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

healthcare 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 discussing routine adherence and compliance with ISC.

Dani: We forget that going to the toilet It's an everyday part of life.

It is an essential part of life.

When you can't do it, it is so painful and so uncomfortable.

I wasn't talked through why I needed to do it, the anatomy of how to do it.

I wasn't shown the product.

I had awful reactions when trying it because we now know

that I'm allergic to latex.

I couldn't understand why I was struggling so much with it.

Something that they kept telling me was something very simple.

Just meeting that one amazing nurse.

Changed everything in my life.

Hannah: Hello and welcome to the podcast.

As I said, today we are talking about routine adherence and compliance with ISC.

I'm really lucky to be joined by one of our wonderful experts by experience, Dani.

Hi Dani.

Hi Hannah.

How are you?

Dani: I'm very good, thank you.

How are you?

Hannah: I'm good, thank you.

Now, Dani, I know we recorded a podcast with you, oh gosh, it's probably coming

up to two years ago now, isn't it?

That we recorded a podcast with you about Urology Awareness Month, wasn't it?

Dani: Yeah, it was such a lovely experience, but about two

years ago now, I think, yeah.

Hannah: If you could just give us all a little brief reminder about yourself

and so as to why you're here, really.

Dani: Lovely, so I'm Dani and I'm 41 and I live in Winchester

in Hampshire with my husband.

I was previously, in a previous life, an anaesthetic practitioner and

worked in anaesthetics and surgery for, in the NHS for 20 odd years.

Unfortunately, I had to be medically retired due to my health.

I'm now at university having done a BA in medieval history and I'm just

finishing my dissertation for my master's in history and hoping to graduate

as a historian in October, finally.

I have been an ISC user on and off since I was 14 years old and that's

primarily in the first instance down to, um, I had major bowel surgery, had

a large bowel tumour perforate my bowel.

And after the surgery, I went into spontaneous, um, urinary retention.

And so I had to do it for about a year as a teenager.

And then through the rest of my sort of twenties and thirties,

severe endometriosis has affected my bladder and bowel.

And a lot of the adhesions from surgery all combined together with the fact that I

have, unfortunately, an immune deficiency.

That means I get regular.

Um, and severe UTIs and pyelonephritis.

And unfortunately, all of that leads to urinary retention

and interstitial cystitis.

And so I've been catheterizing full time now for about five years.

So that's my ISE journey.

Hannah: Wow, what a journey.

And I said from the age of 14, I mean that, that's so young to have

to take something like that on board.

So I'm gonna, I'm gonna ask you to kind of rewind back in time, back to 14.

I think we'd all love to go back to being that age again.

Wouldn't definitely being nice and young again.

When you were taught, first taught ISC, obviously age of 14, so

much else going on in your mind, in your life, at the age of 14.

Was it challenging?

I'm thinking school, friends, challenging to fit that in with

your daily routine, your daily life.

Dani: It was a real challenge.

I mean, firstly, the operation was a real emergency, so we'd had no

indication that this would happen.

So therefore, there was no preparation.

After the surgery, I had about six weeks of an indwelling catheter.

And I think Where things went wrong was that I wasn't taught to ISC.

I had the indwelling taken out, and then I was discharged, and a nurse sat on the end

of my bed and said, so the big catheter's come out, you're still not able to go to

the toilet normally, so that may come back in a week, it may come back in six months.

So until then, you're going to need to catheterize at home.

fell apart then because it felt like such a medical thing.

But nurses do the catheters.

This is a big, in my head I was thinking something similar to the

indwelling catheter that I was going to have to do myself at home.

And the trouble is nobody explained it.

So I was just handed a bag Of the product and that was it and sent on my

way off to get, you know, told to get on with it really and I was mortified.

I thought I was the only 14 year old that this has ever happened to and instantly I

started to think I can't tell my friends.

I can't go back to school.

I won't be able to go to my clubs.

I can't possibly do this.

And I, I think I developed.

Really bad anxiety in, in that moment surrounding it, there was just no support

and I wasn't talked through why I needed to do it, the anatomy of how to do it.

I wasn't shown the product.

I had awful reactions when trying it because we now know that I'm

allergic to latex and at the time the catheters were latex.

And.

I couldn't for the life of me, even with the help of my mum who was a

nurse, I couldn't understand why I was struggling so much with it.

Something that they kept telling me was something very simple.

I established no routine whatsoever, and I just kept trying very hard,

probably causing trauma, definitely running the risk of UTIs, which

became a very severe thing.

And Every single day was a battle and ended in tears most of the time because

it was painful, it was sore, bladder spasms, and ultimately what I was

supposed to be achieving didn't happen.

I wasn't able to void, I wasn't able to pass urine, I wasn't

catheterizing, and there was no routine, and there was no support.

Luckily, it only lasted for a year that time, but It did have a huge impact

because I stopped going to school.

I was confident that if I couldn't do it at home I wouldn't be able to do it in

a small tiny cubicle bathroom at school.

I was petrified of my friends seeing me as different and as somebody who had

multiple chronic illnesses as a child I was already different enough and I

didn't want to become more visible.

And so I stopped going to school and essentially at that point,

by not having an ISC routine, my whole life routine fell apart.

You basically almost like semi withdrew from society at that point.

I did.

Did I Completely with age at the age of 14, which is, it's shocking really.

That, and I, I, I still can't get, I mean, you can tell I'm not often left

speechless, Danny, and you've left me speech with it, the fact that you

were just almost given a bag of gone.

I think, I

think the problem was that the nurse herself probably was as confused as I was.

She certainly didn't seem to have any knowledge on the product.

And I've come across that a few times in my professional career, but also many

times as, as a patient, they do seem to understand indwelling catheters, but

she definitely had no knowledge of ISC.

Um, and I think that's a big thing in the wider community, but it was, I think.

shocking at that age to be told that I had to do something so intimate and so often.

Medical, like you said.

Exactly.

And I was imagining having to use medical, you know, put on medical

gloves and because the fear of it looking and feeling like an indwelling

catheter, this big tube, and actually they weren't as small as they are

now, the, the, the IC catheters.

And again, they were latex, which was always probably part of the problem.

Why I couldn't do it.

It just created.

This circle of fear and anxiety that, that led to me to be not able to do it.

And, but mostly just because I was never comfortable, I was never supported in it.

And thankfully it only lasted a year that time.

And my experience as an adult has been so much better, but if I had

been supported and given the right product information and trained to ISC,

I do think that it would have been.

So much more different experience and probably a positive one at the time

Hannah: and probably so much easier to get into that routine as well I'm guessing

so much easier to have a routine and Almost like comply sounds wrong, but it

is that compliance with a routine is it's like most Medication things like that.

It's important that routine and that compliance of that because that's when

it's at its most effective But you were in that fear cycle and circle As a 14, you

were never going to get into that routine.

So it was never going to be a compliant moment for you.

But you've put it so right there that actually having a really positive early

experience and getting things right helps get that routine, that adherence,

that compliance in there that would really have helped you at that age.

Dani: I think people don't, you know, I was very used to taking

medications and every day and being very routine with them.

So I don't think it would have taken too much if I'd had

support and training to ISC.

I don't think it would have taken very much for me or anybody to have

found their routine quite quickly and become comfortable with it.

So all it takes is that support and that training to do something.

And I don't think people realize how quickly Life can fall apart if

something as crucial and as vital.

We forget that going to the toilet is an everyday part of life.

It is an essential part of life.

And when you can't do it, it is so painful and so uncomfortable.

It affects every single aspect of your day.

You can't concentrate on schoolwork.

You're in pain.

So it affects your mood.

You withdraw from life.

You don't want to see friends.

But also the It was very much, and still is today, a lot of

the time, a taboo subject.

I couldn't talk to her about it with my peers.

I couldn't talk to anybody other than my mum.

And even the medical professionals that I did come into contact to, they

didn't know how to talk to me about it.

And it was very matter of fact.

You need to do this.

Here you go.

And you know, when you can't do something as basic as that, it's amazing how

quickly your everyday routine that had been your life before falls apart.

And essentially, by not being able to pee, my whole routine fell apart.

Hannah: Collar Plus Professional offers a lot of educational

material for specialists, nurses and healthcare professionals.

Visit collarplusprofessional.

co.

uk to find out more.

That age between 14 and 15 just sounds

I mean, I know you, you kind of said that, Oh, fortunately it was only a year, a

year at the age of 14 is a massive thing.

I mean, I know as we all get older, we say time goes quicker, but at the

age of 14, a year is a long time.

A year is a massively long time.

And then I know you touched on the fact that as you've gone into adulthood,

fortunately things have improved.

And I know you said.

At the very start that you're in a really positive place now, so I'm looking at

that stage sort of between 15 and going into adulthood now, so we've had that

horrific, we're going to forget about that because that's awful, that's horrific.

We're going from 15 now into early adulthood.

Where was your journey at that point?

Dani: It wasn't a pleasant journey and I probably should have Come back to

ISC a lot sooner than I did and again because of that negative experience

that definitely delayed me Accepting the inevitable and that's a shame really

because I could have had comfort a lot a lot sooner But essentially through my

20s because of the immune deficiency, I continued to get these very bad UTIs and

pyelonephritis, so kidney infections, and had many, many admissions leading

IV antibiotics, and essentially, you know, this all leads to scarring of the

bladder and then very bad endometriosis.

And so I was literally ping ponging between admissions throughout my 20s

and early 30s where indwellings would be placed, um, which is obviously very

uncomfortable and Runs a huge risk, especially for somebody like me of a

more intense infection So not ideal at all and it took me meeting a lovely

urologist Finally who knew you know, I think people approached me with caution

because I'm quite complex medically Maybe they didn't really know what to do with

me So nobody kind of wanted to take me on board But I met a lovely urologist

and then his bladder nurse team when I was 29 and he said Why aren't you ise?

And I was just like, um, uh, no, no, no, no.

Thanks.

I, I've done that.

It did not go well.

Hannah: Was that something that had been brought up with you in between

times, so from tho throughout those years of constant UTIs infection, had

IISE been broached you again within that time, but you'd just gone like, no, no.

'cause of your previous experiences.

Dani: I think it was brought up with various different doctors at

different points, but again, with so many specialists involved with

me, immunology felt that they did not want me to catheterize because

of the risk daily of infections.

They felt ISE would be a and not great path, whereas urology were very for

it every time I did come into contact with them because they felt coming into

hospital for intense urinary retention that was very, very bad, was more damaging

to my health and needing an indwelling.

So it was brought up and I think I was very against it in the beginning

because of the negative experience.

But as my 20s wore on, having to have admissions for severe urinary retention,

which is an awful experience for anybody ending up in A& E like that, or with

an infection, I couldn't do it anymore.

And I just had to beg this consultant and say, please, somebody help me.

I need relief.

I can't pee.

And it was affecting every corner of my life.

And he said, there's a very simple solution.

And you know what?

I'm going to get you to speak to the bladder nurse.

She's lovely.

I know you've had a bad experience, but we're going to get you through this.

And it just opened so many doors for me and just meeting that one amazing

nurse changed everything in my life.

And it was.

chalk and cheese the experience.

It was fantastic.

Hannah: And this is something we so often hear talking to you guys, you

experts by experience, specialist nurses always realize what an impact

they can have on patients, on users, that they can make all that difference.

And I, I will always advocate for specialist nurses and say

what they do is just incredible.

And you said your life basically got, you had 15 years.

Of all full experiences and then finally at the age of 29, it was

almost like a light bulb moment that you got that, you know, that

wonderful connection with a nurse.

You finally felt like you were getting on a correct path somewhere.

So now I'm going to go, we're going to 29 now.

We're hitting adult.

Well, we've hit adulthood.

We've steamrolled it into adulthood.

You then went back into ISC.

Then was it a more, it's got to have been a more pleasant

experience than it was at 14.

How did you then adapt to start to create a routine at that point?

Dani: Um, in some ways it was easier and some ways it was, it had more challenges.

So, as you said, I was an adult, I was busy working full long day shifts

in the NHS, scrubbed at the operating table or in the anaesthetic room.

So, as everyone who's worked in the NHS will know, there is not a lot of

opportunities to go to the toilet.

So, it did definitely pose challenges.

But I think my life Because of my job had already developed quite a nice routine.

Um, I was married and, you know, we had a lovely little life and I was able to

have these set times throughout the day, whether it be breaks and things like that.

So I started off seeing ISC and trying to connect it to.

rest points in my day.

So usually when I got up, um, a tea break at work, lunchtime at work,

getting home from work and then bedtime and having key points throughout the

day for me to aim for so that I didn't forget definitely helped me to establish.

A routine rather than for me, I don't tend to feel sensation when I need to go,

which means I can very easily get to a point where I have a liter in my bladder

and then I'm in a lot of pain and I very much need to go, but can't go so it can

become an emergency sort of situation.

So I realized that I don't get that same sensation that tells

normal people when they need to go.

So.

I, I realized that I was going to have to take charge of this and make regular

space in my day to avoid my bladder.

But also to give myself enough time to not rush, otherwise it wasn't going to work.

And I think a lot of my previous problems have been that I was rushing

to try and pee like everybody else does.

Nip in, nip out.

Doesn't always work like that with ISC.

So I had to Allow myself the ability to say, you're going to need a little

bit more time here and to start being open and honest with people, which

was very hard in the beginning, but to be able to say to people at work,

especially as it is seen as a taboo subject, even in a medical environment,

I am going to need my break today.

Is that okay?

Because I catheterized, so I need to go.

And actually, people were far more understanding than

I'd given them credit for.

And that really helped me feel a lot better about saying, I need to

take breaks and I need this routine.

In the beginning, I set alarms.

on my watch and my phone to make sure that I didn't forget.

And slowly but surely as the years progressed, it actually

just became part of my normal day.

I don't use the alarms anymore.

I just know what time it is and that I need to go, but it definitely

helped in the beginning to find a really quite strict routine to, to

make sure that it all came together.

Hannah: Yeah.

So it's that blend of the right product with the right

routine and you get into that.

Almost like a lovely little cycle there and it's, uh, uh, but by having

the wrong part, especially with the latex issue and the, uh, the lack

of understanding, lack of teaching.

That didn't allow it.

It's such a knock on effect.

It's like that, you know, the, the old line of dominoes, you knock that

first one down, the rest of them all go flying over before you know it.

Whereas if you keep them all standing, it could keep it all going.

Has there been anything sort of in between 29 and now that's I know you

mentioned that initially it was tricky with work, especially with working

within the hospital, like you say, breaks aren't always that easy to take.

Has there been anything else that's made you struggle to keep in a routine?

Dani: Yeah, again, normal life has to be fairly flexible, and that can

be very difficult, especially when you're new to the ISC journey, because

I was quite concerned about Where I would be able to find a space to go.

Public toilets aren't always accessible, especially back then.

Things are a lot better now, but back then I had to kind of plan ahead my day.

The hospital was better, but out and about shopping, um, supermarkets

definitely didn't feel able to have spontaneous trips anymore.

Was very concerned about holidays and.

The cleanliness level of toilet.

So I would very much have to plan my day.

So I felt like I'd lost a little bit of.

Spontaneity and freedom a little bit for the sake of routine.

But I do think that I needed that to, to start to feel comfortable

with IIC at the beginning.

So what I did was I, I did plan my days as much as I could.

Had to factor in things like the holiday season and being far more

busy than normal and making sure that I was able to order my supplies

ahead of time and I had enough to get

and just being able to.

Factor in the what if scenarios.

What if we stay the night over at my husband's mum and dad's spontaneously?

I need to make sure that there's some catheter products at their house.

Every single bag was then filled with, with products just in case.

So I became sort of over prepared probably.

But I just factored in for every situation and every scenario so that

I wouldn't be caught short and Felt comfortable to still able to, to go out

and do things with friends and family.

So, so yeah, and definitely finding the right product definitely helped with that.

And a range of products, you know, I definitely am very much an advocate

for, you know, you may need more than one because every day is

different and you're doing different activities and things like that.

So that made life easier having a range of products to be able

to go to, but also somebody.

Very importantly, somebody to go to that I could ask advice for.

Look, my life's changed in this direction.

What do you suggest now?

I'm struggling with this now.

Do you have any advice?

And that was so crucial to being able to feel comfortable as life

changed and transitioned, that my catheter products and my routine

could change with that and transition.

So moving into my thirties, having that flexibility and

that support in the background.

was crucial to being able to continue life comfortably, really.

Hannah: Yeah, it was almost having that confidence in what was going on

behind the because you almost felt as a youngster there was nowhere to turn,

nobody to talk to, you didn't know, so It's that old, if you don't know

something, you don't know, but knowing now that there is somebody you can

always go to, it is a massively important thing, and the way that you've been able

to now adapt and create that routine.

And I'm touching on something here because I know the answer

and it's really exciting.

Uh, you mentioned about travel.

A little birdie told me that you may have had your first big

travel experience last year.

Do I need to shoot the birdie or is the birdie right?

Dani: The birdie is right.

No, I had put off going on holiday for 10 years.

Now, some of that is down to the fact that I've been very, very poorly and in and out

of hospital, but I think a lot more of it was down to ISC routine and not feeling

completely confident that the facilities would be right for me or, and I just

worried that that would spoil the holiday or that I ran the risk of an infection.

So for years, I kept putting it off and thinking I'm fine with being in the UK.

Last year I decided, Nope, I've had enough.

We're going on holiday.

And we took the plunge.

We looked around for what was available and accessible for disabled travelers.

Uh, but also that I could feel confident with my ISE routine and we chose a cruise.

And it was the best experience ever.

And it was only a short one, but it opened so many doors.

I felt so relaxed and so relieved to be experiencing a holiday for

the first time in all of that time, and all of my fears were unfounded.

What was right to do was preparation and planning, and there was more sources out

there than I Was aware of, and it was so lovely to find them, um, especially

on the, the ColourPlus website and being able to talk to other ISC users

about their holiday experiences, but so by planning and making sure I had, um,

enough supplies and my travel certificate, radar key, my access card, everything

that I could do to prepare made me feel so much better about going, but

the whole experience was so wonderful.

And it's given me confidence in other areas of my life.

I now.

ISC at university very easily during the day.

And I find myself saying yes to a lot more opportunities because it's not

a fear now in the back of my head, it's not holding me back anymore.

And I think that has, it's such a nice place to get to saying that I'm

confident at ISC now at 41, nearly 42.

So I've done it.

I've cracked it.

Hannah: And what an absolutely.

Beautiful note to finish on that is absolutely love that.

I am confident I'm happy.

I've been on a cruise.

Thank you so, so much, Danny.

I think what you've shown says the power of those early experiences can really.

Be impactful and actually then the ability of having that positivity there to get

into that routine, the rest kind of then follows on getting that confidence,

the rest carries on and I think that's something that we all need to think about

really, it's, it's getting it right, getting it, the people's confidence,

nobody wants to not be compliant, nobody wants to not do as they're told almost,

you know, by nature we, we, we do, you.

Most people are people pleasers, so you don't, it's not like you're doing it to

be awkward, but actually just getting it right, getting it right for you.

I loved what you said as well about different products, things like that.

It's not a one size fits all.

What's great for somebody else might not be great for somebody else.

And actually having that ability to.

to change to suit your lifestyle to keeping that the most important

thing is the routine there for you.

So thank you so much.

And I really hope that you will join me again at some point this year,

and I will hopefully hear more about

Dani: travels.

Absolutely.

I'd love to.

And I just, you know, I think That's the key message.

It is difficult at first, but with patience and time and perseverance,

support is so key, finding the right products that work for you, which

may be different to other people, but finding that product that works for

you and getting a core routine and having that support throughout and

continuing is so important, but just remember, ISC community out there.

It's so supportive and you are not alone.

I know it feels like that at the beginning, but not alone.

Hannah: You are, as I always say to our three ambassadors, you

guys are rock stars in my mind.

You are absolute rock stars, all of you.

What you guys do and the awareness you guys create is amazing.

So thank you once again, Dani, and I look forward to speaking to you again soon.

And to everybody listening, thank you.

And we'll see you next time.

Thank you for listening.

To see more of the wide variety of education we offer, Please

visit colourplusprofessional.

co.

uk.

See you next time.

Narrator: Stoma and Consonants Conversations is a Vibrant Sound Media

production for ColourPlus Professional.