S5E2 Coloplast 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 am lucky enough once again to be joined by one of our Coloplast Ambassadors, the lovely Yvette. Hi Yvette!

Yvette - Hi.

Hannah - So if we do hear any background noise, please don't worry it is all normal. We just have snow days and puppy dogs everywhere I think for poor Yvette at the moment!

Yvette - It's just the regular chaos in my house!

Hannah - So Yvette, so as I've said you're one of our Coloplast Ambassadors. So if you'd like to just give us a little bit of an introduction about yourself. So where you're from and a little bit of your stoma history please?

Yvette - So I'm Yvette, I'm from Derbyshire. I am a stay-at-home mum of four kids. I had a stoma in 2013 after having been diagnosed with Ulcerative Colitis when I was 19 years old.

Hannah - Right, so you've had your stoma now, so is it the 10-year anniversary this year? I'm guessing then, 10-year anniversary?

Yvette - It'll be 10 years in July. Yep!

Hannah - Wow. How long were you on medication for or did you even go down the medication route with Ulcerative Colitis or were you straight to surgery?

Yvette - No. So when I was diagnosed, it was after the birth of my first child when I was 19. I went through sort of the pregnancy with him really struggling, bleeding, lots of visits to the toilet. The midwives decided that they just wanted to tell me it was hemorrhoids, which was a bit extreme! But yeah so I went through the whole pregnancy from about five, six weeks pregnant bleeding and lots of visits to the toilet then after the baby was born Alex the oldest, immediately after birth I must have spent an hour and a half in the toilet absolutely going to the toilet really not very well, and then it took them months to diagnose. But once I did have a diagnosis, initially they still weren't sure what was going on when Alex was six weeks old I ended up in hospital really seriously poorly and all sorts of things. They were guessing maybe Crohn's, maybe Colitis, weren't really sure, sent me home on steroids and I was absolutely fine, but then of course the symptoms kicked back in again and ended up being properly diagnosed when he was about six to eight months old. Over the next sort of like 12 years or so, I was on and off medication, so we tried the basics, the sulfasalazines, all that kind of stuff. And then before the birth of my second child, Morgan, sort of three and a bit years later, they put me on azathioprine, so immunosuppressants type stuff. That did work really, really well to start with, but then over time my body started to reject it, and it wasn't happy and my white cell count was just on the floor. So they had to stop that. And then over the course of the next sort of five, six years or so i'd say, it was up and down, in and out of hospital, high-dose steroids all the time. Until we got to the point in 2013. So the pregnancy with my third child in 2010 with Amber, beautiful pregnancy. My colitis was the best it had ever been. I actually thought it had gone. I know that's not possible, but you know, I felt that well, the pregnancy was amazing! But then on the flip side, 22 months later, when I had his sister Ruby, the pregnancy was horrific! The whole pregnancy I spent on 40 milligrams of steroids pretty much going up and down them, up and down them, really not well at all. But yet when I had her, the breastfeeding hormones and natural hormones from pregnancy, that big dose of steroids kept me on an even keel for the majority of the next 13 months. But yet when she was sort of 13 months old, it was very fast. Massive flare up came on really, really quickly. And then it wasn't controlled with steroids. We knew at that point, we knew I was getting steroid resistant. And I was admitted hospital, they put IV steroids in, that didn't work. They tried cyclosporine, they were going to try some of the biologic type stuff. But because I was still breastfeeding Ruby then at the time they were unsure if that was going to be safe. So they just went with the cyclosporine, which they knew that I could still feed with. The hospital were brilliant. They let Ruby stay with me, we had a little travel cot in the room. But even the cyclosporine wasn't working. I think my lowest point in hospital was at three o'clock in the morning. I'd got this 13 month old baby on my knee. I was breastfeeding and I sat on the toilet. I'd been on that toilet for best part of 45 minutes to an hour. And I just sat there and I sobbed like, I can't do this anymore. Absolutely cannot do this anymore. It's not fair on her. It's not fair on me and my partner at the time. He was staying in hospital with me because there was times where I was trying to dash to the toilet, I was holding a baby like I didn't have enough hands! I was rushing to the toilet, he'd have to bring the baby to me, if I would need to feed you know in the middle of the night on the toilet it was horrific, absolutely horrific and at that point I must have weighed 5 stone 5, I was on high-dose steroids. They were like look, the cyclosporine is not working, the IV steroids isn't working. The surgeon, which actually he ended up being a bit of a family friend in the end. Because a few years previously he'd operated on my Dad and done a bowel resection on my dad for sort of cancerous cells in his large bowel and so he already knew my dad very well. And so by that point there was rumblings of, maybe we should consider surgery, and just by pure chance that day my Dad was going, he'd been visiting me and he was going down in the lift and he actually saw his surgeon in the lift and he was like, you need to come upstairs with me! So the surgeon came to visit me and said, look Yvette, I'm going to be blunt with you… it's going to be a bag or a box! And you've got this baby here. And I think you know what the decision needs to be? And as much as I was petrified, and actually at that point, I wasn't so much scared of the actual surgery and having a stoma, that wasn't what I was scared of. I was a young Mom of what 31, and I had four children all at home. The thing that I was most scared of at the time was, I was petrified I was going to die like am I going to wake up from this operation? All the language that the doctors had used had been very much a case of like ‘oh you know your on high dose steroids, the infection rate is going to be really really high because your immune system’s suppressed you don't weigh very much, you've been poorly for so long’. All this kind of stuff and all this language that all I was hearing from the medical people was, wow this is really big serious stuff! And yes it was major surgery, and yes I did end up with pneumonia afterwards… But, just the whole language of the way that the medical professionals describe things and said things. It was petrifying, absolutely petrifying!

Hannah - We hear that a lot. It's almost quite negative language in there. I mean, we hear a lot of people say that ‘unfortunately you're going to have to have a stoma’. And there is that almost initial negativity. ‘You've failed medical management’. And I hate that phrase. ‘You've failed medical management’. No! Medical management has failed you! It's such a negative way around the language of things, and whereas there should be more positivity put on that. Like look, actually we could do this surgery for you that has the potential to make you so much better than what you are now. It's not put across that way.

Yvette - It's one of my biggest bug bears, massive bug bears! I mean even when I was only what, 22, 23... the gastroenterologist consultant that I had at the time, he was like, ‘ your Colitis is really hard to manage, unfortunately, I think at some time in the future, you're going to have to look at having to have your bowel removed’. But actually, if I knew then what I know now, I probably would have opted for surgery sooner. If I'd have known that I wasn't going to spend my life glued to the toilet anymore. If I knew that that child, that if my, you know, youngest Ruby, she was never going to have to be breastfed on the toilet. If I would have known all of that, I probably would have opted to have surgery sooner. Because to me it's a positive option. Not, you know, ‘oh, well, I'm terribly sorry, this is, oh, you know, it's the end of the line… Well, we've run out of options’. All these phrases, they just have these massive negative connotations that don't need to be there!

Hannah - Absolutely, and this kind of leads onto something I was actually going to say, and you've really already said it... That I think medication, yes, medication is fantastic! But actually sometimes, it's utilised too much…whereas you said, you wish you had the operation 10 years prior almost, and you would have felt that you'd had a higher quality of life then. And I think there isn't enough emphasis on stomas being that higher quality of life option. It's still even now thought of as being so negative and I do think it's such a shame. And I know that I've spoken to you previously, you know, I've had my own stoma which I've had reversed, and I went through a really similar experience to yourself where it was sold to me as a negative factor. ‘Unfortunately because of your family history, because of your Colitis, we're going to have to operate, you're going to have to have a stoma bag, unfortunately’. Oh, and all I can remember hearing is unfortunately, unfortunately! Nothing, ‘this is going to give you your life back, you're going to feel so much better now. It might be a little bit hard initially’… Let's not beat around the bush, we both know that it is hard initially. But, actually it's so positive at the other end of it. And it is frustrating when you hear it being spoken about like that.

Yvette - 100%! And also, the other thing. Like now, I’ve got problems that are as a result of the medications that I've taken like so from the steroids and all the high dose steroids and the long term use of it you know they've said that I’ve got the early stages of osteoporosis, so osteopenia, I've also got, you know scarring on my face and on my back from the steroids that gave me the most horrendous acne that I have ever had! You know, that stuff that I'm never going to be able to reverse or change or get rid of. It’s stuff that's stuck with me for the rest of my life. When I look in the mirror and I see the scars on my face, I'm just reminded of ‘oh, thanks Colitis! That was your fault that I had to take the steroids!’ But actually, if I'd have had the option or been given a more positive outlook on surgery by the medical professionals then I might not have all those things. But interestingly it's also not it's not just the medical professionals. It's the language that they use to the older generations as well. Because I can remember being admitted to hospital, I’d had a blockage once and been admitted to hospital, and there was an old lady across the bay and, you know, we got chatting as you do when you're in hospital. And she said to me, she said, ‘oh, you know, why are you in here?’ And I explained, she goes, ‘oh, you're too young for one of those!’. And I just thought, actually, do you know what? No, you wouldn’t be having a conversation with me if I didn't have it because I'd be dead!

Hannah - It's society as well. I think it's put in a box as being an ‘end of line’ or an ‘old person’ issue. It's not thought of as a curative procedure. And really, it is! Which now makes me want to look at the positive side I think. So… you had a horrific time with your Colitis, there's no two ways about it. So at what point then, would you say that you started to then really feel the benefit of life with the stoma? Did you have like a breakthrough moment where you thought, ‘oh my gosh, this is… wow!’?

Yvette - There was a couple of moments. One, interestingly, was literally within an hour of waking up from my surgery. Yes, I was drugged up, yes, I was not feeling amazing, but I did kind of wake up and come around and I remember being in the side room and I woke up and I thought, ‘wow, I feel so much better!’. Now, whether that was psychosomatic because I knew that, you know, this awful Colitis had been removed from me and, you know, hopefully my life was going to get better, I don't know? But there was that moment and then probably within another hour or so after having the surgery, people might think I'm a little bit gross… But before my surgery, I asked the surgeon, I said to him, I said, ‘look, would you be able to take a photo of my bowel when you've removed it?’ And he looked at me like I was completely absolutely psycho. And I said to him, I said, ‘no, no, no’, I love this kind of stuff. I've got a degree in healthcare and health science. You know, I want to see, I want to know, like I want to be able to place what has gone on in my head. And he came round to see me a couple of hours after I was out of surgery. And because I'd not opted for the morphine pump and I'd got an epidural, by this point, I was actually a bit more awake. And then he actually showed me the photo, and that was a massive penny drop moment for me. It was amazing because I was completely shocked, and not only was I shocked, I was like, wow...100% I've made the right decision. Once I saw that photo, I just knew. And if ever I have days of a wobble of thinking, why on earth I do this, you know, everybody who's got a stoma, they have days of wobbles.

Hannah - Oh, absolutely!

Yvette - But I only have to go and find that photo on my phone and take a look and go, you did the right decision, girl!

Hannah - The reason I'm laughing Yvette is that is I did exactly the same! I actually, I had a photo of mine. Unfortunately, mine has got lost throughout changing phones over the years, but I was exactly the same as you, I got a photo of mine! And as you said, there are those moments when you're having dark days, you have to look at, oh God, I didn't want that in me anymore! And it's those little breakthrough moments, and it's those moments of positivity. And you're right saying that not all days are good days, but they by far outweigh the days of Colitis when you almost have to try and pick out those good days with Colitis and now it's almost the bad days are few and far between. It's such a different lifestyle. So do you have any recollections on when you had things like your first holidays say when you had your stoma done anything like that or first day trips out?

Yvette - Yeah, so I have a very very vivid memory and must have been maybe four weeks post-op maybe.

Hannah - So quite soon!

Yvette - We went into our local shopping centre and we went into Pizza Express and I remember sitting there, yeah, I was still not great, but I remember sitting there thinking, God, this is amazing! I managed to eat a whole meal without having to dash to the toilet, without having to think, oh my God, I've got stomach ache! Oh no, I need to dash! All that. I just sat there. And I remember saying to my family at the time. I mean, I God, I feel so liberated! I feel absolutely liberated that I am not three mouthfuls in, ‘oh no, here we go, off we go… tell them to keep my food warm, don't let them take it away!’. None of that, it was amazing!

Hannah - I think it was Kathleen that we spoke to previous that said it’s little things like that. Being able to sit down and enjoy a meal with family without having to disappear off every five minutes to go to the toilet. Actually being able to enjoy that, sitting down and enjoying a meal with family and friends is one of those, you said the word exactly, absolutely liberating.

Yvette - It was entirely liberating! And then when I went on my first holiday after I'd had my stay in there. Yeah it was a bit different because I had to think oh, you know how much supplies am I gonna have to pack? Am I gonna get stopped at the airport security? And all those… It was it was a whole new way of thinking but again it was so liberating just simply because I knew I was gonna be able to actually have the holiday for a start, there was gonna be no sort of like questions till the last minute, oh, can we go? Can we not? I mean, there's been times where we've had to rearrange whole holidays from, you know, not flying, and cancelling, you know, aeroplane trips to changing them to trains and boats just simply because I needed to be near a toilet because I was in a flare-up! Whereas this whole now new way of thinking of like, oh, you know, I don't have to be dashing into a toilet every two seconds. I can pre-plan things. It was, again, completely liberating and quite emotional actually because it was sort of like, wow, it's like I've got a whole new life. Yeah, it was really liberating.

Hannah - It's like having a new life or getting your life back, I always say, and it does make you feel quite emotional sometimes. I still get emotional now and when I talk to likes of yourself and some of the other ambassadors, it does bring up my emotions. So you have to excuse me from time to time, I do get a bit emotional about it myself and it is, it’s those little factors, I say not having to rearrange things, actually being able to plan something and know you're going to be able to enjoy it because Ulcerative Colitis or Crohn's or whatever IBD you might have isn't going to come up and quite literally bite you on the backside at some point! It's, you're almost in control of your own destiny a little bit.

Yvette - Exactly. And all those things are so much more doable now. Like even learning to drive. I mean, before there's absolutely no way I could have learned to drive because the stress of doing that kind of thing, even just thinking about it would induce a flare up! Or even just, you know, sitting in a car, the thought of sitting in a car for two hours driving around and not being able to get to a toilet was just horrendous! Whereas in 2018, I passed my driving test. It was so liberating again to be able to be really nervous before my driving test and not have to go and do that dash to the toilet. You know, that sort of like nervous poo type thing! It just wasn't there! I just was so happy that I could go and I did it and I passed first time. And again, the same thing with my degree. During lockdown, I had four kids at home, all of them with some kind of additional needs that they need extra support with at school. I was writing a dissertation. I was dealing with the stress of the unknowns like we all were in a pandemic. And yet I didn't have the worry of having a Colitis flare. Yes, doing the degree, there's absolutely no way I would have been able to do it, to do the degree when I had Colitis simply because the idea of sitting in an exam, the stress, the anxiousness, all that kind of stuff, that would have just caused more problems then I needed at the time.

Hannah - To trigger, utter all those scenarios that you put yourself in are just complete and utter triggers! The biggest thing I can get from you Yvette is that your stoma has given you your life back!?

Yvette - 100% it's given me my life back. I mean, you know, don't get me wrong. There are still, you know, bad days, you know, I've got other health issues as well. But there are still bad days and I know sometimes you know they do talk about things like oh you know you'll be alright, you'll be well but yes I'm well but you know there is still the fatigue that I've got left over there is still the you know the issues with the bones from the steroids and all that kind of stuff and the aches and the pains. But from the point of view of living my life in the toilet, yes I've got my life back! And you know that's not to say that having a stoma doesn't come with its own trials and tribulations, you know the amount of times I've been in and out of hospital with blockages, being very naughty and eating things that I probably shouldn't and having adhesional pain and rectal pain and all those kind of things that come with having a stoma but even then they still seem doable when I'm not spending half of my life glued to the toilet!

Hannah - Yeah exactly it is, those little parts can become more bearable because it's not your whole entire life it's not your day to day to day to day, and I think everybody we've ever spoken to with IBD has said, it's those dark days where you are just spending more of your day in the toilet than you are out of it and that isn’t a way to live your life. And how that could be, should I say, how stomas can be thought of as a negative thing when that's the alternative? It just, it baffles me at times, it really, really does.

Yvette - You know, when Alex was really young, you know, when I was in the early days of Colitis, I took to having a toy box in the bathroom just simply because so the child could sit on the floor and I could read books to him on the toilet and we could play with Lego and cars and all sorts of stuff. And that's just not normal for a child to have to grow up like that with their Mummy glued to the toilet and then playing on the bathroom floor! Like you say it was those dark days and even days just like you know my father-in-law, he very kindly assisted with school runs and stuff. But there were days where like last minute I was supposed to be taking these children to school and I was glued to the toilet, and you know I didn't feel like I was being there for my children by doing the school runs, doing the Mummy thing! Because I was glued to the toilet and I said, ‘oh no, no, it's all right, it's all right, Papa's gonna take you to school today’ when all they really wanted was me! So that Mum guilt that every Mum gets, is just completely sort of like blown out the park really because it's just so much more when you're having to deal with your own long-term health condition and when you're trying to parent your child as well.

Hannah - Yeah, and again, we've spoken to others, I've also spoken about that Mum guilt because they’re not there as much as they want to be able to be for their children and have fantastic now that you're getting to have all these experiences with your family, your children, obviously the dogs as well! And if it's okay with you Yvette, we're going to be having your social media details in the podcast description. So people can have a little look at you, all the fun that you're able to have with the stoma and the dogs of course as well!

Yvette - Of course!

Hannah - Thank you so much for spending some time with me today and hopefully you’ll join me again at some point?

Yvette - Yeah 100%, lovely to see you and I'll be back soon.

Hannah - Thank you very much, I'll see you soon and to everyone out there we'll look forward to you joining us in the next podcast!

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