Latest / Tom's Hirschsprung's Podcast / Episode 122 - With Lauren and Kieran Jewell

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Episode 122 - With Lauren and Kieran Jewell · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
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  Speaker 1: just want to understand more, this podcast is for you.
• 0:15
  Speaker 1: Each episode, we will explore real stories and honest conversations
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  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in. Hello, and welcome to episode one hundred and
• 0:48
  Speaker 1: twenty two of Tom's Hirshbrun's Podcast. I'm delighted to be
• 0:52
  Speaker 1: joined by two people this evening, and I'm joined by
• 0:55
  Speaker 1: Kieran and Lauren Jewel. Welcome to the podcast.
• 0:58
  Speaker 2: Hell, how are you here?
• 0:59
  Speaker 3: Go?
• 1:00
  Speaker 1: Thank you so much both of the people coming on. We
• 1:03
  Speaker 1: are here to talk about your son who has hersh bronze.
• 1:08
  Speaker 1: And I guess I'll start with you first. Lauren, would
• 1:11
  Speaker 1: you like to take us through the first first moments?
• 1:16
  Speaker 4: I guess, yeah, so it Actually I had a horrible labor,
• 1:20
  Speaker 4: but we won't go into that one.
• 1:23
  Speaker 2: You can if you want.
• 1:24
  Speaker 1: People have done before.
• 1:25
  Speaker 4: I don't think you need want to speedboard by the
• 1:27
  Speaker 4: horrible day. But yeah, so he when he was first born,
• 1:34
  Speaker 4: he was breastfed, so he had a really really long
• 1:38
  Speaker 4: feed to start with, and I think even me and
• 1:41
  Speaker 4: the nurses were all like, oh wow, this is amazing,
• 1:44
  Speaker 4: like breastfed really well, and it all seemed to be
• 1:48
  Speaker 4: going really smoothly. And then I had hit, So I
• 1:51
  Speaker 4: think I had him what tunnels at two forty I
• 1:53
  Speaker 4: never remember. I was with nasty drugs at that point.
• 1:58
  Speaker 4: And it got to about a o'clock in the evening
• 2:01
  Speaker 4: and one of the nurses was like, has he fed anymore?
• 2:04
  Speaker 4: And I was just like, no, he hasn't really asked
• 2:09
  Speaker 4: for it, hasn't cried or anything, so I haven't really
• 2:12
  Speaker 4: offered it to him. And she was like, okay, maybe
• 2:15
  Speaker 4: try and he just did not want it, was just
• 2:17
  Speaker 4: not interested. So she was like, okay, we'll come around
• 2:20
  Speaker 4: in again in like an hour, so try again. So
• 2:22
  Speaker 4: I think it was like a couple of hours later
• 2:24
  Speaker 4: in the end, came around, just wasn't interested at all.
• 2:28
  Speaker 4: So she was like, okay, let's try and like syringe
• 2:30
  Speaker 4: some milk into him, try it that way just to
• 2:33
  Speaker 4: see if he then takes that. And they managed to
• 2:38
  Speaker 4: get some in and he threw it up straight away
• 2:42
  Speaker 4: and it was like a greeny colored sick. And I
• 2:47
  Speaker 4: remember saying then to the midwife. I was like, is
• 2:50
  Speaker 4: this normal? I know babies are sick, but green, like
• 2:55
  Speaker 4: it is green normal? And she was like, yeah, sometimes
• 2:57
  Speaker 4: they sway things when they come out. It's just one
• 3:00
  Speaker 4: of those days. They were like, well, keep an eye
• 3:02
  Speaker 4: on it, but it's probably nothing. So the next day
• 3:05
  Speaker 4: he had like all his newborn cheks and they all
• 3:09
  Speaker 4: were absolutely fine. He still hadn't really fed during the night,
• 3:13
  Speaker 4: and every time he did have like anything syringed in
• 3:16
  Speaker 4: just threw it back up again. He did part themponion,
• 3:20
  Speaker 4: didn't we I think probably about three times he passed,
• 3:25
  Speaker 4: so we were like, didn't No one obviously thought anything
• 3:28
  Speaker 4: of it, but he just still was refusing milk, didn't
• 3:33
  Speaker 4: want it, didn't want to have a bottle, didn't want
• 3:35
  Speaker 4: it from me, didn't want it from a syringe, and
• 3:39
  Speaker 4: anytime the like nurses basically force fed it into him,
• 3:44
  Speaker 4: he just, yeah, threw it back up. So I think
• 3:47
  Speaker 4: it got to.
• 3:49
  Speaker 2: The what two days, second day?
• 3:52
  Speaker 4: Yeah, it was yeah, the second day, and one of
• 3:55
  Speaker 4: the nurses came around to do the check on him
• 3:58
  Speaker 4: and they were like, his was it heart?
• 4:01
  Speaker 2: He's breathing.
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  Speaker 4: It wasn't right, So she was like, we're just going
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  Speaker 4: to take him off to do some checks and stuff.
• 4:09
  Speaker 4: Took him off to do then and basically came back
• 4:12
  Speaker 4: with we're going to take him to nick you because
• 4:18
  Speaker 4: he has what did he what did they say to
• 4:21
  Speaker 4: start with?
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  Speaker 2: They thought it was these these suspected twisted bows, and.
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  Speaker 4: They put him under the light.
• 4:31
  Speaker 2: Jaundice. They put it down for that to start with. Yeah, yeah,
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  Speaker 2: so they.
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  Speaker 4: Just said it was that. So they put him under
• 4:39
  Speaker 4: the light. They kept an eye on him, but then
• 4:43
  Speaker 4: they were reconcerned because his stomach was really hard and
• 4:47
  Speaker 4: really big. So we then got woken up on the
• 4:52
  Speaker 4: third day, early hours of the morning and the doctor
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  Speaker 4: was like, we're going to rush him over to the hospital.
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  Speaker 4: We think he either has sepsis or a twisted bow,
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  Speaker 4: so he yeah, needs to have this emergency operation. So
• 5:10
  Speaker 4: he went over, had that obviously, came back that it
• 5:14
  Speaker 4: was absolutely fine. His bow from what they saw, looked
• 5:18
  Speaker 4: absolutely fine. They did open surgery and they were like
• 5:21
  Speaker 4: they gave it all like a flush through, said everything
• 5:23
  Speaker 4: was fine. So they were like, the only other thing
• 5:26
  Speaker 4: we can put it down to is hash bongster thease,
• 5:30
  Speaker 4: which we were just like, what on earth is that
• 5:33
  Speaker 4: the problem. So, because he obviously then had such a
• 5:38
  Speaker 4: major surgery, he was an intensive care for two weeks,
• 5:43
  Speaker 4: and we were then showing while they were waiting for
• 5:46
  Speaker 4: the biopsies to come back, we were showing how to
• 5:49
  Speaker 4: do washouts. But he was still partying poo as well
• 5:54
  Speaker 4: at the same time. So they were actually having bets
• 5:59
  Speaker 4: in intensive care, weren't they the nurses.
• 6:02
  Speaker 2: They weren't exchanging money or that once there was there
• 6:05
  Speaker 2: was a boogie scambling ring going on.
• 6:09
  Speaker 4: Yeah, they were having bets about whether or not he
• 6:12
  Speaker 4: had Hirshbung's disease or how bad it was, because they
• 6:16
  Speaker 4: were like, he's pooing normally, Like he was then back
• 6:21
  Speaker 4: feeding again when we were doing washouts, he was then
• 6:23
  Speaker 4: feeding and everything. So they were just like, I think
• 6:27
  Speaker 4: one of the nurses just turned around and were like,
• 6:29
  Speaker 4: she's just like, it's really weird if this is Hushbung's disease,
• 6:32
  Speaker 4: it's it's obviously a really mild case of it. Basically,
• 6:39
  Speaker 4: So two weeks later it came back from the biopsies
• 6:41
  Speaker 4: that it was Hirshbung's disease. So we carried on with
• 6:44
  Speaker 4: the bow washouts, so we were doing them daily, and
• 6:49
  Speaker 4: he seemed to be doing really well, didn't he He
• 6:52
  Speaker 4: was still passing, so he'd still passed throughout the day pooh,
• 6:56
  Speaker 4: without even without us doing washouts, who's still passing?
• 6:59
  Speaker 2: Pooh.
• 7:01
  Speaker 4: Yeah, just seemed to be doing really well. He then
• 7:05
  Speaker 4: had his big operation in the.
• 7:12
  Speaker 2: December twenty three.
• 7:13
  Speaker 4: Yeah, and they thought that it was going to be
• 7:16
  Speaker 4: really straightforward, because obviously he seemed quite straightforward. They thought
• 7:21
  Speaker 4: they were going to be able to remove the but
• 7:23
  Speaker 4: a small bit of beal that they thought probably had it,
• 7:29
  Speaker 4: and that was going to be it. And it was
• 7:34
  Speaker 4: the longest day, as they always are, and it got
• 7:37
  Speaker 4: to I think it was probably about half past five
• 7:39
  Speaker 4: in the evening, wasn't it.
• 7:41
  Speaker 2: Yeah, it went.
• 7:47
  Speaker 4: And the surgeon came around and she was like, he's
• 7:50
  Speaker 4: got a stromer and we were just like, oh okay,
• 7:55
  Speaker 4: because they they'd always said to us a stormer can happen,
• 8:00
  Speaker 4: but it's rare obviously because of how he's coping, they
• 8:06
  Speaker 4: probably won't come out with one. So we were then like,
• 8:10
  Speaker 4: oh okay, Like that was a big shock. They were like,
• 8:14
  Speaker 4: he's obviously got it worse. Than we first thought. So
• 8:18
  Speaker 4: it's obviously a lot higher up. So they're like, we've
• 8:21
  Speaker 4: given him a stromer, we'll just have to monitor how
• 8:24
  Speaker 4: he goes. And then we had about then from then
• 8:30
  Speaker 4: of just illness, didn't we So I think I think
• 8:36
  Speaker 4: it was the twenty twenty four. It was May June,
• 8:41
  Speaker 4: no April, May July. We were admitted like three times
• 8:46
  Speaker 4: within those months to like I think he had like
• 8:49
  Speaker 4: stomach bugs or just viruses that just really badly affected
• 8:53
  Speaker 4: his bows. So they ended up pushing back the big
• 8:58
  Speaker 4: operation because they were like, he needs to be well,
• 9:01
  Speaker 4: he needs to be well enough, and he needs to
• 9:03
  Speaker 4: be gaining weight before we can even think about doing
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  Speaker 4: the big operation. So they waited until June of last year,
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  Speaker 4: and he actually had the whole of his large boar
• 9:20
  Speaker 4: removed and sixteen sent me to Tosicly and he's had
• 9:28
  Speaker 4: his iliostomy moved like obviously high wrapping to this small bath.
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  Speaker 2: So yeah, wow.
• 9:36
  Speaker 1: What fascinated me just first about that story is that
• 9:41
  Speaker 1: they suspected possible possible hirshbruns and then by riding saying
• 9:45
  Speaker 1: that ended up being total colonic.
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  Speaker 2: Yeah, so they were because of he was pulling the
• 9:52
  Speaker 2: washouts all going really well, and they said everything we
• 9:55
  Speaker 2: were doing and everything that he was doing himself was
• 9:59
  Speaker 2: a that maybe he doesn't even have hersh runs. They
• 10:02
  Speaker 2: were kind of like, it could be, but without obviously
• 10:05
  Speaker 2: about the biopsy results, it might not be. So you know,
• 10:08
  Speaker 2: who knows at the moment, and that's why they would like, so,
• 10:10
  Speaker 2: I'm sure make him kind of they had a bit
• 10:12
  Speaker 2: of a laugh of us off. They could tell they
• 10:13
  Speaker 2: would be were quite stressed at that situating thing, and
• 10:16
  Speaker 2: they were like, oh, so that wasn't it is. Almost
• 10:18
  Speaker 2: don't think it is that kind of stuff. And then
• 10:20
  Speaker 2: when it came back it was we were like everyone
• 10:24
  Speaker 2: was like shocked. Even even the good guys that were saying, oh, yeah,
• 10:27
  Speaker 2: we think it's Hirshprungs, they were shocked to find out
• 10:31
  Speaker 2: it was also as high up in the bout as
• 10:34
  Speaker 2: it was. It didn't make any sense, which I think
• 10:36
  Speaker 2: is probably a theme with Hirshprungs. It doesn't make any sense.
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  Speaker 1: Yeah, tell her about it. One hundred and twenty episodes here,
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  Speaker 1: I still.
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  Speaker 2: Have no idea.
• 10:45
  Speaker 1: Yeah, but yeah, I mean that because that I mean
• 10:49
  Speaker 1: because mccoub was passed and was still pooing. Yeah, I
• 10:56
  Speaker 1: was convinced by your story that it was going to
• 10:58
  Speaker 1: be something like old a short segment or short segment
• 11:02
  Speaker 1: or something where it's it's I don't want to say
• 11:06
  Speaker 1: not as serious, but not as effective, but it's yeah,
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  Speaker 1: I think that's that's crazy.
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  Speaker 4: I do think still even to this day, like our
• 11:15
  Speaker 4: surgeon and all of our surgical team is still like
• 11:19
  Speaker 4: it's baffling because he was perrying by himself, like he
• 11:24
  Speaker 4: was doing so well with just the washouts, and you
• 11:27
  Speaker 4: look back and you're like, well, we were doing the
• 11:30
  Speaker 4: washouts fine once a day, but you just think will
• 11:33
  Speaker 4: be getting way up to the small bought Probably not.
• 11:37
  Speaker 4: So it's yeah, it's fascinating, but yeah.
• 11:42
  Speaker 2: Yes, that's incredible.
• 11:44
  Speaker 1: And when it comes to the operations, I know you
• 11:47
  Speaker 1: said that it was a really long day, you know,
• 11:50
  Speaker 1: I imagine it is. I've been lucky enough for my
• 11:53
  Speaker 1: ten surgeries to be asleep for all of them, so
• 11:56
  Speaker 1: I don't know what it's like to be sort of waiting.
• 11:59
  Speaker 1: But what do you what do you kind of do
• 12:01
  Speaker 1: in that in that time past the.
• 12:05
  Speaker 4: First operation, we were just both an absolute wreck. So
• 12:11
  Speaker 4: I think we went for like a hot canwa walk,
• 12:15
  Speaker 4: didn't we on the first operation we ever had, and
• 12:17
  Speaker 4: then we sat in the room just waiting the whole
• 12:20
  Speaker 4: day and it was the last operation he had. We
• 12:23
  Speaker 4: were like, we need to do better because you end
• 12:27
  Speaker 4: up going insane, Like you end up just sitting there
• 12:29
  Speaker 4: being like, well it's been so long now like why
• 12:33
  Speaker 4: is he not out? What's going on? And something happened
• 12:36
  Speaker 4: and obviously there's no communication when he's under either, So yeah,
• 12:41
  Speaker 4: we actually the last operation was longer, so he was
• 12:44
  Speaker 4: actually under in June last year. He was actually from
• 12:47
  Speaker 4: about half eight in the morning until what was it
• 12:50
  Speaker 4: half seven in the evening. Yeah, a really really long
• 12:54
  Speaker 4: one last time. But we learned from the big operation
• 12:58
  Speaker 4: he had and we actually spent probably about half the
• 13:02
  Speaker 4: day out. We went and had some lunch to drink
• 13:05
  Speaker 4: and we were like, do you know what, he's in
• 13:07
  Speaker 4: good hands.
• 13:07
  Speaker 2: It was a soft drink on powerpart M.
• 13:13
  Speaker 1: You didn't appeel It was a dumble bye.
• 13:16
  Speaker 4: Did feel like a last class of wine. But knowing
• 13:19
  Speaker 4: I was going to be in the hospital for probably
• 13:21
  Speaker 4: about a week two weeks half, but I was like,
• 13:23
  Speaker 4: probably shouldn't but yeah, they are such long days, such
• 13:29
  Speaker 4: long days.
• 13:30
  Speaker 2: Yeah, I can I can imagine.
• 13:32
  Speaker 1: I just yeah, I just can't think what you yeah,
• 13:35
  Speaker 1: what you do because I mean you got to I
• 13:37
  Speaker 1: guess you can't take your mind off it, but you
• 13:40
  Speaker 1: try to.
• 13:41
  Speaker 2: If that makes sense, I don't know. We're really lucky,
• 13:43
  Speaker 2: Like we live about ten years drive from Southampton General Hospital,
• 13:48
  Speaker 2: so we, like a lot of people don't have that
• 13:50
  Speaker 2: luxury of being able to come home like obviously people's
• 13:52
  Speaker 2: day in the ron doll houses and stuff like that.
• 13:55
  Speaker 2: We're really lucky that we lived down the road. But
• 13:56
  Speaker 2: even still we were like, yeah, we're not gonna go home,
• 13:59
  Speaker 2: We'll just stay around hospital. And I mean it's it's
• 14:03
  Speaker 2: really morbid at Southampton Hospitals as a as a cemetery
• 14:06
  Speaker 2: directly outside and yeah, I know you drive past it
• 14:10
  Speaker 2: on the way to the car park with many a time,
• 14:12
  Speaker 2: and it is where my great grandparents are in there,
• 14:16
  Speaker 2: so I used to visit there quite a lot with
• 14:17
  Speaker 2: my grandparents. So we at one point we were like
• 14:19
  Speaker 2: we're just we're find their grave and put that kind
• 14:21
  Speaker 2: of stuff, and they were like, oh, that's killed ten minutes.
• 14:24
  Speaker 2: Like now what do we walked to the park and
• 14:27
  Speaker 2: right are ten minutes?
• 14:28
  Speaker 3: Right?
• 14:28
  Speaker 2: What you do now, so, yeah, we just spent a
• 14:31
  Speaker 2: lot of money in Costa to be honest. Yeah, well good,
• 14:34
  Speaker 2: good for their business, I guess, yeah. Absolutely.
• 14:36
  Speaker 4: It's really strange though, because I was actually having this
• 14:40
  Speaker 4: discussion with someone the other day, a parent, and I
• 14:43
  Speaker 4: was saying that you you just become decent tied to it,
• 14:47
  Speaker 4: because I feel like he's had loads of like mini
• 14:51
  Speaker 4: procedures while he's been under anesthetic as well, and the
• 14:56
  Speaker 4: first couple of operations obviously the one is a baby
• 14:59
  Speaker 4: and the one that he had in the December, we
• 15:03
  Speaker 4: were just yeah awful when he first went under, But
• 15:07
  Speaker 4: the last one that he had in June, even though
• 15:09
  Speaker 4: I knew it was going to be a much bigger surgery, like,
• 15:12
  Speaker 4: there was almost nothing like obviously I was worried, but
• 15:16
  Speaker 4: there was no cheers there. And I think you almost yeah,
• 15:19
  Speaker 4: I think you just become desensitized to it because you're like, yeah,
• 15:22
  Speaker 4: just get on with it.
• 15:23
  Speaker 2: But also, obviously that much older, so if you're in
• 15:27
  Speaker 2: the waiting room getting upset or nervous and that you're
• 15:29
  Speaker 2: going to be going to stress him out as well,
• 15:31
  Speaker 2: especially like last year when he had been or nearly two. Yeah,
• 15:34
  Speaker 2: I think if we had been stressing out or not
• 15:37
  Speaker 2: choosing it like a normal day. He had started stressing
• 15:41
  Speaker 2: out and it would have made him worse as well.
• 15:42
  Speaker 2: So you kind of put on a bit of a
• 15:44
  Speaker 2: brave face. And Laura's definitely downplaying that, like we definitely
• 15:48
  Speaker 2: to say it's like, oh, you know it, once he'd
• 15:51
  Speaker 2: gone in, it was definitely a little bit of a
• 15:54
  Speaker 2: but then but not half the difference as well. That
• 15:56
  Speaker 2: was in June, so the weather's a bit nice to
• 15:58
  Speaker 2: go for a walk. The one before I was in December,
• 16:01
  Speaker 2: so you're a little more limited. So if it makes
• 16:05
  Speaker 2: any difference the some being out going for a walk
• 16:07
  Speaker 2: around that the commons have happened and stuff like that,
• 16:10
  Speaker 2: and us forcing ourselves to leave the hospital and that
• 16:14
  Speaker 2: you know, the immediate area that that was trying arable,
• 16:17
  Speaker 2: but definitely learned that lesson.
• 16:19
  Speaker 3: Yeah, I think you make a really good point there.
• 16:21
  Speaker 3: I think whether we make a huge difference whether the
• 16:23
  Speaker 3: operations in the summer or whether it's in the winter,
• 16:26
  Speaker 3: I think just that getting out, getting fresh air can
• 16:30
  Speaker 3: can be you know, can can be really helpful.
• 16:33
  Speaker 2: So I think anything else righting.
• 16:36
  Speaker 4: Yeah, like even with him when he was discharged, just
• 16:41
  Speaker 4: being able to Obviously they're cooped up, aren't they in
• 16:44
  Speaker 4: like the rooms or whatever. So long, so it's it
• 16:48
  Speaker 4: was actually really nice in June of last year being
• 16:50
  Speaker 4: able to just be like, right, we've been discharged, let
• 16:52
  Speaker 4: us just go home and actually get in the garden,
• 16:55
  Speaker 4: like actually get some fresh air, like. And I think
• 16:58
  Speaker 4: that makes the world of difference, doesn't it to recovery
• 17:01
  Speaker 4: as well?
• 17:02
  Speaker 2: Huge?
• 17:03
  Speaker 1: Yeah, absolutely, you made a point there, Lauren when you
• 17:07
  Speaker 1: said that he came back with a stoma and you
• 17:10
  Speaker 1: weren't kind of expecting. Was there any kind of like
• 17:15
  Speaker 1: warning or did they say, oh, this this may possibly
• 17:18
  Speaker 1: happen or bought Yeah.
• 17:19
  Speaker 4: So just before he went under, obviously they go through
• 17:23
  Speaker 4: the whole procedure and everything, and they did say, then, look,
• 17:28
  Speaker 4: there is a possibility he could come out of the stormer.
• 17:33
  Speaker 4: Obviously it probably probably won't happen, but there is that possibility.
• 17:40
  Speaker 4: But I think everyone was just so unaware of how
• 17:44
  Speaker 4: bad it actually was.
• 17:46
  Speaker 2: Yeah.
• 17:47
  Speaker 1: Yeah, I guess, because I mean I guess you have
• 17:50
  Speaker 1: to sign forms and whatnot, and it says all this,
• 17:53
  Speaker 1: this may happen. They may have a stonma, and they
• 17:54
  Speaker 1: may do this and that and the other.
• 17:55
  Speaker 2: But yeah. I guess when you're not quite expecting, because.
• 17:59
  Speaker 1: I've spoken to others before when they aren't expecting their
• 18:03
  Speaker 1: child to have a stoma, and then they appear with
• 18:05
  Speaker 1: a stoma, and you think, right, okay, now, as well
• 18:09
  Speaker 1: as having to talk about, you know, hirsh brungs and
• 18:13
  Speaker 1: get to grips with hirshbrungs, it's then also being a
• 18:16
  Speaker 1: stoma parent, I guess is the term. It brings along
• 18:22
  Speaker 1: another set of things to learn.
• 18:25
  Speaker 2: I guess we were really it sounds really strange before
• 18:29
  Speaker 2: the surgery because we were like, oh, it's going to
• 18:31
  Speaker 2: be a small procedure, is pull through is going to
• 18:33
  Speaker 2: be really successful, it's going to be you know, he's
• 18:35
  Speaker 2: going to be mostly intact, all that kind of stuff.
• 18:37
  Speaker 2: And it was probably my I like to kind of go, oh,
• 18:40
  Speaker 2: this is the best case scenario. This is the worst
• 18:42
  Speaker 2: case scenario. Lest aim for somewhere in the middle, or
• 18:45
  Speaker 2: best case has aimed for that, And I think I'm
• 18:47
  Speaker 2: just saying to you, oh, worst case snario is a stoma,
• 18:49
  Speaker 2: which isn't the end of the world, but that's that's realistic.
• 18:52
  Speaker 2: That's the worst case scenario. And then when he came
• 18:54
  Speaker 2: out of a stoma instin us worst case scenario, I'll know.
• 18:58
  Speaker 2: And we've kind of had that little moment where we're
• 18:59
  Speaker 2: kind of didn't know what to do, but the best
• 19:02
  Speaker 2: thing that could have happened, especially obviously I can't stay
• 19:04
  Speaker 2: the whole time, so I'll leave at eight o'clock. And
• 19:08
  Speaker 2: you made friends with the woman, the lady across from you,
• 19:11
  Speaker 2: whose son also is about the same age as ready,
• 19:13
  Speaker 2: isn't he I think he's about six months song slightly older,
• 19:16
  Speaker 2: And he had a stoma. And she noticed that you
• 19:19
  Speaker 2: were a bit upset and nervous stuff like that, and
• 19:22
  Speaker 2: she's straight away to come over here have a.
• 19:24
  Speaker 4: Look, and like showed us the stonma that looked healthy,
• 19:28
  Speaker 4: that had been there since he was.
• 19:30
  Speaker 2: Like enough, he has a similar he had a similar miracle,
• 19:33
  Speaker 2: but not hersh rug like a similar bow like problem.
• 19:35
  Speaker 2: And and she and the next day when I was
• 19:38
  Speaker 2: back in her and her husband did a bag change
• 19:41
  Speaker 2: and just showed us everything. And they said, oh, I
• 19:43
  Speaker 2: remember we've we'd said a sort of time. They said
• 19:45
  Speaker 2: to us, Oh, you will never want to lose that stoma.
• 19:47
  Speaker 2: You'll love it. It looks scary now, but you'll you'll be
• 19:50
  Speaker 2: all over it. It's like, you'll be unbelievably good at
• 19:52
  Speaker 2: Stomas within like a month, so don't worry about it.
• 19:56
  Speaker 2: And you still you're still in contact art you and stuff.
• 19:58
  Speaker 2: And I think that pair of instantly squashing that concern,
• 20:02
  Speaker 2: like immediately squashing it and checking on you and stuff
• 20:06
  Speaker 2: like that, I think instantly alleviated any stress about.
• 20:09
  Speaker 4: It, because they look they do look scared. They're straight
• 20:13
  Speaker 4: to start with your like, oh wow, okay, Like I'd
• 20:16
  Speaker 4: never actually seen a sommer before, so to then see
• 20:19
  Speaker 4: one on my four months old side, I was like, okay,
• 20:23
  Speaker 4: like what on earth, what on earth do we do?
• 20:28
  Speaker 4: So actually, and once it has obviously first been made,
• 20:31
  Speaker 4: the whole area, like bless him, his whole stomach just
• 20:34
  Speaker 4: looked so sore, so obviously seeing it on our friend's
• 20:39
  Speaker 4: little boy, it was actually really nice to be like,
• 20:41
  Speaker 4: oh okay, like it actually isn't that scary, Like that's
• 20:46
  Speaker 4: been there for a very long time and it looks okay.
• 20:49
  Speaker 1: Yeah, I mean that that's ah, that's so useful. I
• 20:53
  Speaker 1: can't think of the amount and the amount of parents
• 20:55
  Speaker 1: who word of loved that situation or that support or
• 20:59
  Speaker 1: that help straight away, because again, like you said, I mean,
• 21:06
  Speaker 1: we talked a little bit off air about people. Obviously,
• 21:09
  Speaker 1: if you mentioned the word hirs sprungs, ninety nine percent,
• 21:12
  Speaker 1: people wouldn't have a clue. I think a lot of
• 21:13
  Speaker 1: people wouldn't have a clue if you mentioned the word
• 21:15
  Speaker 1: stoma as well. Yeah, and I think I think, what
• 21:19
  Speaker 1: is it? One in I think one in two hundred,
• 21:21
  Speaker 1: which I think is quite a lot people have a stoma.
• 21:24
  Speaker 1: I think that's quite a lot. But it's but I
• 21:26
  Speaker 1: still think a lot of people wouldn't. And there's obviously
• 21:29
  Speaker 1: loads of different types of stoners are sort of either
• 21:31
  Speaker 1: really small aces as the iliostomy and whatnot. But I
• 21:35
  Speaker 1: still think, you know, and even though people know what
• 21:38
  Speaker 1: a stoner is, stoma care, I'm guessing is completely different
• 21:43
  Speaker 1: than just seeing a stomer.
• 21:45
  Speaker 2: I guess honestly it was. It's crazy because like we
• 21:49
  Speaker 2: just to see, no, he's got a stoma. And obviously
• 21:51
  Speaker 2: once and the lady opposite I said, had gone through
• 21:54
  Speaker 2: open bars and spoke to us, and the surgical team
• 21:56
  Speaker 2: had been brilliant, and the STMA nurses in this era
• 22:00
  Speaker 2: have been brilliant as well. You're like, oh, we've really
• 22:02
  Speaker 2: got the hang of this, Like we've really our arrogance.
• 22:07
  Speaker 2: We're unbelievable stoments. This is great, And then you have
• 22:10
  Speaker 2: the news stoma pit in following the surgery last year,
• 22:13
  Speaker 2: and everything we knew about the previous stama was a
• 22:16
  Speaker 2: complete waste of time And how can it be so different?
• 22:19
  Speaker 2: Like I understand the output being different, but just the
• 22:23
  Speaker 2: behavior of a stoma is so strange, and it's just
• 22:27
  Speaker 2: it still blows I mind now, like we can't can't
• 22:30
  Speaker 2: cut a head around it, to be honest, But we're
• 22:32
  Speaker 2: definitely on the right path. And and Freddy's growing up
• 22:35
  Speaker 2: with it, which he's used to it, so he doesn't
• 22:37
  Speaker 2: think like a great deal of it now. But yeah,
• 22:40
  Speaker 2: it's just so weird. I don't understand. Bows are the
• 22:44
  Speaker 2: strangest things. I didn't know anything, honestly. I bought a
• 22:47
  Speaker 2: bowel and then testing with different things until Freddie was born.
• 22:50
  Speaker 2: Turns out they're not.
• 22:53
  Speaker 1: But again, like, why why would you have to learn that?
• 22:57
  Speaker 2: Yeah, you know you don't.
• 22:58
  Speaker 1: Again there's this this always kind of I have so
• 23:03
  Speaker 1: much admiration for parents of children who have any chronic killers,
• 23:07
  Speaker 1: but especially hirshbrungs, because you have to learn so much
• 23:10
  Speaker 1: you haven't got a choice, you know, you have to.
• 23:13
  Speaker 1: You're suddenly from you know, a few well matter of
• 23:18
  Speaker 1: weeks and maybe even days previous, expecting you know, normal birth,
• 23:25
  Speaker 1: normal pregnancy, because that's the other thing with hirschbrungs. Again,
• 23:29
  Speaker 1: most of the time there's a completely normal pregnancy, So
• 23:33
  Speaker 1: you wouldn't you wouldn't notice, you know, if it doesn't
• 23:36
  Speaker 1: tend to show up in there unless you have genetic testing.
• 23:40
  Speaker 1: But again that's hidden this and whatnot. But to then
• 23:46
  Speaker 1: having to go right from then to now, we have
• 23:50
  Speaker 1: to learn all about hirshbrongs. Now we have to learn
• 23:52
  Speaker 1: all about stonemas. Now we have to learn about pull throughs.
• 23:55
  Speaker 1: When I know you mentioned that there were a couple
• 23:58
  Speaker 1: of conditions that twisted bows were mentioned previously to that,
• 24:03
  Speaker 1: and then they mentioned hirsh brums. Sometimes they heard people
• 24:07
  Speaker 1: say to parents or don't google it?
• 24:10
  Speaker 2: Was that said to you, and did you google it?
• 24:14
  Speaker 2: I'd meet immediately, they say, maybe what does I googled
• 24:18
  Speaker 2: it immediately and then realized that I'd spell it wrong
• 24:21
  Speaker 2: and nothing underneath it even came close. And I don't
• 24:24
  Speaker 2: know if that's a reflection of me or of how
• 24:26
  Speaker 2: diffought the word is to spell oh is the word is.
• 24:29
  Speaker 2: I'll go with that, I'll word, but I think, yeah,
• 24:33
  Speaker 2: immediately we googled it and then we were The real
• 24:37
  Speaker 2: difficult thing was obviously where he was in intensive care.
• 24:39
  Speaker 2: We were coming home, so we it's down the road.
• 24:42
  Speaker 2: We're really lucky that we're that fortunate is down the road,
• 24:44
  Speaker 2: but obviously it's still not very nice leaving little one,
• 24:48
  Speaker 2: little one in the hospital and you come home and
• 24:50
  Speaker 2: I think you pested what I think you we pested
• 24:52
  Speaker 2: the nurses phone calls all night see if he's all right,
• 24:55
  Speaker 2: and that we'd come home, and then we'd be completely
• 24:57
  Speaker 2: separated from the situation by being obviously a different building,
• 25:00
  Speaker 2: and all we're doing is just scrolling through our phones.
• 25:04
  Speaker 2: She's a hushbrungs zi. And the funny and it's the
• 25:07
  Speaker 2: joke I make to Laur at the time, is I've
• 25:09
  Speaker 2: never known Lauren to read academic journals ever. I mean,
• 25:14
  Speaker 2: if I'd suggested this to her five years ago, she'd
• 25:16
  Speaker 2: have laughed in my face and told me the shut up.
• 25:18
  Speaker 4: Yeah.
• 25:18
  Speaker 2: And the fact that she's now reading journals from around
• 25:21
  Speaker 2: the world. I caught her on Google Scholar not so
• 25:24
  Speaker 2: long ago, and I was you did that just completely
• 25:27
  Speaker 2: blowing my mind that she's doing this kind of research.
• 25:30
  Speaker 2: It's just really funny how it just yeah, it just
• 25:33
  Speaker 2: changes everything. You find out this one thing and you've
• 25:36
  Speaker 2: got on an absolute deep dive. And I think my
• 25:39
  Speaker 2: Instagram algorithm for a long time was completely corrupted with
• 25:43
  Speaker 2: Hirschbrung's disease.
• 25:44
  Speaker 4: So I have to admit that is one thing that
• 25:47
  Speaker 4: especially for me, and I think you would feel the same.
• 25:50
  Speaker 4: The social media side of things massively got me through,
• 25:54
  Speaker 4: like seeing the amazing stories that you see on Facebook,
• 25:59
  Speaker 4: like I'm part of the Hirshbrum's pages, and seeing the yeah,
• 26:02
  Speaker 4: the really positive stories, and even like from your podcast,
• 26:08
  Speaker 4: and seeing things on Instagram and you see really like
• 26:11
  Speaker 4: reassuring things and you're like, Okay, this is going to
• 26:14
  Speaker 4: be okay, everything is going to be fine. And I
• 26:19
  Speaker 4: really believe social media got us through massively the questions
• 26:23
  Speaker 4: that I've asked on there before, because it is so rare,
• 26:27
  Speaker 4: isn't it.
• 26:28
  Speaker 2: That's rare that social media is probabaity have put.
• 26:32
  Speaker 4: Yeah, he's had one bow of entry clitis. And I
• 26:40
  Speaker 4: think you almost get like mum instinct, like I said
• 26:44
  Speaker 4: to you straight away to night, like this doesn't feel
• 26:47
  Speaker 4: right this. I feel like we need to go to hospital,
• 26:50
  Speaker 4: and you're like, no, no, let's just give it until tomorrow.
• 26:53
  Speaker 2: How it goes.
• 26:54
  Speaker 4: So basically, he had gone the whole day without eating.
• 26:57
  Speaker 4: He literally full on, which is not like Freddy. He
• 27:00
  Speaker 4: full and refused to eat the whole day. He just
• 27:05
  Speaker 4: wasn't himself. He had a temperature just wasn't one hundred
• 27:07
  Speaker 4: percent and we put him to bed. His stone was
• 27:11
  Speaker 4: absolutely fine. Put him to bed, and I think it
• 27:14
  Speaker 4: was about ten o'clock he literally bombed up, just liquid
• 27:18
  Speaker 4: and I was like, we're taking in to hospital now.
• 27:21
  Speaker 4: I was like, this just the one until the morning.
• 27:22
  Speaker 4: I was like, no, we are taking in toss to now.
• 27:25
  Speaker 4: And yeah, he had entracolitis. But I think I actually
• 27:29
  Speaker 4: put something on one of the Facebook pages that that
• 27:32
  Speaker 4: day saying is this normal? What's other people's opinions? And
• 27:37
  Speaker 4: so many people were like, keep an eye on him.
• 27:39
  Speaker 4: If it gets worse, definitely take him to any and
• 27:42
  Speaker 4: it is so.
• 27:43
  Speaker 2: Helpful, so helpful. Yeah, definitely.
• 27:46
  Speaker 1: I think social media gets a bad rap sometimes for
• 27:49
  Speaker 1: stop and obviously there's tons of stuff on there that's
• 27:53
  Speaker 1: horrific and awful and rubbish.
• 27:54
  Speaker 2: You know whatever, But.
• 27:57
  Speaker 1: There's a lot of stuff on there and it guess
• 27:59
  Speaker 1: it depends its social media is everything. It's the very best,
• 28:02
  Speaker 1: the very worst, than everything in between. But there there
• 28:05
  Speaker 1: is is there's some fantastic people on there who were
• 28:09
  Speaker 1: who were so helpful.
• 28:10
  Speaker 2: I know you.
• 28:10
  Speaker 1: We talked to them about Georgina and how helpful she is.
• 28:14
  Speaker 1: And she's done her website now hirshprungs Hurtsprung's Disease dot
• 28:19
  Speaker 1: co uk, which is full of just again, something that
• 28:24
  Speaker 1: didn't exist a few years ago is is now out
• 28:28
  Speaker 1: there and I think she's brilliant. And there are so
• 28:30
  Speaker 1: many others who you know, just when you need you think, well,
• 28:34
  Speaker 1: what's wrong. I don't know what's wrong, but I know
• 28:36
  Speaker 1: something's wrong, and you go right, well, i'll see you
• 28:39
  Speaker 1: know if anybody else has got this, And more often
• 28:43
  Speaker 1: than not, you aren't the only one who has experienced
• 28:47
  Speaker 1: that before or having to have a child that's experienced
• 28:51
  Speaker 1: that before. But i'd definitely to your point as well,
• 28:55
  Speaker 1: go along with with Mum's instinct. Absolutely the amount the
• 28:58
  Speaker 1: amount of people. I don't know about Dad's instinct. Hieron,
• 29:01
  Speaker 1: I don't know about that.
• 29:03
  Speaker 2: I don't leaving to the morning. He was fine.
• 29:09
  Speaker 1: Definitely, definitely Mum's instinct. I wholeheartedly support because I just
• 29:16
  Speaker 1: and it's like to say, I know something's wrong. I
• 29:18
  Speaker 1: don't know what's wrong, but I know something's wrong, and
• 29:22
  Speaker 1: ninety nine percent of the time you're right. Yeah, I think,
• 29:26
  Speaker 1: I think so, I think that's that's huge. But I
• 29:32
  Speaker 1: guess I know we sort of sidetracked a little bit
• 29:34
  Speaker 1: from the story. But where how about did we get
• 29:37
  Speaker 1: up to had had surgery? Yeah, and I think that
• 29:44
  Speaker 1: was the point where we stopped. I think so after
• 29:47
  Speaker 1: the surgery, I know he's had three surgeries that correct.
• 29:51
  Speaker 4: Yeah, So he had the one as a baby, he
• 29:54
  Speaker 4: had one at four months, and he had the one
• 29:56
  Speaker 4: in June of last year. So he's had three surgeries.
• 30:00
  Speaker 4: He currently has the iliostomy, which we love. However, he
• 30:09
  Speaker 4: because the bit of bow now between the iliostomy, so
• 30:12
  Speaker 4: he's got a loop sotma. So the bit of bow
• 30:14
  Speaker 4: between the iliostomy and his bum is obviously healthy now
• 30:19
  Speaker 4: it's actually healthy boo. So he actually passes from his
• 30:24
  Speaker 4: bum as well, so it will sometimes overflow, and obviously
• 30:30
  Speaker 4: his bow continues his new purse as well. So yeah,
• 30:34
  Speaker 4: it overflows and we sometimes get a poo nappy as well,
• 30:37
  Speaker 4: which is yeah, fun because we never had the string
• 30:40
  Speaker 4: that he had a four months. We never had poo
• 30:43
  Speaker 4: then in a nappy from that four months until June
• 30:45
  Speaker 4: of last year. Other than when he had introplight us
• 30:49
  Speaker 4: nothing came out of there, So yeah, having pooh back
• 30:53
  Speaker 4: in a nappy is a bit of a oh wow,
• 30:56
  Speaker 4: what do we what do we do?
• 30:58
  Speaker 2: Actually seen his, but it is it's really strange. I
• 31:02
  Speaker 2: would kind of laugh at like Freddie's friends dads and
• 31:04
  Speaker 2: friends of mine, they've got kids and stuff. I would
• 31:07
  Speaker 2: just kind of laugh and go oh that. As to
• 31:08
  Speaker 2: putting nappies, I still don't think I've had to change
• 31:11
  Speaker 2: more than ten poo nappies in my life, which is
• 31:14
  Speaker 2: crazy when you've I've got a free potentially potentially it's
• 31:17
  Speaker 2: a three year old in a few months, and I've
• 31:20
  Speaker 2: gin it. The big ones do poo nappies, and now
• 31:22
  Speaker 2: I'm emptying a bag and the poo nappy at the
• 31:25
  Speaker 2: same time. So all of a sudden, I think, probably
• 31:27
  Speaker 2: me being a bit given it, the big one that's
• 31:29
  Speaker 2: now actually turned around and bit me on the backside there,
• 31:32
  Speaker 2: so he poos out, poos out his buman out of
• 31:36
  Speaker 2: his bag, and we have noticed he can fart from
• 31:39
  Speaker 2: his barman from his stonema. At the same time, I
• 31:42
  Speaker 2: think I'm really impressed with but genuinely impressed with that he.
• 31:45
  Speaker 4: Beats his funny heads dust which one the noise came from.
• 31:50
  Speaker 4: That's quite a fan game.
• 31:51
  Speaker 2: So yeah, but these aren't games that were in ever
• 31:55
  Speaker 2: any of the books or YouTube videos I read about
• 31:58
  Speaker 2: or watch my parenting and that they never mentioned that one,
• 32:01
  Speaker 2: and so that's yeah, yeah, he's pretty so did mention that. Yeah,
• 32:07
  Speaker 2: but it is funny. It is like, say, the stoma
• 32:13
  Speaker 2: really funny, way as that mum opposite in the hospital,
• 32:16
  Speaker 2: a second surgery said, oh, you'll love it. We absolutely
• 32:20
  Speaker 2: absolutely love it, and it.
• 32:22
  Speaker 4: Gives him the life he has now. I mean he
• 32:26
  Speaker 4: seeing as he does pass poo through now it is
• 32:31
  Speaker 4: really lickedy and it does give him really really bad
• 32:36
  Speaker 4: nappy rash. So we actually we tried out a new
• 32:42
  Speaker 4: product from the hospital in January because he it was
• 32:46
  Speaker 4: really really bad, to the point where every time we
• 32:48
  Speaker 4: were wagging his barty he was just screaming. So they
• 32:50
  Speaker 4: gave us this I think it's called cavalon. It's like
• 32:54
  Speaker 4: a stick. Have you ever heard of it?
• 32:57
  Speaker 2: And I had, Yes, I have, And.
• 33:00
  Speaker 4: They were like, you need to hold his bum cheeks
• 33:02
  Speaker 4: apart for at least ninety seconds because otherwise his bum
• 33:05
  Speaker 4: will stick together. So we held it apart from for
• 33:09
  Speaker 4: way long, bring it before bed, put his nappy on,
• 33:15
  Speaker 4: put him to bed, woke up the next morning, try
• 33:18
  Speaker 4: to pull his nappy off. Nappy wouldn't come off without
• 33:20
  Speaker 4: really tugging it. We were like, oh okay, and then
• 33:24
  Speaker 4: we got the nappy off and his bum was completely
• 33:27
  Speaker 4: stuck together. We were like, oh okay, this is a
• 33:30
  Speaker 4: new one. So yeah, we've tried all sorts, but yeah,
• 33:36
  Speaker 4: his bum does still get really source.
• 33:38
  Speaker 2: So we love the Stromer.
• 33:41
  Speaker 4: We would ideally like to keep the Stormer, just because
• 33:45
  Speaker 4: he lived such an allal life with it, and because
• 33:49
  Speaker 4: obviously he doesn't have much bow, we know that he
• 33:53
  Speaker 4: probably wouldn't be able to have much controlled over it.
• 33:58
  Speaker 4: So yeah, we are for the stromer. Wearing chats with
• 34:01
  Speaker 4: our surgeon about like where we go from now, and
• 34:07
  Speaker 4: we actually did have a second opinion from older Hay
• 34:09
  Speaker 4: as well, just to discuss everything, and they were really
• 34:12
  Speaker 4: helpful as well, so yeah, at the moment, we're just
• 34:16
  Speaker 4: going to keep riding the wave of the stoma and
• 34:19
  Speaker 4: just see how he gets on. I think in our heads,
• 34:22
  Speaker 4: in an ideal world, it would be nice for him
• 34:24
  Speaker 4: to keep what he's got now until he's at an
• 34:27
  Speaker 4: age where he can decide, actually I want to make
• 34:30
  Speaker 4: this stamer permanent or no, I would give it, yes,
• 34:35
  Speaker 4: fie and yeah, give it a go. So I think
• 34:39
  Speaker 4: that would be the ideal route really from now.
• 34:43
  Speaker 1: But yeah, good, I think that's the other good thing.
• 34:47
  Speaker 1: You have options, And I think again, I'm not sure
• 34:52
  Speaker 1: of back in the day, but sort of now, there
• 34:55
  Speaker 1: are a lot of people who I talk to have
• 34:58
  Speaker 1: children with either long segment or total on it that say, actually,
• 35:02
  Speaker 1: the stoma kind of works for us, you know. And
• 35:06
  Speaker 1: stomas are not this sort of big scary thing that
• 35:09
  Speaker 1: you've never seen before. Now that there are so many people,
• 35:13
  Speaker 1: for not just hirshbruns, but for a multitude of different
• 35:16
  Speaker 1: conditions have stomas, and they're so prominent, and you know,
• 35:21
  Speaker 1: people don't worry so much about you know, the bags
• 35:24
  Speaker 1: and this and that and the other, and they are
• 35:27
  Speaker 1: they are a lot more visible now, you know, So
• 35:31
  Speaker 1: having a stoma and thinking, oh, I'm going to be
• 35:34
  Speaker 1: you know, the only one in the world with a
• 35:36
  Speaker 1: stoma is just not is not something anymore. So I
• 35:40
  Speaker 1: think there are a lot of people, and again it's
• 35:42
  Speaker 1: very much each to their own, but there are I
• 35:45
  Speaker 1: have seen a lot of people with longer segment. Hirschbrun
• 35:48
  Speaker 1: Is saying, actually, we're we're going to keep the stoma now.
• 35:51
  Speaker 1: But it's yeah, but I think that's that's so interesting,
• 35:55
  Speaker 1: interesting one really really interesting. I'll be fascinated to know
• 35:58
  Speaker 1: sort of in a few years and more months and
• 36:01
  Speaker 1: years to see, you know, how how Freddie gets on.
• 36:06
  Speaker 2: I think, yeah, yeah, yeah, it'll be good.
• 36:08
  Speaker 4: I think we just want him to be able to
• 36:10
  Speaker 4: live a normal, normal life and be able to go
• 36:15
  Speaker 4: to school, and and I think with the stonemer he
• 36:18
  Speaker 4: can like yeah, yeah, sorry, I chipped him.
• 36:21
  Speaker 2: For what you remember. I think it's like we find
• 36:26
  Speaker 2: both both of us actually didn't know about Stover's until
• 36:29
  Speaker 2: Adelle Roberts Del Roberts, isn't it. Yes, the Raider, the
• 36:33
  Speaker 2: choosing the marathons and stuff that, So that's actually were
• 36:36
  Speaker 2: the first time we've really been like, oh, what's that
• 36:39
  Speaker 2: and noticed it, and then not so long later we're
• 36:42
  Speaker 2: having a child and then we'll end up with a
• 36:44
  Speaker 2: stomer and it's kind of it was nice having Oh,
• 36:48
  Speaker 2: we know there are people that have got these. Obviously,
• 36:50
  Speaker 2: I think I believe hers was the bow cancer. Might
• 36:52
  Speaker 2: be wrong. I think you're right, Like obviously, different reasons
• 36:56
  Speaker 2: and everyone, you know when you look on nine everyone,
• 36:59
  Speaker 2: but people different reasons for it. So some people have
• 37:01
  Speaker 2: like you know, chromes and mother bits and bobs and stuff,
• 37:05
  Speaker 2: and that's it's interesting hearing how those guys have got
• 37:08
  Speaker 2: Stonmas and why they've got and it's kind of like
• 37:10
  Speaker 2: a real I don't know, it's like it's a really
• 37:13
  Speaker 2: cool like community of people with with Stonmas and and
• 37:16
  Speaker 2: it's just like a really strange way for everyone to
• 37:19
  Speaker 2: be like a big group of people be brought together,
• 37:22
  Speaker 2: but it's it's a really nice way, if that makes sense.
• 37:24
  Speaker 2: Like it's a no one expected this reason, Like you know,
• 37:27
  Speaker 2: if you're a football fan to be with football people
• 37:28
  Speaker 2: that kind of stuff. But with stomachs, everyone's together. And
• 37:31
  Speaker 2: I've already done the research. There's a great Britain stomach
• 37:34
  Speaker 2: rugby team so beratther Be Absolte. Bye. Yes, I've already
• 37:39
  Speaker 2: done the research for him. He'll be he'll be all right.
• 37:42
  Speaker 2: You already got him trained, Yeah, exactly, all passed out
• 37:45
  Speaker 2: for him. You're absolutely right.
• 37:49
  Speaker 1: You know, it's it's so much more prevalent than it
• 37:53
  Speaker 1: it was. You know, I think back to when I
• 37:55
  Speaker 1: had not my first one, but my second one, you know,
• 37:58
  Speaker 1: going back over twenty years now. You know, I don't
• 38:02
  Speaker 1: know anyone with a stoma. I didn't even mention it
• 38:05
  Speaker 1: to anyone because I thought, well, nobody will know, nobody
• 38:07
  Speaker 1: will know what.
• 38:07
  Speaker 2: On earth I'm talking about.
• 38:09
  Speaker 1: But it's there's so many people now who've and not
• 38:13
  Speaker 1: just people who just have a stoma and live with
• 38:16
  Speaker 1: a stoma, but achieve with a stoner as well, like
• 38:18
  Speaker 1: you said, with rugby team like Adel Roberts. You know
• 38:21
  Speaker 1: these people who do marathons, do Ironman's, do rugby? Do
• 38:27
  Speaker 1: you know everything and anything? And I guess that kind
• 38:30
  Speaker 1: of leads on to my last question, which I know
• 38:33
  Speaker 1: you've spoken about medically for Freddy. What's sort of coming
• 38:38
  Speaker 1: up potentially in the future, maybe maybe not, but sort
• 38:41
  Speaker 1: of non medically. And I last saw both of you
• 38:44
  Speaker 1: on this one, I guess apart from sort of just
• 38:48
  Speaker 1: living a normal, happy life, but what else would you
• 38:50
  Speaker 1: like for Freddy in the future.
• 38:53
  Speaker 2: I think, like so an issue we've had really I
• 38:56
  Speaker 2: think really recently needed decided Christmas this New Year, and
• 39:01
  Speaker 2: he kind of he got really scared, didn't he. We
• 39:03
  Speaker 2: have a we'd actually really lucky with these bags that
• 39:06
  Speaker 2: we've actually had no maybe very few leaks or any
• 39:10
  Speaker 2: issues like that. But it doesn't happened. One day it
• 39:13
  Speaker 2: was kind of peeling off. He's two years old. He
• 39:15
  Speaker 2: wants to pull the bag off. So we kind of
• 39:18
  Speaker 2: it was coming off and thore, oh, we're have a
• 39:20
  Speaker 2: shower anyway, we'll shower you about the bag on. Normally
• 39:23
  Speaker 2: we use we shower with the bag on because we've
• 39:26
  Speaker 2: hit scarred. When he was about eighteen months old, he
• 39:28
  Speaker 2: decided to grab his stoma and the shower tray looked
• 39:34
  Speaker 2: a bit like a murder scene. And ever since that
• 39:37
  Speaker 2: we've been a bit like, yeah, we're not going to
• 39:39
  Speaker 2: do that. Let's leep the bag on means more. And
• 39:42
  Speaker 2: by doing that we were, oh, yeah, we'll keep it
• 39:45
  Speaker 2: that way. So recently, obviously the bag came off and
• 39:47
  Speaker 2: we thought, oh, we'll just leave it off, he'll shower
• 39:50
  Speaker 2: about it. And he really panicked. He saw it and
• 39:54
  Speaker 2: just freaked out and was crying and just really got
• 39:56
  Speaker 2: really scared, and we were a little bit like kind
• 39:58
  Speaker 2: of kind of taken backfire and we just assumed he fine.
• 40:02
  Speaker 2: But we've thought about he hasn't really seen his stoma.
• 40:05
  Speaker 2: That sounds really silly, but it's normally touched inside the
• 40:08
  Speaker 2: bat in the bag. Why would you see it exactly?
• 40:11
  Speaker 2: And when we do bag changes, we rely heavily on
• 40:14
  Speaker 2: YouTube and Spider Man or something like that to keep
• 40:18
  Speaker 2: him occupied, just because he keeps him still and so
• 40:22
  Speaker 2: he doesn't even look doesn't off the look down at it.
• 40:24
  Speaker 2: He just kind of lays there, let's let's us do
• 40:26
  Speaker 2: need to do and then he's all right and he
• 40:27
  Speaker 2: gets up and runderway. So he kind of stood in
• 40:30
  Speaker 2: the mirror and freaked out. So what we've we've really
• 40:32
  Speaker 2: tried is to get him used to his stoma. So
• 40:36
  Speaker 2: you know, we've we've named it Red, and he can't
• 40:39
  Speaker 2: say him any words, so we've all learned some colors
• 40:42
  Speaker 2: or not till we do Red. And one of your
• 40:45
  Speaker 2: friends it was really nice and made like a storyboard
• 40:48
  Speaker 2: kind of thing about about his stoma as well, which
• 40:51
  Speaker 2: she's which he really likes, doesn't it. He's got pictures
• 40:54
  Speaker 2: of him and the dogs are dogs in it and
• 40:57
  Speaker 2: he really loves that and that's really nice as well.
• 41:00
  Speaker 2: And he's just seems a lot more since we've really
• 41:05
  Speaker 2: consciously done it. We've never like hidden away from it
• 41:08
  Speaker 2: all been embarrassed bying like that, but we've always just
• 41:11
  Speaker 2: just been there. We made more of an effort to
• 41:13
  Speaker 2: make him aware of it. And now, you know, when
• 41:16
  Speaker 2: you go swimming, he shows everyone his stoma. He almost
• 41:19
  Speaker 2: looks annoyed when other people don't have one, so stuff,
• 41:22
  Speaker 2: like he's just noted to be against non stoma people.
• 41:26
  Speaker 2: But I think like long term, we just want him
• 41:28
  Speaker 2: to be completely comfortable with what he's got. To answer
• 41:31
  Speaker 2: your question, like that's you know, he was very nervous
• 41:33
  Speaker 2: and very you know, it was actually really unsettling for
• 41:37
  Speaker 2: us to see he was so scared of it. And
• 41:38
  Speaker 2: obviously it's his body. He shouldn't be scared of it
• 41:40
  Speaker 2: because that bag is a part of him and it's
• 41:42
  Speaker 2: an important part of his health as well, which is
• 41:45
  Speaker 2: also important, very important obviously. So yeah, I think just
• 41:49
  Speaker 2: for him to be really comfortable in his own body
• 41:52
  Speaker 2: and just to be like, I've got a stroma but
• 41:55
  Speaker 2: it doesn't really matter. I don't really care. It's there,
• 41:57
  Speaker 2: and you know, I'll move on. Obviously, I've got he's
• 42:00
  Speaker 2: got medical things and we're overcoming them slowly, like with
• 42:04
  Speaker 2: you know, he's dairy tolerant intolerance, so you know, not
• 42:08
  Speaker 2: having dairy, and he's got to learn not to put
• 42:10
  Speaker 2: random toys and lick windows and stuff that put things
• 42:14
  Speaker 2: in his mouth because then he gets ill. So is
• 42:17
  Speaker 2: that kind of stuff. We'll just with ones to be
• 42:18
  Speaker 2: really happy with it. And yeah, to be honest, I
• 42:21
  Speaker 2: think I think he is. I think he is much
• 42:23
  Speaker 2: better now. He's really you know, if he's going to
• 42:28
  Speaker 2: keep a stonma long term. Obviously we've read a lot
• 42:30
  Speaker 2: of stuff about people having mental health problems with it,
• 42:32
  Speaker 2: because obviously he can be a real taboo for people
• 42:35
  Speaker 2: and then I can, and that's completely understandable. But because
• 42:37
  Speaker 2: obviously he's growing up knowing no different, I don't want
• 42:40
  Speaker 2: him to. It would be easier for him than going
• 42:43
  Speaker 2: from no stoma to stoma as an adult or a teenager.
• 42:46
  Speaker 2: So we just want to be happy with that and
• 42:48
  Speaker 2: and to be as like I said, whatever normal is.
• 42:51
  Speaker 2: We want him to try to maintain a normal life
• 42:55
  Speaker 2: and not have any barriers. You know, he doesn't have
• 42:57
  Speaker 2: these public toilets too often, which is as a result
• 43:00
  Speaker 2: I'm fan. So, yeah, I haven't. That's That's that's what
• 43:04
  Speaker 2: I'll say on that.
• 43:05
  Speaker 4: Yeah, I think I would agree. I just yeah, want
• 43:07
  Speaker 4: him to be able to anything he wants to do.
• 43:09
  Speaker 4: I want him to be able to do it. He
• 43:12
  Speaker 4: and this is another reason we're so for his stoma.
• 43:16
  Speaker 4: He absolutely loves swimming. He started swimming when he was
• 43:20
  Speaker 4: probably about what was he I think he was about
• 43:22
  Speaker 4: eight weeks.
• 43:23
  Speaker 2: It was once his first scars had healed. N Yeah,
• 43:26
  Speaker 2: he was allowed to. He was in the poolwake immediately.
• 43:29
  Speaker 4: It's something we've done every week since then. And that's
• 43:34
  Speaker 4: something that I look back at and I'm like, well, actually,
• 43:36
  Speaker 4: if he doesn't have his stona, will he feel confident
• 43:38
  Speaker 4: enough to go swimming if he can't control his boughs?
• 43:43
  Speaker 4: So it's little things like that, he loves something. I
• 43:45
  Speaker 4: want him to be able to just do everything he
• 43:47
  Speaker 4: wants to do and everything he enjoys doing, which yeah,
• 43:51
  Speaker 4: with the stroma, we know.
• 43:52
  Speaker 2: He can azing.
• 43:55
  Speaker 4: Well.
• 43:55
  Speaker 2: Thank you so so much both of you for joining me.
• 43:58
  Speaker 1: It's been fascinating to hear for any story and your
• 44:01
  Speaker 1: thoughts on it and thoughts on stoners as well. This
• 44:05
  Speaker 1: is fantastic, absolutely brilliant, and I wish, I wish all
• 44:09
  Speaker 1: three of you, four of you with the dog, the
• 44:12
  Speaker 1: very very best for everything that comes in the future.
• 44:15
  Speaker 2: Thank you so much for joining me. Thank you so much, Thank.
• 44:25
  Speaker 1: You for listening and being part of this growing community.
• 44:28
  Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
• 44:30
  Speaker 1: leave a review, and share it with someone who might
• 44:33
  Speaker 1: need it. You can connect with us on social media
• 44:36
  Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
• 44:42
  Speaker 2: See you next week, baby Ba.