S6E8 Sophie Mixdown v2
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. Today I am joined again by one of our wonderful ambassadors. It's actually one of our new ambassadors, but I'm not gonna say too much, I'm going to bring her in and let her do the introductions herself! So, hi Sophie!
Sophie: Hi Hannah!
Hannah: Thank you so much for coming and joining me. I'm really looking forward to getting to meet you and hearing a bit more about you. So if you could just start off by telling us, where you're from, how long you've had your stoma for, and why you've had your stoma for me?
Sophie: Yeah, so I'm Sophie. I am 37 from West Sussex. I've got two kids, two dogs, and I work frontline for the ambulance service. So I was diagnosed with Ulcerative Colitis in May 2020, and then got my stoma in the November because everything went downhill very, very quick for me…
Hannah: Yeah. It tends to do, ulcerative colitis tends to, when it hits it, it hits hard!
Sophie: Yeah!
Hannah: So you've got an ileostomy then I'm guessing?
Sophie: I have yeah, yeah. Called Mona!
Hannah: Mona! I was gonna say, has it got a name! Do you know what, you're one of the rare female names. Most people seem to have male names for the stoma. I don't know what that says!?
Sophie: Mona the stoma, very moany!
Hannah: So you've had her, now she's coming up to three years old is she Mona?
Sophie: Yeah.
Hannah: Yeah. And how have you found it? Because you say you work frontline for the ambulance service and how has that been?
Sophie: Yes, it took me a long time to get back to work. cause obviously I was very, very sick for a long time. So I was out of work just short of two years, but I was determined to get back and get back frontline. And yeah, it's actually gone really well since, obviously I've gotta be mindful that I do have an organ on the outside of my body and I'm lifting patients, performing CPR. You know, it's a real manual job. But no, since I've been back it's all gone really, really well. Everything's managed well, work are really good at looking after me with it, so, yeah.
Hannah: That's really good, cause I think that's a lot of people's concerns when it comes to getting any sort of surgery like that is, can they go back to their normal day-to-day activities. And you know, the job you do, like you say, it's a very hands-on, almost like a manual job really. You, with the amount of lifting, CPR, I mean CPR I know from my time working in the hospital, CPR is, it's like a workout CPR is! It's hard work, it's not a little easy thing to do! So, that's amazing that you've managed to do that. So do you do shift work or are you fixed up with your shifts on days or anything like that? Or do you work with
Sophie: Yeah, no, I do, do shift work. I'm annualised though, so I've got the ability to be able to sort of pick and choose when I work. When I went back I had really severe, what is it, iron deficient anemia.
Hannah: Yeah.
Sophie: Which I still struggle with every now and then and have to have infusions for that. So it was agreed with Occy Health that I don't do night shifts, just because I can't even get to the evening, let alone throughout a night now! So yeah, I do just work days now, which works really well, does work well.
Hannah: Yeah, I can imagine. And especially for the function with your stoma as well, it keeps everything functioning a little bit more regularly than if you're having to try and switch around what your body's doing overnight and things like that, I mean, night shifts do take their toll!
Sophie: Yeah. That wasn't something I realised until I did what, I did a link shift when I went back to work and I was like oh my word! It's trying to manage my stoma actually in hours that I would normally be sleeping. And it just went to pot and I was like, no, that's not gonna work for me! Because, you know, it's just, you know what it's like shift working, it just throws your whole rhythm out and yeah, it wasn't for me going back to night shifts.
Hannah: No, I can imagine, I say it does, even with the best of us, it can mess around our bodies a little bit, so when we've got things plumbed a little bit differently. Because, you may not know yourself. Sophie, being a new ambassador, I've had a ileostomy previously, which I've had reversed because of ulcerative colitis. I've now got a JPouch, and when I used to do night shifts within the hospital, I used to really struggle with that, trying to, you know, almost switch my function around cause it would be functioning when I was trying to sleep almost, cause it’d be like… No, look, this is when we normally work! And I'd be trying to sleep thinking… No, no, just let me sleep!
Sophie: Yeah. Before I had my stoma, obviously I've done, I've been in shift work, for like 16 years now. So previous to my stoma, that's when everything went to pot on night shifts. It just, yeah. I really, really suffered throughout the night. So, it's not a good idea working nights with bowel disease!
Hannah: No, no. I, second that one quite, quite loudly! Another thing with your work is obviously you don't know where you're going to be from one moment to the next. How do you manage with changing, emptying the pouch? That's something that I am fascinated about.
Sophie: So that is so much better managed now. Like I say, like pre stoma, it was horrific, cause obviously my symptoms were like at the highest peak they've ever been. So every job we were getting to, I would be running to a patient's toilet before I was dealing with the patient. But now it's so well managed. I, fortunately, I don't need to take, I know a lot of people take things like Loperamide and that throughout the day, I don't need to do that. I just manage my diet, know when I'm eating. So, yeah, I, touchwood so far I haven't had to change a bag on shift, but I just empty every opportunity I get. So if I can pop in, you know, if we're in a care home, I'll use their toilet. If we're in a hospital, I'll use the toilet then. But yeah, I just, I think it's just, I feel like I'm kind of ‘back to normal’ in brackets should I say, like how anyone else would deal with it at the time. Yeah. So I've been really fortunate since being back.
Hannah: And like you say, and rightly so though, actually having a stoma is giving you that more control than actually, the bowel disease. Cause the bowel disease, you are going, when you are going and there is no holding on. So actually having a stoma there gives you that element of control back. So yeah, that's really good to hear. And I know you're saying about the physical, the lifting, do you wear any support garments when you're working? Do you wear any guards or things like that?
Sophie: So, I should wear a guard just simply because the risks we're at in work and I have been kicked, I have been punched, so, you know, there are those risks. But actually, I don't wear a guard just simply because I tried one and I found it so uncomfortable under my uniform, so I just wear a really good support belt. So I've got nice, tight, high, high-waisted pants. I wear my good old sucky in pants, and then I've got a support belt on top of that. And then obviously our uniform is so thick as it is, you know, you've got the support from the uniform as well. But yeah, I'm really well supported with what I do use.
Hannah: So I know you touched on your home life at the start of the podcast there Sophie. So you've got children and was it a dog as well? Did you say you've got a dog?
Sophie: Two kids. Two dogs!
Hannah: Two kids. Two dogs! How have your kids coped with the surgery side of things with you? Do they understand a lot about it or…?
Sophie: Yeah. So they have been absolutely incredible. To be honest, the second dog came along as a result of the guilt I felt of what they went through! It was one of things, they’d witnessed some awful, awful things that no kids at their age should have seen. And as a Mom, I had horrendous guilt. I remember when I'd be laying in bed, so mid treatment, I was put on a chemo drug. And obviously all my treatment had to be at home until I went on to biologics because I was in the peak of Covid. And I just remember their faces when they'd walk in my bedroom door and look at me in bed. And it was just pure fear, fear in their faces, and I've never felt so heartbroken and crushed for them just to see. Like I remember at times they'd say to me like, ‘are you gonna die Mummy?’, and things like that. And it was just awful. So yeah, the second dog came along as a result of that because I was like, how can I make things better!? Let's buy them a puppy, and puppies resolve everything! Which actually, he's the bane of my life and he tried to break my leg not long ago, so we won't even go there with the dog!
Hannah: Oh my God!
Sophie: Back to the kids. They have been incredible, absolutely amazing. And, we're actually going through the same, well, very similar journey now with my daughter. She's being tested for bowel disease…
Hannah: Oh gosh!
Sophie: And polyp syndrome and everything, so she's totally understanding. And my youngest, yeah, he freaks out a little bit. Like if he's to see Mona, he's like, ooh!! But they're both the most understanding kids ever. They talk to their friends about it, they educate their friends about it. They're just amazing. They really are incredible kids, yeah, I'm really lucky.
Hannah: So you say your daughter's being currently investigated as well?
Sophie: Yeah. So I didn't sort of mention it before, but I got before my diagnosis of Ulcerative Colitis, I was diagnosed as Serrated Polyposis Syndrome, which was a really aggressive polyp syndrome that is at really, really high risk of colorectal cancer. And I would have colonoscopies every 6 months to have the polyps removed. And I went from sort of one polyp to 10 polyps to hundreds of polyps to thousands of polyps! And then my entire colon was polyps! And so the kids have actually gotta be investigated because of that, cause it turns out I've got a hereditary gene that you know, so they've now gotta go through the testing. But my eldest was actually starting to show symptoms of bowel disease, you know, passing blood in her poo, the pain, fatigue. So yeah, she's under Paediatrics now, and they have unfortunately found, she's got polyps. So she's been referred to specialist for that, yeah, we're going from there really. It's all at very early days, we were only in hospital last week having that all done, so…
Hannah: Oh, bless her!
Sophie: Yeah, and my youngest will be tested as routine probably over the next couple of years, yeah…
Hannah: Well, fingers crossed she, she does. And at least, I suppose the one good thing is that things seem to be being caught early and can get some early management in and…
Sophie: Yeah, she's actually got a really positive outlook at it because she's like, look at you now, Mom! You are living your best life now! So she's like, you know, if I can be, you know, she's great. She just very much looks at, yeah, things were really tough for me, but now my life has completely changed and so she's not negative about it. She hates living with the condition at the moment, but she's really positive that at some point it'll be all right.
Hannah: I must admit, I've not heard of that polyp syndrome before. So just remind me, what was it called again?
Sophie: It's called Serrated Polyposis Syndrome. It's very rare, very, very rare. And we dunno where it's come from. It's sort of assumed that I'm the first within the family because no one else has got a history of anything. But yeah, it was just found routinely going for a colonoscopy when I started to have investigations.
Hannah: And do they think that was linked to the Ulcerative Colitis as well? Is it known to? Or is that just completely a different thing alongside?
Sophie: So my Ulcerative Colitis, so I was misdiagnosed for about eight years and it was probably missed and actually my consultant did call me in the end and give me like a personal apology for completely overseeing the Ulcerative Colitis because he admits he was so focused on the polyps and how many they were that he didn't take into account how severe the inflammation was. It was only when I hemorrhaged at home and got rushed into hospital, they then found that you know, I had, in their words, one of the most severe cases of Ulcerative Colitis that they'd seen! But yeah, it was just overseen by the polyps. So I don't know, I'd say I've been suffering with Colitis for 15 years, but it was just overlooked because obviously they were so focused on this polyp syndrome cause it was so aggressive. But yeah, that got picked up really last minute, and like I say, it just all spiralled really, really quickly.
Hannah: So did you went under some treatment initially for the Ulcerative Colitis. I know you mentioned biologics, and I know you mentioned a chemotherapy drug as well. What drug was that that you were put on?
Sophie: So, yeah, so I started on the steroids, horrific drug!
Hannah: Yeah!
Sophie: I won't say too much though cause I totally get people having to, you know, be on steroids 24/7 for their treatment. So, but for me it wasn't a very pleasant drug. So I went from steroids onto, I dunno if I'm pronouncing it right, but Mesalazine.
Hannah: Yeah.
Sophie: And then obviously onto Azathioprine and then I went onto biologics, which biologics I had via infusions in hospital. So that was the only time they actually had me in because of Covid, they actually got me in, and my initial diagnosis. I was kept in hospital for a few weeks, but then all my treatment was at home. But like I said, it was only over a short period of time. I got my diagnosis in the May 2020, and then my surgery was November.
Hannah: Quite a frightening time, I imagine to be in hospital at that point as well, in the May 2020 cause of course there was no visitors, it was very much locked down at that point. How did you manage being in hospital at that point? Cause obviously you were given this brand new then, diagnosis, which must have been quite overwhelming at that point, and not being able to have people around you in the same way or anything like that it, how did you manage at that time?
Sophie: Yeah, it was really hard cause obviously right up until the point I was in hospital, I was working frontline. So I, you know, we were dealing with really sick patients and it was really frightening taking people in their thirties into hospital knowing they weren't gonna be coming out. So going in as a patient, I was terrified. And I know we look back in hindsight now and think, God, Covid, you know what it done! But, it was absolutely terrifying at the time, and it was just so lonely and isolating. Like, I remember being dropped off at the door, by my Mom and just sobbing, just sobbing that I was gonna be alone throughout all of it. And, I, yeah, I quite openly admit now it's had a big impact on my mental health in the sense I'm terrified of going back into hospital as a patient. But I have to remind myself it'll be very different, you know, because, it would be very different if I had to go in again because we're not living through a pandemic now, so I'd be able to have that support. The staff were incredible, absolutely incredible. You know, they totally got that we didn't have our families and they really upped their game. They were the support that I think everyone needed in that time. But it was just so isolating, and I think I shut down quite a bit. I didn't wanna talk to people like, you know, I'd have family, friends, FaceTime and everything. And I was like, I just don't… I don't wanna, I don't wanna communicate with anyone. I just wanna shut down my whole world. I can't believe what's happening sort of thing.
Hannah: Yeah, I understand that completely. It's almost putting everything in a box, isn't it? And if you try and open that box and look outside that box, it all becomes a little bit scarier. So I get that completely. Put the lid on and just shut yourself away, I understand that completely. Like you say, you saw the worst side of side of Covid in the early days working on that frontline, and I cannot imagine how terrifying that must have been. I mean, I worked in the hospital at that point, but I was still working within my specialist role, so I was almost protected a little bit from that side of it I'd say. I mean obviously when I was going onto the wards to see patients, I was still seeing it, but I could almost keep it semi at arm's length at that point. And you know, you guys to me, on that frontline out there, the ambulance crew, the A&E crew, you guys were all my absolute heroes. I think you guys were the absolute heroes of Covid and what you were able to do.
Sophie: I assure you it didn't feel like it, you felt like you were failing in your job because like I say, people were so sick and you couldn't help them. And it was, you know, we did everything to help and it was just seeing the amount of deaths and everything we were seeing in front of us was just, yeah, we certainly didn't feel like those heroes that everyone was clapping for.
Hannah: Yeah. The, the good old claps, so the Thursday night clap.
Sophie: Yeah. Thursday night clap!
Hannah: Thursday night clap. Yeah, remember it well, remember having a few bottles of wine off the neighbours as well, that was always quite nice! But yeah, it, like you say, it does almost feel a bit like a dream now, doesn't it? That Covid and what we…
Sophie: It's really surreal!
Hannah: Yeah, surreal is the absolute right word!
Sophie: Yeah. And it's like I never went into the service to work a pandemic and I never wanna work a pandemic again! It's just, yeah, it's, it is totally surreal, there's no other words for what it was like working throughout that time. I won't miss it!
Hannah: No, definitely! Like how did you find it when you went back to work and obviously the work you were going back to was totally different from the work that you left. Did that feel strange as well? Cause like I said, when you went off, it was, a pandemic and you came back and it was almost, I imagine like, well, what pandemic?
Sophie: Yeah, exactly that, exactly that. So obviously when I went back, we were still in PPE, you know, the masks everything. But it was, it was really, it was very much back to normal and all sort of, you know, your standard jobs. And it was actually quite nice, it was a bit of a breath of fresh air to actually not be Covid, Covid, Covid! That's all we had sort of down our throats 24/7. I also think my attitude changed a lot towards people and ailments that they were coming to us with. So I, previously to my own diagnosis, you know, I'd go out to sort of Crohns, Colitis patients, abdo pain patients and be very much, it's a bit of abdo pain, I've been suffering that 15 years you know! What do you actually need an ambulance for!? But my word, when I actually went through it all myself, your whole view on the condition changes completely. So my view towards people that have got anything abdominal related, whether it's, you know, colorectal cancer, Crohns, Colitis, Diverticulitis, I just see it so differently now, and I just feel also my attitude towards… we’d get so many people that would literally be sobbing at us like, don't take me to hospital, I really don't wanna go to hospital! And I totally get that now. Being a patient, I totally get the whole why they don't wanna go in. And it's mostly the older generation, you know, they, they plead with us to not take them in, and we never will unless they have to. You know, if they, you know, unless they have to go in, if there's any way to keep them at home, we will. But I just get it, I totally get it on another level now that I didn't understand previously. Previously, I used to just be like, What's the issue? You're going into hospital and you're being treated! But now having been a patient, I think, no, I see it from a different side, very, very different side now.
Hannah: Yeah. It's, and being a patient is, it makes you feel so, so vulnerable doesn't it? It's that vulnerability that you feel as a patient. It's, I remember, I think my longest hospital stay was about six weeks and I just, I remember just feeling at the mercy of everything going on around me, and it was so, so scary, so intimidating. I know you're hearing, cause it was before I even worked in hospitals as well and all I just remember is hearing all these machines bleeping all the time…
Sophie: I find that quite triggering now actually. If I'm, like, if I hear sort of the bing bong, the bing bong of all their machines, I do find things like that triggering, and smells. So obviously I'm in and out of hospital all the time with patients, but there's just certain things that I think, you know, I'll suddenly get flashbacks. I'm like, God, yeah, it's… There's a lot of triggering things and like I say, I can't fault the staff. It's just, being a patient and like you say, that total vulnerability and you are accepting everything people are telling you. You know, bring on the drugs, bring on everything! Just make me better! Get me out of here!
Hannah:. Yeah. Please just help me, help me! But you're saying about smells. I've got my one smell that's, a trigger. Because, I dunno if you had this when I was trying to recover and everything, I remember having Fortisip drinks virtually forced on me! And even to this day, the smell of those. Oh my God, it actually turns my stomach even thinking about the smell of it! And I remember having to give them to a patient and go, oh, it's really good!! Just like, oh God…!
Sophie: Yeah, I'm exactly, I totally get that! And that's, that's a bit actually how I feel about bowel prep. When I was making my daughter bowel prep last week, I was literally urgh, oh God, like, you know, I'm heaving to the, the smell of the bowel prep and, yeah, there definitely are some funny triggering things. And like you say, you just suddenly remember something. You are like, oh my God, it's that, that's what's triggering me!
Hannah: Yeah, it's strange how the brain works like that, isn't it? And it throws it on you as a curve ball almost when you're not expecting it.
Sophie: I think I've done bowel prep, I was trying to work it out. It's minimum 18 times I've done bowel prep! You know, you just think about how many more! And so now when I have to have, cause I'm supposed to have MRIs every 6 months because in my surgery they found a really, really rare cancer in my appendix, so they removed it all. But because this particular cancer leaks, what's called Amucin, it's a clear liquid into the bowel cavity, they say it doesn't present with symptoms. So I have to have MRIs every 6 months to just make sure that this cancer hasn't spread and isn't there and things. And it is still doing that you know, that drink you have to do for a small bowel MRI, I can't think of what it's called, but that's like a bowel prep and yeah, I just sit there heaving every time. I'm like, how many more of these do I have to do!?
Hannah: Urghh, and I presume everything's okay at the moment with your MRI’s, there's been no concerns or anything like that with your MRI?
Sophie: Yeah, I know I'm extremely overdue. I'm probably about 18 months overdue an MRI actually. But it's the NHS at the moment, isn't it just playing catch up all the time. So hopefully that will come through sooner than later. But yeah, it's all, each time I've had it's been all good.
Hannah: Thank you so much, Sophie. I mean, I find your story so fascinating cause there's a lot of different sides of things that we've discussed today that we've not discussed before. I mean, with the job that you do, being able to go back, and also with your polyp disease as well, and the fact that your misdiagnosis came because of that, and it's really interesting to speak to you. One thing, I've taken to asking people now almost as a closing statement is, is there any bit of advice you would give to either another patient, another sufferer, or even to a stoma nurse, a stoma surgeon? Is there any advice that you would want to… what would be your top tip, top bit of advice?
Sophie: Oh, so my top advice for stoma nurses and stoma surgeons is… speak to us. You know, speak to us that are living it and get more experience from us living it. They're all amazing at their jobs, they're all incredible at what they do. But a lot of the time they don't have that first-hand experience. So speak to the patients themselves and you know, they shouldn't be ashamed either to ask. I think they feel, you know, especially surgeons, that they’re of a hierarchy that they shouldn't be asking the patients these sort of things. But absolutely ask us cause we're living the experience. And then with patients, you know, new diagnosis, long-term treatment, whatever it is, reach out. You know, there's an incredible community out there now. Like I found all my help and advice through Instagram. It's just I do nothing but praise Instagram now for all the help and support I found. And that's what I do now. You know, I've got my Instagram that I spend all my time trying to raise awareness, trying to put the word out there and I get so many messages like, how did you go back to work? How did you do this? How did you deal with a blockage? You know, all that. And I just love it. I thrive on helping people. So please just get online and reach out for help, cause there's so, there are more of us out there than you think. And a lot of us in this age bracket as well, so many people think it's the elder generation. But to summarise, go grab life! That is my main quote!
Hannah: So what we will do as well, Sophie, we will pop your Instagram handle in the podcast description as well so that people can have a little look as well, because, well see you about what you a Mona are up to!
Sophie: Yeah, us 2 and our adventures!
Hannah: Yeah! So again, thank you so much for joining me, and I really hope you'll come and join me again at some point for another one?
Sophie: Oh, I'd love to Hannah, it's been so lovely meeting you. I've loved chatting, so definitely a hundred percent, get me in there!
Hannah: Oh, it's been great meeting you too. Thank you so much, Sophie. And to everybody 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