Narrator: This podcast is intended to support UK health

care 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

health care providers, including nurses, for any medical questions or concerns.

Hannah: Welcome to stoma and continence conversations from Coloplast Professional,

where healthcare 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.

This time we are meeting expert by experience, Jacq.

Jacq: If you say catheter, people think it's an indwelling and it all looks a bit

yucky and it's probably in the care home.

They wouldn't associate it with people who are younger, who are walking around

and perhaps there's an alternative.

It's about having that support.

It's about having a phone number to ring but a phone number

you know will be answered.

You're not broken, you're enabled by self categorisation.

Hannah: Hello and welcome to the podcast.

As I said, I'm very lucky to be joined by our expert by experience, Jacq.

Hi Jacq, how are you?

Jacq: I'm fine, thank you very much.

On a nice sunny day.

Hannah: Isn't it lovely getting a bit of, maybe a hint of

spring on the way, hopefully.

Oh, please.

Oh, it'd be nice, wouldn't it?

Thank you so much for joining me today, Jacq.

This is the first time we've met you on a podcast, isn't it?

It is.

It is.

It's so exciting.

Thank you very much for inviting me.

No, I said, thank you so much for attending.

Now, I'll go say you are an ISC user for the benefit of the listeners out there.

Uh, so how long have you been using ISC for?

Jacq: Well, after an accident to my ureter in 2009 and countless operations.

I think I started ISC in 2015.

So basically 10 years.

Hannah: Wow.

Now 10 years, it's a long time to sort of then adapt to new

routine and things like that.

How have you found, you said that you had an accident.

Was there any sort of pre the accident?

Was there any inklings of any urinary issues at that point?

Or was that?

Something, a very sudden issue.

Jacq: I had absolutely no issues whatsoever.

What happened was I had a hysterectomy and unfortunately there was a slip of the

scalpel and my ureter got damaged cut.

And so in order to try and make that good, they cut the top of my

bladder to join up to my kidney.

But that didn't work.

So they did it again.

They cut my bladder again and joined it up to my kidney, but that didn't work.

And so then , I gave my kidney.

to a recipient in London, who's done really well.

Actually, I think he's fitter than me.

He's making better use of your kidney.

He's doing really well, and we correspond, and he's Absolutely lovely.

So then, I kept saying, Look, I really don't think my bladder is emptying.

I'm not so much in retention, I just don't think my bladder's emptying.

And of course, they put you through this horrible test called urodynamics.

And at the end of that, they said, Oh, your bladder's not emptying.

I said, Oh no, it's not!

I told you that!

And then, had a nice five minute instruction in how to use a

catheter lying down with a mirror.

Who the hell pees lying down with a mirror?

I've never met anyone that does that.

No.

No.

I'm trying to think.

No.

I went home and shut the bathroom door and just, just cried and cried.

And I thought, I can't do this.

I cannot do this.

And in the first catheter I was given, and of course I didn't even know

there was anything else, you kind of squeeze the kind of metal kind

of bag thing and all this lubricant squishes out and then you open it

and then it all pours out everywhere.

And then I was thinking, oh am I meant to lie down in my bathroom?

My bathroom isn't really big enough for me to lie down.

Hannah: Where am I going to fit?

Jacq: I kind of got the hang of it after, after a bit and it was actually quite a

long time before I saw a women's health physio who seemed to have a much better

idea of how to deal with catheters and she said you know there are other catheters

and I said this is a light bulb moment.

Oh I didn't know that and she said well we'll get you some samples and we'll

try them and so that's what happened.

Um, and then I, I started using, um, in those days it was, I can't

remember what it was called actually.

And then I, I started using Eve and, um, ah, all of a sudden,

life wasn't quite so miserable.

Hannah: And this is a, I think, it was something we've spoken about again on a

recent podcast, that importance of a good routine to help you to to live your life.

And if you're experiencing discomfort, things like that,

you can't go about a normal life.

Jacq: I think the, the mess, the discomfort, where to, where to put

the catheter after you've used it.

And I'm, I'm a teacher.

So, um, school toilets are never the best toilets.

And you're always in a rush.

There's never enough time.

There's nowhere to dispose of anything.

And, oh, it was just And school were great, actually.

They said, look, if you want to go home, I said, look, I don't want

to go home just to have a pee.

This is ridiculous.

Um, and embarrassing as well.

And so, you know, I just coped the best I could.

But I know what I was doing.

I wasn't really doing it properly.

So I was just rushing.

And it

was horrible.

Hannah: It's like you said, when school toilets are not

the most spacious of places.

Places.

And also you can't lie down in them.

No, you can't lie down in a toilet, the school toilet.

I mean, come on, that's really inconvenient.

And then those time restraints, it's a bit like, and this was something Dani spoke on

about a previous podcast, how when she was first doing it, she worked for the NHS.

Yeah.

When you're a teacher, you often haven't got time to go to loo.

NHS workers and teachers have, I think, have.

Generally, some of the strongest bladders out there because you're

never given any time to go for a wee.

Jacq: For a normal pee, there is no time and you're just rushing

from one thing to another.

And they're not the most, uh, what do you call it, clean, uh,

sanitary, antibacterialized.

No.

Hannah: Yeah, all of the above.

Now, I'm going to go back to something you said quite early on.

You said that, so you'd had this obviously horrific experience with the

surgery where they tried to do these repairs and you became aware that

you, I say you weren't in retention, but you weren't fully voiding.

Yeah.

What made you realize that?

What, what was the sort of the, the triggers that made you think,

actually, I don't, I think there's something a little bit amiss here.

Jacq: Well, I've always been really, like, good anyway of drinking lots

of water, and in a school situation we're always encouraging the, the

students to, so we do as well.

And, and I just thought, you know what, I, hardly anything comes out.

I go for a pee and just a bit comes out, but I know I've drunk loads.

And also that sort of, it's not really bloating, but like I basically

have no sensation in my bladder, so I haven't got any of those triggers

anymore, all the nerve damage.

So it was more a sense of, I must be able to pee more than that.

Hannah: There should be more in there.

Jacq: And the slight sort of thing, oh, maybe the other kidney's not working, and

I'm on one kidney, and how does that work?

And, and, you know, the bit of you thinking, oh, you know,

there's a blockage up there now.

So yeah, I just knew that I just wasn't voiding as much as I was in

taking if that's the right word.

Hannah: Yeah, and it was good that really at that point that you

had that self awareness I think.

Because a lot of people especially youngsters maybe that are experiencing

trauma with Barza they may not have that same self awareness out there.

And I think from a personal aspect that And I know we talk about poo taboo and

I think there's the loo taboo as well, but actually what, what is normal?

What, what should you expect from your toilet habits?

And if something isn't quite right, you need to address it.

We always talk about if there's blood present, go and get that seen to, but

actually for you, it was something as, yes, I'm going, but I'm not.

Jacq: Yeah, and that's quite simple, isn't it?

You don't have to, you don't have to measure it with a jug, but you

know you've had, I don't know, a couple of glasses of water or all

of us now have our water bottles.

Everybody has a water bottle now.

So you know that that's about a litre.

And so you know that actually if you've got a litre in,

you should be having a litre.

out.

Yeah, that's, that's really simple.

You don't need to be measuring it all.

There were all these bladder diaries.

They're so boring.

I'm sorry.

I know I'm sure clinically it's terribly sensible, but you do know,

you know, if you've drunk a lot.

You've got to pee a lot.

That's easy.

Hannah: Absolutely.

And I think this is something that should be spoken about more.

Almost part of education within schools, teaching children how we talk about the

reproductive cycle and things like that.

So why not talk about almost effectively the body's natural reproductive cycle?

You know, what, how you go like.

When you go, if your bowels open, when you go to have a we and

everybody's got to is not exactly.

Exactly.

It's not just a few people.

This is everybody.

Well, every living creature has to void its body waste at some point.

Absolutely.

It's one of those basic things.

You know, everything, everybody eats them or takes on nutrition of some

way and everyone gets rid of the waste product in some way, shape, or form.

Exactly.

So why not?

Why.

And I think this is a frustration for me, almost, that why is it not more well known

what's, what's normal and what's not?

Jacq: Why are we so embarrassed as well?

Um, my, I'm, I'm secondary, uh, teacher and kids at school are brilliant.

They, they do know, and I'm doing less and less teaching now, but

they're well aware of the fact that it's my bladder that's an issue.

And I've even shown them the catheters.

I mean, nobody knows what a catheter even looks like.

If you don't say catheter, people think.

It's an indwelling.

They think it's

Hannah: Hang it off the side of the bed and yeah.

Jacq: And it all looks a bit yucky and it's probably in a care home.

They wouldn't associate it with people who are younger, who are walking around

and perhaps there's an alternative.

Hannah: Yeah, absolutely.

And it's, it's getting that knowledge out there and I think it's great.

And I always say to all the ambassadors, you guys are like rock stars to me.

The awareness you create is phenomenal because It's getting,

and it is, it's improving, it is improving, these taboos are improving.

I mean, it'll be 12 years this year, my stoma got reversed.

And the knowledge and awareness regarding stomas that's out in the world now

compared to 12 years ago is improving.

Jacq: Oh, it's wonderful.

Hannah: You've probably seen the same with ISC, it is, but I think ISC is still

slightly behind, it's getting there.

Jacq: It is behind, but even Lego has done a stoma Lego figure.

Yeah.

So what we want Lego to do is, is a catheter figure.

I suppose we can't actually do a photo of us.

See, like, the photos of stone, people with stoners have been fantastic.

Um, in bikinis, in their, in their budgie smugglers.

But it, it is a little bit more difficult with IOC.

I think there's a way.

I mean, we don't need to do anything horrendous.

Hannah: I think it's as simple as you're living your lives.

I say you're out doing your teaching.

Dani, who we spoke to a few weeks ago, she's at uni, you know, doing so, so well.

Jacq: She's doing her degree, yeah.

Hannah: Actually, I think that's just as empowering.

I say with the stoma, there is a physical aspect that you can look at.

Here's my stoma.

But actually, I think with IC, half the empowerment is showing that

Look, actually, just look at me.

You wouldn't know anything.

Jacq: You wouldn't know.

You wouldn't know.

Hannah: Stand me here in underwear.

There's literally no difference between me and anyone else.

And I think that's actually half the empowering thing about ISC,

that you can actually say, well, look, you wouldn't know, would you?

Jacq: Exactly.

And I think there Certainly, well, probably about five or six years ago,

there was certainly a feeling within, in Bedfordshire that our people who

catheterize, and again, I think they're thinking indwelling, but the report

that I read said most of these people spent 60 percent of their time at home.

Well, that's simply not the case.

They spent 60 percent of their day.

away from home and are going to work, boosting the economy, if you like, but

socializing, going to theater, train, oh, trains and planes, it's a nightmare.

Um, it's really bad.

Hannah: I'm just thinking of a plane.

Jacq: We are trying.

But we are.

Going through airport security is, is, is an interesting experience

because of course the fluid, the lubricant in the catheter.

Oh, it flies up.

And generally I've got through, but I have had script searches which is,

I just think it's really hilarious.

I just start laughing.

He said, yeah, sure, I'll take you off to a little private room.

And, uh, you have to drop your trousers.

And I said, oh.

And I said, look, you know, here's the lesson that I've just shown.

Security.

And, uh, here's my catheter.

Oh.

Oh, that's all right then.

Okay.

Hannah: On your way.

Jacq: And I said, oh, yeah.

I just said, look, just tell your colleagues that there are quite

a few people who have these.

Like, oh, yeah, yeah.

Okay.

Bye.

Buh bye.

I don't, you've got to laugh, you just leave it to time, you

can't get upset about it, they don't know, why would they know?

Hannah: And I think that's the thing, it is that old adage of,

if you don't know, you don't know, but actually then, is there more

of a place for better education?

I know, okay, some airports have had education on dealing with people with

stomas, That to me says there needs to be more done with catheters there,

especially say, and even hands up here, I didn't even think of that of the fluids

within the lubricant within the catheters, because yes, we have fluids with some

care, but they're all in containers.

They're all in little separate containers.

So you can separate those.

Jacq: Yeah.

Hannah: And yeah, hands up.

I didn't even think of that with the lubrication that's

already within the catheter.

You can't fit.

You have a two week holiday worth of catheters in your 500ml bag, can't you?

Jacq: And they get so stoppy if you try.

Hannah: You will fit them all in, will I?

Coloplast Professional offers a lot of educational material for specialists,

nurses and healthcare professionals.

Visit coloplastprofessional.co.Uk to find out more.

So now, I know you touched on it briefly earlier as well, Jacq, that

you change products quite frequently.

Early days, really.

Have you changed again since then?

Do you change using products depending on what you're doing or anything like that?

Jacq: That's a brilliant question.

Um, I have changed products.

Every so often I've tried a different sample or I've been sent them or even

in those urology magazines the doctors get free ones, and they quite often just

pass them on, and I have tried them.

I've also been to this amazing NHS supply chain, I think it's called

Warehouse, where we were reviewing, I think they're about 20, 25.

different catheters in the room and there was myself as the patient and

there were community nurses there and hospital nurses and we were reviewing

them and it was so illuminating.

I had absolutely no idea there were so many different sort of ways of

lubricant, um, lignocaine that makes your hand freeze and it was really amazing.

So that also gave me a chance to Oh, maybe I should try.

And then there was one with a bag that I tried and that was quite good when I

was, I was having spinal surgery because the sepsis had affected my back so badly.

Um, so I had to have spinal surgery.

So lying down and catheterizing.

and using a bag was fantastic.

It meant that I didn't have to have an indwelling.

And the hospital were, again, the spinal unit didn't know these things

existed, but it was great because then they were very willing to help.

And that made a massive difference to me.

It gave me a degree of independence.

So I really was lying down.

Yeah.

But, but it had a bag, so I wasn't panicking that I was going to be

Hannah: getting things everywhere and things like that.

Jacq: Getting stuff everywhere.

So, so that was really good.

And then another catheter I've used is a much longer male one,

um, because I've been on a couple of protocols where I instill my

own gentamicin into the bladder.

I say my own, I mean, I do it myself at home, but the smaller female catheters,

you just can't get the syringe in to do the instill, and then you've got to

flush as well, so a much longer, more flexible catheter means that I've got

the dexterity to put the syringe on the end, push the gent through, and then

with one hand hold that and then get the Posi Flush to, Posi Flush is just the,

for people listening, is just another syringe of saline to push it through

to make sure you're not wasting it.

So that's quite a lot of kit, um, but it means I'm not in hospital,

it means I'm not using it.

NHS time and I'm not doing the protocol anymore, but I am just doing that if

I feel like I'm getting an infection, I will send a culture off, but I can

do my gentemising while I'm waiting.

Hannah: You can almost go in proactive at that point now.

Jacq: Yeah.

So I need a few different sorts of catheters for different circumstances.

If I suppose, if I never went out, if I stayed at home all the time,

I would only need one, but I'm not, I'm out and about, I'm never at home.

Hannah: But that's great that, and we talk a lot within StomaCare about choice and

patient empowerment, but actually for you, even just having that choice of catheters

has been able to empower you and allow you to, you know, things like you say, with

the prophylactic gene to icing, you've been able to take that on board and do

it yourself to help with your own plan.

When you've had issues where you've not been so mobile,

you've been able to do this.

So, You've still, even in situations that aren't maybe ideal, you've

still been able to maintain that independence level by having those

different options available to you.

Jacq: Yeah, it's made a big difference and, and keeps me out of hospital,

which I know hospitals are lovely and good and brilliant, but I don't really

want to be in there all that much.

Hannah: No, I think when you've spent, uh, greater portions of your time in there,

you're not really keen to spend too much more time in there after, unnecessarily.

Jacq: If it's avoidable, yeah.

avoidable hospital.

Hannah: So you've got your little rotation.

So what's your current, I suppose, plan?

What's your current regime?

How's your regime sitting at the moment?

Jacq: So at the moment, I'm fairly well controlled on the infection side.

I've got backup oral antibiotics if needed.

I use I see probably, it works out at kind of four hourly.

I do have a reminder on my watch, just to make sure that I do.

I do sort of mentally think about what fluids I've actually input,

but I don't do lots of measuring.

If I get symptomatic, I would start with a different catheter to put some

gentamicin in, and try and keep that in overnight for as long as possible.

So, I kind of teffle.

situation.

If I'm out or when I'm out, it's about being much more organized.

I've just always having that bag.

I always have, I'm looking at it now, actually have a bag.

I just have all my kit in and whatever I'm doing, that bag comes with me.

Um, and there'll be an enormous panic if somehow I hadn't.

done that.

The reordering is so easy with Charter.

I don't have, in the early days, I was always in a panic

that I was going to run out.

Um, you're getting down to the last two, you think, oh gosh, I'm not

quite sure when the next delivery is coming, but I just haven't had that.

Now I'm, I'm with all of you, and also it's just a phone call away if, if

something's gone a bit wrong and the delivery hasn't come or I'm not in the,

there was once I was at my son's wedding in Scotland, and I can't remember which

way around it was but there was something I needed, and who came to my rescue?

All of you.

It was just, It's just extraordinary.

So things like that, it's about having that support, it's about having a phone

number to ring, but a phone number you know will be answered, the portal is,

is very good, but to actually speak to a human who knows what they're

doing and doesn't panic and doesn't tell you off when you say, actually,

by yesterday, I need another pack.

It's absolutely amazing.

Hannah: Oh, fantastic.

And it's so good to hear that you, you are in such a good place at the moment

with everything that you've been through and you're now doing so, so well.

So I'm going to finish off.

I'm going to put you on the spot a bit here.

I want you to give a top tip for a person.

That might be fairly new to using ISC or who's maybe struggling with ISC, give them

a top tip and also a top tip for nurses as well dealing with patients with ISC.

Told you, put you on the spot here.

We love a top tip within Coloplast you see.

Jacq: Top tip for the patient.

You're not broken.

You're enabled by self catheterization.

It will get better.

Try the shower.

Shower's brilliant.

Much better place to try, and you're not going to be

worried about mess or anything.

Nice hot shower, self catheterized.

If you get really good, you can do your teeth and catheterize at the

same time, it's, it's really amazing.

Hannah: It can really multitask.

Jacq: But keep going, just, it makes such a difference to, to

everything, to your whole life.

And for the, for the clinicians, please, please, choice.

One size doesn't fit all.

We're all different, we've all got our little quirks.

And what we think is best for one person, what I think is best, isn't necessarily,

I've got a, a friend in Bedford, and I said, oh, you've got to use these ones,

and, and she did try, she's like, these are awful, but I love them, so, so, so,

oh, oh, that's, I thought, I thought, so yeah, you know, just our preconceptions.

Just, just, just let people try and different people have different dexterity.

We've got different pain thresholds as well.

It should be comfortable, but sometimes there will be sort of

little irritations and things.

And also if you've got an infection, it is more difficult, um, just because of the

spasms and the whole general unwellness.

So please clinicians give us some choices and awareness of, of

what other options are out there.

And also, thank you clinicians.

You're amazing.

Thank you.

Hannah: Oh, thank you so much.

And great point there.

And we always say specialist nurses, they are fantastic at what they do.

Absolutely brilliant.

I know I wouldn't be here without specialist nurses.

Yeah.

And I know from what I'm speaking to yourself and other ambassadors, there's

a lot of us that wouldn't be where we are now without specialist nurses.

So lovely what you said there.

And thank you so much for joining me.

I've absolutely loved our first podcast together and I'm hoping

it won't be our last one and that you'll come and join me again.

Jacq: I'm so grateful just to be able to talk about it, but also to say

thank you for letting us have a voice.

I know I can speak for all of us.

We don't want pity points.

We don't want, we just want to get on and just be normal, but people

perhaps can know what is going on.

Hannah: Yeah, and I always will advocate for all of you guys and I

love what you do and I can't wait to have you back with me, Jacq.

Thank you so much.

Jacq: My absolute pleasure.

Thank you.

Hannah: And thank you to everyone listening and we'll see you next time.

Goodbye.

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.