Latest / Tom's Hirschsprung's Podcast / Episode 40 - With Rachel (@gutsy.mum)

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Episode 40 - With Rachel (@gutsy.mum) · Tom's Hirschsprung's Podcast

• 0:05
  Speaker 1: You are listening to Tom's Hirshbrun's Podcast, where I provide
• 0:08
  Speaker 1: a look into the remarkable experiences of the most inspiring
• 0:11
  Speaker 1: people around Hirshprung's disease and sports.
• 0:38
  Speaker 2: Hello and welcome to episode forty of Tom's Hirshprung's podcast.
• 0:44
  Speaker 2: Very special guest with me today somebody who I've wanted
• 0:47
  Speaker 2: on for a long long time. I think I messaged
• 0:51
  Speaker 2: you first back in January, but you were busy having
• 0:54
  Speaker 2: a baby, so you are excused.
• 0:56
  Speaker 3: So that's fine. But welcome to the podcast. Rachel.
• 1:01
  Speaker 4: Hello, Hello, well done on your number forty by the way,
• 1:05
  Speaker 4: well thank you, impressive.
• 1:07
  Speaker 3: Thank you.
• 1:08
  Speaker 2: It's nothing without the guests. I'll be honest, it's I
• 1:12
  Speaker 2: need guests to survive otherwise I cannot do it. I
• 1:15
  Speaker 2: did one episode on my own. It's about eight minutes
• 1:17
  Speaker 2: of me just rambling on about various things. So I
• 1:23
  Speaker 2: need guests like yourself otherwise I struggle. But thank you
• 1:27
  Speaker 2: so so much for coming on. And as I mentioned
• 1:30
  Speaker 2: as well at the start, he was somebody who I
• 1:34
  Speaker 2: really wanted on because you are not only a person
• 1:39
  Speaker 2: with hirshbruns, a mom with hirshbruns.
• 1:41
  Speaker 3: That you are.
• 1:42
  Speaker 2: Amum to two boys with hirshbruns as well, so you're
• 1:45
  Speaker 2: in a very very unique position, and I think it'd
• 1:49
  Speaker 2: be great to get your perspective on things and story
• 1:53
  Speaker 2: as well. I'd like to start, well, if I may,
• 1:57
  Speaker 2: from the beginning, from when you were first diagnosed with hirshprungs.
• 2:03
  Speaker 2: Were you diagnosed from birth?
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  Speaker 4: Yeah, yeah, so the same as me and the two kids,
• 2:09
  Speaker 4: So my parents there was no history of it. They
• 2:13
  Speaker 4: didn't have a clue what it was. And the classic
• 2:15
  Speaker 4: signs of Tommy to stending, vomiting, bio and waste, no
• 2:21
  Speaker 4: poohing anywhere, and yeah that all the red flags will
• 2:26
  Speaker 4: go in and erect or biopsy confirmed it and yeah
• 2:32
  Speaker 4: and have hirshpruns.
• 2:34
  Speaker 3: Yeah, woo lovely.
• 2:35
  Speaker 4: No one wants but gets anyway, you're.
• 2:39
  Speaker 2: The one in five thousand. Ye, we'll be lucky for
• 2:44
  Speaker 2: that sense. But it's the same way, the director biopsy is.
• 2:49
  Speaker 2: It's the same way now as it was back then. Again,
• 2:54
  Speaker 2: because I know we were talking a little bit off
• 2:55
  Speaker 2: air that we're near and after the same age, so
• 2:58
  Speaker 2: we'd have had very similar in terms of care and diagnosed.
• 3:03
  Speaker 3: At that age.
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  Speaker 2: But you've obviously gone through the same as a parent
• 3:08
  Speaker 2: as well, so exactly the same way that they diagnose
• 3:13
  Speaker 2: hirshbruns now back then.
• 3:15
  Speaker 4: So I mean, I can only talk about our experiences.
• 3:19
  Speaker 4: But yet with my two boys, it was wrecked or
• 3:21
  Speaker 4: biopsies that confirmed it. So they presented with the same
• 3:25
  Speaker 4: symptoms as me. So the three of us all have
• 3:28
  Speaker 4: total colonic hirshbruns. So it's all through the colon and
• 3:33
  Speaker 4: part of the small intestine, so that most severe of
• 3:37
  Speaker 4: the four types of hirshprungs you could be born with.
• 3:40
  Speaker 4: And yeah, the signs were clear from when we were
• 3:44
  Speaker 4: all born. I mean, it was a bit different with
• 3:47
  Speaker 4: my youngest. So the baby is six nearly six months
• 3:50
  Speaker 4: old now, so with him, the treatment had kind of
• 3:53
  Speaker 4: changed from when I had my eight year old in
• 3:56
  Speaker 4: that they were trying bowl.
• 3:58
  Speaker 5: Wash outs.
• 4:00
  Speaker 4: For a bit longer this time round because he wasn't
• 4:03
  Speaker 4: as poorly as my eldest and as I was. And
• 4:07
  Speaker 4: so I think they tried the bow washouts for about
• 4:09
  Speaker 4: a week or so. We thought he would get by,
• 4:11
  Speaker 4: but then he kind of, you know, it piques and trust,
• 4:14
  Speaker 4: doesn't it and he was all right, but then he
• 4:16
  Speaker 4: dipped again and they were like, you know, what no
• 4:18
  Speaker 4: rector biopsy. We we he might need to stonema. So
• 4:23
  Speaker 4: he ended up the same as me and my eldest anyway,
• 4:26
  Speaker 4: that yeah, all with the most severe of it. I mean,
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  Speaker 4: it's more common in boys than girls, isn't it statistically?
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  Speaker 4: So because I had it and I was a girl,
• 4:36
  Speaker 4: in my head, I was thinking, oh, I hope I
• 4:38
  Speaker 4: have girls because then maybe they won't get it. But yeah,
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  Speaker 4: got too. I always tell everyone I need a third
• 4:46
  Speaker 4: just I see it's a curse, Like, surely if I
• 4:49
  Speaker 4: have a third kid, it would not happen again. Like
• 4:52
  Speaker 4: it's so tempting just to be like, I need to
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  Speaker 4: prove this to the world that if it was.
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  Speaker 3: Just going until you've finally.
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  Speaker 6: Proved, like that's not all I'm good for. When you've
• 5:07
  Speaker 6: had about nine ten children that finally proved, then will
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  Speaker 6: they will know.
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  Speaker 4: Can you imagine? Oh, it's with hirshprings.
• 5:15
  Speaker 5: Oh my god?
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  Speaker 3: Yeah yeah, but.
• 5:20
  Speaker 2: So you were born with total total coli hirsh broth.
• 5:25
  Speaker 2: So have you had a stoma for the whole time
• 5:29
  Speaker 2: from them?
• 5:30
  Speaker 3: No?
• 5:31
  Speaker 4: So yeah, I had stonma surgery about a week old,
• 5:35
  Speaker 4: and then when I was two and a half, my
• 5:38
  Speaker 4: parents elected to have it reversed, which is what's offered
• 5:42
  Speaker 4: to all parents if it's possible. And one thing that
• 5:45
  Speaker 4: surgeons have always told me is stonmas are never you know,
• 5:50
  Speaker 4: it's not what you want. It's not something you should
• 5:52
  Speaker 4: be choosing to have if you can live without it,
• 5:57
  Speaker 4: which is hard to hear really because in my case
• 6:00
  Speaker 4: I had it reversed. But my childhood, I don't know
• 6:03
  Speaker 4: what yours was like. But I was poorly all the
• 6:05
  Speaker 4: time and timmy bugs all the time, susceptible to God
• 6:10
  Speaker 4: knows what off with like DMV all the time, hoping
• 6:15
  Speaker 4: emodium like they were smarties. I mean, my God, Like
• 6:18
  Speaker 4: my parents must have financed the production of emodium in Wales.
• 6:21
  Speaker 4: And if they did anything, I don't know, but the
• 6:24
  Speaker 4: amount I took I don't know how. I'm not brain
• 6:26
  Speaker 4: damage or something, but anyway, and yeah, I just wasn't well.
• 6:31
  Speaker 4: And then I'd have probably one week out every half
• 6:34
  Speaker 4: term off school and growing up as a kid, and
• 6:38
  Speaker 4: then through puberty and that it's not the best, it's
• 6:41
  Speaker 4: not great. And then fast forward to when I got
• 6:45
  Speaker 4: pregnant with my eldest when I was twenty six, and
• 6:50
  Speaker 4: I was quite well when pregnant but then I got poorly.
• 6:55
  Speaker 4: Not long after I had severe rectal pains. It'd be debilitating.
• 6:59
  Speaker 4: I had two surgeries of botox in Jackson's, which I
• 7:02
  Speaker 4: don't know if any of your previous guests have had,
• 7:04
  Speaker 4: but they were saying, oh, you know, we can treat
• 7:07
  Speaker 4: it by having botox so that it can numb the area,
• 7:10
  Speaker 4: because they didn't know if it was tears, fistullas or
• 7:13
  Speaker 4: scar tissue in the rectum because the disease is in
• 7:17
  Speaker 4: the rectum as well. But in the end, I got
• 7:20
  Speaker 4: to the age of thirty and it was in the
• 7:23
  Speaker 4: start of COVID actually, and I couldn't go on any longer.
• 7:28
  Speaker 4: The NHS wouldn't do anything else with me, and I
• 7:31
  Speaker 4: just wanted a stoma because I thought, I can't live
• 7:34
  Speaker 4: like this anymore. My only option is to have a stoma.
• 7:37
  Speaker 4: But the surgeons would not go near me. They were like, no,
• 7:40
  Speaker 4: you've had too much surgery, You're too much of a risk.
• 7:43
  Speaker 4: So I ended up pay him for a private consultation
• 7:47
  Speaker 4: two hundred and fifty pounds, and I just sat in
• 7:50
  Speaker 4: front of a surgeon and I just begged him and
• 7:52
  Speaker 4: I said, please, I'm not living I can't be a
• 7:56
  Speaker 4: parent to my kid. I'm in pain walking, I just
• 8:00
  Speaker 4: need you to help me. And he said, yeah, I'll
• 8:01
  Speaker 4: do you a stonma and I'll put you on my
• 8:03
  Speaker 4: NHS list. And it was like, I'm not a religious person,
• 8:07
  Speaker 4: but it was like someone was just looking down on
• 8:10
  Speaker 4: me that day. It was like, that is the best
• 8:11
  Speaker 4: two hundred and fifty pounds I've ever spent, you know,
• 8:15
  Speaker 4: just and I wanted that stonma so bad, Like, yeah,
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  Speaker 4: it's not what we are all dreamed of. That the
• 8:23
  Speaker 4: way I was, I just was desperate to have it.
• 8:27
  Speaker 4: And I've had it ever since. And I'm thirty five
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  Speaker 4: now and I've had another baby and touchwood, I'm all good. Yeah,
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  Speaker 4: you know, not everyone ends up having a stoma today
• 8:37
  Speaker 4: with Hirshburuns. But for me and for the kids so far,
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  Speaker 4: we wouldn't be here without it. We needed it.
• 8:44
  Speaker 2: Fantastic. Thank you so much for sharing and on your
• 8:49
  Speaker 2: second pregnancy to talk about something you did on Instagram
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  Speaker 2: which is called the pregnancy Diaries. What made you think, actually,
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  Speaker 2: I really want to share this journey with everybody.
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  Speaker 4: Well, I mean the main thing is, like, that's why
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  Speaker 4: I really admire what you're doing, Because when you type
• 9:09
  Speaker 4: in Stonmas on social media, which is the main reason
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  Speaker 4: why most people do, is because they want to connect
• 9:15
  Speaker 4: with people, don't they They want to in everyday life.
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  Speaker 4: Like I don't know about you, but I don't know
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  Speaker 4: anyone else with hirshbruns that I've ever come into contact
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  Speaker 4: with off of social media. I've never met anyone with
• 9:27
  Speaker 4: it or that has even heard of it. Even so
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  Speaker 4: you go on there, you type it in, you type
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  Speaker 4: in Stonmas and it's flooded with IBD and and some
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  Speaker 4: of my closest friends have IBD and I love them
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  Speaker 4: to death, but they don't have hirshprings. And you just think,
• 9:44
  Speaker 4: you know, like as soon like I hadn't met you
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  Speaker 4: at all, we jumped on this call and straight away
• 9:50
  Speaker 4: the banters. Then I'm like, ah, Tom, yes, you've got
• 9:53
  Speaker 4: the same as me. This is brilliant, right, You're one
• 9:56
  Speaker 4: of my people now. And it's just that sense of
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  Speaker 4: you know, like belonging in it, like you get it.
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  Speaker 4: I don't even have to explain to you. You just
• 10:05
  Speaker 4: get it. And that's why I wanted to share the
• 10:08
  Speaker 4: Prenzy Diaries because there's not much at all on it,
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  Speaker 4: and even more so about having a stonma whilst being
• 10:16
  Speaker 4: pregnant with it, having a baby which is probably going
• 10:20
  Speaker 4: to be born with it. I mean, it's just like
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  Speaker 4: you said, it's a unique situation, so it's never gonna
• 10:26
  Speaker 4: gather a gazillion views. But that's not why I do it.
• 10:29
  Speaker 4: It's because I know there might be one person out
• 10:32
  Speaker 4: there that's feeling like I did, feeling alone, feeling like
• 10:36
  Speaker 4: they don't know anyone that's in the same situation. And
• 10:39
  Speaker 4: I'm sure that's why partly why you do this as well.
• 10:43
  Speaker 4: You just want to help people, don't you because you
• 10:45
  Speaker 4: don't want them to go through what our parents did
• 10:47
  Speaker 4: and what we felt.
• 10:49
  Speaker 2: Exactly Yeah, no, that's exactly right. And I was one
• 10:52
  Speaker 2: of the main reasons I really really wanted you on
• 10:54
  Speaker 2: as a guest because I knew that we'd come at
• 10:56
  Speaker 2: things from the same perspective that we just want to
• 11:00
  Speaker 2: help people, and with you said as well, so you
• 11:05
  Speaker 2: have hirshbrungs a stoma and we're pregnant at the same time,
• 11:10
  Speaker 2: trying to type that into Google and for it to
• 11:12
  Speaker 2: come up with any kind of results that you would
• 11:14
  Speaker 2: want you type in pregnancy with stoma with hirshprungs et cetera,
• 11:19
  Speaker 2: et cetera. I can't imagine you've got very many.
• 11:22
  Speaker 5: Results that were particularly useful.
• 11:27
  Speaker 4: And you know, I'm not going to live in posting
• 11:30
  Speaker 4: this death, but it's important in it. I mean, I
• 11:34
  Speaker 4: don't know about you, but I spend a lot of
• 11:36
  Speaker 4: time in the dark days I think why have I
• 11:40
  Speaker 4: been given this? Why have my two children been given this?
• 11:44
  Speaker 4: What is the reason? And I'm always trying to find reasons.
• 11:49
  Speaker 4: And I'm not saying that's healthy, but that is how
• 11:52
  Speaker 4: my works. And it's a mechanism, isn't it for when
• 11:57
  Speaker 4: things are hard and I just say, think, well, the
• 12:00
  Speaker 4: only thing I can think of that as a negative
• 12:02
  Speaker 4: is that it must be to help people. That must
• 12:06
  Speaker 4: be why. I mean, I have a voice, I have experience.
• 12:10
  Speaker 4: I'm in a unique position. You're the same. Look at
• 12:12
  Speaker 4: what you're doing with this right now. You know you're
• 12:16
  Speaker 4: doing what you can with the tools you've been given
• 12:18
  Speaker 4: to help people. And that's just what I'm trying to
• 12:21
  Speaker 4: do as well. And that's all we can do, isn't it.
• 12:24
  Speaker 3: I think so? I think so.
• 12:26
  Speaker 2: I'm sure you probably get similar messages to me from
• 12:29
  Speaker 2: people I'd usually get at least a couple of weeks
• 12:31
  Speaker 2: from people, even if they just wanted to say, hi,
• 12:34
  Speaker 2: I'm listening to the podcast. You know, i'd thanks for
• 12:37
  Speaker 2: doing it or whatever, or whether they come and say, actually,
• 12:40
  Speaker 2: i've had Hirshbrung's for ages and you know, I'm never
• 12:43
  Speaker 2: going to give medical advice. That's one of the big
• 12:45
  Speaker 2: big things. I'll never I'll never say well, you should
• 12:49
  Speaker 2: do this or you should do that. But it's it's
• 12:51
  Speaker 2: more coming at it from people's experiences. And now I
• 12:56
  Speaker 2: think after today's episode, there'll be twenty three set per
• 13:00
  Speaker 2: Hirshbrum's stories from all over the world, from all walks
• 13:05
  Speaker 2: of life, different jobs, different backgrounds, different stories. And that's
• 13:11
  Speaker 2: really just the whole point, so that hopefully you know
• 13:15
  Speaker 2: somewhere somebody is born with hirshbrungs, or you have a
• 13:19
  Speaker 2: mother with a child with hirshbrungs, they will hopefully know
• 13:23
  Speaker 2: that there is somewhere where you can listen to them.
• 13:26
  Speaker 2: And these are all positive stories as well. They have
• 13:29
  Speaker 2: ups and downs, of course they do. Like all Hirshbrung's journey.
• 13:33
  Speaker 2: I'm not going to do any kind of toxic positivity
• 13:36
  Speaker 2: where we only talk about the nice stuff, and you know,
• 13:39
  Speaker 2: we go through the ups and downs, but generally they
• 13:42
  Speaker 2: are all positive or they have large positives in them,
• 13:47
  Speaker 2: and hopefully people can listen to this and take take
• 13:51
  Speaker 2: what they want out of them.
• 13:52
  Speaker 3: You know where the a lot of them are, you.
• 13:56
  Speaker 2: Know, sporting backgrounds or fitness backgrounds, because that's mainly what
• 13:59
  Speaker 2: I'm in and that's easier for me to talk about,
• 14:03
  Speaker 2: or whether it's medical backgrounds or charity, whatever it might be.
• 14:08
  Speaker 2: I hope people can take take crumbs of comfort from
• 14:12
  Speaker 2: them because I think that that's mainly That's mainly why
• 14:14
  Speaker 2: I set it up. Really but there, but thank you
• 14:18
  Speaker 2: so much for that.
• 14:19
  Speaker 3: But it's yeah, that's.
• 14:21
  Speaker 2: Mainly why why I want to set up because again,
• 14:23
  Speaker 2: as as you said, our mums won't have had a
• 14:26
  Speaker 2: podcast to listen to.
• 14:29
  Speaker 5: I don't think podcasts are around then, No, you need
• 14:33
  Speaker 5: to get mums.
• 14:34
  Speaker 4: Maybe we could do one of these with our mums
• 14:36
  Speaker 4: and then we'll see. Can you imagine them talking about
• 14:39
  Speaker 4: their experience and what they went through. That would be
• 14:42
  Speaker 4: mind blowing, like for them to you know, talk that
• 14:46
  Speaker 4: through because I wonder, like I don't. I don't think
• 14:49
  Speaker 4: my NUM's ever spoken out about what she went through
• 14:51
  Speaker 4: with me as a baby with hershprings all those years
• 14:53
  Speaker 4: ago as yours.
• 14:55
  Speaker 3: No.
• 14:56
  Speaker 2: Never obviously speak to her a lot because of the podcast,
• 14:59
  Speaker 2: and she she has been fantastic with providing me with
• 15:04
  Speaker 2: my stories that I've shared on Instagram. Just done part
• 15:07
  Speaker 2: two which is mainly from sort of ninety years old onwards,
• 15:11
  Speaker 2: and part one was on there before. But it's been
• 15:15
  Speaker 2: fantastic with that. I'm sure she'd like to come on
• 15:17
  Speaker 2: as a guest, But at the moment, I'm I've got
• 15:20
  Speaker 2: loads of guests. One I need to just stop radimly
• 15:28
  Speaker 2: messaging a lot of people and then and then maybe
• 15:31
  Speaker 2: I'll run out a guess.
• 15:32
  Speaker 3: But at the moment I love it.
• 15:33
  Speaker 2: It's no, I've got plenty. So yeah, but no, I'm
• 15:38
  Speaker 2: sure she will be on at some point. I'm not
• 15:41
  Speaker 2: sure she's terribly keen to come on. She listens to
• 15:43
  Speaker 2: every episode, so I know she will listen to this.
• 15:46
  Speaker 2: What did Nicola?
• 15:48
  Speaker 4: Nicola? You need to the people want it?
• 15:52
  Speaker 2: There you go, Rachel has spoken therefore you know it
• 15:56
  Speaker 2: should happen. But she listens to every episode, So thank
• 16:01
  Speaker 2: you very much, Bump for providing all of this information
• 16:05
  Speaker 2: actually that I come with. But yes, she listens to
• 16:08
  Speaker 2: all of mine. She listened to all of my brother's
• 16:09
  Speaker 2: podcasts as well, because he started before I did, and
• 16:13
  Speaker 2: his is about diabetes. So yeah, we've got we've got
• 16:16
  Speaker 2: medicine cordered at our family.
• 16:18
  Speaker 4: Yeah, well the feeling, but.
• 16:24
  Speaker 2: We've got the sidetrack back to you, back to you. Sorry,
• 16:27
  Speaker 2: I got sidetracked. Fine, But so you talked a little
• 16:35
  Speaker 2: bit about having your stoma, and did you have a
• 16:40
  Speaker 2: stona reversal as well?
• 16:42
  Speaker 4: Yeah, and so I had a reversion I was two
• 16:44
  Speaker 4: and a half and then I had another one when
• 16:47
  Speaker 4: I was thirty at the start of lockdown. But then
• 16:50
  Speaker 4: it didn't go very well. So I think the amount
• 16:53
  Speaker 4: of surgeries I had as a kid the scar tissue
• 16:56
  Speaker 4: affected its placement and how well it would hold up.
• 16:58
  Speaker 4: So I actually had to have refashioned five weeks after
• 17:03
  Speaker 4: and so yeah, this one is technically number three. And
• 17:08
  Speaker 4: but yeah, so touch wood, I mean, pregnancy second time
• 17:12
  Speaker 4: round was good. Afterwards, I've had no end of problems.
• 17:15
  Speaker 4: It took me four months to stop having leaks multiple
• 17:19
  Speaker 4: times a day. Just where your skin is stretched so
• 17:22
  Speaker 4: much and then it shrinks back and the pH of
• 17:25
  Speaker 4: his skin changes, so the way it reacts to adhesives
• 17:28
  Speaker 4: and the bags themselves. It's a minefield. And again you
• 17:33
  Speaker 4: type all this in and not much comes up, especially
• 17:37
  Speaker 4: not with pregnancy. And I see like a few people
• 17:40
  Speaker 4: and I hate the word influencers, but you know you
• 17:43
  Speaker 4: see influence stonas and stuff, and like they've sprung back.
• 17:48
  Speaker 4: You know, they looked like they swallowed a grape and
• 17:50
  Speaker 4: had a baby and sprung back and their back is
• 17:52
  Speaker 4: perfectly placed and they're having no issues. And I think, well,
• 17:54
  Speaker 4: that's not me. I can't that. You know, it's great
• 17:58
  Speaker 4: for them, and that's the ask this story, and I
• 18:01
  Speaker 4: wish that was mine, but it wasn't. And I couldn't
• 18:04
  Speaker 4: see anyone like me on there again, which is why
• 18:08
  Speaker 4: I share. Like I'm not the type of person to
• 18:10
  Speaker 4: stand there in a bikini or in lingerie and you know, say,
• 18:16
  Speaker 4: you know this is me. That's not comfortable for me.
• 18:20
  Speaker 4: But I also know that it was important to share
• 18:22
  Speaker 4: stuff because I couldn't find anything else like it. And
• 18:27
  Speaker 4: there were several people I know that were pregnant at
• 18:29
  Speaker 4: the same time that were having real bad issues postpartum
• 18:32
  Speaker 4: with this s domas and when you've got a baby,
• 18:36
  Speaker 4: whether your first time them or not. You don't, you know,
• 18:38
  Speaker 4: it's it's hard to find the time to you know,
• 18:42
  Speaker 4: just survive, let alone be looking at things and finding
• 18:46
  Speaker 4: people and reaching out and connecting people. So I thought,
• 18:48
  Speaker 4: right when I can, I'm going to put things out there.
• 18:51
  Speaker 4: So that's what I did.
• 18:53
  Speaker 2: Yeah, And that's what I really love about your Instagram
• 18:56
  Speaker 2: as well, is it's so real and raw and really
• 19:01
  Speaker 2: informative as well. So I mean you talk a lot
• 19:05
  Speaker 2: about certainly the products that you use and what could
• 19:10
  Speaker 2: do for this and what you could do for that,
• 19:12
  Speaker 2: especially for stoners, and and that's what I mean. That's
• 19:15
  Speaker 2: where I first found you on on Instagram. And I
• 19:17
  Speaker 2: just love the fact that it it wasn't like I
• 19:23
  Speaker 2: say this, I like overly polished. If you see what
• 19:25
  Speaker 2: I mean. It was properly real.
• 19:27
  Speaker 4: Oh it's not no, no, yes, say it now it is, Tom,
• 19:29
  Speaker 4: it is. It's not.
• 19:30
  Speaker 3: Sorry. I didn't want to.
• 19:31
  Speaker 5: I don't want to sound defensive, but like I don't
• 19:36
  Speaker 5: like it was.
• 19:38
  Speaker 3: It was real. It was like this is happening and.
• 19:40
  Speaker 4: This, And I love that there's no filters put it
• 19:43
  Speaker 4: that way. I haven't got time to swipe to find
• 19:47
  Speaker 4: the filter that makes me look as young as possible,
• 19:50
  Speaker 4: with no bags under my eyes put it that way.
• 19:52
  Speaker 4: But it's it's like, I mean, there's a lot of
• 19:55
  Speaker 4: people at the moment that are out promoting product, isn't
• 19:58
  Speaker 4: there And you know, I work with Pelican and respond,
• 20:02
  Speaker 4: but I was doing stuff writing blogs and doing posts
• 20:06
  Speaker 4: recommending them the years before they even asked me to
• 20:10
  Speaker 4: be an ambassador, and a few of us that started
• 20:13
  Speaker 4: off before you're officially asked, and things like that. You know,
• 20:18
  Speaker 4: I think you can see that our stuff is real
• 20:22
  Speaker 4: and it's raw, and we're coming from you know, we're
• 20:26
  Speaker 4: coming from a good place. And I'll always endorse things
• 20:30
  Speaker 4: that I use that works, like for instance, I you know,
• 20:34
  Speaker 4: I use Pelican bags, but my boys don't. And I'm
• 20:39
  Speaker 4: very transparent about that. It's not about you know, what
• 20:42
  Speaker 4: brands you like and what looks the best, it's what
• 20:44
  Speaker 4: works for you, you know, like those of you with a bag,
• 20:48
  Speaker 4: you might have a bag by someone, a spray by another,
• 20:51
  Speaker 4: and a seal by another, and you know that's okay.
• 20:53
  Speaker 4: You need to use what's right for your body, not
• 20:57
  Speaker 4: what's the end thing, if you know, it's that. I
• 21:00
  Speaker 4: could talk about all that for hours, but you know,
• 21:03
  Speaker 4: that's not why.
• 21:03
  Speaker 2: We're Oh, we could definitely touch on that because you
• 21:07
  Speaker 2: mentioned you do. You are an ambassador of Pelican and
• 21:12
  Speaker 2: Respond Limited as well, and you also work as an
• 21:16
  Speaker 2: ambassador for Noah's Ark charity as well. How did obviously
• 21:22
  Speaker 2: you were promoting the products, certainly Pelican and Respond products.
• 21:27
  Speaker 2: How did that sort of all come about? Were you
• 21:30
  Speaker 2: just promoting and then one day they send you a
• 21:32
  Speaker 2: message and say I'm aboard?
• 21:35
  Speaker 4: Yes? So I so I was. I had my own
• 21:39
  Speaker 4: word press website going where I started blogging about being
• 21:44
  Speaker 4: a parent. So I had my eldest. He was really
• 21:48
  Speaker 4: poorly when he was born. The surgeon that he had
• 21:51
  Speaker 4: at the time was retiring. He shouldn't have been practicing.
• 21:54
  Speaker 4: He made a few mistakes and my kids suffered for it,
• 21:59
  Speaker 4: and he wasn't at all. And I just felt like
• 22:03
  Speaker 4: I was living life in and out of hospital. The
• 22:05
  Speaker 4: longest stint was twelve weeks solid living in therebias hospital bed,
• 22:10
  Speaker 4: and it was a very lonely place. And I thought, right,
• 22:14
  Speaker 4: I need some outlet, I need to do something. So
• 22:17
  Speaker 4: I just started blogging and I was putting it out there.
• 22:22
  Speaker 4: I started my Instagram page. I was just putting it
• 22:24
  Speaker 4: out there and not expecting anything, and then you know,
• 22:28
  Speaker 4: like you said, start getting messages from people then saying oh,
• 22:31
  Speaker 4: you know, because I find the parents like parents when
• 22:35
  Speaker 4: it comes to their children, they don't want to shout
• 22:39
  Speaker 4: out from the rooftop about it. I find nine times
• 22:43
  Speaker 4: out of ten they connect with me through direct message
• 22:46
  Speaker 4: and they don't comment on my posts. And I was
• 22:49
  Speaker 4: the same because you know, I don't you know, I
• 22:51
  Speaker 4: don't show the kids' faces, for instance, because I'm quite
• 22:55
  Speaker 4: protective in that way, and I would you know, I
• 22:58
  Speaker 4: back then, I wouldn't have shit anything to personal or whatever.
• 23:02
  Speaker 4: But I know people do and that's fine, but I
• 23:05
  Speaker 4: didn't feel comfortable doing that. And yeah, it just kind
• 23:10
  Speaker 4: of evolved, really because when I found when you have
• 23:13
  Speaker 4: a baby with a stonma, the stonma changes so quickly
• 23:16
  Speaker 4: because the growth is so rapid. Products and their needs
• 23:20
  Speaker 4: change all the time, So you might have a bag
• 23:23
  Speaker 4: that suits them for the first few months, you'll start
• 23:26
  Speaker 4: getting leaks. You're trying to find another option. You start
• 23:29
  Speaker 4: getting leaks, you're looking at seals. You start you know,
• 23:32
  Speaker 4: it's constant, it's relentless, and then they start weaning. That
• 23:37
  Speaker 4: changes things. That changes the output. I mean, there's so
• 23:41
  Speaker 4: many things that you don't have to consider as an
• 23:44
  Speaker 4: adult with a stonema that you have to with a
• 23:47
  Speaker 4: newborn and children. And so when I found things that worked,
• 23:51
  Speaker 4: I'd share them because i'd you know, i'd want people
• 23:54
  Speaker 4: to know about them, Like our muttons. I keep talking
• 23:56
  Speaker 4: about our muttons. God, but they won't have im never
• 24:00
  Speaker 4: would have known that there were other options. She never
• 24:03
  Speaker 4: would have known, Oh well, it doesn't matter what bag
• 24:07
  Speaker 4: I use. Maybe I could try a seal. You know,
• 24:09
  Speaker 4: it wouldn't have been possible, would it.
• 24:12
  Speaker 2: No, No, it was just you use.
• 24:15
  Speaker 3: This and that's that.
• 24:16
  Speaker 4: Yeah, you get on with it. And you know that
• 24:19
  Speaker 4: kind of generation wouldn't have been the type to, you know,
• 24:23
  Speaker 4: be like on the phone going, oh, you know, my
• 24:25
  Speaker 4: mum wouldn't have wanted to complain. I know, she's the
• 24:27
  Speaker 4: type of person that would have been like, Okay, I'll
• 24:29
  Speaker 4: just carry on it. It'll be fine. Whereas now as soon
• 24:32
  Speaker 4: as something's not right, I'm on the phone, I'm emailing,
• 24:36
  Speaker 4: and I'm the message of people going if you experienced this.
• 24:39
  Speaker 4: But that's where we're in a privileged position that we've
• 24:42
  Speaker 4: got this technology at our fingertips that you know, if
• 24:45
  Speaker 4: I'm out about and I suddenly think, oh I need
• 24:48
  Speaker 4: to add something to the baby's order, I can just
• 24:51
  Speaker 4: ping a message within seconds. I mean, how lucky are
• 24:56
  Speaker 4: we that we can do that?
• 24:57
  Speaker 2: Yeah, couldn't do that in the nineties, Nope, but yeah phones, no, no,
• 25:07
  Speaker 2: it is what we are. And I think it's really
• 25:10
  Speaker 2: good that we both use our sort of platform for
• 25:15
  Speaker 2: good and for helping people. I think that's sort of
• 25:17
  Speaker 2: our responsibility as such, to make sure that you know
• 25:23
  Speaker 2: that people who are going through this, of which there
• 25:26
  Speaker 2: are more than I realized. Certainly when I started this,
• 25:31
  Speaker 2: I thought, I'll try and to show every two weeks
• 25:35
  Speaker 2: and I'll see if I can find some Hirshprung's people.
• 25:39
  Speaker 2: And the amount of people I've found has just just
• 25:42
  Speaker 2: been enormous, way more than I ever thought would be
• 25:46
  Speaker 2: would be possible. So I think that help is really
• 25:51
  Speaker 2: really important, even if it's just sharing stories, even if
• 25:54
  Speaker 2: it's just you know, sharing all this product works for me,
• 25:57
  Speaker 2: and you know, maybe you should try whatever. Not necessarily
• 26:01
  Speaker 2: handing out medical advice, but yeah, but just just having that,
• 26:05
  Speaker 2: as you mentioned before, that sense of community, I think
• 26:08
  Speaker 2: it's just really really important. I'd love to as well
• 26:12
  Speaker 2: talk about your ambassadorial ship with the Noah's ARP charity
• 26:17
  Speaker 2: as well. In the summer, you had a superhero.
• 26:22
  Speaker 5: Run in June's talk a little bit about that ah
• 26:26
  Speaker 5: other than.
• 26:30
  Speaker 3: Why the boy stumbled in, because.
• 26:35
  Speaker 4: We stupidly thought the baby would love to be part
• 26:38
  Speaker 4: of it, and we thought he would really sweetly be
• 26:43
  Speaker 4: in the buggy looking cute in his little whole coutfit
• 26:47
  Speaker 4: while the eight year old's running along and my partner
• 26:50
  Speaker 4: Loop's running along and I'm there with a buggy, and
• 26:53
  Speaker 4: we were like, oh, it's going to be a lovely
• 26:54
  Speaker 4: day out. We're going to raise money, we're going to
• 26:56
  Speaker 4: raise awareness. This is great. Cue the baby the whole time,
• 27:01
  Speaker 4: and me and Luke tag team in carrying him. And
• 27:04
  Speaker 4: this baby, I mean he he is a very good size,
• 27:09
  Speaker 4: let's put it that way. He's on the ninety eight percentile,
• 27:12
  Speaker 4: which if you talk that lingo in terms of babies,
• 27:16
  Speaker 4: he's he's a good size. I mean he's nineteen like hounds,
• 27:20
  Speaker 4: so he's yeah, I mean, trying to keep up with
• 27:23
  Speaker 4: an eight year old wanting to run a super dash.
• 27:26
  Speaker 4: You know the word super dash. You know you can't
• 27:28
  Speaker 4: be walking with this baby and we're like dying look
• 27:32
  Speaker 4: at each other going it was yeah, I mean less day,
• 27:37
  Speaker 4: but well yeah it was. What does that hard work?
• 27:41
  Speaker 4: It's not all glamorous, see Tom, you know, but I
• 27:46
  Speaker 4: didn't paint its glamorous. I will always say when it,
• 27:49
  Speaker 4: you know, doesn't quite go to plan. But yes I
• 27:53
  Speaker 4: did it.
• 27:54
  Speaker 5: But was it in terms of the charity itself a success?
• 27:58
  Speaker 4: Yeah it would. They add a really good to I
• 28:00
  Speaker 4: was the best turn out they've ever had and they
• 28:02
  Speaker 4: do it every year. So it's in a big park
• 28:05
  Speaker 4: in Cardiff and loads of families just come together for
• 28:09
  Speaker 4: the day. They do their you know, you can walk it,
• 28:12
  Speaker 4: run it whatever, and it's just a really nice event.
• 28:15
  Speaker 4: So the Noah's Ark is the charity that supports the
• 28:20
  Speaker 4: children's hospital financially in Cardiff, so they fund equipment, resources,
• 28:26
  Speaker 4: play specialists to distract the kids when they're having medical
• 28:29
  Speaker 4: intervention and without them, they you know, the kids wouldn't
• 28:34
  Speaker 4: be where they are today. So they very kindly asked
• 28:37
  Speaker 4: me to be an ambassador when my eldest was about
• 28:40
  Speaker 4: maybe one or two. And then yeah, my partner now Luke,
• 28:45
  Speaker 4: he's just been major as well. So whenever we can,
• 28:48
  Speaker 4: we'll do We'll you know, volunteer our time. So we've
• 28:52
  Speaker 4: done like coin bucket collections and stood on stalls and
• 28:57
  Speaker 4: you know, promoted the charity and that and events with
• 29:00
  Speaker 4: the kids. So yeah, I would say like, if anyone
• 29:04
  Speaker 4: has children that are poorly or even as adults, and
• 29:07
  Speaker 4: your hospital runs events like that, it's actually a really
• 29:10
  Speaker 4: good way of connecting with people that might have had
• 29:13
  Speaker 4: similar experiences to you. I met a boy who was
• 29:17
  Speaker 4: nineteen with a stoner at the last one, and he
• 29:20
  Speaker 4: gave me so much advice for my boys growing it.
• 29:24
  Speaker 4: And if I hadn't have gone to that event, I
• 29:27
  Speaker 4: never would have met him, never would have met him,
• 29:30
  Speaker 4: and that was invaluable. And it's little connections like that
• 29:34
  Speaker 4: that can be just worth their weight in gold at
• 29:36
  Speaker 4: these events. So I would really encourage people to do them.
• 29:40
  Speaker 2: Absolutely, No, that's fantastic. I echo that as well. I mean,
• 29:45
  Speaker 2: he never knows who you might run into and who
• 29:48
  Speaker 2: might give you I've found it doing this podcast. I mean,
• 29:51
  Speaker 2: the things I've learned through just talking to people about
• 29:56
  Speaker 2: their experiences has just been completely mind because I'll be honest,
• 30:01
  Speaker 2: starting this podcast, I didn't know a lot about my condition.
• 30:05
  Speaker 2: I mean, I've had it for thirty years, but I
• 30:08
  Speaker 2: didn't know knowing now, I didn't know anything really about
• 30:13
  Speaker 2: hirshbrungs and just finding finding people and finding people to
• 30:18
  Speaker 2: talk to that can share incredible informations, but just little
• 30:23
  Speaker 2: nuggets of things that you think, oh, I didn't know that,
• 30:26
  Speaker 2: or I didn't know that, and I think that's that's fantastic.
• 30:29
  Speaker 2: Have you found this sort of working with Pelican and
• 30:32
  Speaker 2: respond as well that you found people, oh you similar things.
• 30:37
  Speaker 4: Yeah, so as far I'm the only person that works
• 30:41
  Speaker 4: with both of them that has hirshbrung So initially it
• 30:44
  Speaker 4: was a bit of imposter syndrome, like, oh, I'm meant
• 30:47
  Speaker 4: to be here kind of thing, But then when you
• 30:50
  Speaker 4: sit down and speak with these people, you realize that it,
• 30:54
  Speaker 4: you know, having that one common entity in the stoma.
• 30:58
  Speaker 4: A lot of these conditions overlap in terms of symptoms,
• 31:01
  Speaker 4: the way it affects your everyday life and the mental challenges,
• 31:06
  Speaker 4: and you know they're you know, like that. So my
• 31:10
  Speaker 4: one good friend Pitt, if I hadn't been friends of her,
• 31:13
  Speaker 4: I never would have, you know, met my partner Luke,
• 31:17
  Speaker 4: and we wouldn't have a baby. Now, like you know,
• 31:20
  Speaker 4: it's just yeah, it's yeah. The friends I've made are
• 31:24
  Speaker 4: friends for life, definitely. And when you're with these people
• 31:28
  Speaker 4: and spend time in their company, like I always say it,
• 31:32
  Speaker 4: like it heals me a little bit each time, because
• 31:36
  Speaker 4: then when you go back to your reality, you know,
• 31:39
  Speaker 4: like your family and your friends, you can have the
• 31:41
  Speaker 4: most supportive, wonderful people, but it's never gonna be quite
• 31:45
  Speaker 4: the same. And as people who just get it, like
• 31:49
  Speaker 4: I don't know, like, how do you feel after these
• 31:51
  Speaker 4: episodes when you're speaking to people, like what had you
• 31:55
  Speaker 4: come away feeling mind blown?
• 31:58
  Speaker 3: Most of the time?
• 31:59
  Speaker 2: Honest the people I talked to and sharing things and
• 32:05
  Speaker 2: I have obviously, I have my notes and I do
• 32:07
  Speaker 2: my research and everything, so I'm prepared as possible. But
• 32:12
  Speaker 2: what I love is those sort of off the off
• 32:15
  Speaker 2: the cuff type comments when people say, oh, this happened
• 32:19
  Speaker 2: to me, and I did this or this that the other,
• 32:22
  Speaker 2: And honestly, for every person I've interviewed, I've learnt something
• 32:28
  Speaker 2: and I just I love that, Like, I mean, yeah,
• 32:31
  Speaker 2: knowledge is power and et cetera, et cetera, But I
• 32:35
  Speaker 2: just I'm really glad I started it. I mean, I'll
• 32:38
  Speaker 2: put it that way. I had no idea. I mean,
• 32:41
  Speaker 2: forty episodes, I didn't think i'd get to ten. No,
• 32:44
  Speaker 2: I'm from forty and not all of them are hirshprunks.
• 32:49
  Speaker 2: And I have spoken to a few people about that
• 32:52
  Speaker 2: and people saying, well, it could just be hirshprungs, and
• 32:55
  Speaker 2: it could.
• 32:55
  Speaker 3: Just be this.
• 32:56
  Speaker 2: But what I would say is that there are people
• 33:00
  Speaker 2: with ibd ibs, and yes they're not the same as hirshprungs,
• 33:04
  Speaker 2: but there's a lot of common symptoms around those particular
• 33:09
  Speaker 2: realnesses chrohnes as well collitis or serrated colliitis, and the
• 33:15
  Speaker 2: way they deal with things are often very similar to
• 33:17
  Speaker 2: the way I deal with things. So even though no,
• 33:20
  Speaker 2: it's not the same, and yes, I could do an
• 33:23
  Speaker 2: entirely Hirshprungs led podcast, but I don't think I would
• 33:28
  Speaker 2: learn as much, and I think they have been really beneficial.
• 33:32
  Speaker 2: There is still I mean, after this podcast goes out,
• 33:36
  Speaker 2: it will be twenty three Hirshprungs episodes and seventy bred. Well,
• 33:41
  Speaker 2: it's seventeen non hirshprungs, so it's it's I think I
• 33:45
  Speaker 2: calculated the other day it's about sixty percent. Give or take,
• 33:47
  Speaker 2: and it stays usually stays in and around there. But no,
• 33:52
  Speaker 2: I mean I've I've loved it and I've loved just
• 33:54
  Speaker 2: trying to because what I wanted to do as well
• 33:57
  Speaker 2: is just try and have a central play where you
• 34:01
  Speaker 2: can have a lot of Hirshprung stories. I know there
• 34:04
  Speaker 2: are websites out there that have i mean reaches one
• 34:08
  Speaker 2: where they've got I think eight Hirshprung stories on there.
• 34:13
  Speaker 4: At the moment, though, is it still is yeah, like yeah.
• 34:21
  Speaker 2: Mad, but no, yeah, I mean there's i haven't got
• 34:25
  Speaker 2: mine on there, and I'm an ambassador.
• 34:28
  Speaker 4: Oh that I think we need to update the website
• 34:32
  Speaker 4: to all these people and celebrities and start chasing Tom.
• 34:37
  Speaker 2: Well once again, the celebrities out of the way, all these
• 34:41
  Speaker 2: A listers Lasard. No, I've I've loved it, absolutely loved, loved, loved,
• 34:49
  Speaker 2: loved having and it's it's just led me to meet
• 34:52
  Speaker 2: so many wonderful people. I think that's the other thing. Yes,
• 34:55
  Speaker 2: we all have Hirshbruns and what have you, but everybody's unique. Yeah,
• 35:00
  Speaker 2: and that's what I love. You know, nobody's come on
• 35:02
  Speaker 2: and gone, well, I've got hirsch Brun's brilliant end of podcast.
• 35:05
  Speaker 2: You know, it's just like, well, I've had this and
• 35:08
  Speaker 2: then I had this particular procedure in that particular procedure
• 35:11
  Speaker 2: in and what have you. But yeah, no, I love it.
• 35:16
  Speaker 2: And another question I have which I've been asking to
• 35:19
  Speaker 2: a lot of guests recently, and I'd love to ask
• 35:23
  Speaker 2: it to you, because when I had my stone, I
• 35:27
  Speaker 2: had something called a tegadem that went.
• 35:31
  Speaker 4: I wrote that on I So I proper stalked you
• 35:35
  Speaker 4: the other day when you were eachedect to me again
• 35:38
  Speaker 4: and a shamelessly and yeah, I read about that. No
• 35:42
  Speaker 4: I haven't gone, we can't. You need to educate me.
• 35:45
  Speaker 1: Go on.
• 35:47
  Speaker 2: Nobody's heard of it this again when you're nine when
• 35:51
  Speaker 2: I had this duck. So I had a stona when
• 35:54
  Speaker 2: I was born, then had it reversed, then had another
• 35:56
  Speaker 2: stone when I was nine, and then reversed at twenty three.
• 36:01
  Speaker 2: But when I was nine, they I had what was
• 36:06
  Speaker 2: called a stopper. So if anybody hasn't seen this story
• 36:09
  Speaker 2: is now up on my Instagram. I've done a part
• 36:11
  Speaker 2: two which is kind of from me from nine years
• 36:14
  Speaker 2: of age onwards. So I had a stopper invention and
• 36:19
  Speaker 2: which basically kept the stoma open for bow washouts. So
• 36:25
  Speaker 2: if I didn't have like a stopper or something, then
• 36:27
  Speaker 2: there was a then it might have closed up or whatever,
• 36:31
  Speaker 2: and then pushing the the cathter through would have been trickier.
• 36:35
  Speaker 2: And the tagaderm was there to place over the stopper
• 36:39
  Speaker 2: to then try and keep it in place, but it
• 36:42
  Speaker 2: never worked, so the stopper would just always hang out
• 36:46
  Speaker 2: and then I'd end up finding it all over living
• 36:48
  Speaker 2: room floors and oh so so but I kept the tagaderms,
• 36:54
  Speaker 2: so the tegaderm.
• 36:55
  Speaker 3: Went over the the.
• 36:56
  Speaker 2: Sort of open stoma to sort of stop leaks and
• 37:03
  Speaker 2: to basically keep it like away from infection because it
• 37:06
  Speaker 2: is effectively an open wound.
• 37:08
  Speaker 4: So you had a bag one though as well.
• 37:11
  Speaker 2: No, that that's the thing. That's the thing. I never
• 37:15
  Speaker 2: had a bag. So everybody I've ever spoken to with
• 37:17
  Speaker 2: a stone mark has a bag. I didn't because mine
• 37:23
  Speaker 2: was an ace malone stone. Oh right, okay, so yeah,
• 37:29
  Speaker 2: so everything was still functioning. Yeah nine was an ace
• 37:34
  Speaker 2: malone stone. But I haven't met anybody else with an
• 37:37
  Speaker 2: a S malone stone.
• 37:38
  Speaker 4: Gosh, so you're even rarer than the one of five
• 37:41
  Speaker 4: thousand then whack cool you need to be we are
• 37:46
  Speaker 4: a bit rare. Yeah, bothas Wow, that's amazing. Well, if
• 37:51
  Speaker 4: you keep doing this, you must maybe one day you'll
• 37:54
  Speaker 4: find someone else that I'd saying.
• 37:56
  Speaker 2: I think when I get to episode one hundred, if
• 37:58
  Speaker 2: I haven't found it, when I'll just give up.
• 38:00
  Speaker 4: Then you need to call the Book of Records?
• 38:03
  Speaker 1: What is it?
• 38:03
  Speaker 4: Book of Yeah, you need to bring them people, and
• 38:05
  Speaker 4: you need to say I need a record lease.
• 38:08
  Speaker 2: Thanks, Yes, most.
• 38:09
  Speaker 3: Definitely, most definitely.
• 38:12
  Speaker 2: I would like to touch on as well, because I'm
• 38:14
  Speaker 2: well aware I'm running out of time. It's just gone
• 38:17
  Speaker 2: so quickly. Your instructional videos as well on Instagram I've
• 38:22
  Speaker 2: seen I know you did posted one was it today
• 38:24
  Speaker 2: or yesterday? About supplies I think for school m and
• 38:31
  Speaker 2: you've done quite a few of them in what to
• 38:33
  Speaker 2: pack and what to do? And have those just come
• 38:36
  Speaker 2: from ideas for you or have they come from people
• 38:38
  Speaker 2: asking you to do them?
• 38:40
  Speaker 4: And a bit of both, But I again, it's more
• 38:44
  Speaker 4: of for me. I like a lot of things, a
• 38:47
  Speaker 4: trial and error when it's new to you, and I think, well,
• 38:51
  Speaker 4: I could be saving someone time and I could be
• 38:54
  Speaker 4: you know, And also I'm quite a visual person. So
• 38:57
  Speaker 4: if I read something of what to do, yeah, that's great,
• 39:01
  Speaker 4: but it also is valuable to me when I actually
• 39:05
  Speaker 4: see something as well. So like for my son for
• 39:09
  Speaker 4: his TA in his class, I've done a step by
• 39:12
  Speaker 4: step guide and I talked about that in my video
• 39:14
  Speaker 4: today and I put stills of each step, what it
• 39:18
  Speaker 4: should look like, what they should be doing. I've recorded
• 39:21
  Speaker 4: a video that they can have as well. So yeah,
• 39:25
  Speaker 4: I just like to do it in all different medias
• 39:28
  Speaker 4: so that you know, and like, so, for instance, a
• 39:31
  Speaker 4: family member who unfortunately got cancer and it affected their bowels,
• 39:36
  Speaker 4: they had to have a stoma, and I just did
• 39:40
  Speaker 4: loads of recording and I did like a four a
• 39:44
  Speaker 4: four page sheet like it's almost like a dummy's guide
• 39:48
  Speaker 4: to stoma life. And I just typed out everything and
• 39:52
  Speaker 4: anything that could possibly happen, how to what to do,
• 39:55
  Speaker 4: what whatever. And I just think, again, I just feel
• 39:58
  Speaker 4: like I know that's in me, and I just want
• 40:01
  Speaker 4: to put it out there because you know, I like
• 40:04
  Speaker 4: that video. I don't know how well it's done. It's
• 40:08
  Speaker 4: probably not done well at all. I'll be honest, it
• 40:10
  Speaker 4: won't have because it won't really relate to many people
• 40:12
  Speaker 4: at all but then I had a message today from
• 40:14
  Speaker 4: a mum who said she's got a four month for
• 40:16
  Speaker 4: baby of a stoma, and she thanked me for my
• 40:20
  Speaker 4: videos and she said some really lovely things and I
• 40:24
  Speaker 4: thought that, not that I needed it, but that's why
• 40:26
  Speaker 4: I do it. And you know, that'll be there and
• 40:30
  Speaker 4: if people want somebody to go to for stuff like that,
• 40:33
  Speaker 4: it's always there. Yeah, and yeah, I love it.
• 40:38
  Speaker 2: I love that kind of stuff. And in terms of views,
• 40:42
  Speaker 2: it's got way more than anything I post.
• 40:44
  Speaker 3: So it's if.
• 40:48
  Speaker 4: I get those types of numbers, I'm but we just
• 40:52
  Speaker 4: need to start wearing bikinis. That's all there is. That's
• 40:56
  Speaker 4: what the people want.
• 40:57
  Speaker 5: Unfortunately, I think you're on your own. I'm not doing
• 41:02
  Speaker 5: in you.
• 41:06
  Speaker 2: Oh dear, Yeah, I think I think I've lost the
• 41:08
  Speaker 2: plot where that day comes.
• 41:13
  Speaker 4: Good.
• 41:13
  Speaker 5: Sorry, I don't know.
• 41:15
  Speaker 4: Yeah, I've probably taken this podcast to a dark place.
• 41:18
  Speaker 4: You need to turn it around now for the end.
• 41:20
  Speaker 3: We will, we will, we will do a U turn.
• 41:22
  Speaker 4: Do you want to leave the listeners with that mental.
• 41:24
  Speaker 3: No, no, we won't.
• 41:25
  Speaker 2: I will quickly put the hairbrake on and quickly you
• 41:30
  Speaker 2: turn it into your hirshbrungs. Beginning of Hirshbrugs video, which
• 41:37
  Speaker 2: I loved as well. I thought was fantastic your explanation
• 41:40
  Speaker 2: of Hirshbrugs, which really should have been my first episode.
• 41:45
  Speaker 2: So if I could just re record that as you
• 41:48
  Speaker 2: and then re record it first episode, that would be
• 41:51
  Speaker 2: so much better than me rambling on for eight minutes
• 41:53
  Speaker 2: forty three seconds and saying, not a lot it is.
• 41:57
  Speaker 4: But this so much to it isn't there like it's
• 42:00
  Speaker 4: not It's quite complex, and I find it difficult to
• 42:04
  Speaker 4: talk about, to be honest, Like when people say what
• 42:06
  Speaker 4: is it? I think, right, ganglion, cells, stonemas, wash out,
• 42:10
  Speaker 4: racked or biops. You know, there's so many things that
• 42:14
  Speaker 4: go through your head and this of all do you
• 42:16
  Speaker 4: find most people can't say hirshbrums And then and then
• 42:22
  Speaker 4: when people can say it, they're like, how do you
• 42:24
  Speaker 4: spell it? And that's people in the medical world, you know, It's.
• 42:29
  Speaker 3: Yeah, yeah.
• 42:30
  Speaker 2: For the where people might also hear this is on
• 42:34
  Speaker 2: UK Health Radio, which who else I work for, And
• 42:38
  Speaker 2: the person who who runs that said to me, no idea,
• 42:41
  Speaker 2: what that is? Is it Danish?
• 42:44
  Speaker 3: I know? He said, is it German?
• 42:46
  Speaker 2: And it's Danish?
• 42:48
  Speaker 7: Turning in his grave right if he words he words,
• 42:52
  Speaker 7: but yeah, he said, is it German? I would no,
• 42:54
  Speaker 7: Danish close, but yes so. But people, even people in
• 42:58
  Speaker 7: the medical field, as you said, heard of it. Yeah,
• 43:01
  Speaker 7: they don't know what it is. So it's it's down
• 43:04
  Speaker 7: to you and I I'm afraid, oh.
• 43:06
  Speaker 4: Gos Okay, Well that's a challenge we all have to
• 43:09
  Speaker 4: affect till the day we die.
• 43:14
  Speaker 2: But thank you, thank you ever so much for coming
• 43:18
  Speaker 2: on tonight. It's been it's been an absolute pleasure. And
• 43:23
  Speaker 2: just finally as well, because I know you've done several
• 43:28
  Speaker 2: podcast episodes of something called Beyond the Pouch. Would you
• 43:32
  Speaker 2: like to just very quickly.
• 43:34
  Speaker 4: Yeah, yeah, so my friend and my friend, my friend
• 43:38
  Speaker 4: Louise and I we interview people similar to what you do,
• 43:43
  Speaker 4: but it's osterme related. So it is with eating healthcare
• 43:49
  Speaker 4: and yeah, we just have people on that. It's the
• 43:51
  Speaker 4: same philosophy as you, sharing their stories and just connecting
• 43:57
  Speaker 4: people and yeah, like just the way you say what
• 44:00
  Speaker 4: you get out of it, it's the same for me.
• 44:02
  Speaker 4: I mean, I mean I love a chat. You seem
• 44:06
  Speaker 4: to love a chat, and when it's about something you're
• 44:08
  Speaker 4: passionate about and you connect with new people and they
• 44:11
  Speaker 4: have the same thoughts and feelings. It's magic can happen.
• 44:16
  Speaker 4: And yeah, it's I love it, love it, love it.
• 44:20
  Speaker 2: I think, I think it's fantastic. And it's on YouTube
• 44:23
  Speaker 2: as well. Where else can people find it?
• 44:26
  Speaker 4: So Spotify and yeah YouTube for all my sins, So yeah,
• 44:31
  Speaker 4: it's it is on there, but yeah, maybe go on
• 44:35
  Speaker 4: Spotify first and then mentally prepare yourself.
• 44:40
  Speaker 2: No, I watched the full video version today actually, and.
• 44:45
  Speaker 4: I've started it. You'll so the like people if the
• 44:48
  Speaker 4: people who've watched it from the start. When I started,
• 44:50
  Speaker 4: I was a pregnant and then be carried on doing
• 44:54
  Speaker 4: these episodes right up until the month before it was due.
• 44:57
  Speaker 4: And I'm expanding and exp and. It's hilarious. Could you
• 45:02
  Speaker 4: see me getting bigger and bigger every episode? And there's
• 45:07
  Speaker 4: no hiding tom from a from a professional videographer in there.
• 45:12
  Speaker 4: I mean they capture it all, so least I can
• 45:15
  Speaker 4: say to the baby, you're on YouTube, yeah before the womb, Yeah.
• 45:20
  Speaker 3: That was there, was the start of your career.
• 45:22
  Speaker 4: Yes, yeah, if he's famous, he owes.
• 45:25
  Speaker 3: Me absolutely absolutely.
• 45:27
  Speaker 2: And I've always spoken about your Instagram as well. Where
• 45:31
  Speaker 2: can people find your Instagram.
• 45:34
  Speaker 4: So it's get set mum. And yet my like if
• 45:38
  Speaker 4: the last thing I'd want to say really is just
• 45:41
  Speaker 4: and if my inbox is always open, I will not
• 45:44
  Speaker 4: reply straight away, and but I will reply. And if
• 45:49
  Speaker 4: for anyone that is feeling alone and they just want
• 45:53
  Speaker 4: to connect with someone, it doesn't even have to be
• 45:55
  Speaker 4: a full blown conversation, even if you just want to
• 45:58
  Speaker 4: send in a mooji or just ask a question anything.
• 46:02
  Speaker 4: You don't need to feel pressured to keep going and
• 46:06
  Speaker 4: spark a conversation. Just if you want to reach out.
• 46:10
  Speaker 4: I am there, So yeah, just don't feel alone.
• 46:13
  Speaker 2: Fantastic, there's wonderful sentiment to finish on. But just from me,
• 46:18
  Speaker 2: thank you so so much for coming on. I know,
• 46:20
  Speaker 2: as I said at the beginning, you were someone who
• 46:22
  Speaker 2: I've I've wanted on from the start and it's been
• 46:25
  Speaker 2: an absolute pleasure to talk to you. So thank you
• 46:27
  Speaker 2: so so much.
• 46:28
  Speaker 4: It's been left. Thank you for having me. Tom.
• 46:33
  Speaker 1: Thank you for listening to the podcast. Find us on
• 46:36
  Speaker 1: Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes
• 46:42
  Speaker 1: on Spotify by searching Tom's Hirshbrung's podcast.
• 47:01
  Speaker 4: F