teach biology at an independent boarding school. So, yeah, in the lead up to the surgery, essentially I became incontinent really. And I was really struggling with the frequency and the urgency with which I had to get to the toilet, which, when you're standing in front of a bunch of teenagers is a quite embarrassing and be as a science teacher as well. I couldn't just leave them. I couldn't just walk out of the classroom and leave thirty children unsupervised. So we had to have systems in place to prevent issues, but allowing me to get out when I needed to. And it just wasn't sustainable really. As well as. mentally, it was really tough and I think the point of which surgery was went from a potential option to, right, we're going to go and get this properly looked at was, I remember ringing my IBD nurse and saying, I just, I can't deal with this anymore. I literally can't take it. Like, I've just, I've had enough. I'm at a breaking point. Yeah. I remember them saying, okay, right now we're going to put you in touch with the surgeon. I think you need to see them. And then it all went relatively quickly from there, really. Hannah Paterson: And how has the stoma, sounds like the wrong word, but sold to you at that point? Was it sold as a positive factor? Because I've spoke to a lot about ambassadors and I know myself when I had my stoma surgery there was that conversation in words and I know we touched on it again in the Q&A that unfortunately, you're going to have a stoma. You've failed medical management. Or was the stoma brought to you as a more positive way of thinking? Because it sounds like your IBD team were quite on board with going down the surgical route, so I wondered if they maybe were quite positive about that? Ben Raybould: I think so. I mean, I was never really made to think that it was, that I was failed or anything like that, that somehow I'd failed anything. It was more just that, unfortunately, nothing's working. We can't get your levels down, and the likelihood is, yes, we could try another, another biologic, but with the rounds in between, I mean, they want you to do, like, two or three rounds of it, and each round has got eight to twelve week periods in between the biologic doses. So you were talking about then another three to four months in reality of waiting for something that even the medical team were convinced probably wasn't going to do anything. I don't think it was put as a really, really positive, but at the same time it wasn't a complete negative and you failed either. I think it was just that this is an option and if it's something that you're happy with. We're happy to explore it and then once I got talking to the surgeons they were very proactive and very positive about it in terms of the the scope that it could have improving quality of life. Obviously, there is no cure to IBD I think Crohn's in particular is a little bit harder to see surgery as a really effective treatment all it's doing is removing the affected area, but there's no guarantee it won't come back somewhere else, but yeah so far relatively so good. I've had a few bumps along the road and a few issues. I had a second surgery, but it's been okay. Hannah Paterson: So what was the second surgery for? Ben Raybould: So I then had a proctectomy. So my first surgery, as I said, was originally meant to be a lupidostomy, but they then found that I had a mild terminal ileitis, in the scans in the lead up to it. Because of that and the extensiveness of the Crohn's through my colon, they decided actually they were just going to do subtotal colectomy and end ileostomy and remove about the last ten centimetres or so of my small intestine as well. So then they could produce a healthy stoma. But they left my rectum in because at the time they felt it probably was too much to go through everything all in one go. My rectum was always my worst bit of inflammation actually. But the hope was that by defunctioning that, that it would calm down. Unfortunately it didn't. And then I was having a lot of problems with the mucus in particular and bleeding. But the mucus was the bigger issue. And it got to the point where I was then having urgency and incontinence with that. I don't want this like I've already been through all of that and I'd had a nice blissful period where things were better and I was like I don't want that and so then we talked it through and I was really as much as you can be relatively happy with my stoma life. It had given me that quality of life we talked about and things were much better. I was able to do my job better. I was able to be a better father and a better husband in terms of being there and actually being able to get out of the house. I was pretty housebound before I started going to the gym and I started to actually get my life back on track and do things for myself a bit more. So when that started hitting it again, I was just like, this isn't great, but I don't want this. But I thought, well, I didn't personally, I didn't want to risk a reversal. When I talked it through, I thought the chances of success of that for me in particular, were quite low because I had active Crohn's in my rectum, and obviously with the Crohn's, they won't do a JPO. So I thought, well, if they just reconnect, chances are A, it's gonna cause it to be worse in my rectum and cause more issues, or B, it's then gonna increase the likelihood of it spreading up into my small intestine and then causing even more issues. So I decided to then be proactive myself and think, actually, no. Let's do it. Let's just get rid of it. Let's make it permanent. And then that way, hopefully, fingers crossed, it won't come back. And we've definitely got rid of all the worst. Uh, we'll see. Hannah Paterson: So when did you have your proctectomy done? Ben Raybould: So that was February 23. So about seven months after the first one. So they were quite close together. Hannah Paterson: So you are now the proud owner of a Kenbum. I was going to say Barbie bum, but that doesn't seem right. Yeah, it's a Kenbum. Very on vogue at the moment with the Barbie film as well. Ben Raybould: Yeah, definitely. Yeah, no, I've definitely played that up a little bit on my social media accounts. Hannah Paterson: Talk about the link for Ben's social media is in the podcast description for those of you that want to have a look. So thinking about again now with you're working in the school, like you said, and also looking on your family life and things like that. So first of all, with school, are the children aware of the fact that you've got a stoma? Is it something you're quite open about talking about with them? Because I'm guessing some of them could have well been with you when you were poorly, some of the ones that were maybe in the younger years or probably with you when you were more poorly, and I've seen you almost get better throughout the years. Ben Raybould: Yeah, no, absolutely. Yeah. I mean, some of them saw it. I don't know, my tutor group had been with me the whole time and they'd seen me get worse and I think being a biology teacher in particular, I'm more naturally open to talking about stuff to do with myself anyway. It's something that autoimmune diseases aren't on the GCSE or even sadly the A level courses for any of the syllabuses that I've taught, which I think is a massive shame because they affect so many people and they're so important for young people to know about, whether it's about educating themselves or whether it's about understanding what relatives or someone they might know is going through. So I see it as a bit of a responsibility in my own particular position to, to raise the flag anyway and talk about it. So, I'd always talked about my IBD, before the surgery, and then I was very open with talking about it afterwards. They know everything. They know what I've gone through. Some of them I've shown elements of pictures. I've done whole school assemblies on what I've been through and what IBD is and what a stoma is. And, yeah, I'll continue to, to do more stuff within the school really. So yeah, it's a very open topic. Hannah Paterson: That's fantastic. But one thing, that's so sad that within science as a whole, nothing is spoken, like I say, about autoimmune, and yet it affects so many people. I mean, I bet if you looked at it, everyone out there must know somebody that's affected, really, by some form of autoimmune disorder, in some way, shape, or form. And, very few people that aren't. And, like I say, it almost goes back to grassroots education, then, in that respect. We need to be starting younger education, youngsters are educated around sex education, things like that. Should there now be more education regarding things like autoimmune disorders? I'm really shocked. I would have thought there would be something in there. So that really surprises me. Ben Raybould: It's definitely lacking. Hannah Paterson: Coloplast Professional offers a lot of educational material for specialists, nurses, and healthcare professionals. Visit coloplastprofessional. co.uk to find out more. Going back to family. I know you mentioned family. So children, how many children have you got? Ben Raybould: I've got two. I've got a daughter who is just literally just turned eight a couple of days ago. And then my son is five and a bit. Hannah Paterson: So, again, they were both born pre stomary. Is the stoma something that you're quite open about? I'm guessing probably not so much, your son is a bit younger, but is your daughter quite keen to, to hear about it, even see it, anything like that? Ben Raybould: Oh, they both, day one, were like, intrigued and wanted to see, and, they'll just walk into their bathroom whilst, like, I tend to change my bag in the shower, and they'll just wander in whilst I'm having a shower, changing my bag, and they just, look, sometimes Theo, my son, makes a comment about it, but most of the time they don't even blink at it, it's just normal now. They don't really think too much of it. But, I'm sure they'll have more questions as they, as they get a bit older. Hannah Paterson: You've talked about going back to the gym. Did you go to the gym between your two surgeries? Is that something more that you've gone back to now since you've had your proctectomy? Now you're not having those mucus based issues. I know you mentioned incontinence issues with the mucus. Would you say that post proctectomy, that's really when you've started to get that quality of life back. Ben Raybould: Yeah, I had a really good initial period after the stoma was made and then, it went down. So once I'd recovered from the stoma surgery, I was then quite active at getting into the gym, which was something I'd never done before in all honesty. I'd never been a gym goer at all. And I suppose in a way I'd used my IBD and certainly as I got worse as a bit of an excuse not to exercise as well. I can't be tired or what if I have an accident? And I think it was a bit of a mental excuse. so I think when that wasn't there anymore and I think for me, the gym was a way of regaining control of my body again. It was almost like a half. Now I can do what I want to do. I'm not controlled by you. I'm going to control you kind of thing. So yeah, I was quite driven. So I went back and then had to slow down quite a lot as it as it got worse and then picked up again once I once I'd finished the recovery from the from the Barbie bump surgery or Ken bump surgery. Hannah Paterson: And do you wear support garments when you exercise now to support those abdominal muscles or is it something that you've worked on and then you're quite comfortable without? Ben Raybould: I definitely, wear support, yeah, I wear a level three support every time I'm in the gym and I wear a level one support every day just for general support and I just find it helps to smooth out the bag and give a bit of extra support when it starts to fill up and stuff like that. Hannah Paterson: I think that's one thing that has improved. I mean, products themselves have improved massively since I had my stoma because as you know, I had a stoma which was reversed in 2000 and 2012. Yeah, 2012 and products have come massively, but also the need for support where I mean, it's that I spoke about recently. I had a prolapse of my stoma just towards the end of my reverse, before I had my reversal done. And of all things, I managed to do it by getting the turkey out the oven. When I was doing a Christmas dinner, that was how I managed to get my stoma to prolapse. So, it's when people go, oh no, it's okay, it's okay, I'm not lifting heavy weights, things like that. The turkey is one of the most lethal weights you could ever lift, and obviously we're coming up to Christmas there, so heed this as a warning. I will. Be aware of the turkey. So I'm going to say that to you, but make sure you put your grade three on when you're lifting the turkey out of the oven. Ben Raybould: I will do, I will do. Hannah Paterson: What are your next plans? So you're working quite happily. Have you got any other plans? I know you said you like flying the flag for things. Have you got any other things? I know you and the ambassadors are always talking and planning things. Have you got anything else on your agenda that you want to fly the flag for and get motivated on? Ben Raybould: A little bit. I've got a couple of things locally. My local hospital, they're not currently doing any support sessions or group get togethers to help people. And I think having the opportunity to talk to other people when you've. just about to go through that stoma surgery, or you've just come out the other side and actually having almost like a buddy. And when we mentioned it in the Q and A session, and having someone that you can talk to. And I didn't have that, other than Instagram, which was massively important to me. And that's what got me through, but, I still, I suppose, personally crave as well, the opportunity to meet other people with Stomas that have gone through the same things and just discuss I suppose the mental side of it more than anything else and the the things, the thoughts that go through your head. So I'm hoping that they're going to take me up. They seem quite keen. I think it's just a case of trying to actually build it. And then I've got something similar. I don't know if you are aware of Creative Patient, which is an amazing, it's like a journal, it's for children with IBD, that has been created that, is like a journal colouring book that explains medical conditions, explains treatments and everything about IBD, in a really child friendly manner, with amazing illustrations, and my friend Jen creates that and she's doing a lot of work with Adam Brooks, and some of the Catherine McEwen Foundation as well. So, I'm hoping that eventually I'll be able to get a little bit more involved with that. The work she's doing is Hannah Paterson: The work she’s doing is fantastic. That's fantastic. And what we will do as well, we will share the details of that website there of your friends in the podcast description as well, because I think what a fantastic tool for approaching those conversations with children, like you say, and they are the next champions, as we mentioned with your children, they're the next levels of champions to champion IBD, champion stomas. Get those invisible things visible and start them off young, I say. Ben Raybould: Yeah, definitely. The support that it offers to the parents as well. I think, I remember when I was first diagnosed, I was told that it wasn't hereditary. And then obviously since they've found more information that it's not one hundred percent hereditary, but there is definitely a potential hereditary link. And as a parent, every time one of my two get a stomach bug or they upset or they've got diarrhea and it just hits me really hard. And I just dread to think one day that they're going to end up with it. And it'll be my fault, but it's not really my fault of course. But I think mentally as a parent, it is a hard prospect to face. So anything that can support parents in understanding what their child is going through and will go through, is massively beneficial.I know the work that she does is focused not just on the children, but also on support to the family network as well, which is really valuable. Hannah Paterson: Amazing, absolutely amazing. I think you mentioned that there about that guilt feeling. Quite a few of the ambassadors mentioned that in various ways, shape or form. It's that parental guilt, either the guilt that you might pass something on to your children, the guilt of not potentially being there as much as you wanted to be in those early stages of diagnosis or through treatment and things like that. The unfortunate thing is, anything bowel related, anything stress triggered, as you rightly said at the start of it, is a massive thing when you've got a bowel disorder. And unfortunately, we are our own worst enemies a lot of the time in that, because our own guilt can actually, I mean, autoimmune's the first place, but actually we end up putting ourselves in our own little vicious circle, almost. Ben Raybould: Yeah, absolutely. I think that's why I've, I've taken to posting a lot on my Instagram account and just being very open, talking to people face to face, whether it's family, pupils, friends, it's been my coping mechanism, because I think the more you internalise those things, the more negative spiral that gets and mental states of mind can trigger physical aspects as well. And I think you're right. It can be a slippy slope. Hannah Paterson: And that's one thing I always get whenever I see all the ambassadors together, the energy that's in that room is just one of the most powerful things you can ever imagine. I think I say this on almost every ambassador podcast, but the energy that's in that room is just incredible. The vibe you all get off each other. And. It's just incredible to get such a group of like minded, like experienced people together. And I've said it to you all before, but you're like my little bunch of superheroes. You really, really are. I think I said it to one of the other ambassadors recently. You should be all coming wearing capes the next time you all come in. Ben Raybould: Now I'll come in wearing a cape. That sounds quite cool. Hannah Paterson: Thank you so much for your time, Ben. It's been great to get to know you a little bit more. And please keep me updated on any of these projects that you get doing as well, and we will get them out there and share them out there for you, because that sounds so exciting. And I love the idea of that buddy scheme, because you're right, that opportunity to speak to somebody in a similar situation would just be so invaluable. Absolutely invaluable. I love that idea. Ben Raybould: Yeah, I hope so. It could be really beneficial to both people's lives, I think, as well. I think it's not necessarily just going to help the new person. Outro

I think for someone that's even a bit more experienced, just to have someone in their local area that they know they can go and see, that they know they've got, they can physically go and meet, it can work really beneficially in both ways, Hannah Paterson: I think. I actually think it would be useful for the healthcare profession as well, for the nurses, to know that they've got almost like another tool in their box, because as a nurse, you want to try and do the best for your patient, you want to try and make things better for your patient, the person that you're looking after, and to know you've got another resource there, such a wonderful resource. I think it would just benefit everybody because there is that cathartic thing, like you said, being the person that's already living that life. I'd be able to dump almost and have that conversation. So yeah, I think what a fantastic idea. And I say, please do keep me updated. Yeah. Thank you. Thank you ever so much, Ben, and we will be speaking to you again soon, and thank you, everybody, for listening. 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.