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 or concerns.

Hannah: Welcome to Stoma Incontinence, 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 am Hannah Patterson.

I've worked in specialist care and I'm currently the Ostomy Care Associate

Education Manager at Coloplast.

This time we are breaking the poo taboo as part of IBD Awareness Day.

Jess: No one talked about Crohn's.

It was something when I was diagnosed, I had no idea what the condition was.

Beth: The dreaded thought of like having to.

Have a poo at school, how would you do that?

How would you manage that?

What would people think of you?

Even like going to appointments.

I remember feeling really embarrassed when they'd ask me questions.

I still didn't feel I could talk to the actual health professionals

that worked in that field.

Jess: I think we still have a long way to go.

I don't think we're we're there yet, but it's really, really changed

from sort of in my lifetime and my diagnosis time of uh, actually

being able to talk about it a.

Hannah: Hello and welcome to the podcast, the first episode of the latest series.

I can't believe we're now on series 12.

I dunno where the time has gone.

This home.

As I said in the introduction, it's coming up to IBD Awareness

Day and for a lot of os.

Quite an impactful day.

A lot of Ostomates have their stomas due to IBD, and I'm very lucky to be

joined by two very special guests, both of whom have IBD, but interesting,

both of whom have or do work within IBD as well, which just shows that.

Actually IBD is something that becomes quite embedded.

I mean, I know myself, I worked as a stoma HCA for a long time, and obviously

I've got IBD myself, and it just really, it really interests me how many people

go down that route following diagnosis.

So I'm gonna bring in Beth first.

Now Beth is a familiar voice that you might recognize.

Hi Beth.

Hi, Hannah.

Give the listeners a little reminder of why we might know you from

Beth: before.

I, uh, have done some previous podcasts.

In one of the well earlier series, I did Pregnancy with a Stoma, and then

I also did a second part to that.

Once I'd had my baby all about.

Having a baby and, and labor and the time sort of straight after having,

having a baby with a Stoma and how that was, 'cause that was new to me.

I do have two children, but that was the first time I'd

actually had a baby with a Stoma.

Hannah: And how old is Baby now?

Not so much a baby now.

Is he Robin?

No more of a toddler.

Beth: Um, he.

Was one in January, so yeah, he's 15, 16 months, something like that.

I think I've lost count.

Um, but yeah, it's, it's just flown by.

Flown by.

He is, yeah, definitely in a wild toddler stage.

Hannah: And remind us, what's your IBD diagnose?

I know yours is a little on the complex side, isn't it?

Beth: It.

It switches about quite a bit, so it was, I got diagnosed, I was 13, I'm now 35.

It was ulcerative colitis initially, then to Crohn's, but then recently

since I had mast stoma, it's kind of back to the colitis diagnosis.

We think I'm waiting for some more like investigations and tests

and things, but they think that it's more colitis than Crohn's.

Hannah: So you are doing like the opposite hokey cokey to me.

I've gone from, well, I've got no, I've gone from uc to Crohn's,

so maybe I'll go back again.

It might be a like a little bit of a, yeah, a shuffle back.

We never know exactly.

But thank you so much for joining me again, Beth.

It's real pleasure to have you back.

Well, thank you.

And then we've got, I'm gonna call her a newbie to the podcast.

We've got Jess joining us as well.

Hi Jess.

Jess: Hi Hannah.

It's lovely to be here.

I'm really looking forward to this one as my, my first podcast.

Hannah: I'm so excited to have you.

Now, obviously we've not, well, I've met you before, but the

listeners haven't met you before.

So would you like to give us a little bit of an introduction to yourself?

Yeah, absolutely.

So,

Jess: um, I'm Jess and this is my first podcast, as I say.

So I'm really looking forward to be involved in this.

I sort of come with a background of, uh, having had IBD for many years.

So I was diagnosed in 1998 when I was just 11 years old.

Uh, and at the time I was told it was colitis.

Um, I actually had a temporary st.

I.

2021, uh, 2020 21.

I was diagnosed with rectal cancer and I was then told I

needed to have a permanent stoma.

Um, and at time also found out that actually I didn't have thought for 24

years I had Crohn's when they found quite a bit of inflammation in my small bowel.

So.

Similar to both of you.

It's sort of that diagnosis has changed all of a sudden having had

years of what I thought was ulcer colitis to, to turn into Crohn's.

Um, so, so yes, now I have the, the kind of permanent stoma and also kind

of on the back of my own diagnosis, I've then gone into work with IBD.

Um, so I've been a dietician for the last.

Um, um, 16 years and, um, now sort of doing some private work in, in

ibd and particularly interested in, in sort of stoma nutrition as well.

So it's sort of come on the back of my own, own lived experiences.

Hannah: Fantastic.

And I know that Beth, when we've spoke before you, I know you've recently

changed career, but previous you were an IBD nurse as well, weren't you?

I was,

Beth: yeah.

Yeah.

So I, I actually, um, well, my working life, I started out as

a hairdresser, but um, and I did that for eight years randomly.

I'm always having a change and then I, through all my hospital

stays and stuff and watching the nurses and things, I thought, no, I

really, this is what I want to do.

I really want to be an IBD nurse.

So I went into nursing.

With the view to, to trying to be an IBD nurse.

I ended up working in intensive care when I was newly qualified

for a bit, but then finally a post did come up in the IBD team.

So I did do that for, for quite a while and absolutely loved it.

I mean, it was great from, um, a personal point of view to see things

from the other side for my own, kind of my own sort of benefit really, in a

way, but also to help people because.

I know what it's like when, you know you're trying to explain things to

people and symptoms and for someone to get it, it's, it's so helpful.

Hannah: Absolutely.

And I can feel that this is where we are all very, very similar.

The three of us, I think all three of us had been, I. Inspired by people we were

looked after by, and this is something we talk about a lot, it's the power

of specialist nurses, specialist care.

And I don't think a lot of the time they realize the impact that

they have on people long term as well in a, a career changer.

You saying, Beth, you were a hairdresser.

I was a horse riding instructor.

Yet we you don't get.

Two more.

Quite different careers than horse riding instructor and

hairdressing before nursing.

It's strange how we've all been inspired.

What was your career path prior to all of that?

Jess?

Jess: Um, I sort of went in with a sports background, so I

thought I wanted to do physio.

I was very interested in sports, but also in health.

And then I think when I had my first surgery, I just finished a kind of sports

science degree and I was in hospital and I was actually on TPN because I, um, I

had a, a paralytic Alia, so I couldn't eat anything after my, my first st.

Sort of with me that, particularly what Beth said about how you

just sort of get it, don't you?

Yeah.

And that's what you then hear from patients is them say, oh,

thank you for looking after me.

It's nice to have somebody who actually just gets it, who actually understands

it, doesn't just have an understanding of a condition, but also has the

empathy, uh, having lived with it.

So I think it's, it's nice to be able to give that back to patients as well.

Hannah: I love what you said there, Jess.

It is.

I always felt it was my way of giving something back to a profession that

has helped me and supported me so much that I always say they saved my life.

And the fact that I could give a little bit back within that

just meant so, so much to me.

And it sounds like that's something that we've all.

Got in common there at that point.

But the other thing I'm really interested with, we've all lived with IBD in

our lives for, for quite some time.

I mean, especially you, Jesse, for, for most of your life.

I would say at that point, you, IBD has been part of your life.

We've said that the podcast title was Breaking the Poo Tooo.

This is something that I wanna talk about now.

It's something I always mention the poo to Boo.

How do you feel that that has changed over recent years?

Do you think it's, it is changing?

Do you think the taboo is being broken?

I'm gonna come to you first, Jess, with that one.

I mean, I think

Jess: for me, I've seen a huge shift, um, that, as I say, I was diagnosed in

1998, that was pre-social media days.

Um, we used to get magazines through the door about Crohn colitis.

It was pre-internet, and that sounds very sort of dinosaur, doesn't

it when you say it like that.

But equally, people just.

I didn't about no one talked about Crohn's.

It was something when I was diagnosed, I had no idea what the condition was.

And very similarly, when I had my stoma, that was thousand

nine and I was 21 at the time.

And even the literature I was given in hospitals was very much just lots

of elderly people that had stomas.

And it was about sort of the clothing you could wear and that sort of thing.

All the photographs were elderly, elderly women, actually, uh, from

what I remember in that, and there was nobody that I knew that had a stoma.

There was no young people, it wasn't spoken about and nobody talked about poop.

That was just, you know, absolutely not something you talked about.

So it really was a taboo.

And actually I've seen such a shift from having my first to my.

It's huge of people, social media, really raising awareness of having a stoma.

Uh, there's lots of media campaigns about Crohn's and colitis.

Everything when you put the TV on, there's the whole sort of bowel cancer

awareness at the moment as well isn't that people are being encouraged to check

their poop and it's really spoken about.

And so that shift, I think has been really positive.

Sort of in my lifetime and my diagnosis time of uh, actually people being

able to talk about it a lot more.

Hannah: Absolutely.

And how about you, Beth?

How do you feel about the, the poo taboo?

Beth: Yeah, I mean, I totally agree with what Jess said.

Um, when I was diagnosed at 13, I remember sort of prior to that when I

was starting with symptoms and stuff and being at school, I was mortified like.

The dreaded thought of like having to have a poo at school.

How would you do that?

How would you manage that?

What would people think of you?

And I still think there's, there's, like you said, there's a long way

to go and I still think some of that comes with being a young teenager.

I. And I think there's, you know, there's taboos around stuff like

that when you are young, but I definitely think it's a lot better.

And although social media can be a, a hard place for young people, I

think in this sort of instant it will be, you know, a real massive help.

'cause I, I would've, I. Love to have seen other people with stomas or with

bowel conditions and you know, talking about bowel habits and poo without

batting an eyelid, because I used to just think it was the most embarrassing

thing that could ever happen to anybody and how was I ever gonna live with I.

With this condition where I needed to talk about it, and even like going to

appointments, I remember feeling really embarrassed when they'd ask me questions.

I still didn't feel I could talk to the actual health professionals that worked

in that field about Poo because I still thought that was too embarrassing.

But I definitely think it's improved massively in the

time that I've been diagnosed.

Jess: I.

As a young person, it's very isolating.

I dunno if you found that Beth, when you were sort of diagnosed and

nobody at school would've spoken about that and trying to hide that

you were gonna, the toilet all the time was just Yeah, quite mortifying.

Really wasn't.

So you found the same Massively.

Hannah: And I can imagine, I, I know how teenagers.

And could be, I can imagine.

It was almost like, oh, you're just trying to get out of work, things like that.

You're trying to get wag glass, things like that.

Yeah, kids can be cruel.

Okay?

Kids can be cruel when it's something they don't understand.

And I think there is, as well as a lot more going on on social media, I

think there is a lot more out there now to try and educate youngsters.

And I think this is where you guys I think are absolutely amazing what you do.

And I know Beth, you talk about a lot with your.

Your oldest with Violet, with, you know, you're very open.

We talk to her about your condition and things like that.

And even if Violet goes and talks to one more friend, and that's one

more person that doesn't have that.

Over talking about it.

I think, yeah, we are breaking down those walls just one little step at a time.

It's never gonna happen overnight, but as you've rightly said, Jess, look

what's happened in 10 years, or you know, what could happen in another 10 years?

This could be if it progressed as much as it has over the last 10 years.

It.

It should be a lot, lot easier for people.

Jess: Mm-hmm.

Hannah: Absolutely.

Because the other one I, I always struggle with, and I think it's

something I still struggle with now, it's that, that with IBD, it's, it's

that invisible illness, isn't it?

It's that people can't physically see it.

I mean, I had an incident just at the weekend when I was away and.

It was quite a big event, so there were a lot of cues for the toilets.

Now, obviously with my jpo, sometimes when you need to go, you need to go.

There wasn't a cue for I, I very rarely try use disabled toilets because.

I, I try not to if I can help it, but at that point I thought

I need to go, and I actually got shamed when I came out the disabled

toilets, I got told off by a woman.

Oh, no.

And I, that's the first time I've ever had that in 12 years of having my J patch.

That's the first time I've ever actually had anybody criticize

me for using a disabled toilet.

Can I ask how you responded?

Basically what I said to her was, please don't ever judge a book by its cover.

I've probably got a lot more going on with me than you have with you.

Just be kind.

And I actually, there was a queue of people in the queue for the

toilet and they actually gave me a round of applause as I walked off.

But then on the bad side of that, I then didn't use the disabled

toilet for the rest of the weekend.

I then I, I basically run back to our house we were staying in every time I

needed the toilet at that point, because.

I was worried about being shamed again by it.

Beth: Yeah,

Hannah: it is.

It is

Beth: rubbish

Hannah: that

Beth: it just,

Hannah: just showed that there is, there is still that a long way

to go for people to understand.

I mean, so many toilets now they do have that.

Not every disability is visible, which I think is great, but I still think

a lot of people don't quite get it.

Beth: Get that.

No, exactly.

And I still think there's a lot of people that wouldn't

take that into consideration.

And like you say.

I'm the same.

I wouldn't use them all the time because day to day I don't need to.

No, but if you need to or you've got an emergency or a bag leak or

a, you know, a desperate time like you had, it's awful, isn't it?

What, what do people want you to show?

Like it's, it's, yeah, it's not very, it's just not kind.

Is it?

I think

Jess: that really does still show, doesn't it?

About the, yeah.

Poo taboo.

As you kind of mentioned that the topic, the title for this podcast that

really highlights that, doesn't it?

That there is still that poo taboo that you were shame for using a disabled toilet

and yet actually the very fact that it was a toilet that you needed, it was

sort of said it all, didn't it really?

Hannah: Yeah.

Disabled doesn't have to be, I'm in a wheelchair.

I've got this, I've got that.

Yeah, say it's my bowel.

Disabled

has made me, I need to get my card back out again that I still.

I have somewhere my, uh, can't wait toilet card.

I probably need to start using that again.

It's made me think that do, but then why should I have to explain myself?

I, I go from one step to the other.

I go from being like, okay, maybe should, should that do, should we?

Yeah.

No, and I think that's something with IBD, even from as you two,

I said, growing up with it.

You felt like you were having to explain yourself having to go to

the toilet as a youngster, and it just shows, it's something that

almost gets ingrained in with us.

We feel like we have to explain ourselves whenever we're going off somewhere and

what we're doing, things like that.

And we shouldn't have to explain ourselves.

Coloplast professional offers a lot of educational material for specialists,

nurses, and healthcare professionals.

Visit Coloplast professional.co.uk to find out more.

Jess: I think as well, there's often more to just IBD than just

needing the toilet, isn't there?

I think back to being a teenager and before I had my diagnosis that

I lost so much weight and everybody thought I eating disorder at school.

That was the, the common theme was, oh, she's obviously got an eating disorder.

And I remember the whisperings behind my back and all of that because I

didn't have a diagnosis at the time.

We didn't know what was wrong, but I was just losing more and more weight.

And I also look back at all photos and look at how swollen

my eyes were and things.

So those sort of extra manifestations that you get from IBD that are

also not spoken about that, it's just this whole taboo around,

around that sort of side of things.

Hannah: Absolutely.

And though it's almost like then the things that are becoming

visible to people become another way that they use, I mean, yeah.

Get like you right.

You said losing weight and people are eating disorder.

Yeah, she's, she's just not eating.

I have a cheeseburger.

Oh, you know what?

I'd love to eat a burger right now, but I can't.

Yeah.

Yeah.

Mm-hmm.

And this is one where I've got to ask is how do you guys both feel, and this is.

Probably quite an interesting question 'cause of the careers you both had, and I,

I know I definitely have my opinions and it's probably something you've been told.

How, have either of you ever been told, oh, have you tried

eating this special stuff?

Have you tried drinking this magic stuff?

Have you, have you tried?

I mean, I think I've even been told to try Crystals before now and things like that.

Beth: Yeah, I've had loads of that sort of stuff over the years and I think,

you know, a lot of it comes with.

Good intention, but I think sometimes people think, you

know, stop being dramatic.

Just get yourself on this diet or cut that out, or, you know,

and then also, I suppose.

Mixing it up with like I, you know, IBS as well and being like,

yeah, well I've got IBS and I'll just cut that out and I was fine.

So, you know, why don't you just give that a go and not understanding that

there is that difference even despite if you explain it, they still think, I think

you're being a bit dramatic sort of style.

Um, but yeah, get that loads like professionally and just from, you

know, friends and stuff as well.

Hannah: Was it something you experienced as a nurse with

your patients as well, Beth?

Beth: Yeah, a lot.

A lot of weird and wonderful things.

Um, and obviously we could only advise, you know, you can, that's totally up to

you, but it's not what we would recommend.

Um, but definitely lots of very.

Unusual things and things like bought over the internet, lots

of money spent on it, things that you would've never even heard of.

But yeah, it was all tried.

But I get, I suppose, especially at points of desperation when people are feeling so

unwell, if someone comes and says, try X, Y, and Z, some people I think might and.

That's the sad thing about it really.

And spend a lot of money on buying these alternative things that are probably

never gonna make any difference.

But if they're just desperate, then they'll try it.

But yeah, we used to get all sorts of weird and wonderful things,

Hannah: and I bet you see it a lot as well, just with the dietician side.

I bet it must, you must feel like you're banging your head on a brick wall

sometimes with some of the advice that

Jess: Yes, and I think it's, I think back from sort of before I became a dietician,

you know, as a teenager growing up and.

Having, you know, reading, desperately trying to research anything that might

be a miracle cure for IBD and being given alle vera juice and all sorts.

Oh yeah.

That was

Beth: so bad that Jess, isn't it?

I was just gonna say that my mom got on that as well and we had it

in like big cartons in the fridge and had like glass it, oh it

was

Hannah: so bad.

Had like PTSD from that.

Jess: But equally though, I, I do feel for my poor mother that, you know, was

given no diet when I was diagnosed, that diet made no difference whatsoever.

And she was trying to do her own research and had a, a very poorly child that

was desperately trying to get better.

And, and now I sort of look and.

I've been qualified and, and been working for years that I now look and

see people coming with lots of weird and wacky things that they're trying.

And you do sort of wanna put your head in your hands, but equally, as Beth said,

it's that desperate times and the kind of the health and wellness industry.

Let's face, it's a billion pound industry, isn't it?

And people sell you anything to try and make money outta.

People in a desperate state will try and buy it thinking, oh,

maybe this is the miracle cure.

And there's all sorts of weird and wacky diets that people go on.

And I think professionally that's then really challenging because we have

to try and break some of that down.

And people are very reluctant to change the diet in case it's something

that's making a difference because.

Said that it makes a difference.

So's friend said it cured their colitis, even though that we know, sadly at the

moment, there's no, no dietary cure for ibd, but they, they hold onto that

person that says, cured by my disease.

Um, and then it's really challenging professionally to try and get

people onto actually healthier diets and more sort of evidence based.

You can see why, where people go down those route and it's, it's really

difficult and the internet is full of sort of different myths around diets

and, and I think you're absolutely right that also other professionals will

sometimes say, oh, have you tried X?

Have you tried Y?

And people say, oh, maybe I should do that.

Because even a doctor said to me, I should try that.

But they've heard person say, made a difference.

So.

That dietary support and also for what works for you as an individual.

That's the other thing, isn't it?

Yeah.

There's lots of things that we have evidence to support diet can make a

difference in, but also we know that certain things will affect people's bowels

more than than others as an individual.

So it's, it's really important to work with people on that basis.

Hannah: And I think especially with our ileostomies, a lot of.

General dietary advice almost then doesn't apply with an ileostomy, especially in

those early stages post-surgery, where normally you'd be told, you eat a lot

of veg, do this, do that, and all of a sudden you with the after, right?

Ostomy surgery, it's like, no.

Don't do that.

Don't do that.

Don't do do go eating load and leave your veg.

I think that's so amazing for what you do in that, but just to actually, and

I remember even when I worked in the hospital, and you probably remember as

well, Beth, in your role that sometimes you're almost at odds with the dietician.

'cause the dietician's giving opposite advice to what you are

giving as the IBD specialist or almost, or the, the stoma specialist.

Yeah.

So to actually have somebody c, can we split you across all the hospitals in the

country, please, Jess as an IBD dietician.

Jess: Well, I think as well it's, it's really challenging.

Often I see people who've been given that very bland basic diet.

I look at it from the other side as well, that when they're in hospital.

Hospital is absolutely right.

Initially pre-surgery.

We need that sort of recovery time and that staying away from all that high

fiber leafy veg in those early stages.

But then sadly, a lot of people are discharged from hospital with no further

dietary advice, and they end up long term on these really beige, bland diets

that are not nutritionally complete.

Absolutely.

That fear around food is just so high, isn't it?

So it's, I I think that for me is where the big, big area often of dietary

advice is lacking in people with ileostomies, is that they're not given

that support when they leave hospital and, and further down the line, hopefully

when they've recovered from surgery.

And that's a big area that I think really needs to be improved

funding.

Hannah: If you've got somebody that's had IBD and they're an ostomy, IBD does

create quite a negative relationship with food as well, doesn't it?

I know that Pres stoma surgery, my relationship with food was extremely

negative 'cause as far as my, my brain basically processed food hurt, that

that was as far as my process went, and actually having MAs stoma creating more

of a positive impact with food with me.

But people going to that.

They, the food's already the enemy.

They're having their surgery and food's already the enemy.

Mm-hmm.

And then you give them that little guidance follow and they will follow

that by the absolute letter in full stop and then be terrified to

deviate from that to in case things go back to how they were before.

I

Jess: think back even before I was qualified actually, when I was

in the early stages of doing my degree and going to university,

and I'm actually even quite admit.

Because, not because I was trying to lose weight, but because eating solid food

was just something that just made me ill.

And at the time I was just living off slim fast, having had no dietary advice myself.

Until then, I had my, my Stoma surgery further down the line.

But actually from an IBD perspective, I hadn't been given any dietary

advice, and that's why I.

Horrendous.

Looking back at that now, thinking, actually I was so scared to eat food

because, because it made me ill at the time, or I thought it made me ill,

that was the perception that I had.

Hannah: Yeah, and is, is that perception that you, just, like you've, you created

that utterly negative relationship with food and you ended up creating another

bad relationship along the way with.

With those sorts of things and it, it, there, there does become a

vicious circle and when even when I was in hospital, there was no

such thing as an IBD dietician.

I don't think there was dieticians, but I'd never heard of an IBD dietician.

So there is more specialties within specialties coming

now, which I think is amazing.

So thank you both so much for what you, you've done within IBD.

You've for using your own experiences in a positive way, I think is the

amount of patients and os you have probably impacted along your way.

You probably don't even realize it's at the start of the podcast.

I said specialists, nurses don't realize the impact they had, but you

are those specialists as well now guys.

So you are having impact further on down the line now.

So thank you both so much for that as well.

Thank you.

And you, Heather as

Jess: well.

Yeah.

You, you also play a role in that, so,

Hannah: but thank you both so much for joining me, Beth.

It's been great to have you back and hear about how Robin's been getting on as well.

I can't believe he's so grown up now.

I know.

Thank you.

Thanks for having me back.

And Jess, thank you for joining us for the first time.

Jess: Thank you for having me.

It's been lovely and hopefully lots opened more conversations and people listening

to this will be sort of resonate with it with them as well and think about how,

what their journey's been with IBD and how that poo is hopefully changing a little

bit and what they might be able to do to also to continue to break that down.

Hannah: Absolutely.

I, as I always say with these sort of podcasts, if it makes one more

conversation happen out there.

It's a good thing.

So even if we've just made a couple more people have a chat about

their experiences, we've done a good job, girls, definitely.

And thank you to everybody listening, and we will 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.