Narrator 0:00
The information provided in this podcast is not a substitute for professional medical advice or treatment. If you’re concerned about your health in any way, we encourage you to consult your GP.

Hannah Paterson 0:12
People don't like talking about it, but incontinence can affect anyone. You may have a friend or relative who lives with it every day, or maybe you're worried about your own incontinence. Incontinence Talks is here to make us all feel more confident about continence, hosted by former Olympian Rower and Coloplast Ambassador Pete Reed. In this episode, Pete is talking to Jacq and Hannah Gagen from Coloplast about their own experience with incontinence and the importance of finding the right continence care products.

Pete Reed 0:42
Hello everyone and welcome to Incontinence Talks I’m Pete Peed and today I'm joined by Jacq Emkes and Hannah Gagan. Jacq is a fellow Coloplast ambassador, Hannah is the head of government affairs and patient advocacy for Coloplast. Welcome both of you. Thank you so much for coming. Can I start with you, Jacq. I love your dynamism and your passion and your experience. Would you mind starting off with just telling us all a little bit about your ISC journey?

Jacq Emkes 1:09
I sort of see my life as sort of AC/BC. BC was before catheter's. I thought catheter's were sort of like hose pipes that old ladies put inside them when then and that was normal. I was a teacher. I've got four children and before that was an accountant which is all a bit weird. So my career came to a juddering halt after a very routine hysterectomy. I was teaching maths to grumpy secondary school teenagers and every so often my whole body would just devolve itself or devolve itself of blood because of massive fibroids and I tried all sorts of medication and ended up with elective surgery.

Pete Reed 1:55
How did that present? I'm sorry to interrupt you.

Jacq Emkes 1:57
Normal bleeding for a woman is obviously as we all know periods which can be heavier or less but when it's fibroids you could just empty blood everywhere at a moment's notice. You can actually feel it but by then it's too late. So you always wear black trousers which is significant because I still wear black trousers but not for the blood, for the urine. So it is incredibly difficult to manage. Doctors will give you all sorts of medication and there's something called a marina coil which also is. I think it's a hormone replacement which is supposed to help but it doesn't. That's why I made the decision to go for elective surgery.

Pete Reed 2:42
What year is this?

Jacq Emkes 2:43
That was 2009. So I was in my 40s. I went to see my head teacher and he said, "oh Jacq, hysterectomy. That is quick worrying. You'll come back even more energetic that you are already. Six weeks recover. It's always six weeks, six weeks recovery. It's marvellous." So that's what I went for. I thought, "Great. That's not a problem." I had my six weeks off and really it was feeling pretty rough but went back to school. Saw a physio and she said, "You know, you're not normal.” I know that. She said “no you're really not normal." So cutting an incredibly long story short. What had happened during the history with me was that my right ureter had been cut and so to fix that the local surgeon cut the top of my bladder. I made it into a tube. Very clever to join it up with what remained of my ureter to join to my kidney.

Pete Reed 3:39
I’m just going to remind us. So the ureter is the pipe from the kidney to the bladder and we've got two kidneys. One left and one right. So you're right side of the kidney.

Jacq Emkes 3:48
Absolutely right. As opposed to what's similar, of course, as you urethra, which will get all the bladder out of your, I mean all the bladder, all the urine out of your bladder. So then, that didn't work out. I had lots of indwelling catheters. I had a super pubic catheter. I was then sent to London, and the operation was repeated. That went wrong. So I had a bag or my left leg for my left kidney and I had a bag or my right leg for my right kidney, which is coming out of my back. That's quite hardt to work when you're doing that. But anyway, it's quite easy to empty your bags, especially if you're sitting at a barbecue and there's an empty wine bottle, you just sort of empty the bags. It's very easy and I just hope no-one drinks it. I'm not actually joking either.

Hannah Gagen 4:38
I mean, Jacq's I've emptied my stoma bag and I've been on Hackney Road getting off a bus.

Jacq Emkes 4:42
Anyway, I've done it in theatre as well. I bought a very expensive bottle of water at the bar because the loo queue was so long. So I went and got a bottle of water, a great expense. I went back and sat in my seat in darkness and emptied my catheter bag that way.

Pete Reed 5:03
I haven't had a bag to empty since I've been in hospital, but I have catheterised on a plane under a blanket into a bag there.

Jacq Emkes 5:12
There's no room in there in the plane toilet.

Pete Reed 5:14
I can't get there even if I wanted to. Oh of course you can fit in. The way so the things you do, these little top tips, little tricks to navigate your normal processes in society. I want to go back just quickly to the physio who noticed something wasn't quite right. Presumably you didn't know that the ureter on the right side had been cut. So what's happening in your body at that point? There's waste product just coming down into your body and you must have, I guess, look pale.

Jacq Emkes 5:46
So a lot of pain, infection. I just kept taking my antibiotics dutifully and trying to teach. And I remember going for a scan when one of my colleagues covered my very naughty class for me and after the scan they said “you really need to wait and see the consultant because you actually need to be in hospital.” I said “I'm so sorry, I got to go. I was basically deemed detention. I can't possibly. Can't possibly stay.” So I did it, I didn't, I went back to school because that's what you want to do. You want to just be normal and block it out.

Pete Reed 6:25
And you're people always think operations are going to be absolutely fine, you're going to be fine.

Jacq Emkes 6:32
You go to hospital, you get better. So the next thing that happened was that they decided that really this was not going to work. So I gave my right kidney to a recipient in North London. And he and I correspond and he, I think, is a lot fitter than me. So my right kidney did did something good and that's a real positive. After that, I stopped using indwelling catheters. I was really not feeling on top form. School were fantastic. I had a very reduced timetable. I kind of did what I could. In the end, I went for urodynamics, which is a completely ridiculous test. But it proves what your patient is saying the patient says, I can't empty my bladder. And the doctor does this enormous aerodynamic test, that tests that I call 50 shades of gray. You sort of strapped on. You got nothing on you. All the male doctors watching you. They stuff a catheter up your bum. They stuff like a catheter into your bladder. And then they say, cough and you say, well, I am coughing, can you feel your bladder? No. I told you I can't feel my bladder. Okay, we'll just fill it up, get to a liter. Can you feel it? No. Can you cough? Yeah. That's okay. And then they. They fill it up to a litre?. They raise the X-ray bed and you're strapped on.

Pete Reed 7:58
So I know about video urodynamics . I've done it and I know what I can relate to the 50 shades of gray, but you've probably ladies watching. Well, I do.

Jacq Emkes 8:06
Yeah, I have men.

Pete Reed 8:08
Okay, funny old thing.

Jacq Emkes 8:09
Yes, it’s weird.

Pete Reed 8:10
But they put a catheter in up your pee hole. Up your urethra. And fill you up. One in the bum. That's a pressure sensor, isn't it? Yeah. They can they get a digital read out of what's going on.

Jacq Emkes 8:21
And they find that you can't pee.

Pete Reed 8:23
Yeah. And they find that you were telling the truth.

Jacq Emkes 8:26
Yeah, It's like a lie detector test actually.

Pete Reed 8:29
It's quite fun. From that point when they know you're turning the truth. I think we're just about to go from indwelling catheter to self-catheterisation.

Jacq Emkes 8:38
It wasat that that very point the consultant said, well, you're going to have just have to self-catheterise. I had no idea, even with with the experience I'd have really had that even these gadgets existed. I lost it into seeing this. I lay down on a bed. I was given a mirror and told to how to self-catheterise as in poke it into your urethra lying down with the mirror. Well, I was a bit cross-eyed and I just couldn't see it. I couldn't quite get it. And so she'd all you'd be fine and gave me a packet of catheters to take home. And on the train to be perfect on this, it was one I don't often cry that I cried all the way home on the train. I'm just, I'm not going to be able to do this. I can't do it. I got home, shut myself in the bathroom. And I lay down on the bathroom floor because I thought that's what you did. You are lying down to gas up. How can you lie down? My bathroom is not big enough for me to lie down.

Pete Reed 9:39
Jacq, it breaks my heart to hear that you were breaking down on the way home. And I just wonder, what difference would it have made you if you had known about ISC before that moment in your life, like pivotal time?

Jacq Emkes 9:52
That's such a question. I would have perhaps had a little bit of more confidence that this was something that was going to work. My embarrassment, I suppose, at not being able to actually get that catheter with the mirror lying down on a trolley was because I thought I'd never ever be able to do this. If I'd had some prior information, if I've been able to talk to another patient, if I'd been able to talk to you. You maybe would have said to me, you got to give it a go. You got to try it. If it doesn't work, lying down, which it doesn't, then how about standing, standing in the shower, how about sitting on the toilet and just really, it's not rocket science, is it? But just that complete, complete ignorance on my part. I'd never heard of it, didn't know anything about it. And there I was trying to jab this catheter into my fanny, whats-it, it was horrendous, horrendous. Anyway, long story short, I kind of got the hang of it. And the first catheters I had, you sort of squeezed the bag, lubrication came squirting out, you opened the top of it and that pours all over your clothes in your hands and what have you. Um, and then you insert it empty your bladder bit, then you put that back in the wet, soggy, horrible bag. And generally at home, that's OK, but when you're traveling, when you're on a train, et cetera, that is horrendous. I then why is that? Is that is it a reuse catheter?

Pete Reed 11:32
why is that? Is that is it a reuse catheter?

Jacq Emkes
No, it just makes such a mess.

Pete Reed
And that matters right? Oh, what you get on your clothes and so a dignity thing

Jacq Emkes 11:43
Dignity, your hands, etc. I then actually had to go for spinal surgery, because of all the infections that had happened with the right kidney that had really destroyed the disc in the lower part of my back. So I had a cage and screws and a fusion effectively of the lower part of my back. And that was actually quite illuminating because then I could. I refused to have an indwelling catheter so I had a disposable catheter but it had a bag on the end of it. So actually lying down because you can't move after spinal surgery, as I'm sure you know, I could actually self-catheterise because it just went into the bag and that suddenly I felt quite confident that actually whatever was wrong with my back, which at that time I wasn't sure. I was going to cope with this. I could still get the pee out and not have an indwelling. So from that day on I started self-catheterising, recovered eventually from spinal surgery, carried on teaching as best I could. And then along came the most amazing woman's health physio. He said, you know what? There are other sorts of catheters and to my embarrassment I said, I had no idea. And she actually began to work for Coloplast after that, but she got loads of samples for me to try, different sizes, different lubricants. One's have anaesthetic on, one's have lots of solution, one's some you add the solution to and so that's why I ended up with what was then called Eve. And that was the beginning of a much better CSIC life. I've gobbled on, but that is the story.

Pete Reed 13:43
So I haven't stopped you because it's been fascinating. Some things I can really relate to as well, especially not knowing that other products are available. Some parts where you were talking about getting your independence back, I think, with a normal process of peeing. I think after you had your spinal surgery finding joy in the independence of going again, Okay, this time to a bag, but it was a product that allowed you to get your independence back. So for me, that was reclaiming my identity and those precious moments. And that's important.

Jacq Emkes 14:15
And if you're confident, you can do anything. When you begin to doubt your ability to cope, you can't do anything.

Pete Reed 14:26
Yeah, so despair and despondency sets in. And I wouldn't blame anybody for feeling that way, if they've had a bad run, some bad luck, a bad product, some maybe some bad advice. It's easy to be despondent, especially when you're dignity stripped a little bit. And there's a lack of understanding. And I think that's why we're here discussing these things where we've talked at length through the series about all of these issues, these loo taboos that cropped up. And I'm really excited to finish this series with an episode about the importance of innovation. So where catheter products have come from, where stoma products have come from, where irrigation products have come from. Because people have been suffering with incontinence throughout the dawn of time. And in the last 100 years, we've been able to do something about it. In the last 10 years, it's been a lot better. And in the last few months, it's been incredible. And I'm excited because the future is really bright. We're talking about this stuff openly. It's very hard to find anything online or in the public eye about incontinence.

Jacq Emkes 15:37
I think that's something that I feel very strongly about, that I don't know where people can go for a trusted source of information. There's some excellent charities, but they're not sign-posted out of the NHS sites. In fact, the NHS site doesn't really say very much.

Pete Reed 15:54
Well, I know you're hugely experienced here. You're a patient advocate as well. Hannah, you've been quiet, because I think we've both been listening to Jacq just sort of grateful that someone's saying what we've been wanting to hear for so long. But what are your experiences of incontinence and products that are being used and then we'll go from there to innovations?

Hannah Gagen 16:16
Well, it feels like it's going to be a bit of a competition between Jacq and I about how many surgeries we've had. But I think we've got enough of those pink forms that you signed to probably decorate quite a large hall of some variety. I suppose this one is an interesting one for me because I yes, I work at Coloplast, but it's not really a secret to anybody that I have a stoma. I've advocated on behalf of people who have stomas for, I think ever since I got mine, I even remember in the hospitall Bed, because I was at the Royal London at the time, before it was the nice Royal London. So it was like Elizabethan, and it was like super, it was very very dark, very dark time, very dark place. So my first, I've got it tattooed, my first surgery was the 17th of the 1st 08, and my final surgery came out a year later on the 29th of the 1st 09. So I lived in hospital for a year, majority of that in isolation. So that's not easy time. It was horrific, it was like doing a sentence or something, I'm sure. I don't know what that's like, but it was bad for me, but I think it was probably even worse for my parents and my friends, because they don't have any control. And actually I do think one of the saddest things I saw was people coming in and out of the hospital, people dying, and they had no one. And I think that when we talk about patient advocacy and we talk about why these things matter, having somebody in your corner to fight, is one of the biggest strengths you can have. And if you don't have family or friends to do that, then the charities are incredibly important. There are resources we can happily like signpost to those, but I mean that fight kind of came in me. I remember when they were bringing like the food trolley round, and you know, like the food was like, it was terrible. And I was like, how are you expecting people to be able to recover when the food is terrible? So like day 15 or something post surgery, I was already lobbying in hospital. I got the food manager down. We got the whole, we got it all sorted out. And I knew then that there was something in me. So when I had my first dome of surgery, I came to it through ulcerative colitis. So like Crohn's disease, so IBD, as we call it, bowel disease. I was at university, I just saw blood in my, in my poo, basically. And I really struggled to get through my final years at university so much so they said you're just going to have to stop. But then I was like, I'm not going to, so I took a placement working for a lobbying firm in London. And I did that. And that was like a Mill Bank tower in the old days. So it was like proper old school lobbying. It was fascinating. And then I went to work for a non-departmental public body. And then actually I went to work for Marie Curie Cancer Care, because they were fighting for the right to die at home. And for me, because I'd had palliative care and almost died about six times, it felt deeply important that now I was still around and had a voice that I should try and lend that to others. And then I moved into pharmaceuticals and I've done other things. And then I got a Coloplast, which is this perfect combination of having a condition and having a stoma, but also having the professional experience to try and again, give a bit more of a voice to people in the corridors of power.

Pete Reed 19:30
Yeah, so an extraordinarily hard chapter of your life, but you're using it ever since then. I mean, we're talking 15 years now. Yeah, yeah, yeah. Of that journey of giving back, it's wrong of me to dive into your personal medical records, but it's not wrong of me to talk about incontinence on an incontinence podcast. Absolutely not. Can you talk us through to the end of your period of time in hospital? You've got a stoma bag?

Hannah Gagen 19:58
Yes.

Pete Reed 19:58
Talk us through that.

Hannah Gagen 19:59
Yeah. So, well, first of all, I would say to people when you're going into having a stoma, like some people come to it by, you know, trauma, right? They don't have a conversation before having it, they may be in an accident or something, but for people like me who come through an IBD background, you should absolutely make sure you're having conversations before the surgery. And I think that's so much better now than when I had mine. And I should say like I did have my surgery like 16 years ago and so much in terms of innovation has changed, but not just in products and stuff, but the services and the thought process is about the attitude to how it's having a stoma like back then, I knew no one. Like we didn't even have the internet to search stuff. Like it sounds really old, like I make myself a really old, but that was just the case. So your stoma nurse was your everything and they are, they are your everythings, like my stoma nurses have been the best people I have known. Because the surgeons are incredible, but the stoma nurses will talk to you about sex, about what to wear, about all the things that nobody else wants or has the time to answer. So, having good stoma care provision is incredibly important in terms of nurses. But I remember that moment when I woke up and it's like it was a very long surgery, so I went in originally to have a J-pouch. So, I didn't go in to have a permanent stoma. I went in to have a J-pouch. So, essentially that what that is is where they bring, my mind was a small intestine. So, I have an ileostomy. For people don't know, there's three kinds of stomas in terms of the abdomen. There's an ileostomy, which is also the ilium, a colostomy of the colon, and there's urostomy, which is to do with the wee bits, right? So, I had an ileostomy because that's where the disease was in my large bowel. So, they took all of that out, and they, well, they left what's called the anal stump, which is the name of my future band, if I ever had one. Because, it's pretty rock and roll, isn't it? So, they left in the anal stump, and then...

Pete Reed 21:51
And it's quite high up in the digestive process.

Hannah Gagen 21:52
So, the anal stump is, so, where my mine was, my whole bowel was completely done for with ulcerative colitis. It started off at 50 cm, and then it just spread rapidly, like, wildfire, really. And they took, literally, I remember at uni, unfortunately I couldn't get an appointment, and we scraped together a bit of money to go privately. And went to this hospital, and they shoved a bit up my bum, it was a flexi-sigmoidoscopy kind of thing. And they were like, "Oh yeah, you're like riddled." Thanks so much. So, they took me straight into the hospital. And then I went on enough treatment for years, I was on lots of steroids, so I got what's called cushing's disease, so I put on a lot of weight. I didn't look like myself. Like, my body image was all-time low. I mean, I wasn't like an Olympian like you, but I was pretty fit, right? Yeah. So, that idea of body image of having looked like one thing, and then looking like another, whilst also battling the indignity of what it felt like, of just, like, pooing yourself constantly. I mean, I was at uni, going to the toilet in plastic bags, because I couldn't get to the toilet in time in a shared household. That was the reality of it. So, when I woke up with that stoma bag, you wake up with a clear one, and it's filled with, like, it looks like it's bright green and stuff, because you've got, like, fluids and antibiotics and other stuff. And then after that, that's the one thing, and then you wake up, and you think, "Oh, my god, is this me forever?" And you never, I don't think you ever get over that trauma of your body looking like that. And you're, as you've got, I had a huge laparotomy. I've still got, I've got beautiful scars, a little, like, the engine. Laparotomy is where they open up, the liver your tummy. So to access it, so a lot of people will now all have their stomas done. So, just through a few little holes, but mine back then was the whole thing, so they opened me all up. And like I say, so I went in for the J-pouch, but unfortunately I had huge complications. And about a week later, I was leaking feces into my abdomen and my laparotomy opened, and then we began journey with MRSA and c. difficile and infection and 9-stone weight loss, where I came out eventually, with a, I moved, I had another stoma bag, and then I came out, actually in a wheelchair, and because I'd lost so much weight and muscle, and then eventually went through lots of physio rehab with people, sort of four times my age, just to be able to tap my toe to the left or to the right. But to tell you what, considering all that, that's my story. Things have changed a lot. In terms of innovation, I wouldn't change it for the world. I love my stoma. It's the best thing that ever happened to me. I love it.

Pete Reed 24:31
I'm desperate to talk about this. You've both given me and us some really amazing insights into how that journey started for you. For both of you, this is for the last 15 years also, it brings up to 2025. What have you learnt from the last 15 years, and what are you excited about for the next five years, and beyond? So, I think Jacq, that's a little bit of ISC life.

Jacq Emkes 24:56
Now it just seems normal. It, I would say, is enabling. I don't feel that I can not do anything. Actually, one thing I can't do very well is swimming in an indoor pool, especially if I've got a little bit of an infection coming, because that makes my bladder go into spasm, where as normally, I can't really feel my bladder. So, what I found is going swimming, especially with the wetsuit on, is actually quite invigorating and warming, because the urine just fills up your wetsuit, and you can swim quite a long way that way, I find. So, that has been enabling. In all seriousness, having found out about the little catheters that you can throw away, I just think a lot of people should know about little catheters that you can just throw away. I just think loads of people should know about it. And people don’t. Even now, my friends say, well, how do you get that in? I'm not actually going to show them, but it is amazing, the lack of awareness whereas for me, it's just not a problem. It's wonderful. It's life-enhancing.

Hannah Gagen 26:00
On our next episode, Pete, Jacq, and Hannah talk about innovation in Continence Healthcare. There are lots of amazing charities that can provide focus support depending on your particular need, as well as lots of information at coloplast.co.uk. Thank you for listening to Incontinence Talks. And remember to consult your GP if you have any worries about your own continence.