S6 Ep1 – Expert by Experience Sarah 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 once again joined by one of our lovely Coloplast Ambassadors, Sarah. I am delighted that she has come to join me today to discuss a little bit more about her life and experiences with her stoma. So hi Sarah.

Sarah - Hello Hannah, thank you very much for having me.

Hannah - No thank you so much for coming and joining me, how are you?

Sarah - Yet not bad, thank you trying to keep warm!

Hannah - Yeah I think we all are, it's a little bit chilly out today, there is currently snow on the ground outside so we are all huddled up in the warm at the moment trying to keep warm. Can you tell us a little bit about how long you’ve had your stoma for, why you had your stoma and a little bit of all of that please?

Sarah - I've had my stoma for coming up for 16 years. One of the more unusual reasons really, I had a rectal vaginal fistula. Never really got to the bottom of why, all a bit weird, My troubles started, I had my ovaries removed pro-phylactically, my mum had ovarian cancer in her forties. And I'm a research scientist and I went to a talk, lunchtime talk at work, which was all about the BRCA genes and risks. And the take-home message was at this point, to be fair, it's quite a long time ago, was that screening for ovarian cancer is not great if you've had your kids, have your ovaries out. So that's what I did. No problem there, but about six months later I started to get a bit of bleeding. I thought it was probably the HRT, so ignored it. And you know as woman, downstairs business, what do you do, don't think about it as much as you can! And then much to my horror, I started to think actually, I don't think it's just blood, I think there's poo. So I went to my GP and got referred initially to a gynecologist who sent me straight over the hospital on the same day to the Colorectal clinic. That's when I was diagnosed with a rectal vaginal fistula. So my youngest child was three. She was over 10 pounds, flew out quite quickly, but I’d really had no symptoms before that. So it was nothing to do with my ovaries being removed in the HRT, but that's what kind of triggered me. So never really got to the bottom of it. Saw the surgeon, he said, what we need to do is put a seaton stitch in for a few weeks to drain the fistula, come in, have a repair, jobs a good’un, and 70% chance of success. And to be honest, I didn't even think, it was going to work, wasn't it? I had no reason to think it wouldn't. So I went for the surgery, had a repair, after having the seaton in for six weeks. Thought there we go sorted, back to normal. No! About three days later it failed and it failed pretty spectacularly. Looking back it was just awful. It was probably the proper low points and now I was leaking poo vaginally 24-7. So whatever they'd done I think had repaired it but it had failed and made it even worse. So I ended up going back to the hospital, Sunday morning 6am, it was my sons 10th birthday actually, so I had 50 kids coming round for a go-cart party in the afternoon and here I am back at the surgical emergency unit to see, as it happened my consultant who was on duty. So that's when he said, hmm, I think we should probably have a bag, at which point I said, well, how does that work? You know, I was 32. Stomas are for old people aren't they? And, does it smell? And I have to say, the words that stuck in my mind were, when I said, does it smell and can I go to work, he said well… they can be a bit noisy but the stoma nurses will sort you out! He wanted to do it there and then, but as I said, I had all these boys coming around for a go-cart party, so what you do when you're a mum, you know I've got to go home. So we agreed that we'd sit on it for a bit. I was due to go to Cornwall in a few days and I thought well I just won't eat and take lots of Immodium, I'm going to be fine. It wasn't, I didn't go to Cornwall, sent Steve and the kids to Cornwall and I went to the hospital. So had my stoma, and to be honest it got rid of the fistula symptoms which was fantastic, but it was a bit of a shock. And to cut a long story short, I then had six further fistula repairs, which eventually did work. They used the gracilis muscle in my leg, but by this point my sphincter muscle was shattered. So the stoma was going to stay. But on the positive side, we're talking, you know, a few years down the line now, I'd become involved in patient support, I'd met a lot of people, it wasn't the end of the world. I'd been on holiday. I didn't like it, I still don't like my stoma, but I'm damned if it's going to rule my life. You know, so I'd started irrigating after about three months, which gave me a huge amount of confidence. As I said, I’d become involved in patient support, which I loved. I like to think if I can make somebody just a little bit less scared then I was, then I've done my job. Moving on a few years, because I've got this dodgy schincter muscle, I had quite a lot of trouble with mucus leakage, so it would leak a lot. It would feel uncomfortable, feel like I really needed to go to the loo, but it was just a little bit of mucus. So after eight years of having my stoma, I had my rectum removed, having actually previously tried a sacral nerve implant to stop the mucus, which hadn't worked. It was a bit off-spec, but we gave it a try. So I had my rectum removed and I got a two for one because they fixed my hernia at the same time!

Hannah - Gotta love a buy one get one free!

Sarah - And it was a big decision. You hear a lot of scare stories about having your rectum removed, but I kind of went into it thinking, do you know what, I hope I've got a fair few years left and I want my quality of life to be the best it can be. I've got no bowel disease, so I'm hoping that I've got a bit of a head start in terms of healing. And do you know what? I love my Barbie bum! It was the best decision I made. You know, it's been perfect. So where I am now, 15, 16 years on? I still don't like my stoma, probably never will, but I accept it, it is what it is, but I try and be in charge of it as much as I can.

Hannah - Do you know what? I actually really love your bluntness there of saying, I don't like it, and those words, but I'll be damned if it's gonna rule my life. And I think there's a lot of expecting people to get their stomas, it's gonna be wonderful, it's gonna be great. But especially with the way that your stoma happened, I think, I don't blame you for feeling like that, I think you're right. It wasn't something that saved your life. It wasn't something that you'd experienced horrendous pain or poor quality of life with for years on end like we see with IBD patients. And you were also told really that this stoma was probably only going to be a very temporary thing just while they sorted out another issue that was there. So do you think if maybe things had been spoken to you about more in the first place, that this stoma could have been a permanent fixture. Do you think that may have changed your attitudes or…? The reason I ask you, one thing I'm very passionate about is medical people and the attitude to stomas and stoma surgery and you already touched it on yourself briefly as well, that sort of negativity regarding stoma surgery. So do you think if there'd be more of a positive introduction to the potential of a stoma, you may have thought a little bit differently?

Sarah - I did bring this up. And those that know me will know, I've got quite a few soapbox objects!

Hannah - Haven’t we all!?

Sarah - This is possibly one of them and I did say to the surgeon early on, why didn't you tell me that this could be the course? You know, I went in very much thinking this was a temporary measure and his answer was more along the lines of he didn't want to put the worst-case scenario forward, I guess. I've got one of my soapbox objects is the way you're told you're having a stoma is communicated, you know, as a last resort. I know that's more of a case in IBD perhaps, but for me, it was put to me as a negative thing. Just his face, you could see it screwed up. You know, I think we should probably have to give you a bag. You know, it wasn't a… this is what's happened. We should try a stoma because that will relieve your symptoms and make you feel so much better. And I think it's probably very difficult because every patient is different. I very much would like someone to be blunt and honest with me, but I do understand that some people will be terrified if you give them the worst-case scenario in that could be permanent. So I don't think it's a cut and dried answer. Yes, I think I would have preferred it, because I kind of lived my life for a fair few years from repair to repair, waiting for it to work, and then further down the line waiting for it to fail, if I'm quite honest. So I think it's a big thing, and I think you're absolutely right in that I do sometimes feel that there's this huge pressure on you to love your stoma. And I completely get that the positive things on social media are fantastic. But I think potentially some people do get put off by that because it isn't all fantastic and it didn't save my life and I wasn't in pain. So I think I am in a little bit of a different situation to a lot of people. But I'm not going to pretend to love it when I don't. And I think by trying to be a bit more vocal about that, perhaps other people who accept it. I think acceptance is the big thing. You need to accept it because it's going to be what it is. But why do I have to love it?

Hannah - Yeah. And I think there is that thing, like you say, there is a big difference between loving something and accepting something. And it works both ways. You can love something. It doesn't mean you've accepted it and you can accept something. It doesn't mean you love it. I think that is a really important thing that you talk about there. The other thing I wanted to ask you, I know we spoke about it before. Was the fact that you went down the irrigation route. Was that your own personal choice or was that something that was spoken to you by your stoma nurses and your consultant at a very early stage, or was it something you'd looked into and researched yourself a little bit?

Sarah - Well, between seeing my surgeon on that Sunday and meeting the stoma nurses a few days later. My stoma nurse Simon Turley in Oxford was absolutely fantastic. He's so, so patient, but those three days between that I'd written my life off. Basically, I was going to get a stoma, I was going to be like an old lady who pooed out of her belly and smelt. He totally turned that around and made me realise this is what I need to do. And during that three days, I'm a research scientist, I was online looking at flipping everything! I found a forum that was run by another ostomate, and I found people on there and I think then I did hear something about irrigation but it was all too much. But when I had my surgery I had all of the leaflets and it was mentioned. And over time, I mean I did it quite quickly, but over the next few weeks I spoke to people on this made me think, yeah, do you know what, this is something I want to do. Straight away I suffered with pancaking, could not solve pancaking, and tried every way round you could try and fix it, and nothing worked for me. So that was a big thing, I was forever pushing it down. I think I was lucky in that I didn't really suffer with leaks or sore skin or anything, but irrigation I felt was, it was the control thing. I actually started irrigating three months post-op. So I made an appointment, so the stoma nurse ordered all the kit, and I made an appointment with him. Poor bloke, I'd had chicken korma the night before I did feel sorry for him! But he was, you know, you need like six pairs of hands to irrigate the first time. So what I did was I irrigated three days during one week with him and then I was on my own. But during that time with him I didn't stick the sleeve down properly so I had a little muddy river. But that's lesson learned.

Hannah - Absolutely!

Sarah - And then when I came home I'd got a hook in the bathroom that wasn't high enough. So the first day I did it, my husband was there holding the bag up, water bag, and then we got a high hook. So it was a very steep learning curve, but I have to say within probably a week, I realised that actually two hands probably is enough, and it became more of a routine, and very quickly I realised that actually most of the time one hand is enough, and the other hand can be playing Candy Crush, you can watch Netflix, you can read a book, I've been known to write articles from my deck chair in the bathroom!

Hannah - All your most productive work is done whilst in the bathroom area!

Sarah - Exactly! And it's for me, it's the confidence. For me, it's psychological more than anything. So I irrigate, I tend to irrigate every day because I've got quite a fast transit, although I can push it to like 36 hours pretty comfortably. But for me, it's knowing I'm not going to get sore skin. If I get any output, it's going to be a little bit, it's not going to be much. And I can pretty much forget my stoma for 24 hours or 23 of the 24 hours. Which I almost feel when I get together with the other ambassadors, I almost feel like a fraud because ‘touch wood’, my stoma’s, see I've said it now, it's going to go wrong isn't it!? But, my stoma’s so well behaved that, you know, it's a pain in the arse sometimes, there's no denying it, but it is as good as I think it needs to be to make me happy.

Hannah - So you say you irrigate once a day but you can push it to 36 hours, so I pressume that if you're going out somewhere for a day and you might be a little bit late back or things like that…?

Sarah - Yeah, well I make it work for me, so what I tend to do is Monday to Friday I'll irrigate in the evenings. Then I will probably, so I'll irrigate Friday evening, skip Saturday evening, do Sunday morning till Monday night. So that way I get time. But if I'm going anywhere really, I will think about what works for me. If I'm going out for the evening, I'll irrigate in the afternoon or push it to the next morning. It's, I know that stoma nurses will like people to sort of keep the same sort of time of day to start with. But anecdotally, I would say that you, hopefully would be able to make it work for you and fit into your schedule.

Hannah - Absolutely and that's the way I would always encourage people to work as well. You've got to make it work for you. Same when people, you speak about changing their pouches or when should I change it? When you want to, when it works for you, it's no right or wrong time. It's when it works for you. What I always love about speaking to you Sarah is the fact that you have literally just made your stoma work for you and your lifestyle. So you made it work around what you want to do. I know you've said you were a research scientist, as a job, so you're still doing that now? You still work within that now?

Sarah - Yeah, so I work at Oxford University as a research scientist. I work on Duchenne Muscular Dystrophy. So very different to, you know, what I do as my patient side. Although I think it's helped having the scientific background to get involved in research in the stoma world. But I've been in the same job unusually, actually, in research for 25 years. So the people I've worked with have seen me through all of my health crap as I call it. And have been so supportive it's been fantastic.

Hannah - And do you find that your own personal experiences have almost helped you within your research role as well, taking on a different side, more of a medical being on the other side of things almost?

Sarah - I think it's probably the other way round, because I'm very lab-based research. So it's an applied research to a disease, but I'm away from the patients. Although I think, you know, we're trying our best to cure the horrible disease, but I think the other way round, in fact, I think with my scientific background has helped hugely with my input into the stoma world, because I'm not scared of reading a paper and seeing what happened. So I've become involved as well as patient support and work with Coloplast, I'm the chair of the Patient Liaison Group for the Association of Coloproctology. So we work with them to have a patient voice throughout their charity in terms of the surgeons, which is really good. And I've sat on a few clinical trial studies and I think the scientific background there has helped a lot and combined with my personal experience through my health crap. It comes together quite nicely and I absolutely love it. I've always said loads of times, there's a few things, if I win the lottery… I'm going to go on Irrigation Roadshow around the country to help the nurses that are less confident. And I would, like a shot be involved in patient support full time.

Hannah - You saying about irrigation then, and I think it is one of those things that possibly, isn’t used that much, maybe it is down to a knowledge base, maybe it's down to almost like a confidence, I don't know. But I think hopefully by listening to yourself and seeing those really positive experiences regarding irrigation, give not only patients, but nurses the confidence to go down that irrigation route more often. You say you went down irrigation what we from the nursing side things would say was quite soon as well, three months. I think we always said about six to 12 months. So really interesting here that after three months, and not just irrigation, but irrigating so successfully as well. I mean, I say, 15, 16 years later, you're still doing it and with ultimate success. So really, really positive experiences of irrigation, which I absolutely love to hear as well, because you tend to only hear the negative sides of irrigation when it's failed and people are having to go back to this. You don't hear the long-term positive story. So I really like hearing that from yourself.

Sarah - Yeah, and I used to be a trustee with Colostomy UK and I spoke to a lot of nurses at ASCN year after year. And I think patients feel there's a reluctance from stoma nurses to help them irrigate. I don't think it's a reluctance, I think there is a confidence thing, because it is quite a big deal. If you're a stoma nurse that's never taught somebody, I imagine it is quite scary, as scary as it is being a patient trying it. But I always feel that irrigation isn't for everybody. Not everybody can irrigate, not everybody wants to irrigate, but if you can irrigate and you want to irrigate, I really hope people can get the support to try because it's absolutely true to say it completely changed how I felt about my stoma and life with a stoma. It sounds like a bit evangelical even, but it is, I think if you speak to a lot of irrigators, they'd say the same thing, it just makes such a difference.

Hannah - Well, it's been the difference between you being able to accept life with your stoma, to well, potentially who knows how you may have felt the other way if you haven't been able to irrigate?

Sarah - This is it. I mean, I'm sure I would have got on fine and life would have been all right, but to have the extra level of control if you’re able to do it then it makes a difference.

Hannah - It really, really does. And one of the biggest pressures that nurses feel now, is time we all see about pressures on time with the NHS. And it is having that time for nurses to learn new skills and ultimately then pass those skills on to patients. And I think it just shows really the value of those nurses, that it's not just what they do now, but how much more they can do if they're given the time and the resources to do it. I think that's so important to think about as well. That said, there’s probably nurses out there that would love to be able to give their patients more opportunity to irrigate, but the time restraints that they're under. So we need you to win the lottery Sarah and go on your Irrigation Road Show!

Sarah - We do! We need to go on my Irrigation Road Show. Anybody who's interested in learning and teaching.

Hannah - There's the solution!

Sarah - Simple isn't it? There's just one slight problem… I'll let you know on Sunday morning. I'll let you know!

Hannah - Okay, I'll wait with baited breath! But thank you so so much again Sarah for joining me, it really is a pleasure to have you back and hear a little bit more about your life with your stoma and your irrigation because it's not something we hear about so often, not just the irrigation but the reason behind you having your stoma as well, two quite rare situations almost irrigation and the fistula being the reason you had your stoma. So really, really interesting. So thank you so, so much and hopefully you will come back and join me again at some point?

Sarah – I will! Thank you very much, you know we like to talk us ambassadors so anytime!

Hannah - Oh, I love it. I love it. So thank you so much and I'll see you again soon. And to everyone else, thank you very much and look forward to you joining us next time.

Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk