S5E6 Jay 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: Hello and welcome to this podcast. So today I am joined by Jay, she is one of our newest Coloplast ambassadors, so we're really lucky to be joined by her. So I'd like to say hello Jay, welcome to Coloplast and thank you for joining me today. Jay: Hello Hannah. It's good to be having this chat today. Hannah: Thank you so much for joining us. So whenever we get people doing our first podcast with us and haven't spoken to people before, we always like to do a, what's your name, where'd you come from? So if you could tell us your name, where you live, and a little bit of background, especially about how you ended up with your stoma if that's okay? Jay: Well, my name is Jay, and I live in London. I've lived in London for, about 30 years now. And my journey into getting a stoma was an incredibly unwelcome one. I thought initially, that I had gastric flu and had terrible stomach pains. Ended up trying to get to hospital, and it was just after Christmas, it was the 27th of December in 2013, when this all kicked off and unfortunately, one doesn't really want to get sick over Christmas. So the first problem was there was no ambulances, and… a neighbour helped me get downstairs cuz I literally could not walk, I was in so much pain. Got to the hospital and they took me straight through to majors. And initially things appeared, like I was being examined and they were trying to find out what was wrong. And then for some reason, I was taken from majors and put on a ward and left overnight with nobody monitoring me. I mean, I was crying all night. In absolute agony. Give you an example of the level of pain. The last time I'd had a pain like that was when, several years before I'd had a ruptured ectopic pregnancy. So, you know, when you're in, you've got that level of pain in your body that something is terribly wrong. And the worst part about this was nobody was listening to me. The following day I was begging for a doctor. I was, I knew something was terribly wrong, and they kept telling me there were non available. And eventually doctors just came around on ordinary rounds and they went to see other patients first, and by the time they found me, I had two quadrant peritonitis. At which point, with my training, in terms of my historic work that I've done, I knew that I was in a lot of trouble. And then nothing seemed to be hurried. You know, there was an urgent CT scan requested, that took four hours. And then by the time I actually went to theatre, it was about 1:30 in the morning, and by that time I was seriously, seriously ill, and in the length of time that I'd been left the natural progression when you've got a perforated bowel is that you get peritonitis, that that spreads, and eventually when it becomes full quadrant peritonitis and you become septic, you die very quickly. So I was absolutely terrified with the whole situation. The anaesthetist actually said to me, ‘look, you're very, very poorly. Don't be surprised. I'm gonna keep you asleep for quite a long time afterwards. Don't be surprised if you lose three or four days’. And that's really when my nightmare began. It was a perforated abscess, that was the cause of it. I was brought around in intensive care and instead of me being out for three or four days, I was actually only out for 12 hours. I was out of intensive care very, very quickly. And I do understand from a medical point of view, they want to get you moving, they wanna get you out of intensive care. But actually in the reality of living in London, is a lot of the time, they just don't have the beds, and it's literally like a conveyor belt. And at that point I was sent to a ward, I should have been on a heart monitor, I wasn't even seen for three hours. Things have come out because there ended up being a clinical negligence, and a court case over it. And things have come out since then that I discovered. Things like I was left 14 hours overnight on a morphine pump that nobody was monitoring. So that next three weeks in hospital was very traumatic and as somebody that already, I'm very open about speaking about PTSD, I did warn them that I had PTSD when I went into the hospital. And of course the trauma of everything and really the lack of care, that was the bit that it was the most scary. It really was so scary that nobody was listening and nobody was doing anything, and by the time they did, you know, most people don't make it at that stage. Hannah: Oh God, just listening to you there, my heart absolutely goes out to you. What an absolute trauma! Did anybody speak to you about the potential of a stoma before you went down to surgery? Did you even get to speak to any nurses or was it one of those things that you just woke up with at the time? And I can imagine with everything else going on, that was almost like the least of your worries in some ways at that point! Jay: I was told by the registrar that ended up operating on me. I was, these are the words that were used, more or less verbatim… ‘we may have to give you a temporary stoma for six months’. And the reality actually of when you are in that situation, and you are that poorly, is that, they can only do a Hartman’s, at that stage. There's no maybe about it. A Hartman’s with a complete washout and everything else that goes with it is the only option at that point. And I think it's the dishonesty sometimes that is, it kind of adds to the trauma. You know that I'd had surgery before, so I'd ask them if they could go through on a transverse scar that was already there. Cuz i'd had so much surgery, they said it's too dangerous. You've had too much, you know, too much surgery. But the reality is a Hartman’s is done as a midline. It had nothing to do with previous surgeries, that's what they had to do. And I think, particularly when you've already got PTSD, and you've already been traumatised by other things in life. One of the things that is really important as a patient, is honesty. You know, however bad it was at that stage, it's the honesty that would've been so much more welcome in my world. Hannah: Yeah, it is that honesty like you I say. I mean, it sounds like you've already experienced surgeries and were those for your diverticulitis? So you said about having a transverse scar. Was that for your diverticulitis or something… Jay: No, no. I, I didn't know that I had diverticulitis and that was the, you know, that was the, the shocker. I didn't know that I had anything in terms of that. The first surgery I had was an emergency caesarean, then I had another surgery, about 10 years later for adhesions, which had been problematic since that surgery. And then I'd had the ruptured ectopic pregnancy, so that was my third transverse major surgery. I'd had sort of four keyhole surgeries, so I was no stranger to surgery. But, this kind of surgery and to be that poorly afterwards. And then it was like, you know, if you read my medical notes, which I had to do because I actually did the court case as a litigant in person, which I wouldn't recommend that most people do! Because you're basically having to go up into the high courts as your own solicitor, which is, you know, pretty hard! But I don't regret a second of that, you know, somebody needed to be accountable and that was the only way to do it. Because nobody's going to admit that they've done what they've done and it only cost me my life. I think, you know, that's the most important thing here. When you have hours before, somebody literally is going to die of their condition, you can't afford to hang around, you can't afford to leave it the way they left me. And it was just, fate, whatever you wanna call it, that I hadn't died sooner. And things came out that, you know, the registrar was doing the surgery with a consultant on the phone. You know, it reads like an absolute horror story my medical notes! You know, I had a Tramadol overdose one night, which felt a bit like an episode of Dr. Who! You know, I was in hospital for three weeks, and I had open wounds. And I think when I look back on it now, the ignorance at the time of, and the inability of teams to work together. That's what I would like to see change, is the interaction and teams working together. So the dieticians and the doctors and all of the people, kind of almost seem to be working in isolation. So I had physios, for example, coming in to ‘bully’ me. Now I've rehabilitated myself, I'm a qualified clinical personal fitness trainer. You know, I've got a whole load of qualifications. I've spent 10 years studying. I know plenty enough to do my own rehabilitation, and I'm usually the first one outta bed, and getting on with that. But I hadn't had anything but a saline drip for five days, and I had physios bullying me to try and walk around. Without even the understanding that when you haven't had any calories, because the TPN wasn't started for five days, so you've had no calories going into your body apart from a saline drip, and they actually expect you to go walking around. It's the lack of communication and teamwork. That was quite shocking too. Hannah: Yeah, it sounds like your whole experience was just really, really traumatic and on top of what you've been through previously. I said earlier, my heart absolutely goes out to you, it really, really does. I'm sitting here thinking it is right, that teams do need to communicate a little bit more. Coming from an NHS background, I'm always a real advocate for patients and always encourage patients to speak out. And thank goodness you were in a position that you, you were able to speak out for yourself in a way you, you knew your own body and your own capabilities. Going back to your time in hospital, how soon after, I know we've spoken about the physios and the doctors, how soon after were you seen then by a colorectal nurse to actually tell you a little bit more about the stoma and what had happened with your surgery, that side of things? Were you seen quite quickly on the wards from what you can remember? Jay: Well, this all happened, you know, between Christmas and New Year, so it was a weekend, so, yes, and there were certain people that stand out as being exceptional… the dieticians were very worried about me. I mean, I'd lost a stone in a week. When you have no calories going in your system for five days and then they're only playing catchup because your basal metabolic rate, you know they're gonna be giving you 1200 calories on the TPN and then they're trying to get you to eat, but of course I couldn't. I was seen by the stoma nurse on the Monday, and that's when the nurse in pain control first came round and she raised an incident report because she, I didn't know it at the time, but she had discovered that I'd been left all night on the morphine pump with nobody monitoring it! So Monday morning everything kind of kicked in and the dieticians, like I just said, were amazing, they were really concerned and they did everything they could. The stoma nurse was just wonderful. The thing that happens, and again, it's about education, isn't it? We only know what we know. Now, for most people, when they have any kind of surgery, the bowel will automatically go to sleep for about 48 hours. That, you know, obviously that's an approximation. When you've got PTSD, you can triple that length of time because you stay in fight or flight response for a lot longer. Your sympathetic nervous system is in absolute overdrive. So the stoma nurse was very reassuring. She was lovely. I mean, I couldn't even look at it. It was like, ‘can we just, you know’… No! And so, because nothing was happening, nobody needed to change it, and nothing needed to happen with that. You know, and we were days before there was any sign of anything coming through, because there'd been no food passing through the bowel anyway. And she was so kind, and she was so patient and slowly encouraged me to, eventually I got to look at it and, but by then I had two open wounds that, you know, that from infections. And so I had these gaping craters in my stomach, and then the stoma. It was just hard and I was so ill at the time. And give you an idea of how awful I looked was, I could see nurses pointing at my bed and I could see visitors looking at me and saying, ‘where!?’, and the nurses were pointing straight at me and I was unrecognisable! Hannah: Because you'd lost that much weight and you were that poorly. Jay: Yeah. I remember going into the toilet eventually when I was mobile, and I remember looking in the mirror. You know, those kind of movies that you see where you see a ghost and it's kind of like the shadow of a person, but it's not completely there, it's kind of partially there. It was almost like my body was there, but my spirit just wasn't in me. That's the only way I can explain it. I just remember looking in the mirror and thinking, there's a ghost looking back at me! Hannah: Yeah, that wasn't you looking back at you out the mirror. Jay: No. Hannah: And so you said you were in hospital for three weeks after that surgery. So you went back home? Jay: Yeah. Hannah: Were you able to adapt to life quite quickly around the, I mean, I'm sure you probably still had the open wounds at that point. When it came to the stoma, were you able to adapt quite quickly with the stoma when you got home, or was that something that your stoma nurse still supported you with? Jay: She did, she remained, she's retired now, but she remained a very constant light in all the darkness. You know, she was really amazing. Going back to being in hospital, I think that the most awful part of it was because it was taking me such a long time to get my head around it. Was that the first time that it actually worked, and I had no idea about, you know, I knew how to change the bag, she had gone through everything with me by that point. But I remember walking very gingerly towards the toilet, taking my stuff with me to change, and the most mortifying thing happened, was that nobody had explained to me, when the bag gets full, obviously you need to change it before it's too full. And the whole thing just fell off my body onto the floor and I couldn't bend over, I couldn't do anything to pick it up, and I had to call the nurse. And I think that's where you realise how much dignity you've lost. Hannah: Unfortunately it is, and I hear it from a lot of stoma patients, is those initial traumas in those early days or even weeks, can be the ones that actually then stick with you for a long amount of time. And it's something I often discuss, it's like a ‘burden of leakage’, that you can go through months, even years after having a stoma and not have leakage. But you've still got that, and as you've just said now, that recollection of so early on that you had, you know what I would call a ‘catastrophic’ leakage incident, which still sticks with you now and it's something that I think really needs addressing. How do we address this burden of leakage? They, I mean, I might be wrong, but, people don't have leakage for months, even years on end, like I say, but it's something that's still very mentally we worry about with stomas. Jay: We do, and the thing that sticks out in terms of memory of that is the nurse's face. I think, you feel embarrassed enough already. You know, you've just had your first bowel movement, the bag's fallen with its contents onto the floor. That leaves stoma everything open to… you don't know whether anything else is going to come out. You know, that was my very first bowel movement after the surgery. And you know, the nurse was sort of twitching her nose that ‘oh, don't worry, I'll clean it up’. But her face told me that it was not something she wanted to do and that it was a horrible thing for her to have to do as part of her job and that she wasn't very happy about it. So really, I think, when the words that are coming outta somebody's mouth is really not matching their body language. That in itself can be something that, again, is mortifying and those things are, as you quite rightly say, Hannah, those are things that stick with you. Because your first experience, if it's not a good one, you've gotta then try and get over that as well as get used to the new life. And one of the things, I had a lot of therapy after all of this happened, and one of the things that my therapist did speak to me about was the fact that shit and shame begin with the same letter S! Hannah: Yeah! Jay: So, you know, I'm doing a lot with my life now and I do lead a very full life and I've done all sorts of amazing things since this happened. But overcoming that initial, burden of what happens and the way it affected me has not been easy at all. Which is kind of one of the reasons why I'm keen to share my story. You know, we have to get past that shameful thing and the loss of dignity and how society and other people view that. Cuz it could happen to anyone. You know, you could be, you could get cancer, you could have a car accident. There are many, many reasons why people have stomas. It's not just IBD, or diverticulitis, all those kind of things. It can happen to anyone! Hannah: Absolutely. I mean, I always say, and I've said it on previous podcasts, it's what I always refer to as the ‘poo taboo’. Nobody wants to talk about it cuz it's poo and it's, it's not glamorous, it's not sexy, so we don't wanna talk about it! And that's patients that have stomas, and it even comes to the point of diagnosis as well, that people are delaying diagnosis when rightly, like you say, it comes to things like cancers and IBDs because nobody wants to discuss that poo toboo. And that's why we love having like yourself, our ambassadors on these podcasts to really champion being open, being vocal talking about things. And there's another thing I'm dying to ask you Jay. You said about earlier on in the podcast about you were a trained, personal trainer? Jay: Yep. Yep! Hannah: How have you managed your, or have you, have you gone back to your fitness at all since having the stoma? Jay: I have. It took me a long time to build up confidence because it took months for those open wounds to heal. I mean, one of them was six and a half centimetres by three and a half centimetres by three and a half centimetre deep. So, you know, that took a long time to heal. And I know from doing it as a job, you know, I hadn't got, the interesting thing about being a clinical personal fitness trainer is you get taught how to do stroke rehabilitation, you get taught about diabetes and heart attacks and all of these kind of things in terms of rehab work. Nothing to do with stomas was on that. Hannah: Yeah, I mean, when I worked for the NHS I worked a lot alongside the physios in our surgical ward, speaking to them about that mental side of things and how for a lot of it for patients with a stoma, it wasn't so much that physical side of things, it was actually mentally they were struggling with the idea of going out that bed space, cuz the bed space all almost becomes like a safe zone I think for patients! Jay: Oh yeah! Hannah: Exactly, it's encouraging, and getting them out of that bed wasn't just about getting back on your feet, it was actually getting your mind back in there as well. So I did quite a bit of work with physios, so that's interesting that you say that. So when you did go back to your fitness, how did you get on with stoma products? Did you have to adapt your product usage at all? Did you have to change your products? Jay: Yeah, I mean, not much. I just found something that worked for me and interestingly, it's kind of stopped working for me recently and I just seemed to have had a bit of reaction to this product, but that just is what it is, you know. But I felt confident by the time I did it because one of the things I did was a lot of core work in terms of just holding and using the muscles, all the time the wounds were healing. You know, you don't want to be pulling on anything in terms of trying to do abdominal exercises that you're pulling on, while they're trying to heal. You know, some of it is just common sense, and I wish that the courses I'd done had had something on them, you know, about stomas, but they didn't. But I was thankful that, I wasn't just a qualified PT, I'd done the clinical side of things and I'd kind of gone into a lot more. I was also a competitive bodybuilder years before, so, you know, I had a huge armory at my disposal in terms of what would be a good idea and what wouldn't be a good idea. So I figured that the exercise bit, I figured that out as I went along and didn't have too many problems, in terms of the products and exercise. What I had problems with was the fact that I do have IBS, and that's something I've had for many years, it kind of goes hand in hand with the PTSD, it is what it is. So leaks and things like that, it's more confidence in going out and not wanting to go out when you think you're going to have a movement and you might get a pancake and you know, you're not quite sure so difficult with IBS to keep a steady consistency. Hannah: Yeah. It's makes it all a little bit more unpredictable, I imagine? Jay: Hundred percent. So those were the things, and you know, it looked on the surface because I, it came sort of 2017, so I was sort of almost four years into having a stom then. And I flew 8,000 miles down to the Falklands and trekked 20 miles across country. Now that's a very interesting thing actually, people think, ‘oh my God’, you know you did this, you do that! Well, yes, there's lots of toilets on airplanes, so that's not a problem! But the interesting thing is psychologically I only had a recovery driver and I had a couple of people that were with me, and then one guy walked the whole 20 miles with me with the recovery vehicle in the distance. And I felt a lot better crossing country in the Falklands in the middle of nowhere than I did going into my local gym, for the reason… if I'd have had a problem, I wouldn't have had to worry about cleaning myself up because I could have just turned my back on the person I was with, and then there would've been complete privacy. And these are the kind of things that, you could, you only know them when you do them, when you, you know, it's an experiential thing. And so that felt easier than going to the gym when there's loads of people about, and you know, you can't control your wind coming out and if you get a leak, you're gonna have to run for it quick! You know that to me is much more stressful. Hannah: It also shows that, and again, it's now, I've spoken to people about before that actually sometimes taking yourself of what you consider to be your comfort zone, actually broadens what your comfort zone is! And places that you didn't think would be a comfort zone actually turn out to be just that! It's somewhere where you actually feel more safe and more comfortable with what's happening. And it can be those places, like you say, the gym, that can sometimes be that little bit more almost intimidating. But what I would like to do as well, Jay, is, especially because of all this with your personal training and your fitness, we'd love to share your social media pages with the podcast description so that people can have a little look. And it's that real inspiration of being able to get back. Cause I think fitness is something that a lot of people do think they can't necessarily get back to any sort of fitness after a stoma. They think it's right, that's it. They can't do it anymore. You know, you're not gonna be able to get back to any level again. But I think you are proof as well that you can regain that good level of fitness post stoma surgery. Jay: Yeah, and I think that's something that, you know, I mean, my hashtag is actually #brokenbodybuilder, and the reason for that has got nothing to do with the stoma. It's got to do with the fact that, 23 years ago I had a horrific head on car crash, and got cut outta the car, and at the time I was told to just give up. It took five years to get, I mean, I'm laughing about it as I, as I'm actually speaking about this at the moment, cuz I'm thinking, you know, I kind of have this history of me knowing there's something wrong but not being listened to, you know! So eventually five years down the road, I kept trying to go back to training and they did an MRI and I have quite a serious neck condition again, of which the physio is very different of what they would suggest now, but back then, err on the side of safety, just give up, don't do it. And you know what, I couldn't, Hannah, in my mind, I kept thinking, all these surgeries and things that have happened to me in the past. Like, you know, I kept thinking you've got all this knowledge in your head, Jay, you've gotta be able to find a way around this. And, just circumstances and different things. I don't think I would ever want to compete again, even if I was 20, 30 years younger, because the diet is brutal and I like food, you know! So, I wouldn't, I kind of wouldn't wanna go back into competing anyway, but I'd love to be able to train to that level. But the interesting thing is that my stoma doesn't hold me back anywhere near as my neck does! Hannah: Wow. I could honestly, Jay, I could talk to you for hours I really, really could. But I would love to do is, especially around the fitness side of things, if you come back and join me again at some point for another chat about fitness. Cuz I think you are an absolute, not just an ambassador for Coloplast, but you're a real ambassador for that fitness side of things and, well in the face of adversity as well! Cause like you say, it sounds like stoma was the smallest problem for you when it comes to the personal training and the fitness side of things? Jay: It doesn't have to be a problem at all. You do have to be careful. You have to be sensible. There are certain ways to do abdominal exercises, and it is really important that you always engage your core before you do anything. And I think you know the thing that I find frustrating about the fitness businesses is you know, after I had the stoma, I was talking to this chap in the gym one day who's one of the instructors, and he said to me, ‘wanna come to my abs class this afternoon?’ And I said, no, cuz a lot of the exercises won't suit me. He didn't know I had a stoma, I didn't bother to tell him, but I said something or other. And I mentioned engaging the core and he's about to teach an abs class and is looking at me and says, ‘what do you mean?’ Hannah: Oh God! Jay: And I thought, yeah, I thought, oh dear, okay, nevermind! But going back to the broken body builder bit…. And I'd like, yeah, of course, I'd love to come back and chat to you, I mean, talking about fitness is, you know, my thing…. Somebody said to me recently, do you not think you should change that hashtag Jay? You know, broken body builder sounds a bit negative. I said, why? I'm a bodybuilder, that's a bit broken, what's negative about that? Hannah: I love the honesty of it! And the thing is, you are still doing it, so you're not completely broken, you're just doing it, regardless of being broken. I love that, I absolutely love that! Jay: Yeah! So I think the hashtag broken bodybuilder is very me because it's kind of like, doesn't matter how many times I get knocked down, I will get back up again, you know! But I'm realistically fitter, and one of the other health conditions I've got again, which is an invisible one, is fibromyalgia. Now I'm fitter than most 25 year olds that don't have fibro and don't have anything wrong with them! Hannah: Yeah, well I can safely say you are fitter than me, Jay. I will certainly put my hands up to that one as I'm sat here at my desk! Yeah, you are definitely far, far fitter than me, and you would absolutely put me to shame! So I will definitely love to have you back, and thank you so, so much for joining me. It's been an absolute pleasure to meet you and I will really look forward to speaking to you again in the future. Jay: Pleasure to have, yeah, a chat with you, Hannah, and I'll look forward to doing it again sometime. Hannah: Thank you and to everyone listening, we'll see you next time. Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk