Latest / Unbalanced with Cerys Davage / 53. From surgery to Stomababe (ft. Holly April)

Transcript

53. From surgery to Stomababe (ft. Holly April) · Unbalanced with Cerys Davage

0:10
Hello everyone, welcome back to another episode of Unbalanced
0:13
with me, Kara Savage. How are you all?
0:16
I hope you're all doing well. I hope you're all having a
0:19
lovely day, a lovely week, whatever you're up to.
0:22
One thing I love about this podcast is that I get to meet so
0:26
many different people. And I know I've been on a bit of
0:30
a streak recently with finding some interviewees on Instagram.
0:33
And believe it or not, guys, I've got another person that I
0:36
found on Instagram today and I'm really excited to meet today.
0:39
Holly, hi. Hi guys.
0:42
Hi, I'm Holly, also known as Stomer Babe over on Instagram
0:46
and TikTok. Cool.
0:48
So nice to meet you. Thank you so much for coming
0:50
onto this podcast today. Can you tell us a little bit
0:53
about yourself? Where are you from and what do
0:55
you do? Yeah, so, well, originally I am
0:59
from Oxfordshire, but I now live in London and I work as a
1:04
journalist and also a content creator and also as a mum, so
1:09
I'm always busy. You're wearing many hats there.
1:12
So many hats, so many hats. Honestly, it's exhausting, but
1:16
also very fun at the same time. But it all goes to plan.
1:20
How old are you? Have you got one?
1:21
One child, Just one guy. I've got one.
1:23
I've got my daughter Scarlett, who's now 15 months old.
1:27
Oh wow, how's that going? How's motherhood?
1:30
Yeah, it's definitely the biggest challenge probably of my
1:33
life. It's, you know, I don't know how
1:37
to describe it. I mean, I've never had really
1:39
much experience with children before prior.
1:41
Like my family's extremely small.
1:42
I've never had like any cousins or anything like that.
1:44
I've never been around babies. So it was all very much very new
1:48
to me. And everyday is a learning curve
1:51
with it. I don't think anything can ever
1:53
really prepare you for it either.
1:54
Like, you can read the books, you can watch the videos, but
1:57
everybody's like, experience is so unique with it.
2:00
And yeah, the challenges are always evolving and you're
2:05
always having to adapt to whatever's going on, especially
2:08
at this period because I feel like she's a different person
2:10
every single week right now. So like, you know, it is a
2:15
challenge, but it's also very rewarding.
2:17
That's what I probably love the most about it.
2:19
You know, it's really, it is really fulfilling.
2:21
Wow, it must be so strange to like have a mini version of you
2:25
I guess. Yeah, having like a mini me is
2:28
like so bizarre because I'm like seeing myself reflected and I'm
2:32
like, I don't know how to describe it really.
2:34
I'm just kind of like using my own experience of what I was
2:37
like when I was a child and trying to see like how I can be,
2:40
you know, more supportive with her and stuff and her
2:43
development in ways that maybe people didn't really understand
2:45
me myself. Because also some of the other
2:47
listeners, even though I share life's living with a stoma bag,
2:51
I also, I'm diagnosed with ADHD. And this is something that I'm
2:55
on a, I'm on like a real journey with at the moment is, you know,
2:59
self discovery and learning more about the condition and how it
3:02
impacts me. And, you know, as a child, I
3:05
struggled with it really, really badly.
3:06
And obviously I wasn't diagnosed.
3:07
So a lot of the time I got in a lot of trouble for stuff which
3:10
was out of my control. And I didn't mean like I didn't
3:12
understand why basically. So yeah, that's that's a whole
3:16
other, that's a whole other kind of worms.
3:18
But I guess like, because you went through it and nobody
3:21
understood why, you know, you were acting the way that you
3:24
were. Like now you've got that
3:25
knowledge and you're about to go.
3:28
That's what's really. Great about modern parenting as
3:31
well as I feel like, you know, this generation of Paris have
3:34
such a greater deeper understanding of children's
3:36
behaviour because obviously they can see themselves reflected.
3:39
Like I say, I see her a lot of the way she behaves reflected
3:42
from how I used to Babe and Isaac and she's got a lot of
3:45
beans. When I say a lot of beans, a lot
3:48
of beans. Like she's always on the go and
3:51
she always has to be busy. And I understand that because
3:53
I'm exactly the same. Like, I can't sit still.
3:56
I have to be stuff. I get bored very easily.
4:00
So does she. So it's like, you know, we're
4:01
kind of understanding. Each other.
4:04
That's the trick of ADHD, isn't it?
4:06
Am I right to see? Yeah.
4:07
I mean, it kind of varies obviously, because for a long
4:10
time people didn't believe that women could have a DHDI.
4:12
Think it's only in the last something like crazy, like the
4:15
last 10 years it's been discovered that women can have
4:18
ADHD because it was always thought it was just men.
4:21
And obviously, the typical sort of behaviours of ADHD in men was
4:25
more like, you know, being like hyper, that stereotypical kind
4:29
of like bouncing off the walls type behaviour.
4:31
But for women, they learn much more how to mask it.
4:34
So that's why nobody thought women could have it because we
4:37
were so good at hiding it. And a lot of it was internal.
4:40
So for me, like, you know, in my brain, there's just like so much
4:43
going on. You wouldn't know it if you saw
4:46
me, but literally if you looked just on my head, you'd be like,
4:49
how is she doing that? You know what I mean?
4:50
Because it's so intense. Social media is great because
4:54
you can meet so many like minded people and people going through
4:57
the same things as you and you can share your experiences.
5:00
That's one of the reasons why I just love posting so much.
5:03
Me too, honestly, Like there's such a big community out there
5:07
and it just makes you feel so much less alone in personally
5:11
things. But it's also like encouraging
5:12
other people if they think they have the same thing, as if they
5:15
can relate to someone, Oh yeah, go and get diagnosis or to go
5:19
and like get something checked, you know, like, it's like almost
5:22
saying you do matter. Like your symptoms are valid.
5:25
Go check them out, you know. Definitely.
5:27
And I feel like I do believe as well, you know, especially
5:29
through a lot of like, you know, health influences sharing their
5:32
experiences. It's like it's actually saving
5:34
lives, social media, because prior to that, so many people
5:38
suffered with like the shame and stigma of suffering from all
5:40
kinds of different symptoms and not wanting to go to the doctors
5:43
and not wanting to get seen. And now because there's people
5:46
like myself talking about like things like poo and things like
5:50
that, you know, it doesn't seem like such like a embarrassing
5:53
topic. And if people are having issues,
5:55
you know, either mentally or going to the toilet or whatever
5:57
it is, you know, they can be like, Oh well, so and so has
6:00
been through this and I can see their journey.
6:02
So it's not so scary. So I'll actually probably go to
6:04
the doctor's and see what's going on now.
6:06
Yeah, exactly. And you're breaking the stigma
6:08
as well, which I'm sure we'll we'll get into.
6:11
But yeah, I want to know and what your health journey was
6:15
like. You know, you actually have a
6:16
soma bag. How do you act on about it's
6:18
funny actually, because you know, I talk about ADOC, I talk
6:21
about soma bag. But but.
6:23
Even though they seem separate, all of it, everything is
6:26
LinkedIn, my life, everything is late.
6:27
So because I, I live my life with ADHD undiagnosed, not
6:31
knowing, I suffered with a lot of stress, anxiety about just
6:35
life in general. And a lot of the time when you
6:38
are extremely stressed or, you know, suffering from symptoms
6:42
like anxiety, depression and all that kind of stuff, it does
6:44
impact your stomach. Like, you know, sometimes in
6:46
your feeling stressed, you get really bad tummy pains.
6:49
It impacts going to the toilet, all that kind of stuff.
6:51
So I live my life with immense stress in my brain.
6:54
And then as time went on, I started to get like really bad
6:56
tummy pains. I think it started in like 2018,
6:59
I started getting the stomach aches and you know, I, I went to
7:02
the GP and as usual, it's the whole, oh, you've got IBS, it's
7:05
IBS. You know, the, that's usually
7:07
what they always say, it's always IBS because that's just
7:10
the easiest thing to say because anything else requires a lot of
7:14
testing. NHS is under pressure.
7:17
And then when lockdown happened in 2020, things had got worse
7:21
for me by then and that like I wasn't just having stomach pain
7:24
anymore. There was other symptoms that
7:25
were going on as well. So I was going to the toilet a
7:28
lot and there was like blood when I would go to the toilet.
7:30
So it was really uncomfortable, really painful, really just just
7:34
really awful, to be honest. And I freaked out because my
7:37
media thought was, Oh my God, is this cancer?
7:39
I was panicking loads. And because it was locked down,
7:42
once again, it was really hard to get a doctor.
7:43
But it's so hard to see someone. But I had private medical
7:46
insurance, so I used that. And then that's when I got
7:49
diagnosed with ulcerative colitis.
7:52
And weirdly enough, my brother has Crohn's disease.
7:55
So which Crohn's and ulcerative colitis, For those that don't
7:58
know, they're both forms of inflammatory bowel disease.
8:02
Crohn's impacts the entire digestive system.
8:06
It's literally everywhere. Whereas ulcerative colitis is
8:09
only impacts the colon and the rectum.
8:13
So it just impacts those two parts basically.
8:15
So yeah, my brother has Crohn's. I got diagnosed with UC and
8:20
then, yeah, that was that was the beginning of it all.
8:23
Wow, that was quite a journey that you've been on, obviously,
8:26
you know, being like rejected and like, do you think that's a
8:29
common thing for people that may have like deeper issues?
8:33
You know it's. Extremely rare for somebody to
8:35
get diagnosed on the first go with these diseases because
8:39
we're still learning so much about them as well.
8:41
So, you know, we're starting to realise that actually a lot of
8:44
people could be living with these conditions for many years,
8:47
but they won't all show up on exams.
8:49
So I probably had been experiencing it since 2018, even
8:53
though I was never the scans because they active ulcers in my
8:56
colon weren't actually showing on the scans.
8:59
That's that's the only way you really get diagnosis.
9:01
They have to see the ulcers on the scan and if the ulcers
9:04
aren't there, you can't really get diagnosed with it.
9:06
So, you know, it obviously takes people quite a while.
9:09
It sounds really bad, but it takes people being most of the
9:14
time the lowest point of their illness to get diagnosed.
9:17
It takes people getting diagnosed when they're literally
9:20
days away from their bowel bursting a lot of the time to
9:23
get diagnosed because people will just keep going down to the
9:25
doctor. You know, for me, for instance,
9:27
I'm very lucky I have private medical during lockdown because
9:30
if I didn't, I wouldn't have been seen then either.
9:32
And things probably would have got a hell of a lot worse for me
9:35
then and I would have ended up in the hospital eventually in
9:38
A&E. And that's usually how most
9:39
people get diagnosis through A&E.
9:41
Do you think there's more information out there now for
9:44
people to maybe clock these symptoms sooner?
9:48
Well, I think that's one of the positives, obviously, like we're
9:51
still up against a massive mountain with the NHS and
9:54
getting diagnosed and getting on the correct treatment because
9:56
there's also so many types of treatment as well.
9:59
And the issue with IBD is that no one treatment works for
10:04
everybody. It's like literally like Russian
10:06
roulette. You have to keep trying
10:07
different treatments. The first might not work, the
10:10
second might not work. So it can take years to get
10:12
symptoms into remission. For instance.
10:14
For me, I literally only was on one type of treatment when I
10:19
started. And I kept telling the doctors,
10:22
yeah, this treatment, I don't think it's working.
10:24
I'm still having symptoms. And and they just kept saying to
10:26
me things like, I'll just carry on, you'll be fine, keep going,
10:28
keep going. And then before I knew, I ended
10:31
up obviously being hospitalised, I had to have surgery.
10:34
So this is what I mean, the communication between patients,
10:37
doctors is really, really minimal.
10:41
And I know this because every single day in my inbox is
10:43
literally filled with people asking me medical questions.
10:47
Like I'm literally AGP, which is, which is madness because
10:51
people have had stoma bias for probably like over 100 years
10:53
now. And the fact that there's such
10:57
little information still, for instance, like when I was in the
11:00
hospital, I really thought that somebody was going to give me a
11:01
leaflet, you know, kind of like a breakdown of everything and
11:05
all what it was and what it nothing, nothing at all.
11:08
No information. You're getting a stomer bag.
11:10
What's that? Google it.
11:13
No one, no one sits you down and goes through the insurance and
11:15
outs of it. They just tell you that's what
11:16
you're having. And then when you leave the
11:18
hospital, which basically see you later, have a good life, Bye
11:21
bye, take Care now. There's no like follow up after
11:24
that. No, most of the time there's
11:26
nothing. Obviously a lot of it is
11:27
dependent on the borough, dependent on the hospital.
11:28
Because I know some people will say, oh, you know where I was, I
11:31
got a lot of follow up, I got a lot of this, but it's really
11:33
dependent on where you have it, you know, and every, every
11:37
single area, even in London, every borough has a different
11:40
policy on how they care for people with stoma bags.
11:43
It's so it's just very frustrating.
11:45
The whole system is so frustrating.
11:47
I could talk about it for days because I just think it's such a
11:50
mess. It's a mess.
11:53
But also, you know, with other conditions, you can pop into
11:56
boots to get a prescription or you can pop in to get whatever
11:59
you need from this place. With a stomer bag, you were
12:02
literally so screwed. For instance, the supplies you
12:05
only can get through a door to door prescription service.
12:09
So if I run out stomer bags tomorrow, for instance, I've got
12:12
nothing on me. I can't get any.
12:15
I just have to wait for somebody to come eventually to my door.
12:18
It's so old fashioned, it's so stupid.
12:21
I find it baffling. I actually, I mean, for any of
12:24
my listeners who want to read more about this or learn more
12:26
about this, I do have a petition.
12:28
It's nearly 100,000 signatures for there to be STEM supplies
12:34
available on the High Street, at airports, all of that kind of
12:38
stuff. Because obviously it is so bad.
12:41
I mean, even if for instance, I go to A&E and it's happened to
12:44
me, I've gone to A&E and obviously I wasn't very well, I
12:47
didn't have time to pack my supplies with me.
12:49
I got there, I had a leak. I said somebody have you got his
12:51
stoma? Bad stuff because I've had a
12:53
leak. They looked at me like I was
12:54
actually speaking around the language and said no, we've got
12:58
nothing. Well, I'm sure it's quite
13:00
dehumanising to be in that kind of situation and then you have
13:04
to explain to the medical profession whatever what you
13:07
need. And so I'll definitely link the
13:09
petition below. Through my work and stuff I do,
13:11
I see so much ableism every single day, stuff I never would
13:15
have really paid attention to before.
13:17
Going through what I've been through and now looking at life
13:20
through different lenses, I just see like how horrendous it is.
13:24
It is, it is so common, disabilities are so common.
13:27
And yeah, it is only until people go through it themselves
13:30
that they realise it's an issue and that's something that needs
13:33
to change. And so hopefully raising
13:35
awareness of this and like, just talking more about it and like
13:38
addressing these situations will open people's eyes.
13:40
Yeah. So it is really a case of like
13:43
going through that situation or knowing someone who's gone
13:45
through that situation for you to be aware of it.
13:47
I'm sure living with a stoma bag and has, you know, so many
13:52
different adaptations in life that I wouldn't even like, think
13:56
about because I don't need to make that an adaptation, you
13:59
know? And so that's why I'm sure I'll
14:02
have like a million questions even after recording.
14:04
I'll like think of loads that I want to ask, but and what was
14:07
that transition like? So you had your UC diagnosis
14:11
Obviously I I am quite aware that there, there are different
14:14
types of ulcerative colitis. Some they're a bit more
14:18
aggressive forms well. It's weird because when I was
14:21
diagnosed, I got diagnosed with the least aggressive form and I
14:26
remember when my diagnosis I got told I was never going to need
14:28
to be on any strong medications. I was told that basically I was
14:32
going to live a very normal life.
14:35
And I think as well because of that, when I was diagnosed with
14:38
that and I was going through the first year of the treatment and
14:41
it not working, they didn't take me very seriously because of my
14:44
diagnosis being very mild. They just thought like, Oh well,
14:47
she's got this mild form. Like it's going to be you're
14:49
fine, you know, and they wouldn't listen to what I was
14:51
saying. But The thing is with these
14:54
conditions, you know, that I've learned the hard way is that
14:58
they can progress very, very quickly if they're not treated.
15:01
And if symptoms are not under control, you can go from having
15:04
a very mild form of UC to it then like with me taking over
15:08
the entire of my colon and my rectum and being very, very
15:12
severe and obviously being in a life or death situation that I
15:15
was left in when I had to then have made the well, not even
15:19
makes it. I didn't really have a choice.
15:20
But then have my stoma bag even now, you know, I'll get people
15:24
messaging me saying like, oh, you know, have this really mild
15:27
form of osteochlitis. So, you know, that probably
15:30
won't. I think, you know, everyone
15:31
thinks, oh, it won't be me. And that's never going to be me.
15:33
I'll never be in that position. And I was like that.
15:35
So when I got diagnosed, I was also of the mindset of like, oh,
15:38
you know, La, La, la, I'll be fine.
15:42
And then obviously, yeah, I just took it all completely for
15:45
granted, to be honest. But in a weird way, even though
15:50
like, I went through a lot and it was really bad, I'm actually
15:53
extremely relieved now that I've gone through all of that.
15:57
I've gone through all the surgeries.
15:59
I've got everything taken out. So I don't have a colon anymore.
16:02
I don't have a rectum anymore. My bum hole is sewn shut and my
16:09
bag is permanent. And I'm actually extremely
16:14
relieved because, you know, through the community, through
16:18
even people I know personally, I have seen people progress from
16:22
having mild disease to having stage 4 bowel cancer and to no
16:26
longer being with us. That happened to one of my very
16:28
close friends, actually. So I am so relieved.
16:33
Now. Technically I don't have UC
16:35
anymore. Now I don't have it.
16:37
So I'm like free, I have my bag, which it has its, you know, own
16:41
challenges or whatever, but I, I, I'm not where I was before
16:46
and I'm not going to be anywhere.
16:49
That's like life death situation.
16:51
Again, you're not going to be mine.
16:54
Where it'll get worse? I mean, I've gone through
16:56
childbirth and I'd do that any day of the week over what I was
16:58
going through before it was that bad.
17:01
What? That's what people didn't
17:02
realise. Like it's literally when you've
17:04
got it that bad. Like obviously where I was, the
17:07
pain is so severe, you feel as though somebody's literally
17:12
stabbing you with a knife all day.
17:15
You can't shower, you can't wash, you just can't move.
17:17
I just laid there like a dead sloth until I was, until I ended
17:21
up one night thinking like, this is it?
17:23
Like I literally felt like I was dying.
17:25
I was like, this is it now I'm going.
17:28
And that's what I told my mum and she actually pulled me in
17:31
the car and drove me to the hospital.
17:32
And then I was there for two months because of how, you know,
17:37
bad things had got. Well, thank goodness we have
17:39
people like you to raise awareness of this because I
17:41
guess you don't really anticipate how bad it is unless
17:44
you go through through it yourself.
17:47
And I guess it's, it's good for people that are maybe just like
17:50
starting to get symptoms or getting a diagnosis that may not
17:54
know what's to come. And they've got people like you
17:56
who's been literally through hell and back that can, you
18:00
know, be there for them in that time.
18:02
Like that's, that's so important.
18:04
But I always say to people now that firstly, if anybody
18:07
messages me newly diagnosed or they've been or they've had
18:09
symptoms for a while, whatever, I will say like if you're having
18:11
any type of symptoms, just don't leave it.
18:14
Advocate for yourself. That's something that I've got
18:17
much better doing now down the road.
18:19
And when I was pregnant with Scarlet, I, because I've been
18:23
through all of this, I really knew how to say what I wanted,
18:26
how to push for stuff, when to say no.
18:29
When people were telling me to see, you know, for instance,
18:31
they wanted me to have an actual birth.
18:32
They were like, oh, you know, have an actual birth because
18:35
you've had the surgeries and having AC section, you know,
18:38
you're going to risk having more scar tissue this, that and the
18:41
other. And I was just like, no, no, I'm
18:45
not doing that. I don't want a natural birth.
18:47
I'm not interested in one. I want AC section.
18:50
This is what I want. And this is what I'll be doing
18:52
today, You know, But a lot of people, I think would go in
18:55
there, have people say that somebody like, oh, well, if
18:57
that's what you say, like instead of thinking about what
18:59
actually they want and what makes them comfortable because
19:02
yes, you, you must listen to the doctors if they're giving you,
19:05
you know, medical advice. But you must also weigh up how
19:08
you feel and you know, what's right for you as well.
19:11
Yeah. And I guess having situations
19:14
like these and conditions like these force you to be a self
19:17
advocate and to just stand up for yourself.
19:20
Like no one knows your body better than you do.
19:23
So that's why it's so important to fight because you know, you
19:26
could get dismissed, so you get misdiagnosed, but you.
19:28
Know. If there's something wrong.
19:30
So I guess having a disability like makes you more resilient
19:34
and makes you more just, like makes you like mentally stronger
19:38
and like want to fight for what you deserve more.
19:42
And you've definitely proven that with this, you know.
19:45
Oh, 1000% Disabled people are the strongest, toughest people
19:48
because they have to go through so much just to get heard.
19:52
It takes so much As for, you know, the medical professionals
19:56
or even the general public to listen to disabled people.
19:58
So you learn how to become extremely resilient, extremely
20:01
thick skin, especially online as well.
20:04
Because you know, like I said, I post on Instagram, I post on
20:06
TikTok. Of course, I get horrible
20:08
comments. I get them all the time, I get
20:09
everyday. And some of them are literally
20:12
horrendous. And you know, you, you have to
20:15
learn literally very quickly how to not let those affect you and
20:20
to focus on why you're there and what you're doing and kind of
20:23
block out the noise. Because, yeah, a lot of people
20:27
don't understand disability, as we say.
20:29
They don't think it's going to happen to them.
20:31
They think that they are so above it all and that their life
20:34
is always going to be smooth sailing.
20:36
And to be fair, you know, I did the same thing before everything
20:39
happened to me. I, I never had to think about
20:41
any of this kind of stuff. And then, and I've had friends,
20:44
even friends who, you know, have been very ignorant and said
20:48
things to me. And then something's happened
20:50
later down the line to them. And then they'd come to me and
20:52
be like, oh, now I get it. Now I understand and sometimes
20:55
I'm like, oh, it really shouldn't take something bad
20:58
happening for you to be able to relate to ill people, disabled
21:02
people. But unfortunately I don't know
21:04
if that's ever going to change because it's just, that's just
21:07
human nature really, isn't it? We don't really get something
21:09
until we've been through it ourselves.
21:11
Yeah, and we only care for ourselves, you know?
21:13
Yes. And we're very.
21:14
Selfish. Yeah, Definitely.
21:16
Yeah, so obviously you do a lot of content online.
21:20
Despite the hate, you help so many people go through
21:24
different, you know, situations. I want to ask what are the most
21:27
like commonly asked questions or misconceptions about having a
21:31
stoma bag that you you addressed quite a lot on?
21:34
Wow, I don't think not long. We've got there's so many
21:37
obviously can you have a baby which he can't because I've got
21:40
one. Yeah, yeah, I.
21:42
Mean, kind of. What was that like though, with
21:44
a stomach? And there's nothing.
21:45
So I think people think that if you're having a baby with a
21:47
stoma, like it's going to be this like very different weird
21:50
experience. It's just as well, I can only
21:53
speak for myself because I'm, you know, I'm me.
21:55
I can't speak for other people, stoma bags who've gone through
21:57
having a baby. But for me, it was extremely
21:59
normal experience. The only thing that's different
22:01
is I had a few more scans than a regular person.
22:04
It was a bit more difficult having to like liaise with the
22:06
doctors to explain. Like I said, a lot of even
22:09
doctors, nurses, medical professionals don't know about
22:11
stomas. So a lot of the time I'm the one
22:14
educating them and sitting there and being like, you can't do,
22:17
they'll say, I mean, I had one scan, what's it called?
22:21
The ultrasound? The radiographer was it, should
22:24
I say, oh, can you take your bag off?
22:26
Because we need to. When I was like, no, are you
22:30
joking? I was like, I take my bag off.
22:32
I'm going to be covered in poo. So no, I can't take my bag off.
22:37
You know, you think that they would know that.
22:40
So that's the only thing that I found difficult by being
22:42
pregnant. So I felt like I was having to
22:44
just like keep explaining to myself all the time because
22:47
people didn't understand this, didn't understand that.
22:49
But in terms of like complications, there was no
22:51
complications. I was completely fine.
22:53
My stoma stayed the same. My skin got a bit sore around
22:57
stomachs. It stretched and that caused
22:59
some issues because I had a plan C-section.
23:01
I felt very relaxed about the whole thing because I knew
23:03
exactly when and where it was going to it might happen.
23:06
And I've already had abdominal surgery, so I knew exactly what
23:09
to expect there. And I decided as well, like this
23:13
is this another way that I advocated for myself again,
23:16
because you know, C-section is usually like a horizontal line
23:21
C-section. I obviously have had previously
23:25
2 abdominal surgeries, 1 to create my stoma bag, 2 to remove
23:29
my rectum and the remaining part of my colon.
23:31
So I have a vertical incision underneath my belly button.
23:35
And I did some research online about actually vertical C
23:39
sections because I was thinking to myself like maybe if I did
23:43
that I wouldn't have to have another scar, which is a little
23:45
bit like, you know, vein of me. But you know what?
23:47
I don't care. I've been through loads.
23:49
If I'm going to be a bit BAE, like, let me have all.
23:51
We're all going to be thinking that, I'm sure.
23:53
Right. I'm like, they've already opened
23:54
me up like a couple of times. Like why have we got to make
23:56
another line for the sake of it? So I literally went in and I
24:00
said to the doctor, I was like, you know, I've already got the
24:01
first incision, like could we just go through that way?
24:05
And they were like, yeah, yeah, it's a bit more of a complicated
24:07
like recovery time because it's, it's a bit more invasive.
24:11
But if that's what you want, and I was like, yeah, yeah, that's
24:15
that's exactly what I want. Yeah.
24:16
I think John is quite healing because I feel like the two
24:19
surgeries I've been through before were so horrendous.
24:22
One was obviously unplanned, one was emergency surgery.
24:25
The second surgery was a planned surgery, but I was still very
24:30
ill before it. I was still very, very sick
24:32
because even though I had my stoma bag, I still have my bum
24:35
and I was still bleeding from my bum when I had my stomach bag
24:39
because I still had my rectum in place.
24:41
So I still had technically still had colitis and it was really,
24:45
really painful and awful. So I still in a lot of pain.
24:48
So the recovery from the second surgery was not very nice
24:51
either. Really horrible, not as bad as
24:55
the first surgery. I was only in for a week, but
24:57
that week was not very nice. It was really horrid because I
25:01
had a couple of side effects from the surgery.
25:04
So it was actually really healing to then have my baby
25:07
because I wasn't ill before it. I was, I just was going in calm,
25:11
not sick, had the surgery done and thankfully I didn't have any
25:16
complications afterwards. So I was just in there being
25:19
able to just kind of like lay down, just relax a bit, which is
25:24
so weird. But it was just he, it was just
25:25
nice to have a healing experience and also to have
25:27
something positive at the end of it.
25:28
You know, the last two, you know, there's nothing really
25:31
that positive to look forward to.
25:34
But when this is quite nice, it's like, oh, this is actually
25:36
a positive. I've got something really nice
25:38
coming out of this. This is lovely.
25:40
Yeah. You know me exactly.
25:41
So it was, it was really, it was a really nice just to have that
25:44
kind of positive end to all of it.
25:46
I feel like was quite nice there.
25:48
Yeah. Yeah.
25:50
What other questions do you get? Babies, does it hurt because
25:53
obviously if you see any of my videos that I do online, I I do
25:57
stoma bag changes they're very popular videos because for
26:00
obvious reasons, most people have never seen what stoma looks
26:02
like. So people are curious they watch
26:04
the videos they see the intestine which sticks out it's
26:08
my small intestine yeah small intestine.
26:11
It sticks out. It's very rare.
26:12
It's an intestine, like it's not very pretty.
26:15
It's, you know, it's, you're not going to want to take a photo of
26:18
it and put on your wall. It's not the Mona Lisa.
26:20
It's it's, it's, it's not, you know, even I remember the first
26:23
time I saw a stoma before my surgery now even I was like,
26:27
that's something to look at, isn't it?
26:28
Like it's, no, it's a bit of like a, you've never seen one
26:30
for it's a bit of a, wow, that's something.
26:33
Do you know what I mean? Like you have a bit of a shock,
26:35
but actually the intestines have no feelings at all.
26:39
So even though it's pulled out and it's really red and it can
26:42
look really sore, if I touch it, I feel nothing.
26:44
There's no sensation, which is, which is wild.
26:49
So even if even if I fall on my stomach, I smack it that I don't
26:53
feel anything. There's no, there's no
26:54
sensation. That's so yeah thing.
26:58
So I think that's definitely, well, the thing I get asked so
27:00
much is does it hurt? Does it hurt?
27:02
Does it hurt? No, no, it does.
27:04
It doesn't hurt. Oh, people obviously ask me a
27:06
lot if I can get mine reversed. I could have got it reversed.
27:09
I opted not to have a reversal again.
27:12
That's a whole different. That's the whole thing in
27:14
itself. But basically, you know, a lot
27:16
of people think that you can have a stomer bag and just get
27:20
reversal and it's just as easy as that.
27:22
It's really not. It really depends on the illness
27:25
you have prior to having a stone bag.
27:26
But obviously for myself, I have, you see, rectum, colon is
27:29
where the information was. Now, if you have a reversal,
27:33
it's quite clever how they do it.
27:34
But what they do is basically they take the intestine that's
27:38
out front, they put it back inside.
27:39
They sort of like bend the intestine around.
27:42
They sort basically create what is called AJ pouch.
27:45
And it actually looks like the shape of AJ inside.
27:49
And it kind of creates like always like a stone bag on the
27:52
inside. But we're doing testing.
27:54
It's so crazy how they do it, but it's sort of like re diverts
27:59
everything and hooks it back up to your bum again.
28:01
So you will start to have toilet movements back through the
28:04
bottom again but but it won't be the same as what you had before.
28:09
You'll never go back to having a solid poo.
28:11
It's never going to happen for you.
28:12
All that's going to happen is you're going to have liquid
28:14
coming from the back end and you won't have control over it.
28:17
There's no control. It will just come out.
28:21
So people then once again go back to struggling with
28:23
incontinency and then wearing, I mean, some people must we say
28:27
they're wearing nappies. And I was like, do you know
28:29
what? I don't want to wear nappies.
28:32
I don't want to be incontinent. I've been there, done that, and
28:36
I'm happy now. I've got my bag because I know
28:38
when it's full. I know when I need to empty it.
28:40
I'm not like leaking and having accidents now that I've got a
28:43
good routine with all my products.
28:45
So I just, you know, it's purely just because people don't like
28:49
the the sight of the bag. And I get that because obviously
28:52
it depends on your situation. I mean, for instance, you know,
28:55
like if you're single, especially, you can feel like,
28:57
oh, no one's going to ever love me as I am with my bag.
29:00
I'm so gross. And I get that all the time.
29:02
People measure me saying I feel disgusted, I feel sick.
29:04
So I get why people then will choose to give the reverse the
29:08
go. Unfortunately, a lot of people
29:11
didn't have to have another surgery down the road to go back
29:14
to having a stoma bag because the reversal doesn't work out
29:17
because they end up in terrible pain, inconsistency.
29:21
Other conditions could come on from the reversal.
29:24
I was told there's a risk that if I had a reversal, I could get
29:26
Crohn's disease. So for me, I was just having,
29:32
like I said, bad bleeding from my back end with my stoma bag.
29:35
So that's why I decided to make it permanent and get rid of the
29:38
remaining rectum so that basically everything was shut
29:41
for good and I wasn't going to have pain or issues anymore.
29:45
But I also got very lucky because I met my part, my my now
29:49
partner. I met him not long after my
29:52
stoma surgery. I was only in a relationship
29:53
when I had my stoma surgery and we broke up not long after, not
29:57
because of the surgery, but just, you know, generic life
29:59
stuff. We split up and obviously I was
30:01
really scared about them dating again and like, oh, how do I,
30:04
how do I date like all this, that and the other.
30:05
I was really frightened. But I just got very lucky that I
30:07
met who Callum, who I'm with now, because he was very open
30:11
minded, very understanding. None of this ever bothered him.
30:14
Nothing ever phased him. And it was he was played such a
30:17
massive influence in making me choose to make my bag permanent.
30:20
Because when I first started dating him, all I kept saying to
30:23
him was I'm going to get a reversal.
30:24
I'm going to get a reverse. I, I don't like it.
30:26
This, that and the other. And he started coming me to my
30:29
doctor's appointments and stuff. And we were talking through
30:32
everything and what I was going through.
30:33
And obviously he saw how much I'm suffering bleeding from my
30:36
back end and I was in pain and screaming and all this, that and
30:39
the other. And he was, it's like, you know,
30:41
is this really worth it? Like this is awful.
30:44
You can't do stuff you can't get.
30:45
We can't go out and do things together.
30:48
Like do you really want to like go through the reversal stuff
30:51
and all of that? And why don't you just like make
30:54
the bag permanent and we just get on with life.
30:58
And, you know, I think for the first time ever, I, I actually
31:00
thought about that as a possibility because before that
31:02
I'd never even thought about it because my mind was so set on
31:05
like, I have to get reverse. I have to.
31:07
And then also started to talk to other people in the community
31:09
about their experiences with reversals.
31:11
I was like, Oh my God, this is really opening my eyes.
31:14
I didn't know any of this. I didn't know it was like that.
31:18
Is that when you started to do your own social media?
31:22
Yeah, just sits you around that sort of time.
31:23
Yeah. So then I was like, you know,
31:25
and then so many people were fried of making their bag
31:27
permanent because there's so many horror stories about then
31:30
having like they call the Barbie Bum surgery.
31:33
That's like the slang name for it.
31:34
The technical time is proctectomy surgery.
31:37
There's so many horror stories about that.
31:39
And I was like, right, well, I want to completely share my
31:41
entire experience because good or bad, at least says like a
31:45
proper account of it for people to see because there really
31:49
wasn't anything like that. Even like when I posted about
31:52
mine a couple of years ago, there was nothing like that.
31:54
So like now I think it's actually my view most of you'd
31:57
highlight on my page because there is so little information
32:00
and people want to know like what is it like to make your bag
32:04
permanent? What is it like to get bum
32:05
sonar? Because when the hell else are
32:07
you going to see that kind of material where you're not you're
32:09
not going to you're not going to see it in like a book in
32:12
Waterstones. People are so fascinated and
32:16
actually, even though, yeah, and even though I had, like I said,
32:19
some really bad side effects on the first week when I was in the
32:21
hospital, when actual recovery process once I left was really
32:25
good. I healed very, very quickly.
32:28
I was really, really shocked because so many people are like,
32:31
Oh my God, like you're not going to be able to sit down for a
32:33
year. You're not going to be able to
32:35
do this, and you're not going to do that.
32:36
So, you know, I was actually terrified, you know, and this.
32:39
Is why you why are they saying that?
32:42
However, because because, you know, everybody's experience is
32:44
so, so different. So I'm sure there are people out
32:47
there who couldn't sit down for a year.
32:48
Yeah, I'm sure, literally, I'm sure there is.
32:49
But everybody's experience is completely different and unique.
32:53
So I think it's really important that there are accounts that are
32:55
positive like mine, as well as the ones that haven't obviously
32:58
gone so well. My situation was purely the fact
33:01
that I had an inflamed rectum this inside that just needed to
33:04
come out. People just kind of get their
33:06
head around the fact that I would choose as a young woman to
33:09
make something like this permanent and that I wouldn't
33:11
want to have a reversal. Like I think that baffles so
33:14
many people. So people write things like, oh,
33:16
bless you and stuff all the time, time.
33:18
And I'm like, you know, you express me.
33:19
I'm. I'm actually really probably the
33:21
healthiest I've ever been now, do you know what I mean?
33:23
Like, I'm really good. Yeah, I got a bag.
33:26
And like, you know, sometimes I have to empty it, but people
33:28
still have to go to the toilet. So like, what genuinely is the
33:31
difference? It's not really much of a
33:32
difference. Exactly.
33:34
Yeah, And it sounds like you're thriving more than you ever have
33:37
been, really. And yeah, it's never in.
33:39
Real life back, right? Yeah.
33:41
And of course, but obviously, you know, I have to say, because
33:43
people will always say, if I'm just talking about positives,
33:46
I'll be like, Oh, it's not realistic.
33:47
So, you know, obviously there are challenges, like I said,
33:51
access to supplies, people not understanding disabled toilet
33:55
access, people judging you for using disabled toilets because
33:57
you look by there are downsides to to all of this as well.
34:02
But purely for me, I just like to talk about more of the
34:07
positives because I feel like there are already so many
34:09
negatives online. If you want to find negative
34:12
accounts of life in Stone Bank, you can probably find thousands.
34:16
But to find positives is quite difficult.
34:20
And I know, for instance, from my own journey, when I was
34:22
looking at accounts, I wanted to find positives.
34:25
I didn't want to see negatives because if you've got to have a
34:28
stomer bag, you've got to have one.
34:29
You're not really going to have much of A choice.
34:31
For me personally, I had to find a way to embrace it.
34:33
Otherwise what hell else would I have done?
34:35
Like just lie in bed and never left the house.
34:37
Like I just didn't want to do that.
34:38
I wanted to be positive. Exactly.
34:41
And that's something that a lot of people, disabled people have
34:44
to kind of adjust to. Like when I realised that I've
34:48
got a condition that's going to affect my life and get worse as
34:52
I get older, Yes, you could cry in bed all day or you can just
34:55
go out there and just make the most of life, you know?
34:58
And I love that you're creating a platform that's educating
35:01
people, but in the most like, positive way and like, just
35:04
making it seem like this is not a big deal.
35:06
Like, I love the comments that you get that are like, like,
35:09
this is terrible. And you're actually no, here it
35:11
is. It doesn't.
35:13
That's what it is like, I don't think listening people say to
35:15
me, oh, you're just like, you know, glamorising.
35:17
You make it so positive. It's not even that.
35:19
It's not that I'm trying to make it the most positive thing in
35:21
the world. The glamorous thing, well, all
35:23
I'm trying to do is make it a reality that it is.
35:28
For some people it's, it's just a reality.
35:30
It exists. We're here.
35:32
This is what happens. It's not something to be ashamed
35:34
of. It's life, here we are.
35:37
That's all I'm trying to make it.
35:39
That's all I try to do is to make it so it's just an
35:41
everyday. And she was so fabulous.
35:42
Even today I was out with my daughter shopping takes, I was
35:45
off work. And literally this lady, I hear
35:48
the same. I hear someone go Holly and I'm
35:50
like, I turn around and it's this lady and she's literally
35:53
come up to me. She recognised me for my
35:55
Instagram. She had a stoma bag and we just
35:58
stood in Primark having a chat about our stoma bags.
36:02
Do you know what I mean? And I just love the fact that
36:05
from sharing now, people can feel able to talk about
36:08
something that they may never have spoken about before.
36:12
And it just feels like so normal.
36:13
I said, oh, God, look, there's another person like me.
36:15
He's got a bag. Like, oh, let's just have a
36:17
chat. I just don't think that, like,
36:18
even like, five years ago, that's something that would have
36:21
happened. No, it collects social media.
36:24
Taboo thing and it's not talk about in schools, it's barely
36:27
talk about like within like hospital staff.
36:29
So for, for people like you to just like show the reality of
36:33
it, it just breaks the stereotypes and yeah, like gets
36:36
people talking about like taboo things that really everyone goes
36:40
through and like isn't really a big deal, you know, So that's
36:43
that's just really good what you do.
36:44
Where can we find you on social media?
36:47
So it's at stoma babe. I'm on Instagram, Tiktok, and
36:51
I'm on X, But yeah, literally the main thing that I ever
36:54
wanted from my page is that anybody who's ever gone through
36:57
a surgery like this, who doesn't know how to talk about it with
37:00
their friends, their family or whatever, all they can do is get
37:02
up their phone, type my account username in, go up to the person
37:06
to go, oh, I've got what this lady has.
37:08
And then that person could just go through my page and learn
37:11
about it. And then the person who's
37:13
experienced that, who maybe doesn't have the strength to
37:14
talk about it yet or doesn't know how to explain it, doesn't
37:17
have to because they can just look at things that I put up.
37:20
And then they can be like, oh, OK, oh, cool, she's got it.
37:23
And look, no, she's doing a marathon.
37:24
And look, she's a baby. And oh, no, she's got a holiday,
37:28
you know? And then I just think that's
37:29
just like, that's what she always been the aim of my
37:32
accounts is just to make people feel like they can.
37:37
Yeah, well, thank you so much for taking your time to like
37:41
share some really valuable advice for people that might be
37:45
struggling with the diagnosis. Thank you for sharing your story
37:48
and just thank you for all the work that you do on.
37:50
Thank you for. Having me on this was so great
37:52
chatting. I fell off chat for England but
37:54
you know. People say that about me.
37:56
I can chat for Wales but I need to like learn.
37:59
When I interview people, I'm the one that has to shut up and
38:01
like, listen to other people. That's issue.
38:03
Well, my journalism job was just talking over everyone, but yeah,
38:07
difficult. Well, thank you guys for
38:09
listening to this episode. If you enjoyed it, don't forget
38:12
to follow and rate this podcast 5 stars.
38:15
Don't forget to follow Holly at Stoma Babe on socials.
38:19
Thank you so much to Cure LGMD 2 I for sponsoring this podcast.
38:23
I'll be back with you guys very soon with another episode, but
38:26
until then, bye bye. Bye.