Latest / Tom's Hirschsprung's Podcast / Episode 70 - With Tash Jacobs (Part 2)

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Episode 70 - With Tash Jacobs (Part 2) · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprun's podcast, where our provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode seventy of Tom's Hirshbunks podcast. I'm delighted to once
0:45
Speaker 1: again be joined by Tash Jacobs for part two of
0:50
Speaker 1: your episode talking about your sons who have hirshprungs and
0:54
Speaker 1: welcome back to Ash. Hey nice, thank you, thanks so
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Speaker 1: much for covering on explained a lot of the medical
1:01
Speaker 1: side in part one about If anybody hasn't listened to that,
1:07
Speaker 1: please go back listen to that. It's a fascinating story
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Speaker 1: where you travel or across to Italy via Manchester via Liverpool,
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Speaker 1: is a lot of traveling involved and a really really
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Speaker 1: good medical side. For this part, we're going to talk
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Speaker 1: obviously a little bit more medical as well, but also
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Speaker 1: we're going to talk a little bit more about lifestyle,
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Speaker 1: how life is now, various topics including traveling and traveling
1:34
Speaker 1: with a STONMA I think will be really really important
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Speaker 1: for people to hear as well. So I guess we'll
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Speaker 1: kind of start start from the beginning in terms or
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Speaker 1: start from now, sorry sort of, how is life now
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Speaker 1: for your two boys?
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Speaker 2: Yeah, so obviously Tyler and Casey are seven and five.
2:00
Speaker 2: In terms of their Hirschbrungs disease, everything's pretty stable. So Tyler,
2:07
Speaker 2: he he doesn't have a stoma, but he obviously does
2:13
Speaker 2: have his challenges, but we've learned to manage them. Like
2:19
Speaker 2: he's very aware of everything, and he manages everything amazingly.
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Speaker 2: Obviously there's been a lot of trial and error over
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Speaker 2: the years in terms of diet, what can trigger him,
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Speaker 2: what what doesn't trigger him, and we we've also become
2:36
Speaker 2: aware of things like even if he has a cold,
2:38
Speaker 2: it can trigger him. So I just think it's a
2:42
Speaker 2: case of completely managing all of that for him, always
2:45
Speaker 2: being completely prepared for him. And he plays football. He
2:50
Speaker 2: loves playing football. So it's just a case of making
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Speaker 2: sure he's he's been to the toilet, really making sure
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Speaker 2: he's emptying himself. And he's so good at that. He'll
3:02
Speaker 2: literally just he'll go to the toilet and he does
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Speaker 2: that twice a day. He has his routine and that's
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Speaker 2: what it does, that's what he does. So he I mean,
3:12
Speaker 2: he's amazing really, like I'm yeah. I think he's the
3:16
Speaker 2: way he just goes with it as such a young
3:19
Speaker 2: age to be so aware of it and just he
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Speaker 2: just cracks on. He's not bothered, and you know, it's fine,
3:26
Speaker 2: and he knows what he can eat, what he can't eat,
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Speaker 2: what he should avoid, and he's so switched on with
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Speaker 2: that as well. So I know that when I see
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Speaker 2: people write in these Facebook groups and they ask questions
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Speaker 2: about like long term, because when you're initially given the diagnosis,
3:45
Speaker 2: your baby is so new, they're like a few days old.
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Speaker 2: So I think I just want to show people that
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Speaker 2: I was in that boat with Tyler, and it does
4:00
Speaker 2: get better, and they they just it becomes it becomes
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Speaker 2: normal to you have the whole family. You learn what
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Speaker 2: they can eat, what they can't eat, what agrees with them,
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Speaker 2: what doesn't agree with them, and you can live a
4:15
Speaker 2: completely normal life like you might have this diagnosis. But
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Speaker 2: he plays football, he goes to school every day, He
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Speaker 2: does absolutely everything that any other child of seven does,
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Speaker 2: and it just hasn't you know, it doesn't impact as
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Speaker 2: long as you've got it all under semi control, you know,
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Speaker 2: I just there's no Yeah, obviously, Casey is five he
4:43
Speaker 2: lives with a stoma. He has lived with a STMA
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Speaker 2: since he was nine months old, so he doesn't know
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Speaker 2: any different. He's obviously also autistic. So I manage everything
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Speaker 2: for him, well, me and my husband, We manage everything
4:58
Speaker 2: for him with his stoma in terms of emptying it,
5:02
Speaker 2: changing his bag and everything. But he's amazing with that
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Speaker 2: as well. He knows when it's full, he knows when
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Speaker 2: it needs emptying, he knows to just lie still while
5:14
Speaker 2: we change his bag and everything. So in terms of
5:19
Speaker 2: like day to day management with both of them, if
5:23
Speaker 2: we were to go out for the day, some people
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Speaker 2: might think, oh my gosh, that's so daunting, like just
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Speaker 2: to even go out for the day, but it really isn't.
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Speaker 2: As long as you're prepared. You have extra STMA supplies
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Speaker 2: for Casey, you know, just make sure Tyler knows exactly
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Speaker 2: what he should be eating what, you know, just extra everything.
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Speaker 2: It's fine and we all live a completely normal life.
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Speaker 2: I just think people get so worried when they hear
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Speaker 2: the word stona, like what am I going to do?
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Speaker 2: Where am I going to go? Am I going to
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Speaker 2: be locked away forever? And it's really just so not
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Speaker 2: the case. So Yeah, that's our day to day really
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Speaker 2: always have extra sort of Casey had like rings that
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Speaker 2: we put around his bag, keep extra ones of those
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Speaker 2: with us in case a little leak occurs or something.
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Speaker 2: But other than that, both of them are amazing and
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Speaker 2: they just crack on and we all do together as
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Speaker 2: a family.
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Speaker 1: Yeah, that's fantastic. And you mentioned as well about you
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Speaker 1: do things very much as a family and support each other.
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Speaker 1: How important has your husband been to you in that
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Speaker 1: process as well.
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Speaker 2: As in I couldn't have got through any of it
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Speaker 2: without him. We've done everything as a team. We've done
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Speaker 2: everything together. He's always just he's always been so involved
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Speaker 2: in every decision that's ever been made, every medical appointment,
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Speaker 2: every conversation with the consultants about everything. After casey STONMA
7:00
Speaker 2: was formed, he was in hospital for about it was
7:03
Speaker 2: probably nearly two months. It was a long time, and
7:07
Speaker 2: he was there all the time. We would swap one night,
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Speaker 2: one night at home with Tyler, one night in the
7:13
Speaker 2: hospital with Casey. There was no this is your job,
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Speaker 2: you are doing that for either of us. It was
7:19
Speaker 2: literally complete team effort and obviously through a lot of
7:24
Speaker 2: the time Casey was in hospital, it was COVID as well,
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Speaker 2: so it was yes, only one parent in, one parent
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Speaker 2: out as well, but we just tag teamed it and
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Speaker 2: we always have done. And you know, I think at
7:37
Speaker 2: first my husband struggled with changing his Stonma bags, but
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Speaker 2: he rarely put the effort in, like he was determined
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Speaker 2: that he was going to be able to do this
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Speaker 2: and do it and he yeah, you know, we we
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Speaker 2: sort of split. He does half the week changing Casey stonebag.
7:55
Speaker 2: We always want to make sure both of us are
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Speaker 2: doing it for him and everything. So yeah, I just
8:02
Speaker 2: think it's really important. I think it's important like that
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Speaker 2: all couples to just always lean on each other when
8:07
Speaker 2: you're going through this sort of thing. Obviously we've also
8:12
Speaker 2: had Casey's autism to handle as well on top of
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Speaker 2: it all, but I think just leaning on each other
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Speaker 2: and having that constant support is massive. I don't think
8:23
Speaker 2: I would be able to go out for the day
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Speaker 2: and be able to do all these things if I
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Speaker 2: didn't have him there with me, And I think vice versa.
8:31
Speaker 2: That we've done. We've been to some mate on some
8:34
Speaker 2: amazing holidays with the boys and does some things that
8:37
Speaker 2: I think people think when when we first said we
8:39
Speaker 2: would do some of these things. They're like, what how
8:41
Speaker 2: can you go all that way? And blah blah blah.
8:44
Speaker 2: But yeah, I don't think I would have been able
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Speaker 2: to without him and him without me.
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Speaker 1: Yeah. Yeah, it's very much a partnership, isn't it. Yeah, No,
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Speaker 1: I think I think that's excellent. I think that's really
8:58
Speaker 1: good that you mentioned that as well, because that I do,
9:01
Speaker 1: as we talked a little bit off air, I do
9:03
Speaker 1: talk to a lot of mothers, probably to the seventy
9:06
Speaker 1: eighty mothers. I don't get to talk to a lot
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Speaker 1: of fathers as well. But it is important to put
9:12
Speaker 1: both sides across and the fact that it is a
9:17
Speaker 1: very much a partnership between the both of you and
9:19
Speaker 1: for a lot of couples out there. And I think
9:22
Speaker 1: that's that's such an important point you make. You mentioned
9:26
Speaker 1: about holidays as well. You've been on some wonderful, lovely holidays.
9:31
Speaker 1: In terms of traveling, I know you mentioned a little
9:34
Speaker 1: bit about how important it is to prepare and how
9:39
Speaker 1: important it is to just sort of I think you
9:43
Speaker 1: sort of for the worst case scenario in terms of
9:47
Speaker 1: your sort of so if you were to go on
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Speaker 1: holiday for a week, et cetera. For for example, what extra
9:55
Speaker 1: things would you need to think about? It would be more.
10:03
Speaker 2: So Casey. He has a stoma, and the big thing
10:08
Speaker 2: with Casey is that he is so susceptible to stomach bugs.
10:13
Speaker 2: If he was to catch anything, I would say, there's
10:17
Speaker 2: probably a ninety percent chance he would end up hospitalized
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Speaker 2: due to excessive stona losses. So whenever we're going away,
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Speaker 2: it might sound extreme to some people, but I make
10:32
Speaker 2: sure that we know where the local hospital is. I
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Speaker 2: just think it's really useful to just be prepared, have
10:37
Speaker 2: your worst case scenario in your head. So I mean,
10:42
Speaker 2: obviously that is the worst case scenario, So that would
10:44
Speaker 2: be the first thing I'd do, would be like, is
10:45
Speaker 2: there a decent hospital where if something was to happen,
10:51
Speaker 2: I would be able to take him there? That would
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Speaker 2: always be my first thing. I wouldn't go to a
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Speaker 2: country where I thought that that wouldn't be an option. Really. Also,
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Speaker 2: you just have to make sure you've got all the
11:04
Speaker 2: stona supplies. With having a stoner, you are eligible to
11:08
Speaker 2: have additional allowances in your luggage. I would always make
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Speaker 2: sure I have one hand luggage suitcase completely filled with
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Speaker 2: absolutely everything, like over the top, Like if I'm going
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Speaker 2: for seven days, I would probably have thirty stoner bags
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Speaker 2: with me. I always make sure I've just got way
11:28
Speaker 2: more than needed. Just you just never know what eventualities
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Speaker 2: might happen. You could be delayed, you could you know,
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Speaker 2: you just don't know. So I always just make sure
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Speaker 2: I've got absolutely extra extra extra bags can pop in
11:40
Speaker 2: the day and then you need another one. I yeah,
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Speaker 2: I literally feel a full suitcase full of everything. All
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Speaker 2: his medications, I take two of I take everything, and
11:51
Speaker 2: then it's it's kind of like a like for like
11:54
Speaker 2: for being at home. Really you there's no difference. Like
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Speaker 2: I mentioned these Facebook groups that you see scared worried parents,
12:04
Speaker 2: which is totally understandable that I was the same, and
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Speaker 2: they writ in them like can I go on holiday
12:10
Speaker 2: with my child that has a stoma? And I'm just
12:13
Speaker 2: like absolutely yes, Like just do what you're doing in England,
12:18
Speaker 2: just wherever it wherever it is that you're going, and
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Speaker 2: make sure you've got everything, make sure you're completely prepared
12:24
Speaker 2: if you really you know, I'm maybe I'm a little
12:27
Speaker 2: extreme looking at hospitals, but if it gives you that
12:31
Speaker 2: extra bit of security, why not. And then just go
12:35
Speaker 2: and enjoy yourself. I'm also use these wipes for Casey.
12:41
Speaker 2: I looked up wipes that kill neurovirus. Be prepared then, yeah,
12:47
Speaker 2: so I literally wipe everything to make sure. But yeah,
12:54
Speaker 2: so you just got to just make sure you're extremely prepared.
12:56
Speaker 2: And the same with Tyler. I just make sure we've
12:59
Speaker 2: got every day, I take snacks with me that I
13:01
Speaker 2: know that they both can handle. And yeah, just complete,
13:06
Speaker 2: just be prepared and just have everything with you and
13:10
Speaker 2: enjoy yourselves basically, And I just think I want people
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Speaker 2: to know that even if your children have this disease,
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Speaker 2: you can still live a normal life and still do
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Speaker 2: everything that everyone else does.
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Speaker 1: Yeah. No, I think that's so important. And we definitely
13:25
Speaker 1: come from the same thought process in that sense that yes,
13:32
Speaker 1: you will go through surgery or possibly surgeries certainly when
13:37
Speaker 1: you're younger and maybe when you're throughout your life as well,
13:41
Speaker 1: but there's still so much that can be achieved while
13:45
Speaker 1: still having hirshprungs. It's not to say that there won't
13:48
Speaker 1: be tricky points along the way. It's not like to say,
13:53
Speaker 1: as in you said, you know, you have to just
13:54
Speaker 1: be a little bit extra prepared or a lot extra
13:57
Speaker 1: prepared for what might arise. But as you said, Tyler
14:03
Speaker 1: plays a very high level of football whilst having sairchbrungs.
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Speaker 1: There's nothing stopping him doing that, which is which is
14:13
Speaker 1: so good to see. And I guess as well, a
14:16
Speaker 1: lot of people who listen to this podcast based on
14:20
Speaker 1: the stats and analytics that I have a lot of
14:23
Speaker 1: people are mothers with young children who will, as you said,
14:31
Speaker 1: have those concerns. You know, if you have a six
14:33
Speaker 1: month old or one year older, two year or whatever
14:35
Speaker 1: it might be, you will have those concerns. And I
14:40
Speaker 1: think it's so nice to hear somebody who's gone through that,
14:45
Speaker 1: like yourself, to say, actually, so long as you, you know,
14:49
Speaker 1: do a B and C should be you know, relatively normal.
14:54
Speaker 1: And I think that's that's really really good to hear.
14:57
Speaker 1: And I think fairly reassure for the amount of messages
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Speaker 1: I get sort of per week from people wanting really,
15:06
Speaker 1: I know, obviously you can't have one hundred percent reassurance,
15:09
Speaker 1: and I'm never saying that you know, everything's gonna be
15:11
Speaker 1: fine if you do A B and C, but it
15:14
Speaker 1: is so good to hear people out there who are
15:19
Speaker 1: cracking on with life and doing really really well, which
15:23
Speaker 1: is which is fantastic. I know we mentioned a little bit.
15:28
Speaker 1: You mentioned a bit about Tyler's football and how well
15:33
Speaker 1: he's going on with his football, and he plays at
15:37
Speaker 1: a really high level. You said as well, Yeah, he.
15:39
Speaker 2: Plays for a decent team in Manchester, plays for like
15:42
Speaker 2: a grassroots team. He loves it. So yeah, he does
15:49
Speaker 2: like torn like Manchester tournaments and you know they he
15:54
Speaker 2: just cracks on. He just plays. He goes to his
15:56
Speaker 2: training once a week. He plays in his team on
15:59
Speaker 2: a sudden day. But like as far as everyone else
16:04
Speaker 2: on the team's concerned, no one would know what goes
16:08
Speaker 2: on behind the scenes with him. He just cracks on.
16:10
Speaker 2: He's absolutely fine. He's I mean, to be fair to
16:14
Speaker 2: an extent. Obviously, we've talked to Tyler about it. He's
16:17
Speaker 2: seven and a half. He's fully aware of everything. We've
16:20
Speaker 2: got loads of books about Hirshbronce. We've got the Oscar book. Yes,
16:28
Speaker 2: like he loves that story and like he took it
16:31
Speaker 2: to school. I think when he was the younger to
16:33
Speaker 2: like show people like this is what me and my
16:35
Speaker 2: brother have. So yeah, so I mean, I don't think
16:41
Speaker 2: he realizes it's just becomes so normal to us that
16:46
Speaker 2: I don't even think he thinks it's like a big deal.
16:49
Speaker 2: To be honest, He's just like, yeah, is like fine,
16:53
Speaker 2: is what it is. And I think that's great. I
16:57
Speaker 2: think it's amazing, and yeah.
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Speaker 1: No, it's excellent. It's very similar to me. I guess
17:04
Speaker 1: in a way that I played football, cricket, everything, and
17:08
Speaker 1: not once did it ever really cross my mind that
17:10
Speaker 1: I have Hirshbrungs disease. You know, I wasn't. I wasn't
17:14
Speaker 1: playing football and then thinking oh, what if I go
17:16
Speaker 1: in for this slide tackle and whatever. I just went
17:19
Speaker 1: for it. You know, it's it's you can't I guess
17:24
Speaker 1: let it, you know, stand away and you think, oh
17:27
Speaker 1: what if I overrun this? What if I do that?
17:29
Speaker 1: What if I do this? Just go for it. And
17:32
Speaker 1: that's so so good to hear that that he doesn't
17:35
Speaker 1: have that sort of worry in the back of his mind,
17:37
Speaker 1: that he's going, oh, well, what if what if the
17:39
Speaker 1: ball hits my stomach or what if this that the other?
17:43
Speaker 1: And I guess so again. I talked to a lot
17:46
Speaker 1: of parents who have children coming up for sort of
17:48
Speaker 1: school age and whatnot. Did you ever have to make
17:53
Speaker 1: sort of the coach aware of his hirshbrungs or how
17:56
Speaker 1: did you.
17:57
Speaker 2: If I mentioned it? But that's it. I mean, school
18:02
Speaker 2: obviously are a lot more aware of it, and we've had,
18:05
Speaker 2: you know, had to sort of explain. It's so difficult though.
18:10
Speaker 2: You tell these teachers about said like what it's like
18:14
Speaker 2: groans and it's like, well, no, it's not. So. I mean, yeah,
18:19
Speaker 2: we've had to tell anyone, you know, any team he's on,
18:23
Speaker 2: it's always something. You know, they always say, like he've
18:25
Speaker 2: got any medical conditions. That's always a question that's asked,
18:28
Speaker 2: isn't it on these So it is something we've always
18:31
Speaker 2: had to mention. But I think the positive thing with
18:35
Speaker 2: Tyler is he's very self sufficient. So if you were
18:38
Speaker 2: to turn around to him and say what do you need,
18:41
Speaker 2: he'd just tell you. So I've never really had to
18:45
Speaker 2: step in that often. He's very self aware of self sufficient,
18:49
Speaker 2: and like I said, he just I just don't think
18:52
Speaker 2: he thinks it's a big deal. Like I spoke to
18:54
Speaker 2: him about speaking on this podcast, and I don't think
18:59
Speaker 2: he he was just like, oh right, okay, cool, Like
19:01
Speaker 2: you're going to talk about hershbrunk, Like yeah, I don't
19:03
Speaker 2: think he saw it as this, like I can't explain.
19:07
Speaker 2: It's just not even more normal to him that him
19:10
Speaker 2: and his brother habit. So you're weird if you don't
19:14
Speaker 2: have that kind of thing.
19:17
Speaker 1: Definitely we'll go with that. Yeah, oh that's good. That's good.
19:24
Speaker 1: He didn't ask why is there a guy doing a
19:26
Speaker 1: podcast about something so rare?
19:29
Speaker 2: No, it never really I was just like, well, this
19:32
Speaker 2: this could be you in the future. I was like,
19:34
Speaker 2: you know, he's like you, he's just older and he
19:37
Speaker 2: just wants to talk about it and raise awareness. And
19:40
Speaker 2: he just was like, Okay, cool, great, that's that's really cool.
19:44
Speaker 1: I was just kind of no, that's cool, excellent, But
19:48
Speaker 1: that's really good. And again, so reassuring to hear that
19:52
Speaker 1: you have a child just kind of just cracks on,
19:54
Speaker 1: you know, does his football, does his school, And like
19:57
Speaker 1: you said, so long as that preparation is there, you
20:02
Speaker 1: sort of go to toilet in advance and then you
20:05
Speaker 1: carry on with life. That is so just so so
20:08
Speaker 1: good to hear, really good to hear. I want to
20:11
Speaker 1: talk a little bit about Casey as well, because you
20:15
Speaker 1: mentioned that Casey has his stomach. Yeah, and again, it
20:21
Speaker 1: is very much individual. Some have a reversal and then
20:26
Speaker 1: maybe have a stoma later. Some have reversal never have
20:31
Speaker 1: a STMA. Again, you mentioned that Casey had his stoneA
20:35
Speaker 1: at nine months and still has his stoma.
20:38
Speaker 2: Now, yeah, that's right. So obviously in the first part
20:46
Speaker 2: of this I talked about how we went to Italy,
20:49
Speaker 2: there were complications in Italy, and then from about three
20:54
Speaker 2: months old to nine months old, it was it was
20:58
Speaker 2: a lot I think. I mean, now, when I read
21:03
Speaker 2: obviously like the Facebook groups, people go to them in
21:05
Speaker 2: a panic, like my child's now got to have this,
21:07
Speaker 2: What do I do with anyone had it before? And
21:09
Speaker 2: I read that, I'm like, wow, I had did all
21:10
Speaker 2: of these things with Casey. So like we had to
21:13
Speaker 2: do botox, just everything. He was just extremely constipated. Still,
21:19
Speaker 2: he was just not really thriving and anything. He was
21:23
Speaker 2: just going entricolitis all the time. And so it got
21:27
Speaker 2: to the point where a stone had to be formed,
21:29
Speaker 2: and during that operation they actually rebuyopsied him to see
21:33
Speaker 2: that he was still living with hirshbrus disease. So the
21:36
Speaker 2: initial well, I mean, i'd say had two pull throughs
21:42
Speaker 2: really in this like a couple of days. It didn't
21:47
Speaker 2: work or they missed a bit. We're not entirely sure
21:52
Speaker 2: what happened, but when they went to form the stoma
21:55
Speaker 2: at nine months old, they said that there was actually
21:57
Speaker 2: still Hirshbrungs disease on his large intestine, and they basically
22:03
Speaker 2: also told us that where this bit was it was
22:08
Speaker 2: too dangerous to remove now it could cause other problems
22:13
Speaker 2: for him. So I think they just said that that's it.
22:19
Speaker 2: I don't think there would be an option to have
22:20
Speaker 2: his stoma reversed unless they find some groundbreaking I don't
22:28
Speaker 2: know what in the future, but that's I mean, to
22:33
Speaker 2: be fair, it saved his life. He would have had
22:36
Speaker 2: absolutely no life had that not happened, had we not
22:40
Speaker 2: just said, you know what, do it. He was he
22:42
Speaker 2: was in pain all the time. He's so ill all
22:44
Speaker 2: the time. He couldn't eat, he couldn't go be hump pooh.
22:49
Speaker 2: He just couldn't do anything. So it was the best
22:52
Speaker 2: thing we ever did for him. But yeah, I don't
22:57
Speaker 2: think it will ever be reversed unless yes, I don't know.
23:01
Speaker 2: I don't Yeah, they've always just told us it's too dangerous,
23:04
Speaker 2: it's too tricky where it all falls. So that's kind
23:08
Speaker 2: of it, really, But I don't think a stonma's a
23:11
Speaker 2: big deal. I think I did when Tyler was first
23:14
Speaker 2: diagnosed and I was reading about it online. I was like,
23:17
Speaker 2: Oh my gosh, now I'm just like, I just I
23:22
Speaker 2: really don't think it's a big deal at all. And
23:25
Speaker 2: I think more and more people are out there raising
23:27
Speaker 2: awareness of it to show that it just doesn't matter.
23:31
Speaker 2: You can't see it. It's just it's yeah, it's just
23:37
Speaker 2: so not a big deal at all, and I think
23:41
Speaker 2: people get so scared about them, and I admit I
23:44
Speaker 2: was definitely one of those people. But it's not scary,
23:48
Speaker 2: and it saved his life and I'd rather have him
23:50
Speaker 2: here with a stoma, So.
23:52
Speaker 1: Absolutely absolutely, I think you're right when you say a
23:56
Speaker 1: lot of people. Look at those Facebook groups, I think,
24:00
Speaker 1: and there's sort of one two in particular. I think
24:02
Speaker 1: it's one of with about ten thousand people on it,
24:04
Speaker 1: and then there's one which is UK only with about
24:07
Speaker 1: two and a bit thousand on it, So a fair
24:10
Speaker 1: few people and a lot of people post things daily
24:15
Speaker 1: on there, but it's mainly looking for I think, sort
24:20
Speaker 1: of not necessarily answers, but looking for have people gone
24:25
Speaker 1: through the same things I have. Is this normal? You know?
24:30
Speaker 1: I mean, we all know that Hirshprungs is very rare
24:32
Speaker 1: and in a lot of cases not normal. Certainly not
24:35
Speaker 1: normal to have hirsprungs with it being so rare. But
24:39
Speaker 1: I think having that set before reassurance, I think is
24:44
Speaker 1: really important. And I think it's interesting because you said
24:46
Speaker 1: you went on there sort of initially when the children
24:50
Speaker 1: are a lot younger, looking for answers, and now you're
24:55
Speaker 1: sort of the other way around. You're the person providing
24:59
Speaker 1: the answer, I guess, and being that person who's been
25:03
Speaker 1: not necessarily saying it's this is going to be this,
25:05
Speaker 1: and this is going to be that. But you've been
25:08
Speaker 1: through some similar situations that people have are asking questions about.
25:13
Speaker 2: Well, yeah, I think when Tyler first had his diagnosis,
25:17
Speaker 2: you just go straight to Google, you go straight to anything.
25:20
Speaker 2: You look at Facebook groups for Hirshbung's disease. You just
25:23
Speaker 2: like you just want answers. You want to know what
25:26
Speaker 2: the future holds for your baby. I think this is
25:30
Speaker 2: also why I really was so happy to speak with you,
25:34
Speaker 2: because I think and that you've done this podcast in
25:36
Speaker 2: the first place, because had this been around seven years ago,
25:41
Speaker 2: it would have been amazing for me because all I
25:44
Speaker 2: wanted to all you want to know, I mean I
25:46
Speaker 2: know I did, was what does the future hold for
25:49
Speaker 2: my child? Like you just think about all these things
25:53
Speaker 2: you jump to their eighteenth birthday, like you just you're
25:57
Speaker 2: like constantly going through every milestone, like how's this going
26:00
Speaker 2: to look for them? What are they going to do
26:01
Speaker 2: when they do this? What's going to happen when they're walking?
26:03
Speaker 2: When they're doing And so I think if I'd had something,
26:08
Speaker 2: I mean, as much as the Facebook groups are great,
26:10
Speaker 2: they're also a bit scaremongering as well. Yeah, and like
26:16
Speaker 2: obviously Google just goes can you can tell you like
26:18
Speaker 2: the worst case not well, your child can get entercolitis
26:21
Speaker 2: and and you're like, oh my gosh, I can't deal
26:24
Speaker 2: with this. And as much as the consultants are amazing
26:28
Speaker 2: and they do the surgery, they're not living and breathing
26:30
Speaker 2: it every single day. So yeah, to have this kind
26:35
Speaker 2: of outlet that people can then listen to and be like, well,
26:40
Speaker 2: oh I can listen to her and she's got this
26:41
Speaker 2: seven and five year old, one's got snowy, one doesn't
26:43
Speaker 2: have a sonoy, one's got long second one's got and look,
26:46
Speaker 2: they're going to Florida on holiday, They're going to Spain,
26:50
Speaker 2: They're doing this, They're going there, they both go to school.
26:55
Speaker 2: Everything's stable, everything's okay, we're living life, and Hirshbrungs isn't like,
27:03
Speaker 2: doesn't sort of control our lives. I think it would
27:08
Speaker 2: have been so nice to hear that.
27:11
Speaker 1: Yeah, sorry, I didn't stop this till still just thirty.
27:15
Speaker 2: Sorry, it's all right. Yeah, I just you know, I
27:19
Speaker 2: hope I can do that for people. I hope that
27:21
Speaker 2: people will listen to it and be like they'll have
27:23
Speaker 2: that initial diagnosis, be terrified and then be like, oh,
27:26
Speaker 2: I'm going to listen to this and just be a
27:28
Speaker 2: bit reassured that you know, I'm not sugarcoating it. It
27:32
Speaker 2: wasn't easy the first few months retire that I mean,
27:35
Speaker 2: the first couple of years with Casey. But there is
27:39
Speaker 2: a light at the end of the tunnel. Basically, I
27:43
Speaker 2: want to try and instill for people.
27:46
Speaker 1: Yeah, no, that is so important. I have been been
27:49
Speaker 1: asked that many times that oh, this would have been
27:51
Speaker 1: great seven years ago. I'm like, yes, I was busy,
27:57
Speaker 1: so it's but yeah, yea, I think echo the same
28:02
Speaker 1: as well. You know, if my mum had had somebody
28:05
Speaker 1: talking about Hirshbrungs when I was you know, I don't
28:08
Speaker 1: think podcasts were around thirty years ago, but it would
28:12
Speaker 1: have been. It would have been so beneficial for her,
28:14
Speaker 1: for my mum and dad. And I think having people
28:19
Speaker 1: on like yourself talking about talking so positively about Hirshprungs
28:25
Speaker 1: and the life with Hirshbrungs with your two boys is
28:28
Speaker 1: something that I think so many people really want to hear, because,
28:33
Speaker 1: as you said, with the Facebook groups, they're great in
28:37
Speaker 1: a lot of ways, but they can also show the
28:43
Speaker 1: worst and the best, I mean, and generally people are
28:47
Speaker 1: posting on there because they have issues and concerns. There
28:50
Speaker 1: are a few people who post and they say, look
28:53
Speaker 1: how well my baby's doing, or look well, well well
28:55
Speaker 1: my child's doing, and those are fantastic, but there are
28:58
Speaker 1: a lot of people who do who want answers to
29:02
Speaker 1: various troubles and concerns. So if you do look at
29:06
Speaker 1: that quite a lot, it can feel like they're sort
29:10
Speaker 1: of a little bit of a negative vortex that you
29:12
Speaker 1: sort of spiral down a little bit. So I tend
29:16
Speaker 1: to try and not look at that as much tend
29:21
Speaker 1: to post things here and there, but and answer things
29:25
Speaker 1: if I you know, if I've spoken to somebody who
29:32
Speaker 1: I know is going through a similar thing than whoever's
29:36
Speaker 1: asking the question, then I'll post something on it. But
29:40
Speaker 1: generally if I if I don't know, I just completely
29:43
Speaker 1: leave well alone.
29:45
Speaker 2: No. I mean, if I just see them pop up
29:47
Speaker 2: on my on my Facebook feed, and if it's something
29:50
Speaker 2: that like I do see a lot, like you know,
29:53
Speaker 2: my child is now eighteen months old and we're looking
29:56
Speaker 2: on going on holiday, but they have a stonemach. Should
29:58
Speaker 2: I go? I always comment like, yes go, just be prepared,
30:03
Speaker 2: you know, if I can give a bit of positivity
30:06
Speaker 2: to people. And you do see a lot of people
30:08
Speaker 2: cover it that I've got one child and I don't
30:10
Speaker 2: know whether I should go on to have another, Please
30:12
Speaker 2: can you let me know? And I don't know whether
30:14
Speaker 2: it helps them or not by saying I've got two
30:17
Speaker 2: with it and it's you know, we're happy and you
30:20
Speaker 2: know life's fine, and it's you know, I do try
30:25
Speaker 2: and say that. So yeah, I mean, I don't actively
30:29
Speaker 2: go on all the time a lot, but if the
30:31
Speaker 2: odd one pops up and I think I can give
30:32
Speaker 2: some kind of positivity to it all, and I know
30:37
Speaker 2: I would have really appreciated that.
30:40
Speaker 1: Oh, definitely, definitely. I think you're very much in the
30:43
Speaker 1: same boat with a lot of people that you know
30:46
Speaker 1: at certain stages you've appreciated that kind of reassurance and
30:51
Speaker 1: possibly advice as well. And you mentioned I know we're
30:55
Speaker 1: bouncing back and forth a little bit, but traveling as well.
30:58
Speaker 1: I see quite a few people who say, oh, should
31:01
Speaker 1: I just stay UK based, you know, because I know
31:04
Speaker 1: the hospitals and I know the language and I know
31:06
Speaker 1: this that the other. But you've been to various places
31:12
Speaker 1: all over the world outside the UK. Whereabouts have you
31:16
Speaker 1: have you been on holiday?
31:18
Speaker 2: We actually took Tyler. I think he was about five
31:22
Speaker 2: months old, so quite fresh. He had his pull through
31:26
Speaker 2: eight weeks. We actually went to South Africa. Wow, we
31:34
Speaker 2: were still doing the metal rod and you know, the dilator.
31:42
Speaker 2: But we just got a note from the consultant obviously,
31:45
Speaker 2: like I'm not a doctor, so I can't say definite
31:49
Speaker 2: go on holiday, but if you chat with you, I
31:51
Speaker 2: always always chat with my consultant as well. I would
31:55
Speaker 2: you say it will be okay to do with this?
31:58
Speaker 2: And I did, I said, you know we'll be okay.
32:00
Speaker 2: I know we only had surgery a few months ago,
32:03
Speaker 2: but he hadn't, thank god, had any issues and we
32:08
Speaker 2: just got a note about the dilators. I took them
32:11
Speaker 2: in my hand luggage and we went away to South Africa.
32:16
Speaker 2: And it's amazing that we've got those memories together. You
32:22
Speaker 2: just be prepared basically.
32:25
Speaker 1: Yeah. Yeah, like we said before, but yeah, definitely checking
32:28
Speaker 1: with consultant. I think it's something that's really important that
32:32
Speaker 1: you make. They're checking with healthcare professionals, going is this okay?
32:37
Speaker 1: If you know, we go here, there and everywhere. But no,
32:42
Speaker 1: I think that that's really really important. I think you
32:45
Speaker 1: mentioned Florida as well. Did you say Florida.
32:47
Speaker 2: Yeah, so we did Florida for the first time a
32:49
Speaker 2: couple of years ago. So Casey was three at this point,
32:54
Speaker 2: and like I say, he'd been very in and out
32:59
Speaker 2: of hospit. So I was a bit like, oh, but
33:02
Speaker 2: again I checked. The thing I also always do is
33:05
Speaker 2: I try and coincide Casey's appointments with just before we
33:08
Speaker 2: go away, right, he can have a full check everything's fine. Yeah,
33:17
Speaker 2: maybe like a month six weeks before a couple of
33:20
Speaker 2: months before we go away, I try and make sure
33:22
Speaker 2: that that's when he has one of his appointments, and
33:25
Speaker 2: then I can just make I know that things are
33:27
Speaker 2: all right, and like I say, just have extra of everything,
33:34
Speaker 2: make sure he's on the right doses of medications. And
33:37
Speaker 2: I mean, I know once before we went away with Casey,
33:40
Speaker 2: they were like, oh, you can stop this medication and
33:42
Speaker 2: I was like, oh no, no, no, Well if something happens
33:46
Speaker 2: when I'm away, and they were like, okay, if I
33:48
Speaker 2: like stay on it and then come off it when
33:50
Speaker 2: you come back. So yeah, I just think you've just
33:54
Speaker 2: got to be so prepared and just I just make
33:58
Speaker 2: lists of everything I need and make sure I've got
34:00
Speaker 2: everything I need. And now I'm just so used to it.
34:02
Speaker 2: It's just so normal and I'm not scared to go away.
34:05
Speaker 2: I want to go away, or I'm always like, let's
34:08
Speaker 2: go away, let's do something, and the long haul flight doesn't.
34:12
Speaker 2: I was terrified. I'm not gonna lie, But it's fine,
34:17
Speaker 2: everything's fine.
34:18
Speaker 1: That's an interesting point you make about long haul flights. Again,
34:23
Speaker 1: people might think rle I might kind of you know,
34:25
Speaker 1: Spain or Italy, which is what a couple of hours flight,
34:29
Speaker 1: but going to Florida going to South Africa is obviously
34:32
Speaker 1: going to be a longer flight. Was there anything in
34:36
Speaker 1: particular that you prepared for on those longer journeys?
34:42
Speaker 2: Obviously with Casey extra stoma bags. Thankfully, we've never had
34:47
Speaker 2: to change one on a flight. And I think it's
34:51
Speaker 2: just a matter of keeping making sure you empty it constantly.
34:57
Speaker 2: So even if it wasn't even full, I would take cake.
35:01
Speaker 2: I'd get Casey up pretty much every hour to two
35:03
Speaker 2: hours on that flight and empty his bag. I'd empty
35:07
Speaker 2: it before we even get on the plane. Just making
35:09
Speaker 2: sure that you just don't have that problem, because it's
35:15
Speaker 2: it is, it can be avoided as long as you
35:17
Speaker 2: keep on top of it. And I don't let him
35:20
Speaker 2: have certain foods, Like there's certain foods that I know
35:22
Speaker 2: can make him have more stoma output or be like
35:28
Speaker 2: make his bag inflate, So I just don't let him
35:32
Speaker 2: have those foods when we're on a plane. The same
35:34
Speaker 2: with Tyler. You know those friends, if we're doing a
35:38
Speaker 2: long half flight, they keep it as bland as possible. Yeah,
35:43
Speaker 2: and yeah, just keep on top of everything for both
35:45
Speaker 2: of them, and it's fine.
35:48
Speaker 1: Yeah, No, that's so so good to hear and it is.
35:51
Speaker 1: It's just it's mentioned several times, just prep and more prep,
35:55
Speaker 1: but it is just just just making sure that so
35:58
Speaker 1: long as you keep on top of it, that you
36:01
Speaker 1: can go and do these journeys and have these wonderful experiences,
36:05
Speaker 1: which is fantastic. I want to pick up on one
36:08
Speaker 1: war point that you said earlier on about and it
36:11
Speaker 1: goes back to preparation about making sure that there are
36:16
Speaker 1: decent hospitals there, because I think, as as we both
36:19
Speaker 1: know that there are some hospitals or GP surgeries where
36:24
Speaker 1: you turn up and you mention the word hirshprungs and
36:27
Speaker 1: they just stare at you blankly. So I think that's
36:31
Speaker 1: a really really important point that you make about making
36:35
Speaker 1: sure that those hospitals are prepared and that they will
36:42
Speaker 1: know what to do if a situation arises. In terms
36:47
Speaker 1: of knowing what's a decent hospital what's not. Was there
36:52
Speaker 1: anything that you looked for in particular.
36:57
Speaker 2: I mean, I suppose it just I think for me
37:00
Speaker 2: with Casey, it's just to know that they would be
37:04
Speaker 2: able to deal with his dehydration instantly. So I need
37:09
Speaker 2: to know that I can turn up to a hospital
37:11
Speaker 2: and they're going to just be able to do these
37:13
Speaker 2: sorts of things, and I know it's quite basic thing,
37:15
Speaker 2: but I mean I've been to some hospitals in the
37:18
Speaker 2: UK with him when he's been in these kind of states,
37:22
Speaker 2: and it's taken a long time for them to be like, oh, yeah,
37:24
Speaker 2: we'll put canula in. So I think for me, as
37:29
Speaker 2: long as I know I'm going to turn up to
37:31
Speaker 2: a hospital and they've got that kind of facility, a
37:35
Speaker 2: children's facility and all of that. I know, and you
37:39
Speaker 2: can read reviews online about especially these hospitals abroad when
37:42
Speaker 2: you're paying for them, because on trip advice stuff, people
37:46
Speaker 2: might be like, oh, yeah, this happened to me and
37:47
Speaker 2: I went to this hospital, and you know, you can
37:50
Speaker 2: find out quite a lot about a hospital just by
37:52
Speaker 2: doing these sorts of things, which is a bit mad.
37:56
Speaker 2: So that's kind of what I do. S Yeah, so
38:02
Speaker 2: I just kind of do a bit of extensive research
38:04
Speaker 2: and see how easy would it be to get to
38:06
Speaker 2: the hospital, how easy would it be to them be
38:09
Speaker 2: treated as someone not from the country, and all these
38:12
Speaker 2: sorts of things.
38:13
Speaker 1: Yeah, yeah, that's brilliant. It's really really good to hear
38:16
Speaker 1: as well that you can and trip Advisor, I think
38:20
Speaker 1: again really important for that one because there are a
38:23
Speaker 1: lot of there will be a lot of people that
38:25
Speaker 1: write various things about hospitals on there, and I think
38:30
Speaker 1: trying to know I mean trying to find out which
38:32
Speaker 1: hospital could potentially know what Hirschmang's is must be an
38:35
Speaker 1: absolute minefield and must have you know, never going to
38:39
Speaker 1: find a definitive answer there, but to know that there
38:43
Speaker 1: is some somewhere there if, for example, case becomes very dehydrated,
38:49
Speaker 1: is is really really good to hear. So as we
38:56
Speaker 1: go towards the end here, I know we all a
39:00
Speaker 1: little bit in part one, but for those who haven't
39:02
Speaker 1: heard about part one, definitely go and check it out.
39:04
Speaker 1: But for those haven't heard part one, we talked very
39:07
Speaker 1: much about what the future looks like medically, I think
39:11
Speaker 1: for your two boys. But if we talk about sort
39:14
Speaker 1: of along the lines of what this podcast has been
39:16
Speaker 1: or this episode has been about in terms of the
39:19
Speaker 1: future lifestyle wise, what would you like to see for your.
39:24
Speaker 2: Voice just carry on being. I mean, Tyler, like I said,
39:29
Speaker 2: is so confident for him, it's also normal. I just
39:34
Speaker 2: want him to continue like that. I don't want him
39:35
Speaker 2: to ever be ashamed of anything. I just want him
39:39
Speaker 2: to embrace everything and just carry on being the confident
39:44
Speaker 2: little boy that he is as he grows older, and
39:49
Speaker 2: to be honest, the same with Casey. Even though he's,
39:51
Speaker 2: like I say, he's autistic, he's nonverbal, he doesn't necessarily
39:55
Speaker 2: have that much of an awareness about his condition. He
39:59
Speaker 2: is very common and it doesn't phaze him that he
40:01
Speaker 2: has a bag at all. He would run around with
40:06
Speaker 2: it all hanging out and he just doesn't care. And
40:09
Speaker 2: I love that. I love that both of them are
40:12
Speaker 2: like that. So yeah, I just want them to carry
40:15
Speaker 2: on with their confidence and just not being ashamed of anything,
40:20
Speaker 2: because there's nothing to be ashamed of. They're complete fighters.
40:26
Speaker 2: They've both been amazing. They've both been through so much,
40:29
Speaker 2: so I just yeah, continue being who they are.
40:33
Speaker 1: Fantastic. Well, we definitely definitely wish all of you all
40:37
Speaker 1: the best, very much for the for the future, and
40:41
Speaker 1: thank you so much for coming on and joining me.
40:43
Speaker 1: I know this has been a little bit of a
40:44
Speaker 1: different one because we haven't talked so much medical, but
40:47
Speaker 1: I think getting an idea of lifestyle and traveling and
40:51
Speaker 1: stonmas and what it's like to travel with a stonema,
40:54
Speaker 1: I think is invaluable for a lot of people. So
40:56
Speaker 1: thank you, thank you so much for joining me, thank
40:59
Speaker 1: you for having me, Thank you for listening to the podcast.
41:07
Speaker 1: Find us on Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen
41:12
Speaker 1: to previous episodes on Spotify by searching Tom's Hirshbrun's podcast