Narrator: This podcast is intended to support UK healthcare professionals with education. The information provided in this podcast is not a substitute for professional medical advice or treatment, and patients are encouraged to consult healthcare providers, including nurses, for any medical questions they may have.

or concerns.

Hannah: Welcome to stoma and continence conversations from coloplast professional where health care professionals and experts by experience discuss the latest hot topics in the worlds of stoma, continence care and specialist practice. I'm Hannah Patterson, I've worked in specialist care and I'm currently the ostomy care associate education manager at coloplast.

On today's podcast, I'm joined by Coloplast Osteomy Ambassador Gayle.

Gayle: So I had contacted New York Marathon. We'd been having a lot of negotiations about how I could take part and use the equipment I needed. And most importantly, having enough hydration with me and carry all my stoma and catheter equipment.

We couldn't come to a satisfactory conclusion and I ended up having to pull out of the New York Marathon.

Hannah: Hi Gayle, how are you?

Gayle: I'm fine, Hannah. How are you?

Hannah: I'm really good, thank you. Now, obviously, we've not met you before, and I've met you before, obviously, but our listeners out there haven't. So, if you could just start off by doing a bit of a background about yourself, so where you come from, and a bit of your stoma story, if you could.

Gayle: Okay, so, uh, I'm a Fenn girl originally. I grew up in Cambridgeshire, uh, in a little tiny village, uh, went to school in my Wellington boots because it's always so wet down there. I have a stoma because I had, uh, really severe endometriosis. So about 20 years ago, I was a junior doctor running around the hallways of the hospital in agonizing pain, rotated onto gynecology and realized very quickly that the symptoms I had had to be endometriosis.

I had quite a few surgeries to try and sort that out, which ended in a hysterectomy, um, around 13 years ago. And, uh, that was a really successful surgery, but didn't get rid of all of my endometriosis. So, we knew it was going to come back, and about 10 years later, I was, uh, feeling pretty poorly again, having a lot of pain.

Went back to my gynecologist and said, I think it's time for surgery. Um, to do something. Um, they did some scans and exams and things like that. And basically said to me, yeah, we're at the point of having to do some more, but we're pretty sure we're going to have to do some bowel surgery and we think you're going to end up with a stoma.

Then COVID hit and there was a big delay, good couple of years of quite bad pain, waiting, um, and then got the call, went in and met my, finally met my colorectal surgeon because I'd only ever spoken to him on the phone at that point. He sort of said, well, you know, we think we might be able to save your bowel, but we're not a hundred percent sure.

Then, Took me into surgery, woke up, and the first thing I did was ask how long I'd been in surgery and if my husband was okay, and then the second thing I did, because when they said to me I'd been in surgery for, um, nearly 10 hours, I started to get really worried that he would have been really worried.

So that was my first concern. And then my second, second sort of action was to put my hand down to my belly to have a feel and I could feel a bag there. So I knew I had surgery.

Hannah: I know you said you're a junior doctor, did you, so did you finish all your qualifications before all your surgeries, or was that something you had to delay, or?

Gayle: Yeah,

so basically, when I first sort of worked out I had endometriosis, um, as I'd just rotated onto a gynaecology training programme, I sort of, crept up to my consultant and sort of said, you know, can I just have a whisper in your ear and told her about my symptoms? And she was just like, yeah, you definitely got endometriosis.

But I had a bit of a delay getting referred as a lot of people do. And that's even me being at that point, I was a qualified doctor. So I was just on my general practice training rotations. So it wasn't actually until I had qualified, moved out of the area where I was training, which was up in Lancashire, we moved down to Cheshire to be closer to my husband's family, started working as a local GP and went to my GP practice that I also happened to work at and said, I think I need a referral.

And they said, Oh yeah, no, that's fine. And got me off to the hospital quite quickly. At that point, I was working as a, as a GP at that point.

And how have you found it being on the other side of things? Because obviously you went into your doctor's career, you know, to look after people. How did it feel for you, all of a sudden, being on the other side of things?

I bet that felt quite strange, didn't it? Yeah, I mean, it's, uh,

it's a bit of a, a bit of an odd one because, I mean, it massively ramps up your empathy about things. You know, when, when I first started as a medical student, you know, people would talk about period problems and about pain problems, and you, you heard it and you understood it, but now I really empathize with what they're saying.

I get what, you know, I understand the impact of it and the repercussions of it. It is also a little bit weird because there is a certain level of assumption about what you do and don't know. So for example, when they started talking about stomas, um, and they were talking about that line in your bowel where if you're above it, you can have a reversible stoma and if you're below it, it's an irreversible stoma, I understood what they were talking about, I hadn't seen that stoma surgery, so I wasn't completely okay with it, and then I was like, well, I've seen stomas, I've dealt with patients that have stomas, I've even examined stomas, I've done, um, the equivalent of a rectal examination with stomas, but I've never looked after a stoma.

I have no idea. You know, I've seen bags, but I don't know how they work. I don't know how you change them. I don't know what I have to watch out for.

Hannah: The day to day operational factor sort of thing.

Gayle: Exactly. That's exactly it. And I mean, I was really fortunate because my stoma nurse I met her the morning of the surgery, again because of the COVID situation, I hadn't managed to see her before that.

And, uh, she was sort of, you know, Oh, you're a doctor, you know, what do you know about stomas? And I said, look, just treat me like every other patient. Assume I know nothing, because I would rather you told me something I already know, than didn't tell me something I don't know. And she was really good. She apologised a lot.

I said, Oh, I'm sure you know this. And actually, a lot of the time I didn't know what she was saying at all, but she was very good. And she, she took it right back to basics and taught me everything I needed to know to be able to look after it. Um, so I think being medical, I probably had a slightly easier journey than some people because I, I know the ins and outs of the medical side of it, but the practical side of it took quite a bit to get, get the hang of.

Yeah.

Hannah: Yeah. I can imagine. As I say, you're not really having to do, you're only getting involved really with stomas when. There's problems almost, I suppose, when you, as a GP aspect, you're not actually getting involvement when there's the day to day factors of things, only when there's a problem.

Gayle: Absolutely.

And in fact, as a GP, we actually don't have much involvement with stomas. All of the stoma experience I had was from when I was a training doctor. So as a GP, I think really the only thing I've ever got involved in is examining patients for another problem who happen to have a stoma and prescribing the, uh, the equipment that they need.

So, you know, it is, it's, it's not because if a patient says I'm having a problem with my stoma, contact your stoma nurse, because, you know, it's, it's not something we deal with on a day to day basis.

Hannah: Absolutely. And aside from your career side of things, the other thing I find absolutely fascinating, I've got to tell the listener that when I first met Gayle, which was.

You know, a couple of months ago now. I thought, why do I recognise Gayle? And then I realised that I had actually shared a story about Gayle on my social media. Gayle is one of our very sort of active ostomates out there. I won't steal any more of your thunder there, Gayle. Can you still tell the listeners why I would have been sharing you on social media?

And I can guarantee a lot of listeners out there will go, I know .

Gayle: Oh no. Um, yes, I caused sort of a minor international incident back in November. . So , um, I actually, I don't generally in my day-to-day life, introduce myself as a GP or an ostomate or anything like that. I actually introduce myself as a marathon runner, not a very good marathon runner.

I'm incredibly slow, but I do that. That's my thing. That's my hobby. I travel, I go on holidays and I generally go on holidays to do some running and, and take part in marathons. So in November of 2023, I was supposed to run the New York city marathon. I don't want to place in the ballot. Obviously, there are some issues associated with having a stoma and running marathons.

I also do intermittent self catheterization, which is another layer to the complexity. And New York Marathon have some rules about the equipment you're allowed to carry with you on race day. Which was prohibitive for me to taking part. Uh, so I had contacted New York Marathon. We'd been having a lot of negotiations about how I could take part and use the equipment I needed, and most importantly, have enough hydration with me and carry all my stoma and catheter equipment.

It came to a head about, uh, a week before the marathon, uh, we couldn't come to a satisfactory conclusion, and I ended up having to pull outta the New York Marathon and. BBC News Wales got hold of that and sort of made its way around the country. And by, they released the story the night before the marathon and by lunchtime on the day of the marathon, I believe I was the third most read story on the BBC's national website.

Yeah, so that's, that was my 15 minutes of fame.

Hannah: Yeah, so we are, we are in the presence of a celebrity today, as you say. Very minor. Not at all. I mean, I can only imagine mentally what that must have been like at the time. Did you, did you still go out to New York and sort of have a proper holiday or did you change your plans completely? What then happened at that point?

Gayle: So, I mean, at that point, we, we cancelled everything. Um, we've been to New York before. It was a very expensive trip, and we had said all along, I mean, we'd been three or four times, so we'd said all along we would only go back to New York to do the New York Marathon. We had cancellable, um, arrangements. Our hotel was cancellable.

Our flights were, um, cancelled. refundable. Um, so we cancelled everything, um, stayed at home. And in fact, the morning of the, uh, the marathon, we, uh, we did a 20 mile run along the North Wales coast so that we didn't have to watch the TV and watch the coverage or anything.

Hannah: I say I understand and I get that there's rules there, but you've run so many other marathons in so many other places.

It just seems absurd to me that there's still such gray areas where there can be, you know, especially from medical perspective, you're not asking to carry, you know, anything other than what you need medically. And it just shows to me that in a lot of places, I mean, I think in the UK we are quite fortunate, but clearly in America it's still a long way to go regarding potential understanding there.

Gayle: Yeah. I mean, I, I get it. They, you know, I don't know if you know, but the reason the, the rules are in place is because of the Boston Marathon bombing 10 years ago. And I totally get that. But when it comes to accessibility and things, there has to be a way to negotiate this. And I think the most frustrating thing for me at the time was that I couldn't really.

Get an explanation from them of what they believed the security risk to be, especially as I had, you know, I'd offered to let them search my running vest and search all of my equipment. I'd sent them photos in advance. I'd offered to carry an empty water bladder that they then filled when I got through security at the start line.

And I couldn't get them to pin down exactly what. let resulting security issue they felt still existed that meant I couldn't use what I really desperately needed to use. Um, and I couldn't seem to make them understand that with my medical history, I needed to carry my water bladder with a liter and a half of water in it because the water provision on the course just wasn't enough for me.

And I was going to end up dehydrated. And I was going to end up in hospital with pyelonephritis, a kidney infection. And You know, I have to have my medical equipment. If my stoma bag falls off, I can't just carry on running with feces falling out of my belly onto the road around me. Um, you know, I have to stop and I have to change the bag.

So I have to have the equipment with me to do that. If I need to go to the bathroom and pass urine, I have to have my catheters and all the paraphernalia that goes with that to be able to do that in a safe way without causing myself more problems. And I, the communication was just really frustrating.

Hannah: Had you been given a concrete reason, like, this is why, but just to be, no, no, no, no, no. That is, I can imagine that would have been the frustrating point, that you tried to offer compromises, negotiations, and there was no real compromise or negotiation from the other end.

Gayle: No. I mean, they did, they had contacted me and said, oh, we found these transparent rucksacks, and we'll send you one to try out, and you'd be able to put your water bladder in that, and, and carry your equipment.

And they sent it out and it came and I was like, well, this is great. Yeah, I can get my water bladder in there. I then went to pack it to do one of my long runs for the next day as kind of part of the training and realized there wasn't actually enough space to carry my medical equipment. So it was like, I can either carry the medical equipment and not have the hydration.

I or carry the hydration and not have the medical equipment. And all they kept saying to us, well, you can wear a running belt. Now, anybody with a stoma knows you can't wear belts. You know, yeah, we might, you know, for a very brief period, we might try it and then we quickly realize it's incredibly uncomfortable.

It stops the output. Um, You know, running 26. 2 miles with a belt rubbing on my stoma is just outright dangerous, isn't it? So I explained this and explained this and explained this and and I think there was a lack of understanding to be honest with you

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I'm looking on a more positive aspect. I know you said, and I can't believe I'm actually saying, your hobby is going away to run marathons. My hobby when it comes to holidays is going away somewhere to sit on a beach and be a bum for two weeks. But there we go. Now looking completely, so obviously New York was probably your most negative experience when it came to a marathon.

Would you have a marathon or? a running event in particular that stands out as being the most positive, the most accommodating, was the one that stood out in that respect?

Gayle: Do you know what, London Marathon, I did that, um, so I had my stoma surgery in April 2021. I did a couple of half marathons in the autumn of 2021.

and had to defer a place in London because I finally won a ballot place after about 10 years of trying only to then find out I had to go and have surgery. So I deferred my London Marathon place, um, and went and ran that in October 22. And that was the best ever. race I have ever done. And they were fantastic about everything.

Um, I contacted them and I explained about my stoma and my catheters and sort of said, you know, I just want to make sure that this isn't gonna be a problem. No, it's absolutely fine. You know, they don't have any restrictions about sort of using running vests and using water bladders and things. In fact, they're very pro that because of the environmental impact of that.

A lot of races are aware. that the environmental impact of handing out paper, plastic cups and plastic bottles of water isn't ideal. So, and they reach out to me, you know, is there anything that we we can do to help you? Is there any support you need to be able to run the race? Um, it was fabulous and it was just a fabulous day and there were, you know, regular bathroom breaks and regular water stops.

So I could top up because the one and a half liters of water I carry is not enough in the race. I think in London I drank about four liters, By the time I got to the finish line, but you know, it was every time I stopped. Can I have two bottles of water? Yes, of course you can. It was a fabulous, fabulous experience.

I loved every second of that race.

Hannah: And I suppose that, are you, well, next question, are you running the marathon next month?

Gayle: Uh, I'm not. I didn't get a place this year. I still apply every year. Um, my husband is still desperately applying because he's never run it. Um, but, uh, no, I don't have a place this year, unfortunately.

But fingers crossed for

next year.

Hannah: Yeah, well, you'll have to let us know if you get it again. We can watch out for your little bobbing head on TV. We can watch out for the, I don't know why I do it every when I know somebody who's running it, I still look out for them. And the chance of you actually spotting the person you want to see a slim to none.

Gayle: Yeah. Yeah. My parents do the same with the Great North Round. We've run that every year for about seven years. And every year when we text them to say we finished it. Well, we didn't see you on the telly. You didn't you didn't find us amongst the 60, 000 runners.

Hannah: Why ever not? But it's so good to hear. I mean, I know obviously you, like I said, you had the negative experience in New York, but so wonderful to hear, I suppose, from a homegrown aspect that London has been the, the best one for accommodation and things like that.

And that to me shows that as a country, we are becoming more accepting of medical conditions. And I've noticed stoma 12 years ago, there's so much more in the media and not just you, Gayle, not just your media story. There's so much more in general in the media, social media, in general, about stomas and bowel care in general.

I mean, intimate health care in general. I know you talked about self catheterization. Again, that was something that people didn't really talk about, you know, 10, 12 years ago when, you know, I have my stoma, but now people like yourselves are willing to come out and speak about things more. And it's clearly filtering down into places because I very much thought something like London Marathon would have been so accommodating 10 years ago.

Gayle: Yeah, I mean, it's really interesting as well because obviously when the news story broke, it's, I mean, it's, I've had messages from people around the world contacting me, both runners saying, well, we don't really understand what the problem was, and, um, ostomates and catheter users sort of saying, you know, It's just great to see this stuff in the news and people bringing it up.

And I even, I was contacted by one lady who said, I've never seen anybody mention intermittent self catheterization, um, in the news, on the telly, anything. So this was a real comfort to me to see that I'm not the only person that does it. Um, and I think, I just think, you know, that's such a positive thing that came out of the situation was just the awareness it spread and the fact that people are taking notice and understanding that there are challenges.

Hannah: Absolutely, absolutely. It's making that invisible visible. That's what I always say, it's making that invisible visible and you've, you obviously empowered so many people along the way there, which is fantastic.

Gayle: Yeah, no, I'm, I'm so pleased with the, the response. Um, and you know, just everything was very positive.

I didn't have really any negative feedback about it at all. Just lots and lots of shock and surprise and real support about the fact that, you know, I'm out doing my everyday life, even with, you know, a lot of people say, well, we can't believe you're running a marathon with a stoma. And actually my response to that is, well, actually I can't believe I'm running a marathon.

The stoma is just an added challenge. Running a marathon is hard enough. And I mean, it's, it's fair to say having a stoma and running a marathon, that is a, that is a whole extra level of challenge. You know, when I think back to when I did that very first half marathon after my surgery. Um, I'd obviously done some training runs, um, and a half marathon's about 13 miles, and I'd got up to about 11 miles.

So, I hadn't quite done the full distance. Get to the finish line of the Great North Run. And, and of course it's windy, you know, you're elated, you get your medal. We walked over to get our bags, and we stopped to kind of get out of our wet clothes and get some dry clothes on, and I thought, you know. I can smell something.

I think something's wrong here. And then realized that my bag wasn't actually adhered to my belly anymore. It had, the sweat had completely dissolved the glue. And fortunately, my support wear and my tight sort of running clothing were holding the bag in place, but that was literally all that was holding it in place.

Providing more like a scaffolding service at that point. It was kind of a, uh, you know, let's hope it catches the storms rather than it was doing anything sort of that it was intended to. So, and it's, I mean, it's just things like that. You know, I reflect back on sort of the running experience that I've had with the stoma and just learning the practicalities of how do you get to the end of a marathon?

them with a bag still in place that hasn't leaked, that hasn't pancaked, uh, that you're still hydrated enough that it, you're actually, you know, not developing an obstruction, things like that. Huge, massive, steep learning curve, but so worth it. When you get to the finish line and you get that medal. Um, if I, when I finished London, I texted my husband cause he was with, in London with my parents kind of running around, meeting me at different points to cheer me on.

And I texted him, ugliest crying photo that you've ever seen because I couldn't believe I'd run a marathon and done it with my stoma.

Hannah: Oh, you know, think about your husband going around that. It's almost like the alternative marathon isn't it? Um, I went to watch a friend run the marathon on you and the only way I can describe that is like the alternative London marathon trying to get around on public transport.

And I was literally five minutes behind them at each point, wherever I went to try and find them, I was five minutes behind them. It was like some sort of weird game of chase around London town for the day. So as much as I am impressed by you girl, I'm also impressed by your husband and your parents chasing you around London town for the day.

Gayle: Yeah, it was a, it was a busy day for them. But I mean, you know, at least they got to go and have a sit down, have a coffee and things while I carried on running. So I still think they had the better end of the deal.

Hannah: So what's the next event on the calendar then Gayle? What's your next one in?

Gayle: So

I've got a few exciting things coming up this year, actually.

Um, so in August, I have been so fortunate. I can't believe I've managed it. The, uh, the Paris Olympics in August, I'm not running the Olympics. Let me just stress that immediately. I am not an Olympian. But the Paris Olympics for the first time in Olympic history, as far as I can tell, um, they are running a public marathon alongside the Olympic marathons.

So, yeah. So on the Saturday morning, the men will run their Olympic race. On the Sunday morning, the women will run theirs and overnight in between, they're having this public marathon. Um, there's only 20, 000 places and we, you had to enter competitions to try and win a bib and somehow I got a bib.

So that's my first race. Um, and I've already checked with them. Um, I'm so excited. I've checked with them. They are allowing race vests and water bladders. So I have no issues. The big, the big challenge with that one is that it starts at half past nine at night. Um, And marathons don't run overnight. So this is a whole new level of trying to work out how my stomach is going to fit in with that.

What food I'm going to eat. When, how I'm going to get hydrated enough during the day, but also get enough rest. That's going to be a huge, huge thing, but absolutely. You know, I'm, I'm. And that's an opportunity that cannot be missed. Um, so that's in August and then in September, it's the Great North Run again.

I love that event. And then in October, we're going over to Chicago to run their marathon. I want to place in there. Yeah, um, and interestingly, they also have the rule that you can't use race vessels, um, race bladders and things, but I contacted them, and I've been given exemption to be able to do that because of my medical condition.

Hannah: Interesting. I say, so it's not a hard and fast no, really, then, is it? So, hmm.

Gayle: So, uh, so yes, I'm

really excited about that. I've never been to Chicago, so I'm so excited about that one too.

Hannah: I feel so unfit listening to you right now, Gayle. My idea of running is running up the stairs and then having to run back down again because I've forgotten what I went upstairs for.

That's about as far as my running goes these days. Thank you so much for joining me, Gayle. It's been absolutely brilliant to talk to you. It really, really has. Such a different sort of story. I mean, The endometriosis being, you know, we don't speak to many people, with endometriosis being the reason for the stoma, the fact that you're a GP, you're running, I think you're so fascinating, all the different aspects and facets to what you bring is absolutely brilliant and I really am so happy you joined me.

And you have to make the other deal that you'll join me again though now, that's the only problem.

Gayle: Yeah, of course I will, Hannah, it's been an absolute pleasure. I've enjoyed our little chat, so of course I'll come back and do it again.

Hannah: Thank you so much, and to everybody listening, we'll see you next time.

Thank you for listening. To see more of the wide variety of education we offer, please visit coloplastprofessional. co. uk. See you next time.

Narrator: Stoma and Continence Conversations is a Vibrant Sound Media production for Coloplast Professional.