S6E6 Samantha Cole Mixdown v1 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: Today, I'm lucky enough to be joined once again by another one of our wonderful Coloplast Ambassadors. Today I'm joined by Samantha, but I won't talk too much, I'll let the lady introduce herself. So, hi Samantha. How are you? Samantha: Hi there, Hannah. It's lovely to be here. I'm really well, thank you. How are you? Hannah: I'm good, thank you, I'm good. I wish we were having a bit more Summery weather personally, but there we go! I'm not much for the cold weather, but I won't moan too much! But I'm so happy you've come and joined us today. This is the first time we've had you on one of our podcasts, and I'm so excited to have you here. So, as we've not met you before, if you'd like to just tell us a little bit about yourself. So where you're from and when you had your stoma surgery and why for me? Samantha: So I am a Junior Doctor at the moment, and I've had my stoma since 2018, so coming up for five years now. It was the result of a culmination of a very, very long period, 30 years plus of suffering with a neurogenic bowel. So, slightly unusual reason for having a stoma, but it really revolutionised my life, it gave me my life back, improved my quality of life so much! So I'm really passionate about promoting stomas in people with spinal cord injuries. I've got an end colostomy and I manage it by irrigation. It was my choice to have the stoma. So I think that helps with me accepting it and irrigation gives me some control over things, so I think that also helps. Hannah: Absolutely. I know another one of our ambassadors, Sarah, who you probably know, she's also very passionate about irrigation. And I think it's really nice, as I think you'll probably agree, it's becoming almost one of those lost fundamentals of stoma care. It's not so much talked about now, it's not maybe so much taught now and it's becoming one of those forgotten skills of stoma care. So to have two of you that are so passionate about it, I think is absolutely fantastic. So you said you're a Junior Doctor, so is that within the hospital setting, you’re a Junior Doctor? Samantha: Yeah, well I'm currently training to be a GP that involves three years of rotating around different specialties in hospital and in out in GP practice. So, so far I've just been in GP practice, but when I first qualified I was rotating around hospital specialties, but I have quite a few health problems which impact on my work, and it can be a challenge at times. Hannah: Yeah, and sometimes having that knowledge, I think doesn't necessarily help you with your health conditions either. It's like knowledge isn't necessarily the powerful thing at times, is it? Samantha: No. Sometimes I think you can know too much! Hannah: Absolutely! So did you find having your medical knowledge did help you come to terms with your stoma or did actually that work in the other direction? Did you find it almost hindered you a little bit? Samantha: I think probably a little bit of both because I was off work for five years, and so I'd done my foundation years F1 and F2, and then things came to a head with my bowel being completely unmanageable and I needed to take some time off and unfortunately, I tried lots and lots of different things to try and get things under control, and it took a long time, various operations and things, and the stoma was sold to me as an absolute last resort. And had I known then what I know now, I would've asked for it straight away, you know, because as soon as, I think it was about four months after I had my surgery, I was back at work. So it's made such a difference to my life, but also I think having some medical background helped me to know what to expect. I went and did my research and I had the option of either an ileostomy or a colostomy, but I also read up on irrigation and I thought that's the way I want to manage my stoma if I can. Because I have severe slow transit constipation, so just leaving my stoma to, you know, the output to empty into the bag is not really an option for me unless I take huge doses of laxatives and even then I get severe pancaking and I know Sarah spoke about that on her podcast. I had to figure out irrigation for myself, and I had to ask to be taught irrigation. It was never something that was offered to me. And yeah, like Sarah, I'm very passionate about advocating for it because it's a really amazing way of managing a stoma and giving you that sense of control back. And sometimes when I'm with the other ambassadors, most of the other ambassadors have ileostomies and I almost feel a bit guilty that I have the luxury of a sense of being able to control my stoma and not having any output for up to sometimes 48, 56 hours in my case, because my transit is so slow. On the other hand, to answer your, the other part of your question, has it hindered me having some medical knowledge? I think I was very, very anxious going into the operation and I'd heard all about early recovery after surgery. I'd even been given a form about it and I was constantly asking the nurses for this, that, and the other, and they were like, why do you want supplement drinks? You know, to help boost you after your operation when you can't eat! And I thought I was being a bit of a pest, you know? But yeah, I think with the incident nowadays, any patient can be more empowered. And look up certain things, but you need to know where to look. And I think that's where having a medical background has benefited me. Because there are some horror stories out there. Hannah: Oh, yes! Samantha: Yeah. And especially on social media, on some of the Facebook forums, people go on there when they're having difficulties rather than when they're having a great time and off living their lives. So it can, you need to be pointed in the right direction, I think. Hannah: And it's really interesting you say that. I mean, Dr. Google is probably one of the most lethal things out there as I always refer to it as Dr. Google. But I suppose from your point of view, like you say, you've had that ability to filter out the, the nonsicle side of things and go down the correct avenues of support. Was that what led you to the irrigation side of things? Was it looking on the internet or was it something you'd learned yourself throughout your own medical journey? Samantha: Well, prior to getting the stoma, I was doing trans-anal irrigation with Peristine. And so it's, it's really the same principle, just through the stoma. And I think when I was learning how to irrigate with Peristine, there were also other products on the market with a cone. And I read the little leaflet and it said that this product was for stoma irrigation. So I had it at the back of my mind, never realising I was going to end up with a stoma myself. And, I don't think I even remembered it, but I think it must've been when I was sort of trawling the internet. And, I'd never come across it as a professional. And I know lots and lots of people with colostomies who've never, ever heard of irrigation. And doctors that I've spoken to who are looking after me, most of them have never heard of irrigation. So it's stoma nurses, you know, that have the specialist knowledge, and I really think irrigation needs to be promoted more widely as a management option. It's not for everybody, and it's not necessarily easy, but it needs to be offered as one of the options in order to provide, you know, the most empowering solutions for the patient. Hannah: Absolutely. I mean, irrigation doesn't and won't work for everybody, but for some people like yourself and Sarah, it has been an absolute game changer for you both, and it's really changed the way you can manage your stoma. I know you said that you had to actually approach your stoma team for the irrigation training, so how long after your surgery did you start irrigating? Samantha: I was having a bit of a think about this earlier, and it might have been between three months and six months, but I can't remember exactly. It was quite soon afterwards because I went into the surgery thinking I want to irrigate. I think they said to me, three months is the bare minimum period of time you can wait between your operation and starting to irrigate, and then obviously it depends on when you can get an appointment to be trained on the technique. So I can't remember exactly, but yeah, I think it was about between three and six months. And, I've not really looked back. I've had issues and I needed to have my stoma refashioned because I had a prolapse and a small hernia. And then again, I had to wait another three months after that to irrigate. And, you know, I realised during those times when I can't irrigate, how much irrigation's really the best solution for me. You know, when I've been admitted to hospital for other reasons and I, you know, I can't necessarily irrigate. It's just been, you know, it's mostly because of pancaking. No matter what I do, the output collects around the stoma. I've tried all the hints and, you know, tips and everything that people suggest, and I, unfortunately, for me, it just doesn't, it doesn't work. And then it goes under the base plate and then you start getting leaks and things. And also you're having to push the output down into the bag. And when you're a busy person, when you're a professional or when you're just out there living your life, you can't necessarily stop every five minutes or every half an hour, find somewhere a bit private to do something! Hannah: Push around and yeah, rummage around! Samantha: Yep! Hannah: I know you said that you're Junior Doctor, and you've mainly done work in GP practices at the moment. Have you had to come across any shift work at all with your irrigation pattern or is that something that you've not had to come across so much? Samantha: Well, fortunately I've got some reasonable adjustments in place because I am classed as having disabilities under the Equality Act, and they've adjusted me so that I don't have to work shifts. So I just do sort of nine to five, well, they say nine to five, it's more like nine to seven, et cetera! So luckily I've not had to sort of work around that. But, my irrigation is quite flexible. So if I was catching a flight, for example, I would irrigate at a time just before I went on the flight. Cause I fly to South Africa quite regularly and it's, you know, a 12-hour flight. But I'm quite lucky that in a sense, that my transit is so slow that I can go quite a long period in between irrigations. It's just that it's quite uncomfortable. I'd like to do it every 24 hours because then I start to feel bloated afterwards. But I can manage if I have to, for a longer period of time. Hannah: You say, you go to South Africa, cause I can just about get the hint of the South African accent there! How do you manage when you go to South Africa with irrigating over there? What do you do regarding your supplies? Have you ever had any issues with taking your supplies or irrigating over there? Samantha: I have had a few issues, and I think the first time that I flew out there I was a bit concerned because I like to take far more equipment than I need just in case, you know, my luggage goes missing or something goes wrong or something breaks, et cetera. So I tried to take quite a few sets, irrigation sets and various bags and caps and things. But I have had an issue when I was out there. For some reason, and I don't know if it's a change in temperature or different water or stress or excitement, but my irrigation tends not to work very well when I'm on holiday, which is extremely frustrating! A lot of the airlines will let you take an extra bag of luggage on board, so that it doesn't need to be stowed in the hold, they let you do that. And if you just emphasise the fact that you really need these products and if they go missing, you're gonna be in a mess! They've been quite good and I've flown with various airlines and they've all accommodated that. I have also, unfortunately had the experience where, I've been overseas in South Africa, where for some reason despite really obsessing over packing lots and lots of bags and things with me, I somehow managed to lose them! Fortunately, very, very kind people managed to get me some supplies and my brother-in-law's actually a doctor over there, so I've got a few links, so that was lucky! But otherwise, I think I would've really struggled, you know, I can't remember how much it was, but I think one bag is a hundred rand, which is about, is about five pounds a bag! And we're so lucky here in the UK where when you've got a permanent stoma, you get all your prescriptions free. So that's something, you know, I'm grateful for. Hannah: Yeah. I mean, gosh. Yeah. I mean, I can only imagine what it felt like when you'd lost all your stuff over there, and I say, how fortunate that you almost, you know, you've got your contacts over there, what a fortunate thing! With airport security, how have you managed? Because I can imagine in South Africa, the security is very, very, top notch, shall we say! Ever any issues with airport security with your stoma? Samantha: Yeah. Not in South Africa actually, but I have had a few times where I've had to be patted down or I've had to stand in that scanner and it's like gone all…. where, you know, there's something there, and I've discreetly mentioned to whoever's patting me down or whoever's standing next to the scanner that I have a stoma and mostly they've been okay. But I think it was when I went to Cyprus, they actually swabbed my bag and I thought that was a bit weird. And I've been taken to sort of a private room before where they've maintained my dignity and my privacy, but not always. Sometimes they do it in full view of everyone else, and I don't mind that much. But I can imagine for, especially for new Ostomates, that that could be very, very, embarrassing, or, you know, just make them feel very, very uncomfortable. So it is a bit hit and miss as to which airport you're going to and from. But generally they do pat me down. Hannah: I know swabbing is something that's happening a lot more now. Unfortunately, the ‘naughty’ people out there are getting more inventive as to how they're smuggling drugs around, and apparently stoma bags is the latest tool! So what's next with your qualifying journey then? So you're in the Junior Doctor phase. When should you be inverted commas, ‘fully qualified’? And you say you want to go to GP practice? Samantha: At the moment my predicted finish date is the end of 2025. But I am finding it quite difficult with, like I said, I have other health conditions. I essentially have an incomplete spinal cord injury. So some of the work is extremely challenging for me. And I actually injured my back at work not too long ago where I was assisting a patient on the couch and felt my back go, and then I had to have an MRI scan, et cetera, et cetera. So, it's a bit hard to say where exactly I'm going to end up working once I'm qualified, but I've had to be very inventive and very adaptable and flexible up to the stage already. So we'll see what happens! Hannah: I used, I dunno if you know my background, I came from a hospital setting myself, so I know how easy it is to injure yourself in the work setting, especially with patients that tend to grab hold of you and things like that. I suppose one of my concerns would've always been, cause I also, myself, I had a stoma, which I've now had reversed. One of my paranoias would've been with patients would they grab hold of my stoma, things like that. And when they're rolling over, I know patients can be very ‘grabby’, especially when they're panicking! Is that ever something that you've been concerned about? Do you wear support garments or protective garments, anything like that? Samantha: I don't, the only time I have worn one of the stoma belts is when I was particularly concerned about my stoma producing a lot of wind. And, I tend to have a very windy stoma, unfortunately, and it makes a really loud noise, which I found so, so embarrassing and humiliating. So that's more my concern in the workplace rather than someone grabbing me, because to be honest, it's never really occurred to me that someone might do so. I suppose as a nurse you're doing a lot more patient, direct patient care, so I can, I can imagine that, you know, I've seen patients grabbing out and it would be a concern, but fortunately I've not really had that experience. But yeah, it's the noise, and I've tried all the tips and tricks with that as well that people recommend, and unfortunately not quite got to the bottom of it yet, but would be very pleased to hear any suggestions anyone's got, always willing to try anything new! Hannah: And there's always new ideas. I mean, whenever I talk about care with stomas, so most of the things that I've ever learned is from either my own experiences or talking to ambassadors like yourself or other patients at patient engagement meetings. I think you learn more from peer-to-peer knowledge than anything else. So if anybody comes back with any hints and tips for wind, I will be sure to let you know after this podcast goes out, I will let you know if any more tips come along! On that note, have you got any tips yourself that you want to give out to either nursing professionals that are giving out stoma care or even patients themselves having stoma care? Any tips that you've come up with? Samantha: I suppose I do have some suggestions or comments regarding how professionals speak to patients. I suppose the bad things always stick out in your mind, don't they? Hannah: Yeah. Samantha: Or, the really, really kind people and, and I must say I've had more kindness than negative comments. However, like I said, the stoma was only introduced to me as a very, very last resort and as a real negative, and I was told I was too young, even though I was in my thirties.And you know, I know many, many people who are much younger than that who get stomas and just sold as an absolute failure really, of all the other options they've tried. And I find that so sad because if it had been introduced much earlier on as an option and as a good option, I might have considered it far earlier and come to terms with it and done all my research. So I think not hailing it as a last resort and as a failure and something negative is really, really important and unfortunately that happens in the stoma world, you know, where people mostly by surgeons. So I think that's important. And when I was in hospital the night after getting my stoma, I had a nurse come to my bedside to adjust my IV and, I was a bit upset, so I was crying. I wasn't bawling my eyes out, but I was sort of a bit emotional and I was told to stop feeling sorry for myself because there were patients who had far worse issues to face! And I just thought, that's not very helpful! It happens fairly regularly to me as well when I go to imaging departments, so I have to have regular renal ultrasound scans and things like that. And obviously your abdomen is exposed. I get shock, surprise and people saying to me, ‘Oh, I'm so sorry. Is it reversible?’ And I think that's not the first thing people should be thinking because this has actually transformed my life and improved my quality of life so much. And that attitude is just so disheartening, you know? So, yeah, I, sorry to be a bit negative, but I just think it's language is so important and attitudes and I think things are definitely changing, especially with social media and all, you know, the ambassadors and there's so many people out there who are promoting, de-stigmatising attitudes, but I think there's still a way to go. Hannah: I know we've, a few of us and the ambassadors have spoken about that language and it's that ‘you failed medical management’. And I would say nobody's failed medical management, medical management has failed you! It's, and you're right, is that language of a stoma being sold as a last resort rather than a positive issue and I know a lot of patients and yourself in this situation, but a lot of IBD patients especially think that they could have avoided a lot of trauma down the medical route if it had been offered sooner. And yeah, it is that thing around language being used actually, that, do you know what, we can make your life better by giving you a stoma rather than, well actually, look, I'm really sorry this is a last resort for you. It's like, oh, well that's great, isn't it!? And it's that whole negative language, that's something that comes up time and time again is the language used and actually we should promote stomas as being a more positive thing to happen rather than that negative last resort, as we all often hear. Samantha: Yeah, in terms of IBD care, especially, I think getting the gastroenterologists together with the colorectal surgeons and sort of having a pow-wow and saying, look, we need to be on the same page here, and we're working as a team. It's not us against them, and it's not, we failed or you failed. It's, this is the next step, or this is a step to consider early on and let the patient know that. So, yeah, hopefully we'll get there at some point. Hannah: One day we might be talking on a podcast. When you are qualified, you can go out there, you can sell stomas to the world as being the best solution possible! No more failures or things like that. You're gonna promote it out there! Would you ever consider specialising in bowel care? Samantha: I would definitely, it's a bit tricky when you're a GP because, you can be a GP with a special interest or with an extended role as it's now called. I'm not sure I've ever heard of someone being a specialist in bowel care. I'm certainly not able to go down the route of becoming, you know, a gastroenterologist or a IBD specialist or anything like that, colorectal surgeon, cause I've chosen a, you know, a primary care route. But, if you don't mind, just going back to what you said about, you know, promoting stomas to the world. I certainly think in the spinal cord injury community, stomas are also very much seen as a last resort, and I personally feel that they need to be brought up far earlier. And I really just feel that a stoma can drastically improve someone's quality of life, sense of autonomy and dignity, and control that you can't get when you know. I appreciate that if you've got a high level cervical spine injury, you may not have hand function. So it would be, you still would need someone to help you manage your stoma. But I personally feel, and it might be controversial, but that if you've got a stoma on the front of your body where you can see everything going on, it's a bit more dignified than someone behind you doing digital removal of feaces. And I know there's a stoma care nurse in Salisbury who's worked closely with the spinal injury unit there, and she's done her PhD on early colostomy formation in patients with spinal cord injury. And I think she's had some fantastic results from that. And that's something I'm so, so, so passionate about. And I'm a trustee for the Spinal Injuries Association and you know, I just go on about it a bit and I'm presenting some posters at the International Spinal Cord Society Conference. I know Coloplast are gonna be there as well in Edinburgh in October. And one of the themes for the conference is advances in bowel management. The poster that I'm presenting is actually based on my own journey, so it's kind of a 30-year snapshot of all the things that I've tried over the years, and it's culminated in the stoma, which has been the best solution. Yeah, so it's one of my soapbox subjects! Hannah: I love that though, and I can hear the passion that you've got for it and it's so fantastic to hear people speak in such a positive sense about surgery and alternative solutions like stoma care to hear that positivity and like I say it's been a game changer, you've been able to get your career back on track all because of your surgery. What was it, was it five years you said you were unable to work for? Samantha: Yeah. Hannah: Wow. Yeah. Absolutely amazing! Samantha: It is amazing, you know, and it's so sad. I feel very, really sad of that five year career break that could have been avoided. And it takes its toll on your mental health definitely. Hannah: Thank you so much for all that Samantha, listening to you and listening to your passion about stoma care and I say with spinal cord injuries, which isn't something we've really discussed before. So thank you so, so much and I really hope you'll come and join us back for another podcast at some point? Samantha: Oh, I'd love to. Hannah: Oh, fantastic. Thank you so much and thank you everyone for listening and we'll speak to you soon Samantha, bye. Samantha: Bye. Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk