Latest / Tom's Hirschsprung's Podcast / Episode 43 - With Louise

Transcript

Episode 43 - With Louise · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshprung's Podcast, where our 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 three of Tom's Hirshprung's Podcast.
0:43
Speaker 2: I have Louise here with me today, who was going
0:47
Speaker 2: to talk about her son, Jacob, who's around twelve years old.
0:51
Speaker 2: Louise your former teacher as well, so we definitely have
0:55
Speaker 2: that in common. So we'll start if I may just
1:00
Speaker 2: with sort of the early days of Jacob's Hirshbrung's journey.
1:06
Speaker 2: And you were also at Older Hay, which seems to
1:10
Speaker 2: be incredibly popular with a lot of my guests. A
1:12
Speaker 2: lot of people seem to come or go to Older Hay.
1:16
Speaker 2: Unfortunately I haven't found anyone who's gone to Great Ormond
1:18
Speaker 2: Street yet, but there's still time. But so so if
1:22
Speaker 2: you top us through just a little bit about Jacob's diagnosis,
1:27
Speaker 2: just to start off with.
1:28
Speaker 3: Yeah, Hi, Yeah, so Jacob was well. I had a
1:32
Speaker 3: not completely normal pregnancy, no issues whatsoever, really kind of
1:36
Speaker 3: sailed through pregnancy Fair's child. I thought, you know, this
1:40
Speaker 3: is easy, and then Jacob was born again, straightforward, no
1:45
Speaker 3: no interventions. Everything was kind of fine and again with
1:49
Speaker 3: myself and my husband just thought, oh this is you know,
1:51
Speaker 3: we've got a dream baby. He was quite quiet, he
1:55
Speaker 3: slept a lot, so you know, all the babies on
1:57
Speaker 3: the ward were crying and we thought we got lucky.
2:00
Speaker 3: And then my husband went home that evening and he
2:05
Speaker 3: came back to collect me to go home the next day.
2:08
Speaker 3: But the luckily a midwife basically said he's not has
2:14
Speaker 3: he had a poo? And I was like, oh no,
2:16
Speaker 3: I don't think so. But I was really ready to
2:18
Speaker 3: go in home. So I was like, it's fine, you know,
2:19
Speaker 3: I want to get him home. I want to go.
2:21
Speaker 3: I just want to get back to my house. And
2:23
Speaker 3: she was like, luckily, she was adamant that I wasn't
2:26
Speaker 3: to go anywhere until the baby had passed his first pink.
2:30
Speaker 3: So after a while kind of Paul came back to
2:33
Speaker 3: pick me up or to pick us up, and she
2:36
Speaker 3: came back and lack of pat my bag. I was
2:37
Speaker 3: literally ready for going. And she came back to the
2:40
Speaker 3: smooth wife and she was like, has he pooed? And
2:42
Speaker 3: I was like no, And then kind of all of
2:45
Speaker 3: a sudden, he started vomiting really kind of obviously bright
2:48
Speaker 3: green bial, so we obviously got the the doctors. Then
2:53
Speaker 3: the midwives came round and started kind of examining because
2:57
Speaker 3: he'd been quite quiet. He'd said a little bit, but
3:00
Speaker 3: not nothing particularly to kind of worry about, I guess,
3:03
Speaker 3: and that's when they started like examining him and checking
3:06
Speaker 3: his tummy. They talked about obviously tummy being swollen, and
3:09
Speaker 3: obviously that's when everything kind of goes into a bit
3:11
Speaker 3: of a blur, doesn't it, because you just don't really
3:13
Speaker 3: know what's going on. And then they basically rushed him
3:18
Speaker 3: kind of upstairs. So upstairs where I had him at
3:20
Speaker 3: Roy Preston Hospital, they had a neon natal unit neon NATO,
3:26
Speaker 3: like yeah, just an award, but they wanted to kind
3:28
Speaker 3: of check him out, so they took him up there
3:32
Speaker 3: and I remember it's really silly now, but Paul they
3:34
Speaker 3: bought me a balloon and I was in like a
3:36
Speaker 3: right reel like days and you know, because obviously we
3:39
Speaker 3: were upset, and I was adamant that he brought this
3:41
Speaker 3: this balloon up to over and he was like, you know,
3:46
Speaker 3: probably looking at me, she's gone in saying this woman.
3:48
Speaker 3: But yeah, so we kind of moved upstairs the neonatal
3:51
Speaker 3: ward and at that point we were just sat and
3:54
Speaker 3: we were unsure as to what was going on. And
3:55
Speaker 3: by this point my family were texting and going to
3:57
Speaker 3: your home yet you know, let us know when you're home,
4:00
Speaker 3: want to come see the baby. So our phones were
4:02
Speaker 3: being inundated, but we obviously couldn't reply because we didn't
4:04
Speaker 3: know what was going on. And then after I can't
4:08
Speaker 3: even tell you how long it might have been. It
4:10
Speaker 3: might have been an hour because I just felt like
4:12
Speaker 3: I was not there. To be honest, a doctor, senior
4:16
Speaker 3: doctor came sat us down quite seriously, and to be honest,
4:19
Speaker 3: the way that she worded it wasn't great. When looking
4:22
Speaker 3: back and reflecting back, it was I didn't know whether
4:25
Speaker 3: it meant that he was going to survive. The way
4:27
Speaker 3: that she worded it, it was he's got a vast
4:30
Speaker 3: blockage in his bowel, he's very poorly. We need to
4:34
Speaker 3: get into a children's hospital as soon as possible. And
4:37
Speaker 3: kind of that was it. So as you can imagine,
4:39
Speaker 3: my head was swimming. I felt like I wasn't there.
4:42
Speaker 3: I'm sure Paul felt the same, but being the good
4:46
Speaker 3: dad and husband eared he was, you know, he was
4:48
Speaker 3: my rot and he they said he'll either go to
4:52
Speaker 3: Older Hay or Manchester Children's and then within kind of
4:55
Speaker 3: fifteen minutes he said there's a bed at Older Hay.
4:58
Speaker 3: So they bundled him up, let us travel with him,
5:01
Speaker 3: and he had to obviously go in an ambulance on
5:03
Speaker 3: his own at twenty four hours old. So that was
5:06
Speaker 3: really traumatic in itself, just that being parted from you,
5:09
Speaker 3: they go to get emotional, that's not like that. So
5:14
Speaker 3: we had to kind of let him go to All
5:16
Speaker 3: the Hay and they said, you know, we didn't get
5:18
Speaker 3: any more information than that. At that point. They said,
5:21
Speaker 3: meeting there, go home, get an overnight bag for both
5:24
Speaker 3: of you. You might be there for a while. So
5:28
Speaker 3: obviously we tried to let a family know as best
5:30
Speaker 3: we could. We just said he's poorly, he's going to
5:32
Speaker 3: All the Hay and we kind of diverted at our house.
5:35
Speaker 3: We got a few bits. I'm not eating the thing
5:38
Speaker 3: all day because of the WIVG. It was just it
5:40
Speaker 3: was just an awful time. Really, when looking back and
5:43
Speaker 3: and telling the story again, it actually does like really
5:45
Speaker 3: all back. And then we got to All the Hay.
5:48
Speaker 3: It was must have been about half eleven at night,
5:50
Speaker 3: so it was really late, obviously, and really tired, only
5:53
Speaker 3: giving birth the day before, so imagine how emotional and
5:57
Speaker 3: where my hormones were. And I remember we, you know,
6:01
Speaker 3: we phoned the ward. He'd been transferred to the neon
6:04
Speaker 3: natal surgical ward at all the Hay, and we walked
6:07
Speaker 3: onto the ward and I was, I'll be honest, crying
6:09
Speaker 3: my eyes out, and I remember this two nurses. I'll
6:12
Speaker 3: give a big shout out to Mary Hughes because I'm
6:16
Speaker 3: sure she'll listen to this when I tell her I've
6:17
Speaker 3: recorded it. And as I walked on in a lovely
6:21
Speaker 3: thick scos accent, she said, she basically grabbed hold of me,
6:25
Speaker 3: pulled me into a bear hug and just said he'll
6:27
Speaker 3: be okay, he will be okay. And then another nurse,
6:31
Speaker 3: Andrea Fellow again, who's you know, still kind of friends
6:34
Speaker 3: with Ny, which is lovely, and they were just so
6:37
Speaker 3: reassuring and they were just like, you need to calm down.
6:40
Speaker 3: We're going to find out what's up within and we'll,
6:42
Speaker 3: you know, we'll get him salted.
6:44
Speaker 2: So they were just.
6:44
Speaker 3: Compared to the doctor who had given us that that
6:47
Speaker 3: news uppressed, and they were just saw positive and they
6:50
Speaker 3: asked if we're eating, and we were like no, so
6:53
Speaker 3: they'll bless them. And I always tell the story they'd
6:56
Speaker 3: brought like nurses do. They asked, they have loads of food,
6:59
Speaker 3: you know, they were working the nights year, and they
7:01
Speaker 3: put us in a side room and they shared their
7:03
Speaker 3: food with us. They gave us Rocky Road, They had
7:06
Speaker 3: natchos for cheese on and they gave us some of that.
7:08
Speaker 3: They were just so lovely and supportive and instantly kind
7:12
Speaker 3: of made us feel like he was going to be
7:15
Speaker 3: all right.
7:16
Speaker 2: I guess.
7:18
Speaker 3: They also asked, which was really important and probably quite
7:20
Speaker 3: an important point to make, that I did I want
7:22
Speaker 3: a breastfeed? And I was like, well, I wanted to,
7:24
Speaker 3: but that's gone out the window now. They were like, no,
7:26
Speaker 3: it's not. So they got me in a room, they
7:29
Speaker 3: got me expressing and said we can get you expressing
7:33
Speaker 3: and when he's ready to start feeding, we'll have all
7:35
Speaker 3: your milk to give him. And I think if they
7:37
Speaker 3: hadn't done that, then I wouldn't have breastfed. And I
7:40
Speaker 3: did end up bastfeeding Jacob for a year. So they
7:43
Speaker 3: were brilliant at that as well and really supportive. And
7:47
Speaker 3: then basically, obviously the doctors come, they start testing. They
7:52
Speaker 3: talked about it possibly might be sistic fibrosis, which was
7:56
Speaker 3: obviously quite worried because I think sometimes a bowel blockage
8:00
Speaker 3: quite common in that condition as well. And then they
8:04
Speaker 3: mentioned hirsh bumps disease and that they were going to
8:07
Speaker 3: look for that. So of course myself and Paul never
8:10
Speaker 3: heard of it, started googling it couldn't really get much information.
8:15
Speaker 3: There wasn't much out there. You know, it was twenty twelve,
8:17
Speaker 3: and although that's not that long ago, there just wasn't
8:19
Speaker 3: much out there. And luckily, my best friend actually works
8:24
Speaker 3: in works. She's a physio, but she works kind of
8:27
Speaker 3: with bowels in adults and women's health, and she was like, oh,
8:32
Speaker 3: hush bumps. She was like, honestly, if it's that, it'll
8:34
Speaker 3: be alright, Louise, it'll be all right. So I think
8:37
Speaker 3: that reassurance from Claire did help a little bit as well. Yeah,
8:42
Speaker 3: so they did some bowel biopsies and at five days
8:46
Speaker 3: old they also created a stoma, so his blockage was
8:50
Speaker 3: very vast and rod couldn't it couldn't be managed with
8:53
Speaker 3: irrigations and washouts. So they decided to create a stonma,
8:58
Speaker 3: and he had a neliostomy at five days old, and
9:02
Speaker 3: then at ten days old the diagnosis came back. So
9:04
Speaker 3: it was ten days when we got that Hirshbun's diagnosis.
9:07
Speaker 3: And then of course at that point you'd like, at
9:10
Speaker 3: that point, I didn't even know that there was a
9:11
Speaker 3: short segment or long segment or top no, so we
9:15
Speaker 3: didn't know what would be next really, And then yeah,
9:20
Speaker 3: we went home with a stonma, which was traumatic in itself,
9:23
Speaker 3: I'll be honest, and we didn't expect to be going
9:25
Speaker 3: home two weeks later than planned and with a stoma,
9:30
Speaker 3: and there was a lot of trauma around that. I
9:32
Speaker 3: didn't feel we got a lot of support with the stoma.
9:35
Speaker 3: We did from the nurses on the ward, don't get
9:37
Speaker 3: me wrong, they helped us, but following that in the
9:40
Speaker 3: community and I don't know if that's because we were
9:42
Speaker 3: kind of out of the catchment of Liverpool, so we
9:45
Speaker 3: were living near Chorley and I don't know if we
9:47
Speaker 3: were in between like community tea, I'm not sure, but
9:51
Speaker 3: we didn't get any support and his bags kept leaking
9:54
Speaker 3: and I was getting obviously upset. I couldn't take him
9:57
Speaker 3: anywhere because the bags were leaking. And then Blessing Paul
10:01
Speaker 3: did loads of research and we started using like a
10:04
Speaker 3: hairwire to get the flanges to fit, and eventually we
10:08
Speaker 3: got you know a lot of help from friends and
10:11
Speaker 3: people researching lots of little tips and techniques, and we
10:15
Speaker 3: got there, and you know, I was unable to start
10:17
Speaker 3: taking him out and enjoying having a newborn baby really.
10:21
Speaker 3: And then he went back in foot pull through surgery
10:23
Speaker 3: at about twelve weeks old. He was under anesthetic for
10:31
Speaker 3: about nine hours, so it was really long surgery. And
10:36
Speaker 3: when he came back around, they said that they'd taken
10:39
Speaker 3: most of his large bowls. So mister Bailey, his doctor
10:42
Speaker 3: who is now retired but it was fantastic, kind of
10:47
Speaker 3: described it as extended long segment Hirschbunk's disease, so it
10:52
Speaker 3: kind of wasn't short and it wasn't total colonic, but
10:56
Speaker 3: basically most of his colon was taken and they had
10:59
Speaker 3: to kind of a little tiny bit that's left they
11:02
Speaker 3: lip it around to kind of reconnect. So yeah, so
11:07
Speaker 3: that that was kind of like the start of the
11:09
Speaker 3: start a bit. Really, he was very poorly after his
11:12
Speaker 3: pull through got he also, unluckily for Jacob, he started
11:17
Speaker 3: kind of really struggling with his breathing not long after
11:19
Speaker 3: his surgery and he was diagnosed with but I think
11:23
Speaker 3: it was bronchitis at the time, so he he must
11:26
Speaker 3: have got that just the day before he went into
11:27
Speaker 3: hospital just being one lucky and he was he was,
11:31
Speaker 3: I mean, he was quite seriously poorly. He was so
11:33
Speaker 3: mister Bailey, the doctor, the surgeon, was very worried and
11:36
Speaker 3: he actually came in on his day off to check
11:38
Speaker 3: on him. He walked on the ward and his jeans
11:40
Speaker 3: and his shirt and he just I'm just concerned. And
11:43
Speaker 3: he ended up having a blood transfusion actually Jacob, to
11:46
Speaker 3: help with getting more oxygen around his little body. So
11:51
Speaker 3: quite poorly, but obviously he recovered from that, and then
11:55
Speaker 3: he got a line infection, so he had like a
11:57
Speaker 3: line going into his net and that got in fact,
12:01
Speaker 3: so it was that pull through surgery was quite traumatic
12:04
Speaker 3: in the sense it was a really long surgery and
12:06
Speaker 3: then there was complications after it, but obviously everything might
12:11
Speaker 3: be as well and older hay As I said, We're
12:13
Speaker 3: fantastic and we got home. I think it was about
12:16
Speaker 3: two weeks later and he did his first poo on
12:19
Speaker 3: our first wedding anniversary that nice present. So anniversary was
12:25
Speaker 3: in Monal McDonald's house and we celebrated his first pin.
12:29
Speaker 2: Ah, fantastic, fantastic. Thank you, Thank you so much for sharing.
12:35
Speaker 2: That's that's an awful lot of info, but thank you,
12:37
Speaker 2: thank you so much. And this is why I wanted
12:39
Speaker 2: to talk to you as well, because I like having
12:44
Speaker 2: lots of different Hirshprung stories and everybody has their own
12:48
Speaker 2: story to tell, and it's all full of ups and downs.
12:52
Speaker 2: And I think the last thing I want to do
12:53
Speaker 2: is just do one or two stories and then say, yeah,
12:56
Speaker 2: everything will be fine, et cetera, et cetera. But for
13:00
Speaker 2: your story, it's and I know we're only part way through,
13:03
Speaker 2: but it is full of ups and downs. And possibly
13:07
Speaker 2: as well, some people listening to this will think I'm
13:10
Speaker 2: the only one going through this at this time, and
13:14
Speaker 2: then to hear your story of we had this and
13:17
Speaker 2: then this happened and then this infection and that affection
13:21
Speaker 2: to know that those things you know, unfortunately do happen
13:25
Speaker 2: and that people aren't the only ones as such.
13:29
Speaker 3: Yeah, yeah, it's definitely, And that was one of the
13:32
Speaker 3: things I think when Jacob was born and diagnosed with this,
13:36
Speaker 3: obviously you feel like you're on your own because it's
13:39
Speaker 3: a rare, red condition. It's still still you know, to
13:42
Speaker 3: this day, people like, oh, what's that? Never heard of that?
13:45
Speaker 3: Some medical professionals, you know, haven't heard of it, always
13:49
Speaker 3: heard of it. I remember taken in seeing out of
13:51
Speaker 3: doctors doctor in the night when it was possibly about
13:55
Speaker 3: three or four, and again they'd not heard of it before,
13:58
Speaker 3: which are completely gare they can't know everything, but it's
14:02
Speaker 3: just it's just, yeah, it was such a daunting time
14:06
Speaker 3: not knowing what it was. Yeah, and I guess kind
14:10
Speaker 3: of my feelings are obviously that ups and downs. It's
14:13
Speaker 3: still very much like that now. Kind of one of
14:16
Speaker 3: the things I wanted to like touch upon really that
14:19
Speaker 3: while the pull through surgery was successful, obviously things are
14:24
Speaker 3: not always easy for Jacob, and you know, it's it's
14:27
Speaker 3: a tough gig having frums, and you know, some websites
14:31
Speaker 3: will lead you to believe that once the pull through
14:34
Speaker 3: has happened, they've got a cure. Yeah, you know, whilst
14:38
Speaker 3: that's kind of medically true in the sense that they
14:41
Speaker 3: can then pooh normally, actually living without a large bowel
14:46
Speaker 3: or some of you bowel is really impactful. And I
14:49
Speaker 3: think for Jacob, we've definitely seen lots and lots of
14:51
Speaker 3: ups and downs, and even at the age of twelve,
14:54
Speaker 3: you know, still getting that, although at the moment it's
14:58
Speaker 3: in a kind of a fairly good play that, but
15:00
Speaker 3: that's that's a very new thing.
15:03
Speaker 2: Yeah, yeah, no, I think I think that's important to
15:07
Speaker 2: stress as well, because I, as I said, you know, today,
15:11
Speaker 2: I think it's around twenty five plus episodes of the
15:14
Speaker 2: podcast out of forty three are Hirshbrung's related, and everybody
15:20
Speaker 2: has a little bit of a different story to tell.
15:24
Speaker 2: I take something away from every single person as well
15:28
Speaker 2: as my own story. I mean, some as you said,
15:31
Speaker 2: you know, some people have come on and they've they've said, well,
15:35
Speaker 2: I had to pull through it X amount of months.
15:38
Speaker 2: Now everything's fine, and that's great, that's wonderful, fantastic. And
15:43
Speaker 2: then I've had sort of from from all extremes, you know,
15:46
Speaker 2: from and then you know, having all manner of surgeries
15:51
Speaker 2: like my myself having ten surgeries and everything in between,
15:56
Speaker 2: so it is very individual, if that makes sense. And
16:02
Speaker 2: then it's just sort of the aim I guess of
16:04
Speaker 2: the podcast is to kind of show that there are
16:07
Speaker 2: lots of different types out there, but there are also
16:10
Speaker 2: lots of people who are thriving as well. Jacob definitely
16:15
Speaker 2: sounds like he's thriving.
16:17
Speaker 3: Oh he is, and he's likely you know, nothing stops
16:19
Speaker 3: him at all. You know, he's in a football team,
16:22
Speaker 3: he's got loads of friends. He he's recently taken fishing
16:26
Speaker 3: and abandonedly. Yeah, he loves his xbox. So in that sense,
16:31
Speaker 3: obviously completely normal kind of preteen we'll call him very
16:37
Speaker 3: much going through the preteen stage. But obviously his hirshbrums
16:41
Speaker 3: does stop some things. You know, he at the moment
16:44
Speaker 3: still hasn't ever slept at a friend's house and not
16:48
Speaker 3: that's not through him want. You know, he wants to,
16:50
Speaker 3: but because of his carene we can't. Really that can't
16:55
Speaker 3: happen just yet. Equally, he hasn't had a friends here
17:01
Speaker 3: for the same reason. Although we are, like I said,
17:03
Speaker 3: with the treatment that he's on at the moment, things
17:05
Speaker 3: are looking brighter and better and hopefully that can happen soon.
17:10
Speaker 3: You know, in the early days, you know, you can't
17:12
Speaker 3: go on long journeys, and so as we spoke about
17:15
Speaker 3: earlier that Jacob's an Aston Villa fan. We often go
17:18
Speaker 3: to the games. We have family in Birmingham and we've
17:21
Speaker 3: been to kind of Villa Park to watch a football
17:24
Speaker 3: game and we've we've left Hilla Park, got in the
17:27
Speaker 3: car to travel home at the m six and you know,
17:29
Speaker 3: the inevitable has happened and we've had to kind of
17:32
Speaker 3: divert and come back to Birmingham and go back to
17:35
Speaker 3: Grandma's to sort Jacob out. So in some in some
17:40
Speaker 3: ways it has it does impact some things, but obviously
17:44
Speaker 3: he's got loads of resilience, tons of it and just
17:47
Speaker 3: tries to get on with, you know, a normal life.
17:50
Speaker 3: But I think it's important to point out that of course,
17:53
Speaker 3: if you've not got most of your bowl, there are
17:55
Speaker 3: going to be issues, yeah, in the main, and you
17:59
Speaker 3: know for it'll be more severe than others. And that's
18:02
Speaker 3: that's quite a difficult thing to get your head around because,
18:04
Speaker 3: like you said earlier, and no other family who've got
18:07
Speaker 3: a little boy with total klonic and they've literally had
18:11
Speaker 3: no issues since pulled through like no issue. Whether whereas
18:15
Speaker 3: Jacob's got a little bit of his colon life just
18:17
Speaker 3: a little bit and probably a pointless bit, to be honest,
18:20
Speaker 3: but we've had more issues and it's really difficult to
18:24
Speaker 3: get your head of olone hope everyone's so different as well.
18:27
Speaker 2: Yeah, I think so. And then certainly in my experience
18:30
Speaker 2: of talking to so many people, whether they've been on
18:33
Speaker 2: this podcast or whether I've just spoken to them via
18:36
Speaker 2: Instagram or whatever, there are so many different types. And
18:42
Speaker 2: I know you said as well about you not knowing
18:45
Speaker 2: about the five different types and whatnot, and to be honest,
18:49
Speaker 2: until a year ago, I only thought there was one type.
18:52
Speaker 2: I only thought there was a sure sake with her shrugs,
18:54
Speaker 2: and that was it. And I had to do some
18:57
Speaker 2: of my own research because obviously for doing the podcast,
19:03
Speaker 2: and and you're right that there's there's still a lot
19:06
Speaker 2: of work to be done there I think. I mean that,
19:09
Speaker 2: don't get me wrong. There are a lot of people
19:11
Speaker 2: who do fantastic work, so many, so many a few
19:16
Speaker 2: charities out there. There's people who you know, write blogs,
19:20
Speaker 2: et cetera, et cetera. But I think when you said
19:22
Speaker 2: you still go to when you still go to see
19:25
Speaker 2: doctors and say, oh, then he has Hirshprungs disease, and
19:30
Speaker 2: they go, ah, what's what's what's that? Et cetera. Yeah,
19:34
Speaker 2: how how do you because I seem to find this
19:38
Speaker 2: with a lot of different people, But how do you
19:40
Speaker 2: explain that? Because I kind of got it down to
19:43
Speaker 2: a couple of sentences in the end from about three paragraphs.
19:48
Speaker 2: But if you go to a doctor and they say, oh,
19:51
Speaker 2: did you say, oh he has he has Hirshprungs and
19:54
Speaker 2: they say, not heard of it? What's that? How do
19:58
Speaker 2: you sort of in a quick way I explain explain that?
20:02
Speaker 3: And I think I just I just can't say. It's
20:06
Speaker 3: where the nerves in the bowel walls having developed are
20:10
Speaker 3: are missing, and therefore they're the nerves that basically contract
20:13
Speaker 3: and push the pow out of your body, so it
20:15
Speaker 3: can't be pushed out. It's kind of simple as that. Really,
20:22
Speaker 3: that's there's so much congesture. Maybe help as well, you know,
20:28
Speaker 3: but yeah, it's just and that's that's just the simple
20:31
Speaker 3: way of explaining it. Yeah, and then to to your
20:34
Speaker 3: you know, if I was explaining it better, perhaps somebody
20:37
Speaker 3: didn't want to know too much detail, I would just
20:39
Speaker 3: say it's got a stomach problem. I we're just you know,
20:42
Speaker 3: and Jacob is telling a friend and he doesn't want
20:45
Speaker 3: to go into the depth and detail of what it is.
20:48
Speaker 3: Then I think it's accepted that a stomach problem or
20:51
Speaker 3: a stomaching shoe is the norm, and that's fine. So yeah, yeah.
20:57
Speaker 2: Definitely, definitely, no, that's a that's a brilliant explay. So
21:00
Speaker 2: I think I think that can often be a tricky
21:03
Speaker 2: one to explain to friends. I know I've had that
21:06
Speaker 2: before and when explaining to people and and you kind
21:09
Speaker 2: of almost play it down a little bit and kind
21:12
Speaker 2: of go, oh, it's yeah, di stomach issues. Occasionally I think.
21:16
Speaker 3: Who was well in it? Some people don't like to
21:18
Speaker 3: walk in about bowels and poo and so I'll be honest.
21:22
Speaker 3: For us, it's all we've talked about since the day
21:25
Speaker 3: Jacob was born. So it's very very normal kind of
21:28
Speaker 3: in this household because it has to be. And of course,
21:31
Speaker 3: when my second child was born, there was a big
21:34
Speaker 3: watch over Max for his first poo and you know,
21:37
Speaker 3: lots that they kept me in hospital again until that happened.
21:40
Speaker 3: And Max is back and doesn't have Hirshbum's disease. But yeah,
21:45
Speaker 3: it's just kind of even to his younger brother Max,
21:48
Speaker 3: he's you know, he's a fantastic like little brother as well,
21:51
Speaker 3: and you know he would say things like mummy, and
21:56
Speaker 3: Jacob's told me, looks very swell. I think he might
21:58
Speaker 3: need to go to the toilet. You know, when he
21:59
Speaker 3: was little well, so he used to really kind of
22:02
Speaker 3: understand and get involved. I mean now Max is nearly
22:05
Speaker 3: ten and Jacob twelve, so he's like, I'm just thinking
22:08
Speaker 3: they just ignore each other in that respect now. But
22:10
Speaker 3: MAT's very much got involved in his kind of care
22:13
Speaker 3: and understood what to look for and stuff when he
22:16
Speaker 3: was little as well. So yeah, it's just kind of.
22:19
Speaker 2: Very that's fantastic. That's so good that he's that he's
22:23
Speaker 2: so aware and that it kind of helps, I guess
22:26
Speaker 2: in a way. And another thing as well that that
22:29
Speaker 2: has sort of fascinated me a little bit about people
22:33
Speaker 2: who have they have a child with hirshbrungs and then
22:36
Speaker 2: have another child like my parents did. Were you given
22:41
Speaker 2: like the odds as such of them having another child
22:45
Speaker 2: with hirshprungs sent each way?
22:48
Speaker 3: Yeah? I mean I don't think we were given it
22:50
Speaker 3: by the team or the Hey, I think we just
22:53
Speaker 3: knew that. I think it's something like one in seven,
22:56
Speaker 3: and so the lightlihold was that we wouldn't have another
23:01
Speaker 3: child with it. But again, I know from knowing about
23:03
Speaker 3: all the families that I've read about that sometimes they've
23:06
Speaker 3: had two children and both children have got hirshbuns. But
23:09
Speaker 3: I'm sure the numbers at the times like one in seven,
23:13
Speaker 3: but it went it went up. Sorry if you had
23:15
Speaker 3: another boy, which we did, but yeah, yeah, so we
23:20
Speaker 3: kind of knew that. We I guess we knew the
23:22
Speaker 3: risk and there was a lot of a lot of
23:24
Speaker 3: talk and a lot of chatting about whether to have
23:27
Speaker 3: a second one because because of harsh buns. But yeah,
23:32
Speaker 3: we decided to just yeah and max it band doesn't.
23:35
Speaker 2: Have it fantastic. It's really good to hear, really good
23:39
Speaker 2: to hear. And I know you wanted to touch on
23:43
Speaker 2: I don't know, spoken a little bit about it early on,
23:46
Speaker 2: but you wanted to touch on sort of the mental and
23:49
Speaker 2: emotional impact of having the chronic illness and the real
23:54
Speaker 2: need for more support in that area.
23:58
Speaker 3: Yeah, I think it's something Jacob massively struggles with. So
24:03
Speaker 3: whilst I said earlier earlier on that he's a very
24:06
Speaker 3: normal two year old plays football. You know, he's a positive,
24:10
Speaker 3: He's so positive and he has so much resilience. He
24:12
Speaker 3: doesn't realize how much he does struggle with it, you know,
24:17
Speaker 3: and it has done for a long long time. And
24:21
Speaker 3: like the team all the hay that the nurse is
24:24
Speaker 3: a surgical team. The team who looks still look after
24:26
Speaker 3: him now fantastic, you know, can't fault them from a
24:30
Speaker 3: medical point of view, but I just feel as a mum,
24:34
Speaker 3: and you know, Paul would agree in my husband that
24:37
Speaker 3: there's no support for you know, like you said, it's
24:41
Speaker 3: not just hirshbum's a guess, but for children living with
24:44
Speaker 3: chronic conditions and that really do impact their everyday life.
24:49
Speaker 3: And I remember one type, you know, a couple of
24:52
Speaker 3: years ago, Jacob started having real kind of anger issues
24:55
Speaker 3: and really quite quite a character to you know, and
25:01
Speaker 3: not to go on for too long, but they got
25:02
Speaker 3: to the point where they were really distressing. He was
25:06
Speaker 3: trying to harm himself sometimes, he was upturning his bedroom
25:11
Speaker 3: and this kind of went on for a few months
25:13
Speaker 3: and myself and Paul, my husband, we at the time
25:16
Speaker 3: thought it was down to having hirshbruns and not dealing
25:20
Speaker 3: with it very well because at that point in time,
25:23
Speaker 3: things were a real struggle. He was having accidents in
25:27
Speaker 3: the day. Obviously at nighttime it was constant, like every
25:32
Speaker 3: single night he was all put two am in the
25:35
Speaker 3: show where we were changing his bedding, and it was
25:38
Speaker 3: just a real, real kind of hard on him. And
25:40
Speaker 3: it was every single day. It was relentless, really, so
25:44
Speaker 3: we just put the anger down to kind of hirshbungs.
25:47
Speaker 3: But again when I mentioned that in an appointment, there
25:51
Speaker 3: wasn't really anything. And I'm not blaming all like the
25:53
Speaker 3: doctors at that time, they didn't have a service that
25:57
Speaker 3: they could refer us to. Basically, they kind of just
26:00
Speaker 3: like we'd I don't know what to say, I don't
26:03
Speaker 3: I don't know what to do. It's not like they
26:05
Speaker 3: could go, oh, yes, Jacob's, let's refer you to this
26:07
Speaker 3: service because you're struggling to deal with this condition. There
26:11
Speaker 3: was nothing for them to refer him to. So yeah,
26:15
Speaker 3: we just had to keep going and you know, I
26:18
Speaker 3: know we might touch upon this later on, but it
26:20
Speaker 3: transpired that actually, with lots of other issues going on,
26:24
Speaker 3: Jacob was eventually diagnosed in twenty twenty three with ADHD
26:27
Speaker 3: and presents quite differently to what you would expect with
26:31
Speaker 3: his ADHD. It's what you call a mascer so in
26:34
Speaker 3: you know, outside of the home, at school, presents kind
26:37
Speaker 3: of like the perfect child, works really hard, he's academic
26:41
Speaker 3: and lots of fraens. But actually, what was really going
26:45
Speaker 3: on he was masking at every moment and when he
26:48
Speaker 3: came home that was when obviously he was erupting a
26:51
Speaker 3: bit like a bottle of FID depop, just kind of
26:54
Speaker 3: en rutting and he couldn't. And although we know, we
26:57
Speaker 3: now know that some of that one the anger with
27:01
Speaker 3: the hirsh buns, and he still is very angry. Don't
27:03
Speaker 3: get me wrong. That's not gone away. He still has
27:06
Speaker 3: evenings where he doesn't want to engage in his irrigation system.
27:11
Speaker 3: He still said, I'm not having it, and we kind
27:13
Speaker 3: of what, you know, he's twelve now, we can't force him.
27:16
Speaker 2: To have it.
27:16
Speaker 3: We can only tell him the benefits of having it.
27:20
Speaker 3: But yeah, we figured out that kind of the anger
27:22
Speaker 3: at the hirshbrungs, as well as being neuro diverse, it
27:26
Speaker 3: was just all just too much. And yeah, so once
27:30
Speaker 3: he got the diagnosis of ADHD, actually it really helped.
27:33
Speaker 3: He is medicated for that and he can regulate his
27:35
Speaker 3: emotions better, which I think it means he can deal
27:40
Speaker 3: with his hirsh bungs better. But it's not perfect. But yeah,
27:44
Speaker 3: I just really wish there was more out there to support.
27:48
Speaker 3: School were great. They did put him through some counseling
27:51
Speaker 3: at one point, and we paid for some private counseling.
27:53
Speaker 3: It didn't really work out. It was during a lot though,
27:56
Speaker 3: it ended up having to be on zoom and it
27:58
Speaker 3: just you can't get that kind of connection, I guess.
28:02
Speaker 3: But when school referred him and he had some sessions
28:05
Speaker 3: with a local charity actually they he really liked that.
28:09
Speaker 3: It was face to face and he had a good
28:12
Speaker 3: connection with the with the girl and the council called Becky,
28:15
Speaker 3: and he had Yeah, he had some support there and
28:18
Speaker 3: she kind of gave him some tools to use. But
28:21
Speaker 3: I just feel like, yeah, there's just there's not enough
28:25
Speaker 3: emotional support for children who were living with these kind
28:29
Speaker 3: of chronic conditions. And I guess that's something that I
28:31
Speaker 3: wanted to talk about a little bit. There was a charity,
28:36
Speaker 3: so Champs Appeal was a fantastic charity that existed. Unfortunately
28:41
Speaker 3: that's closed.
28:41
Speaker 2: Eye.
28:41
Speaker 3: There is still a Facebook group that's live and active,
28:45
Speaker 3: so if anyone's listening to this and they wonder, you know,
28:47
Speaker 3: is a Facebook group. There is one Chances Appeal support
28:50
Speaker 3: group and there's loads and loads and loads of parents
28:53
Speaker 3: in there who you know, have all got children with
28:55
Speaker 3: hersh funds. But I think, yeah, it's just I don't
29:00
Speaker 3: I don't know what the answer is, because we know
29:01
Speaker 3: that mental health services are at prices point anywhere in
29:05
Speaker 3: this country. So yeah, it's just something that I just
29:10
Speaker 3: wanted to kind of talk about because he has struggled,
29:15
Speaker 3: you know, he really has, and it's still not easy now,
29:17
Speaker 3: and I just kind of wanted to make sure the
29:19
Speaker 3: message was out there really that it's it's not just
29:24
Speaker 3: when they have the surgery. It's not just bit, it's
29:26
Speaker 3: not gone. And like you said earlier, for sor it
29:29
Speaker 3: might be, you know, but I would imagine that most
29:31
Speaker 3: Heirshbunk's patients have some degree of emotional kind of upset
29:36
Speaker 3: or you know, frustration or anger or physical kind of
29:40
Speaker 3: physical symptoms, which is what Jacob has as well, that
29:43
Speaker 3: impacts day to day life.
29:46
Speaker 2: Yeah, definitely, And I think that's so important to touch
29:49
Speaker 2: on and again that's why, that's why I want to
29:52
Speaker 2: get lots of different perspectives because not of it's like
29:55
Speaker 2: you said, not everybody's the same. They do go through
29:58
Speaker 2: lots of different ups, downs, challenges, etc. And I know
30:02
Speaker 2: we were talking a little bit about about Chance, and
30:05
Speaker 2: I know it's it's defunct now, but when you were
30:08
Speaker 2: sort of a part of Chance, what kind of things
30:10
Speaker 2: did they do?
30:12
Speaker 3: Yeah, so Chance was just a really good place to
30:14
Speaker 3: talk to people who were going through the same thing,
30:17
Speaker 3: you know, so you'd put you'd get in touch with someone.
30:20
Speaker 3: And actually you can still do that on the Facebook group.
30:23
Speaker 3: So you know, recently Jacob was admitted into Older Hay
30:26
Speaker 3: just this year he had suspected entry collidis again. So
30:30
Speaker 3: he has had it for three or four times and
30:32
Speaker 3: has had various kind of hospital stays with it. But
30:35
Speaker 3: you kind of sometimes question yourself because you go into
30:37
Speaker 3: a bit of panic, you know, is it is it
30:39
Speaker 3: entry clydess or is it just a bug? So even
30:42
Speaker 3: in that group, I just popped on you know, he's
30:44
Speaker 3: feeling like this is he feels, you know, like lethargic,
30:47
Speaker 3: he's got a bit of a tempt his poon's changed.
30:50
Speaker 3: What would you do and I think the support from
30:53
Speaker 3: that community, they just kind of go no, take him in,
30:55
Speaker 3: like take him in, don't, don't, kind of hesitate. So
30:59
Speaker 3: just that level of support. But in terms of the
31:02
Speaker 3: charity when it was running, it was run by another
31:06
Speaker 3: monk called Sarah, and it was fantastic. So she would
31:11
Speaker 3: arrange events for families and children with Hirshbung's disease, and
31:17
Speaker 3: there would always be a Christmas party. So all the
31:19
Speaker 3: kind of community, the Hirshbums community came together for a
31:23
Speaker 3: Christmas party. There would be Father Christmas, there would be food,
31:27
Speaker 3: and the charity would pay for the families to travel
31:30
Speaker 3: and to stay in the location of where the party was.
31:35
Speaker 3: So I think that the whole point of the fundraising
31:37
Speaker 3: was actually to bring Hirshbung's families together, so you'd got
31:41
Speaker 3: that community and that support network. She also used to
31:44
Speaker 3: organize days out, so I remember one year we went
31:48
Speaker 3: to Eureka in Halifax, and obviously the charity paid for
31:52
Speaker 3: the tickets for the family to go and again supported
31:56
Speaker 3: some families with travel if they couldn't you know, drive
31:58
Speaker 3: over there. And you know, the day was ours to
32:01
Speaker 3: go around and do what we want. But we all
32:03
Speaker 3: met at lunchtime and had a picnic and you got
32:06
Speaker 3: to kind of you know, you got to know people,
32:08
Speaker 3: and you know, I still to this day have some
32:11
Speaker 3: kind of friends you know, on social media who were
32:14
Speaker 3: from that community when we used to go to them events.
32:18
Speaker 3: So it was a really really good kind of place
32:20
Speaker 3: for support and a fantastic charity. It has, Like I said,
32:24
Speaker 3: it has no kind of closed and I understand why.
32:27
Speaker 3: You know, Sarah, her son Jacob with hers bums is
32:31
Speaker 3: kind of he's grown up and he's kind of moving
32:34
Speaker 3: on in his life, and she didn't have the support
32:36
Speaker 3: of the mum anymore. Said they passed away, so she
32:39
Speaker 3: just felt and she'd given so much, you know, she
32:41
Speaker 3: felt like the time would right to kind of shut
32:43
Speaker 3: the door on that, which is absolutely fine. But the
32:46
Speaker 3: support that she and that charity provided was superb really,
32:51
Speaker 3: So hope hopefully one day there might be something for
32:54
Speaker 3: the new families you know, coming through We need that
32:57
Speaker 3: support as well.
32:59
Speaker 2: I think, so I mean that, Sorry, there definitely is
33:02
Speaker 2: an opening in this country for the Hirshbrung's charity. I
33:06
Speaker 2: know obviously I do my work with with Reach, and
33:10
Speaker 2: there are lots of other Sorry, there are obviously lots
33:16
Speaker 2: of other charities around the world and they do bits
33:19
Speaker 2: and pieces, but just specifically for UK, there is definitely
33:26
Speaker 2: an opening for a charity, and obviously it is very
33:30
Speaker 2: much needed as well in terms of all all all
33:34
Speaker 2: charities needed. But yes, definitely a Hirshbrung's charity. Of there's
33:38
Speaker 2: somebody listening that wants to start opening up a charity,
33:41
Speaker 2: it will it will be, it will be very much needed.
33:45
Speaker 2: And I think also, I know we were talking as
33:48
Speaker 2: well off air, you know, about charities, and that we'd
33:51
Speaker 2: both be willing to support somebody if they had the
33:55
Speaker 2: idea and wanted to go right, you know, I want
33:58
Speaker 2: to do this chat or make this charity. I think
34:01
Speaker 2: that there would definitely be the support from people like
34:04
Speaker 2: us and lots of other people that I know and
34:07
Speaker 2: have interviewed as well that would be very happy to
34:10
Speaker 2: lend a hand. But I think, yeah, I think definitely
34:16
Speaker 2: definitely very much needed. And as we work sort of
34:19
Speaker 2: towards the back end of this, I'd like to talk
34:22
Speaker 2: a little bit about Jacob now and how he sort
34:27
Speaker 2: of I know you talked to him about his ADHD
34:30
Speaker 2: and hyper focus and but he's also very very much
34:34
Speaker 2: into football.
34:35
Speaker 3: Isn't he. It's a massive Yeah, it's massive into football.
34:39
Speaker 3: That is. We always wondered throughout his childhood why he
34:43
Speaker 3: had obsessions with different things. And you know, children do
34:48
Speaker 3: get kind of focused on certain toys of characters, but
34:53
Speaker 3: it was always the extreme with Jacob. He could, you know,
34:56
Speaker 3: he could name the Star Wars characters, every single one.
34:59
Speaker 3: At the age of like two, I think he was
35:02
Speaker 3: younger than two. He got obsessed with Indiana Jones for
35:06
Speaker 3: like a year, I mean Indiana Jones at the age
35:08
Speaker 3: of four, and it's because he watched the film once
35:11
Speaker 3: with his dad and then everything was Indiana Jones. He
35:13
Speaker 3: had the outfit, he had a birthy cake. It was
35:16
Speaker 3: so as we kind of look back on things, we
35:19
Speaker 3: now realize why he, you know, has though he had
35:22
Speaker 3: those what we call hyperfocus because the ADHD brain is
35:25
Speaker 3: fantastic at focusing on kind of one thing. And the
35:29
Speaker 3: one thing that has been a constant for Jacob, and
35:31
Speaker 3: he is obsessed with is football, playing it, talking about it,
35:36
Speaker 3: playing it on the xbox. He collects match tac cards
35:40
Speaker 3: and we must have five hundred thousand match tach cards
35:43
Speaker 3: that he has in a big box and he said,
35:46
Speaker 3: you know, we're never getting rid of them. I want
35:47
Speaker 3: to be able to show my children them. So he's
35:50
Speaker 3: they're going in the loft at some point because I've
35:52
Speaker 3: got to keep hold of them. And he's a massive
35:54
Speaker 3: Aston Villa fan. So you know, we go as much
35:57
Speaker 3: as we can because we live up in Lancashire, we
35:59
Speaker 3: have family in Birmingham, so we do try and get
36:02
Speaker 3: to the games when we can. But yeah, so he's
36:06
Speaker 3: kind of still, twelve years later, obsessed with football. He's
36:09
Speaker 3: always been massively into it and he does go through
36:12
Speaker 3: phases and again now we know why he has these phases.
36:16
Speaker 3: So he is he throws everything into like a new hobbit,
36:20
Speaker 3: or he throws everything into doing something and sometimes after
36:23
Speaker 3: a week he's done with it. And he does that
36:26
Speaker 3: with food as well. So recently he's taken up, let's
36:30
Speaker 3: say taken up. He's got into fishing again, typical Jacob.
36:34
Speaker 3: Just as the weather's changing and getting a bit nasty,
36:36
Speaker 3: he decided he wants to do fishing and he's kind
36:40
Speaker 3: of been doing that quite regularly. But I know and
36:43
Speaker 3: Paul knows that at some point that will stop. And
36:46
Speaker 3: the rod that he bought himself out of his birthday
36:48
Speaker 3: money will just sit in the garage for the kind
36:51
Speaker 3: of well forever. So yeah, the height, he does have
36:54
Speaker 3: a lot of the hyper focus. But obviously to some
36:57
Speaker 3: extent it can be really great because it needs it
36:59
Speaker 3: gets really good things and you know, and in terms
37:02
Speaker 3: of like school and things, that's real positive. But it
37:05
Speaker 3: does mean that you have to be patient because he
37:08
Speaker 3: does switch quite a lot. And then the food isshoes.
37:11
Speaker 3: I'll touch upon the food isshoes as well, because that's
37:13
Speaker 3: kind of pertinent to hit harsh bruns. And one thing
37:16
Speaker 3: I think my husband wanted to kind of talk about
37:19
Speaker 3: was that when we talked to earlier about kind of support,
37:23
Speaker 3: there was never any support with food eater, Like I
37:25
Speaker 3: didn't know what he would be able to eat or
37:28
Speaker 3: what he couldn't eat. And again for some harshbrun children
37:31
Speaker 3: they can eat whatever. But we know we knew from
37:35
Speaker 3: early on that Jacob with dairy, he was very intolerant
37:38
Speaker 3: to dairy. So if he if ice cream or he
37:43
Speaker 3: had proper milk, harry his milk, his bowel habits would
37:48
Speaker 3: change and would be worse than ever. And obviously he
37:52
Speaker 3: lives without a coalon so he still is very very
37:55
Speaker 3: kind of liquid anyway, So when he has dairy, it's
37:58
Speaker 3: just it's just so much worse. So we tried to
38:02
Speaker 3: push for some support with food issues, but there wasn't
38:06
Speaker 3: really much there. At one point we got an appointment
38:08
Speaker 3: with a gastroentologist who kind of advised that you follow
38:12
Speaker 3: a low fiber diet in the sense that kind of
38:14
Speaker 3: he doesn't need fiber because he goes enough to the
38:17
Speaker 3: toilet as it is, so try and avoid fiber. So
38:20
Speaker 3: we followed like a loan Redidude diet, which is really
38:23
Speaker 3: challenging because actually it's things like you know, like a
38:26
Speaker 3: lot of fruit and vegetables obviously have that fibering and
38:29
Speaker 3: they were almost saying avoid it, avoid brown bread, avoid
38:33
Speaker 3: kind of like cereal, breakfast cereal, because it will make
38:38
Speaker 3: it will make symptoms worse. So food was always a
38:41
Speaker 3: bit of a challenge as well. And then when he
38:44
Speaker 3: started presenting more with his ADHD symptoms, I'll be honest,
38:47
Speaker 3: food is the bane of my life. Because he now
38:51
Speaker 3: has limited his foods to I could probably tell you
38:54
Speaker 3: about ten foods that he will eat, and again he
38:57
Speaker 3: gets that hyper focus with them as well. So last
39:00
Speaker 3: week he was obsessed with eating the daily like daily
39:04
Speaker 3: packs with crackers and hamming, and I was like, oh good,
39:07
Speaker 3: another food, so I stocked up. So we've got like
39:09
Speaker 3: ten in the fridge and then five days later so
39:12
Speaker 3: I don't want them any more, doul. And it's really
39:14
Speaker 3: hard because as a mummy and dad, you just want
39:16
Speaker 3: to go it's not wasting all money piculason. But obviously
39:21
Speaker 3: you've got to be sympathetic that it is part of
39:24
Speaker 3: his ADHD. And he's also got challenge with food from
39:27
Speaker 3: his hirsh buns as well, so it's food has been
39:31
Speaker 3: a real challenge and still is very much like I said,
39:33
Speaker 3: the bain of my life. Planning what we're going to
39:35
Speaker 3: eat in a week is really difficult. I just have
39:38
Speaker 3: to roll take like literally three meals for Jacob and
39:41
Speaker 3: we have to just accept that that's the way it is.
39:45
Speaker 3: And it's really hard when you're parents and you're trying
39:48
Speaker 3: to make sure they eat healthily and you're trying to
39:50
Speaker 3: get nutritious food. But his ADHD means that he struggles
39:54
Speaker 3: with sensory issues and part of that sensory issue is
39:57
Speaker 3: food and has his safe foods and it's yeah, it's tricky.
40:03
Speaker 3: So yeah, so it's navigating Hairshbrugs' ease with Adhd has
40:08
Speaker 3: been a real charrange, yes, and I think sometimes that's
40:12
Speaker 3: why you can be quite resistant to his irrigation. So
40:17
Speaker 3: he does have irrigation at night. And I was saying
40:20
Speaker 3: earlier before we came on the podcast that most nights
40:24
Speaker 3: now he is okay with it, but some nights he
40:27
Speaker 3: just isn't. He just can't accept in his head why
40:31
Speaker 3: he's having it, why he's having to do it. It's
40:34
Speaker 3: not fair, it's not right, So therefore I'm not doing it,
40:37
Speaker 3: and we just have to kind of let him navigate
40:39
Speaker 3: that himself now because he's twelve, and we just have
40:42
Speaker 3: to try and persuading that actually the result of having
40:46
Speaker 3: it means that you can sleep all night. Yeah, essentially. Yeah,
40:51
Speaker 3: so it's been an interesting couple, Yeah, to say the least.
40:56
Speaker 2: Absolutely, But I think again, you talk about a lot
41:00
Speaker 2: of things that people will have gone through before, and
41:06
Speaker 2: I know obviously when I had to do the washouts
41:09
Speaker 2: and whatnot from the age of nine to about fifteen,
41:13
Speaker 2: that sort of twelve thirteen fourteen period, it is really tough.
41:16
Speaker 2: You know, you just don't want to do it. You know,
41:18
Speaker 2: but but you kind of have to otherwise there'll be
41:21
Speaker 2: further problems down the line, and you kind of have
41:23
Speaker 2: to accept it, but you don't really want to accept it.
41:26
Speaker 2: And it's it is. It is very tough, and he.
41:30
Speaker 3: Knows that he knows it benefits him, but then we
41:32
Speaker 3: also knows that his friends don't have to do it. Wow,
41:36
Speaker 3: he's been and this is where the anger comes and
41:38
Speaker 3: the frustration and the upset. You know, there's nights when
41:41
Speaker 3: he cries because it's and this is the challenging bit
41:46
Speaker 3: of persons that kind of did want to like like
41:48
Speaker 3: what wants to come on and talk about, because it's
41:51
Speaker 3: that frustration when they read things that they've had the
41:53
Speaker 3: pull through surgery and everything'snkidori well for some it's not.
41:57
Speaker 3: And it's not that we want to shout that out
41:58
Speaker 3: to the world, but I want all the pair and
42:00
Speaker 3: to be aware of some of the challenges you might
42:02
Speaker 3: face down the line. So you pubbler or your baby
42:05
Speaker 3: might be doing really well now because they're in nappies,
42:08
Speaker 3: but it might be that you know, down the line,
42:10
Speaker 3: there are after the struggles. And I just think having
42:12
Speaker 3: that real open and honest conversation about it is just
42:15
Speaker 3: being a better prepare people things cost the world, be
42:18
Speaker 3: any issues for them maybe, you know.
42:21
Speaker 2: Yeah, No, I think you've done a fantastic job in that.
42:26
Speaker 2: And that's that's the thing as well. That's why I
42:29
Speaker 2: want so many different stories, you know, because there are
42:33
Speaker 2: so many different things out there, There are so many
42:35
Speaker 2: different types, there are so many different stories, There are
42:39
Speaker 2: so many different things that people go through, and I
42:43
Speaker 2: think I think it's fantastic to highlight all of that.
42:47
Speaker 2: And again it can be it's not necessarily something that
42:49
Speaker 2: people want to you know, go through or anything like
42:54
Speaker 2: that or even talk about to some extent. So I
42:57
Speaker 2: commend you highly on coming on and and chatting about
43:01
Speaker 2: this because I think it's it's it's fantastic to highlight.
43:05
Speaker 2: And just just very quickly before we wrap up in
43:09
Speaker 2: terms of and he said, Jacob doing doing really well
43:13
Speaker 2: at the moment and long way that continue. In terms
43:17
Speaker 2: of sort of the future looking like obviously of times
43:21
Speaker 2: it can be very uncertain, it has to we know that.
43:25
Speaker 2: But what would you like to see sort of the
43:27
Speaker 2: Jacob in the future.
43:32
Speaker 3: I guess you just you just want him to be happy,
43:35
Speaker 3: aren't you, And that saying's cheap. But I just want
43:38
Speaker 3: him to be able to lead a normal life, you know,
43:40
Speaker 3: And we're trying to kind of like going back to
43:42
Speaker 3: when we spoke earlier about you know, having a sleepover,
43:45
Speaker 3: that he can have a friend sleepover, or he can
43:48
Speaker 3: go to his mate's house as he gets a bit older,
43:50
Speaker 3: and if he still needs to use an irrigation system,
43:53
Speaker 3: he can just pop a onto the toilet do it himself,
43:56
Speaker 3: and you know, everything's fine, and and he he sees
44:00
Speaker 3: that treatment as his part and parcel of his everyday life.
44:04
Speaker 3: But I understand that that's we get that that's really difficult.
44:07
Speaker 3: And obviously we just want him to go on and
44:10
Speaker 3: do really well at school and get a good job
44:12
Speaker 3: and you know, do whatever he wants if he gets older,
44:15
Speaker 3: and I think he will, like I don't. I don't
44:17
Speaker 3: sit here and think, oh, it's going to stop him
44:19
Speaker 3: from doing anything. He absolutely won't stop him from doing anything.
44:24
Speaker 3: I guess my uncertain thing at the moment is whether
44:28
Speaker 3: he will continue working well, continue with the bowl washouts,
44:32
Speaker 3: and he might get to a point where he doesn't
44:34
Speaker 3: need them. You know. I know you said you stopped
44:36
Speaker 3: at fifteen, but not long ago. The doctor, the older Hay,
44:41
Speaker 3: because we were having that much difficulty. In fact, it
44:43
Speaker 3: was old last year basically said we've got this last
44:46
Speaker 3: thing to try, or he can have a stonema. And
44:49
Speaker 3: he literally said, we can book him in now if
44:52
Speaker 3: if we think that a stona will give him the
44:53
Speaker 3: better quality of life, we can book him in now.
44:57
Speaker 3: And obviously I was like, oh, it was quite sure.
44:59
Speaker 3: I was quite shot that they would do it that quickly.
45:02
Speaker 3: But I think we've been to lots of appointments prior
45:04
Speaker 3: to that, and we tried lots of different things and
45:07
Speaker 3: nothing was really helping or working. But Jacob didn't want
45:12
Speaker 3: to he want, you know, he didn't want a stoma
45:13
Speaker 3: and he still doesn't really want a stoma. And the
45:17
Speaker 3: irrigations are helping massively. So I think it's for me.
45:22
Speaker 3: We just need him to understand. And I think it's
45:25
Speaker 3: just a bit of immaturity. Yeah, you know, he's only
45:27
Speaker 3: just turned twelve. That some people have to have medicine
45:33
Speaker 3: and this form of medicine, My husband has to have
45:35
Speaker 3: medicine every day, And he tried to say that it's
45:38
Speaker 3: just a different form of medicine and if that medicine
45:40
Speaker 3: helps you day to day and function normally. Then it's
45:44
Speaker 3: absolutely okay, and he takes his ADHD medication, you know,
45:49
Speaker 3: with no problem, because I suppose it's a tablet and
45:52
Speaker 3: it's gone, and he knows how that helps him and
45:54
Speaker 3: supports him. We just need him to accept that his
45:57
Speaker 3: irrigation is doing the same thing in a different way.
46:02
Speaker 3: So yeah, I guess the future, it would be brilliant
46:05
Speaker 3: if he could stop the irrigations and then you know,
46:08
Speaker 3: everything is kind of functions normal and he doesn't have
46:11
Speaker 3: accents and he doesn't have problems in the night, and
46:14
Speaker 3: that might come. I guess that's the problem with hersh runs.
46:16
Speaker 3: It's literally like a bumpy road. It's never ever straightforward.
46:22
Speaker 3: You think you've cracked it. And we've been through this
46:23
Speaker 3: so many times. You think you've cracked it, we've sorted it.
46:26
Speaker 3: It can come out of pull ups and then boom,
46:29
Speaker 3: it all just goes to pot again. So we're very
46:32
Speaker 3: much kind of aware that, yeah, they're still a long
46:35
Speaker 3: road ahead, but it looks better at the moment. You know,
46:38
Speaker 3: you can kind of see a light at the end
46:40
Speaker 3: of the tunnel. So hopefully by the time he gets
46:43
Speaker 3: the kind of fifteen sixties seventeen you know, we might
46:47
Speaker 3: he might be in a position whereas he can cut,
46:49
Speaker 3: he can move away from the irrigation like you did,
46:51
Speaker 3: and you.
46:52
Speaker 2: Know, but we just don't know a guess. Absolutely absolutely well.
46:56
Speaker 2: I wish all of you yourself, Jacob, Paul, and I
46:59
Speaker 2: see you have a lovely dog in the background as well,
47:01
Speaker 2: my home monkey. Well, I wish thank you so much
47:09
Speaker 2: for coming on, sharing a story, sharing Jacob's story, and
47:13
Speaker 2: I wish you all all the best in the future.
47:16
Speaker 3: No, thank you for having me, thank you, thank you
47:22
Speaker 3: for listening to the podcast.
47:23
Speaker 1: Find us on Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen
47:28
Speaker 1: to previous episodes on Spotify by searching Tom's Hirshbrung's Podcast