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Episode 118 - With Tony Brattoli · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode one, one hundred
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Speaker 1: and eighteen of Tom's Hirshprung's Podcast. I'm delighted to be
0:53
Speaker 1: joined by this morning Slash, this evening am behey, totally
0:57
Speaker 1: rittally totally welcome to the podcast.
1:00
Speaker 2: Yes, thank you, thanks for having me.
1:02
Speaker 1: No I've problem at all, but now thank you so
1:05
Speaker 1: much for joining me with this. And again, people may
1:09
Speaker 1: be aware of the surname. We did have your brother
1:13
Speaker 1: James on a few weeks ago to talk us about
1:18
Speaker 1: to talk about his experience with hirshprungs, and we now
1:21
Speaker 1: have your experience as well. You are, of course brothers
1:24
Speaker 1: and you both have hirshprungs, which is extraordinary. But would
1:30
Speaker 1: you like to take us kind of I guess back
1:33
Speaker 1: to back to the earliest point with hirshprungs in your life. Yeah.
1:40
Speaker 2: So unlike my brother James, who was older or had
1:47
Speaker 2: had his complications through many more years, so he has
1:52
Speaker 2: actual memories of this, I do not. So all of
1:57
Speaker 2: my information just comes from my mom and what I
1:59
Speaker 2: know of her recounting. So I really don't have any
2:04
Speaker 2: memory of this. But so I was born in nineteen
2:09
Speaker 2: eighty nine and right at the tail end of it,
2:12
Speaker 2: so I am not an eighties baby at all. Really,
2:14
Speaker 2: just like literally for four days I was alive in
2:17
Speaker 2: the eighties, so actually three days, so in to give
2:25
Speaker 2: perspective on that, this is really the beginning of the nineties, right,
2:29
Speaker 2: So the way that the medical system was then was
2:34
Speaker 2: very much geared towards this misogynistic view, which I'm sure
2:40
Speaker 2: that exists still somewhere, and actually it for sure does.
2:44
Speaker 2: But so I lay that foundation because when my mom
2:50
Speaker 2: first noticed that I was having some issues with the
2:55
Speaker 2: same same thing like my brother was talking about, just
2:59
Speaker 2: wasn't going to the bathroom for a few days at
3:01
Speaker 2: a time. My stomach looked ridiculously enlarged because of all
3:07
Speaker 2: the compacted you know, stool in there. She had a
3:11
Speaker 2: much harder time than convincing doctors that I had an issue,
3:18
Speaker 2: unlike my brother, who, even though it was only four
3:20
Speaker 2: and a half years after, they were more aware of
3:23
Speaker 2: the situation. So for me, she said it was it
3:27
Speaker 2: was absolutely grueling, like no doctor or medical professional would
3:34
Speaker 2: listen to her, and she really had to push and
3:38
Speaker 2: push and push to convince someone to look at me
3:42
Speaker 2: that something was actually wrong. So I believe the surgeon
3:47
Speaker 2: that listened is the same one who operated on my
3:51
Speaker 2: brother as well, because it was within you know, five
3:55
Speaker 2: years ish, so makes sense, and he already knew, so
3:59
Speaker 2: that he got I don't want to use the word lucky,
4:02
Speaker 2: but because he hey, I know you worse of a time. Yeah,
4:07
Speaker 2: but he got lucky in that sense that shouldn't have
4:09
Speaker 2: to push as hard. But yeah, for me, that's that's
4:12
Speaker 2: what I know it was. I mean, I was truly
4:16
Speaker 2: on the brink of not surviving at all because she
4:20
Speaker 2: could not convince somebody to look at me.
4:22
Speaker 1: So wow, I mean, unfortunately, I think that still exists
4:27
Speaker 1: very much today. I mean, I having now done one
4:31
Speaker 1: hundred and eighteen of these episodes, I have spoken to
4:35
Speaker 1: many mothers who have had children in the last year
4:39
Speaker 1: or maybe a matter of months who then go to hospitals.
4:42
Speaker 1: And this is not just the American healthcare system, it's
4:45
Speaker 1: also a UK healthcare system as well, and they go
4:49
Speaker 1: to yeah, doctor or whoever, and they say, you know,
4:54
Speaker 1: this isn't right. This shouldn't be happening. This doesn't look right.
4:57
Speaker 1: I don't know what it is, but you know, I
4:59
Speaker 1: think there's an is you here and they get kind
5:01
Speaker 1: of brushed off as overly anxious parents or whatever else
5:06
Speaker 1: is written in the notes, and which is so it's
5:10
Speaker 1: well rude, I guess, is the first part. But I
5:14
Speaker 1: think unfortunately, yeah, you're right, that does still happen today.
5:19
Speaker 2: Hopefully not as much. But I mean, I know during
5:22
Speaker 2: that time it was it was really rough for my
5:24
Speaker 2: mom to to really get the point across.
5:27
Speaker 1: Yeah, yeah, most definitely. But it's hopefully through doing things
5:34
Speaker 1: like this we can bring more awareness to it so
5:36
Speaker 1: that it doesn't then happen further in the future. But
5:39
Speaker 1: it's again, I guess, one of the things that we'll
5:42
Speaker 1: always have and the fact that we have a rare condition.
5:46
Speaker 1: And like you said with James, it's probably again easier
5:50
Speaker 1: is probably not the right word, but maybe a little
5:52
Speaker 1: bit easier in the fact that you have it, so
5:57
Speaker 1: at least the surgeon or because we're aware.
6:01
Speaker 2: I guess yes, because she got very knowledgeable about it
6:07
Speaker 2: because I had it, So she was expecting that it
6:11
Speaker 2: might happen again with my brother. So she completely laid
6:17
Speaker 2: the foundation first because she had the information of fret.
6:21
Speaker 2: Unlike for me, it was completely you know, a surprise, like,
6:27
Speaker 2: I mean, how would you plan for that?
6:29
Speaker 1: Well, no, no, I don't. I don't think you. I
6:32
Speaker 1: don't think anyone does. But it's like like James said,
6:35
Speaker 1: you know, no sort of family history or anything obviously
6:38
Speaker 1: apart from from you, yeah, a few years before. But
6:43
Speaker 1: again but but again, I get told repeatedly by people
6:47
Speaker 1: that oh it's prediitory or this is going to happen,
6:51
Speaker 1: and then this person's going to have it, and it
6:52
Speaker 1: doesn't follow a pattern. And that's what makes hersprungs, I think,
6:56
Speaker 1: so difficult. Is it can like for you, you and
7:00
Speaker 1: for me come completely out of the blue, no family history,
7:05
Speaker 1: no even those stomach issues or anything like that, and
7:08
Speaker 1: then bang you have you have Hershbruns. But I know
7:13
Speaker 1: you said with your with your Hirschbruns, you don't remember
7:17
Speaker 1: a great deal like a lot of us because we're
7:19
Speaker 1: babies when a lot of this this is happening for a.
7:23
Speaker 2: One year old. So you know, my brain is you
7:27
Speaker 2: clearly don't remember that far back some people s can,
7:30
Speaker 2: I think, but.
7:31
Speaker 1: Well, yeah, it's interesting I think too deep here, but
7:36
Speaker 1: subconscious I think does remember what certainly retains quite a
7:40
Speaker 1: lot that we don't actually remember. But you said you've
7:44
Speaker 1: had a round sort of is that about four to
7:46
Speaker 1: six surgeries something like.
7:47
Speaker 2: Something like something like that. It wasn't as extensive because
7:51
Speaker 2: I didn't have the complete version like my brother did,
7:54
Speaker 2: so I have about I think you said it's I
7:57
Speaker 2: want to say, it's forty forty five percent of my
8:00
Speaker 2: colon left, so I didn't have to take out everything,
8:03
Speaker 2: but I did have the full you know, resection and
8:05
Speaker 2: pull through with the stoma and the bag and everything.
8:08
Speaker 2: I just I don't remember it personally. I remember James
8:12
Speaker 2: going through it because I was, you know, four and
8:14
Speaker 2: a half five years old when he was born. So yeah,
8:19
Speaker 2: like I remember the whole thing with him.
8:22
Speaker 1: So when when he was going through that, did you
8:25
Speaker 1: kind of look at your scars and think, oh, actually
8:27
Speaker 1: I went through that as well.
8:30
Speaker 2: Uh yeah, Like I again, I know of it because
8:35
Speaker 2: my mom made us all fully aware of what was happening,
8:40
Speaker 2: you know, I mean it was pretty obvious you have this,
8:42
Speaker 2: Like my scar is pretty long. It was from it's
8:46
Speaker 2: from like see where this starts. It's kind of the
8:51
Speaker 2: almost to my side and goes all the way to
8:55
Speaker 2: my belly button. So it's you know, it's good shock.
8:59
Speaker 2: It's like seven inches or something, six inches.
9:02
Speaker 1: Like half half way across, so from the sires halfway across,
9:06
Speaker 1: just about decent size. You're going to have a scar,
9:10
Speaker 1: you know, have a proper one, and.
9:12
Speaker 2: It's thick too, because the only I think they use
9:15
Speaker 2: the same site to do everything, so that I think
9:19
Speaker 2: that's typical. Yeah, they do this initial surgery and reopened
9:24
Speaker 2: that same area over and over. Yeah.
9:27
Speaker 1: Yeah. Although I think now having again spoken to people
9:31
Speaker 1: who've had pulled through surgeries or people have had children
9:34
Speaker 1: who pulls through through surgeries, they're a lot smaller than
9:38
Speaker 1: you and I because I think we would have probably
9:40
Speaker 1: had a similar surgery because I was ninety two, so
9:44
Speaker 1: that would have been a few years after you. So
9:48
Speaker 1: I think we've we're left with massive scars and everybody
9:51
Speaker 1: else is left with sort of you know, these nice
9:53
Speaker 1: little neat onths exactly.
9:57
Speaker 2: Well, it's part of you, you know.
9:59
Speaker 1: It is, it is, Its definitely will be. But if
10:02
Speaker 1: we go back again to sort of childhood with you
10:07
Speaker 1: and a lot of I know what kind of said before,
10:11
Speaker 1: a lot of your childhood was very much surrounded by
10:15
Speaker 1: diet and having quite a strict diet, certainly when you
10:20
Speaker 1: were at home. Anyway, when you were away from home
10:22
Speaker 1: slightly different. Would you like to talk a little bit
10:26
Speaker 1: about that.
10:27
Speaker 2: Yeah, So the same applied to my brother as well,
10:30
Speaker 2: which was way more you know, he was way more
10:34
Speaker 2: affected by that than I was, because again I still
10:37
Speaker 2: have a good check by Colin left. But the strict
10:42
Speaker 2: diet thing was because of the knowledge she gained from
10:46
Speaker 2: the first time around. So my mom was really making
10:51
Speaker 2: sure that at least to the point where we were
10:55
Speaker 2: past the you know, the initial healing course of the
11:01
Speaker 2: whole thing, to kind of gear the diet towards a
11:07
Speaker 2: you know, a system that is missing parts. So you know,
11:13
Speaker 2: you don't want to just.
11:16
Speaker 1: Full on have.
11:17
Speaker 2: Everything that a normal person eats, because your body doesn't
11:22
Speaker 2: process it the same. And skipping ahead to like now
11:28
Speaker 2: I basically eat anything and it's fine, Like certain things
11:35
Speaker 2: will affect me at different times, not like James's story
11:41
Speaker 2: where I can but go back to that where he says,
11:44
Speaker 2: you know, almost every day has to change what he
11:47
Speaker 2: eats because one thing works perfectly fine, the next day
11:50
Speaker 2: it destroys his body. So I don't have that issue,
11:54
Speaker 2: although I do go back and forth with spice because
11:58
Speaker 2: sometimes there's just that one day I don't know, But
12:03
Speaker 2: most of the time it's fine. So the diet thing
12:05
Speaker 2: back when we were kids was to keep our system,
12:10
Speaker 2: you know, regulatory, to just kind of have a just
12:15
Speaker 2: a form or format of you know, this is what
12:20
Speaker 2: we're putting in our bodies in the morning, lunch, and dinner,
12:23
Speaker 2: and this is what's working. Like we are functioning. They
12:27
Speaker 2: can run outside and play, come back, go to the
12:29
Speaker 2: bathroom normally quote unquote, and yes, all of that work
12:38
Speaker 2: would then be undone if we went to let's say
12:41
Speaker 2: a grandparents' house, because you know their grandparents, so they
12:45
Speaker 2: would always have ours. In particular, it would always have
12:48
Speaker 2: the There's a store called Pavilions out here. They're attached
12:53
Speaker 2: to Vaughan's, which is the main one. Pavilions had this
12:58
Speaker 2: ice cream back then that came in in a rectangular box.
13:04
Speaker 2: I remember that vividly because it was not good ice cream,
13:08
Speaker 2: but it was ice cream, so you know, I didn't
13:11
Speaker 2: get to eat that, so if it was offered, sure, yeah,
13:16
Speaker 2: But I mean it's not that we couldn't have any ever,
13:20
Speaker 2: it was just highly regulated like soda. All that stuff
13:25
Speaker 2: was a no no. I mean it has caffeine in
13:29
Speaker 2: it too, so there's that. As a kid, you really
13:32
Speaker 2: shouldn't have stuff like that anyway. But yeah, all that
13:37
Speaker 2: sugary stuff I know is not can do so to
13:40
Speaker 2: a good diet anyway, So why offer that when you
13:45
Speaker 2: have this plan that's working. But yes, it got thrown
13:49
Speaker 2: off all the time.
13:51
Speaker 1: Yeah, yeah, I guess that's the thing. Were you as
13:56
Speaker 1: much trial and error as James was, or were you
14:01
Speaker 1: a little bit or was your die a little bit
14:04
Speaker 1: easier to sort of manage.
14:07
Speaker 2: Yeah, that's a good question. I don't think so, because
14:11
Speaker 2: I still had a good chunk in there leftover, so
14:15
Speaker 2: I could still retain nutrients and process things semi normal. However,
14:23
Speaker 2: bring up ice cream again. I found out why that
14:28
Speaker 2: was a problem more so than the sugar was, because
14:31
Speaker 2: it is a lactose product, and the surgeon apparently had
14:36
Speaker 2: told my mom that I have a chance of being
14:41
Speaker 2: lactose intolerant, but I was one hundred percent like the
14:45
Speaker 2: entire time since forever, and literally we didn't figure that
14:51
Speaker 2: out as a true fact until I want to say,
14:54
Speaker 2: twenty ten.
14:56
Speaker 1: Oh wow, oh wow, So you were yeah in your
15:00
Speaker 1: twenties by there.
15:02
Speaker 2: Yep. So I just kept having all of these emergency
15:06
Speaker 2: bathroom visits and I was attributing it to the disease,
15:10
Speaker 2: but it was in fact a severe lactose in tolerance.
15:15
Speaker 1: So not only hit with hirshbrugs, you're also hit with
15:20
Speaker 1: lactose intolerance as well.
15:22
Speaker 2: Yeah, and it was lucky with that he does not
15:25
Speaker 2: have that. He can have dary all day that it's
15:28
Speaker 2: not great for him either to have that in general.
15:31
Speaker 2: So yeah, he's I think he's switched to like soy
15:33
Speaker 2: milk recently that's been working better. But yeah, he can
15:37
Speaker 2: just have ice cream and whatever. It doesn't affect him
15:40
Speaker 2: that way. Yeah. Yeah.
15:42
Speaker 1: And then and then you kind of but then it
15:45
Speaker 1: would make sense that sort of attributing the lactoes and
15:50
Speaker 1: tolerance to well, that's just by hirshbrums or whatever it
15:54
Speaker 1: might be, which makes which makes complete sense, you know,
15:57
Speaker 1: because how would you how would you know? Just wouldn't
16:02
Speaker 1: exactly how did you find out?
16:05
Speaker 2: In the end, I think my mom had an inkling
16:14
Speaker 2: of that being the case, and then over time about
16:19
Speaker 2: you know whatever, I ate would just send me straight
16:22
Speaker 2: to the bathroom, so she figured it out. It's like,
16:26
Speaker 2: you know what, I really think he looked at us intolerant.
16:30
Speaker 2: So I tested using you know, lactase enzymes or just
16:34
Speaker 2: milk that has already like fair life stuff like that,
16:39
Speaker 2: and yeah, no problem.
16:43
Speaker 1: So they again, parental instincts. Always always trust parental instincts.
16:49
Speaker 1: I think that's one thing I've learned in the last
16:51
Speaker 1: couple of years doing this.
16:53
Speaker 2: It's for these medical things.
16:55
Speaker 1: Oh yeah, yeah, parents pick up on way more than
16:59
Speaker 1: we realized, way more.
17:03
Speaker 2: So.
17:05
Speaker 1: Lactose intolerant, you have hirshprungs, and I will sort of
17:10
Speaker 1: bounce around as well. But you also have two other
17:13
Speaker 1: conditions as well, so I but it came to handy
17:18
Speaker 1: out luck you didn't. You didn't exactly get the best
17:21
Speaker 1: luck of the draw. So you also on top of this,
17:26
Speaker 1: on top of being lactose tolerant, on top of having hirshbrungs,
17:30
Speaker 1: you also have Type one diabetes and also hashimotos, which
17:37
Speaker 1: I'm aware of this as well because two members of
17:39
Speaker 1: my family. One member of my family has typewe Hirshbrungs,
17:44
Speaker 1: one member of my family has hashimotos, So this is
17:46
Speaker 1: something I'm also very aware of. But for people who
17:51
Speaker 1: are unaware of let's start with hashimotos. That's probably the
17:55
Speaker 1: hardest one.
17:57
Speaker 2: Sure, Yeah, so that actually came about because of diabetes.
18:00
Speaker 2: That is very common with people with diabetes. Essentially, it's
18:05
Speaker 2: a thyroid disease where it destroys how it functions and
18:12
Speaker 2: makes it not produce enough of the hormone that you
18:16
Speaker 2: need to have the regulated metabolism, so it's it's essentially hypothyroidism.
18:23
Speaker 2: So I have an underactive thyroid. And when they that
18:29
Speaker 2: only came about because of a routine doctor's visit. The
18:33
Speaker 2: blood tests and my thyroid levels were not great, so
18:39
Speaker 2: they had an ultrasound and again that those Segnians can't
18:43
Speaker 2: diagnose anything. She said that, She's like, Okay, I can't
18:46
Speaker 2: obviously diagnose this, but your thyroid looks like.
18:49
Speaker 1: Swiss cheese, which isn't a diagnosis, but it kind of is.
18:56
Speaker 2: Yeah, that's that's not normal it shouldn't look like Swiss cheese.
19:00
Speaker 2: So yeah, because of that, I've been taking you know,
19:04
Speaker 2: synthroid or the generic level of thyroxine for quite a
19:09
Speaker 2: few years now. Wow.
19:12
Speaker 1: And how does that? Does that affect your hirsh brungs
19:18
Speaker 1: at all or do they just are they just completely
19:20
Speaker 1: separate from one another.
19:22
Speaker 2: No, it's just annoying because you have to take a
19:24
Speaker 2: pill every day and you can't eat for about an
19:28
Speaker 2: hour after you take it. Well, it's within thirty minutes
19:32
Speaker 2: to an hour after taking the thyroid. The hormones, yes,
19:39
Speaker 2: which being a diabetic and if you wake up low
19:43
Speaker 2: or something and you have to have something to bring
19:46
Speaker 2: your sugar back up, there's a there's a relationship there
19:51
Speaker 2: because I think if you eat or drink something before
19:54
Speaker 2: it has time to activate, it just kind of doesn't work.
19:57
Speaker 2: So that pills was a wash.
20:00
Speaker 1: Oh wow. So there's a lot of a lot of
20:02
Speaker 1: organization then then you're lost a lot of organization.
20:07
Speaker 2: Yes, there is. Wow.
20:09
Speaker 1: So again if you touch on the what he just
20:12
Speaker 1: brought up there with diabetes, obviously his type one type two,
20:16
Speaker 1: type two being more sort of weight, I guess control
20:22
Speaker 1: one type one tends again to be just complete bad
20:27
Speaker 1: luck from what I understand, from what you know. My
20:31
Speaker 1: brothers had diabete, type one diabetes for the last since
20:35
Speaker 1: he was eleven. He's now thirty two, So yeah, last
20:38
Speaker 1: twenty years or so, so knowing what I know from him, again,
20:43
Speaker 1: just seems complete bad luck. But I guess that was
20:45
Speaker 1: the same for you too.
20:47
Speaker 2: Yeah, and think it manifested super late. Like yeah, literally
20:51
Speaker 2: the week of my twenty seventh birthday.
20:54
Speaker 1: Oh no, it's happy birthday. First. Yeah, he is type
20:56
Speaker 1: one diabetes exactly.
21:00
Speaker 2: It was. It was a weird experience for that one
21:03
Speaker 2: because so, yes, I have harsh sprungs. I didn't have
21:08
Speaker 2: diabetes at the time. However, I treated my body as
21:13
Speaker 2: if it was younger than it was. I suppose. Well,
21:17
Speaker 2: I mean I was still young. Under thirty is you're
21:21
Speaker 2: pretty resilient. I mean even thirty is not that bad.
21:24
Speaker 2: But so it was that came about because one day
21:29
Speaker 2: I was at work, I was on site for a client,
21:33
Speaker 2: got my normal lunch, which at that time I had
21:36
Speaker 2: walked to Del Taco and I just got you know,
21:40
Speaker 2: a lot. Actually it was just heavy carb meal but
21:46
Speaker 2: than protein too, but you know, burritos, chicken, quesity as
21:49
Speaker 2: that kind of stuff and a regular soda and I
21:54
Speaker 2: had all of that for lunch and after I'd eaten that.
21:59
Speaker 2: It's weird describe this feeling, but I'm sure at that
22:03
Speaker 2: point my blitch sugar was probably in the five hundreds,
22:05
Speaker 2: which is why this happened. Because I was looking at
22:10
Speaker 2: my computer at the desk, and I just it looked
22:14
Speaker 2: like like behind me kind of force, like you kind
22:19
Speaker 2: of get these little starry tunnel vision thing going on,
22:24
Speaker 2: and then it felt like a hot flash at the
22:26
Speaker 2: same time, and I was like, why do I feel
22:31
Speaker 2: like this? This is very I've never felt that before.
22:35
Speaker 2: Like the closest I got was like going to a
22:38
Speaker 2: theme park and ticking, you know, a roller coaster and
22:43
Speaker 2: those toilet bowls as they're called, where it goes to
22:46
Speaker 2: the side and whips around a few times, Like I've
22:49
Speaker 2: done that and you know you're about to pass out
22:51
Speaker 2: and see stars for a second. That's kind of that
22:54
Speaker 2: feeling with the addition of being hot, and then your
22:58
Speaker 2: whole body gets kind of height, like all your muscles
23:01
Speaker 2: tighten up, like it just released massive amount of lactic
23:06
Speaker 2: acid from you know, working out. You know, if anyone
23:10
Speaker 2: knows if you've worked out to failure before, like and
23:12
Speaker 2: you can't move your arms anymore because you just did
23:15
Speaker 2: that one more bicep curl. It's that feeling that your
23:20
Speaker 2: entire musculature. And then every twenty minutes, like clockwork, had
23:27
Speaker 2: to pee, just every like exactly twenty minutes. I call
23:33
Speaker 2: my doctor. Yeah, that's exactly one dollar at sign YEP.
23:37
Speaker 2: I called my doctor and they told me to come
23:40
Speaker 2: in as soon as possible, And before I knew it
23:43
Speaker 2: was going on, they did a blood test to see
23:46
Speaker 2: what it was. And then they're like, have you ever
23:48
Speaker 2: had diabetes before or known in your family diabetes. I'm like, oh,
23:51
Speaker 2: so it is diabies. But at the time they weren't
23:55
Speaker 2: sure which one because it didn't make sense. It's again,
24:00
Speaker 2: I was twenty seven, so why would it Why would
24:02
Speaker 2: I have type one diabetes at twenty seven? It's very late.
24:05
Speaker 2: So they gave me a met foreman for a week
24:08
Speaker 2: and it didn't do anything at all. So they're like, yeah,
24:11
Speaker 2: it's type one.
24:15
Speaker 1: So that's so that's another another condition to contend with.
24:20
Speaker 1: And again, I mean that's the warning ones. Yeah, but
24:24
Speaker 1: I don't know necessarily when when type one is supposed
24:29
Speaker 1: to be diagnosed. I don't know what a what a
24:31
Speaker 1: sort of right age to have it is? Do you
24:36
Speaker 1: usually in it all?
24:37
Speaker 2: Like you are? You're literally born with it. It's it's
24:40
Speaker 2: an autoimmune issue. Yes, so it's supposed to manifest in
24:47
Speaker 2: your you know, uh, toddler's age or younger. That's normal.
24:53
Speaker 2: Like yeah, live my almost entire life to that point
25:00
Speaker 2: with normal.
25:04
Speaker 1: Yeah. And then and then the bang hit with hashmotos
25:08
Speaker 1: Hurstbruners and again the kind of same question with hashimotos
25:12
Speaker 1: and relations to hirsprungs Type one diabetes and hirsprungs in
25:20
Speaker 1: terms of their relation. Did when you were then diagnosed,
25:24
Speaker 1: did you then have to think a little bit more
25:29
Speaker 1: about certain diets or or any Did anything else change
25:33
Speaker 1: at that point in your relation to hirsprungs and lactose
25:37
Speaker 1: and hashimotos and everything else? Yet, Well, the.
25:41
Speaker 2: Hush moos came later, but the the hirsprungs, no, that
25:46
Speaker 2: has That's always kind of in the back of my
25:48
Speaker 2: mind because again, my system functions how it functions, and
25:53
Speaker 2: with with the lactose gone or controlled, you know, I
25:59
Speaker 2: know how my by it works with that without it.
26:02
Speaker 2: The main thing that happened was I was, you know,
26:06
Speaker 2: drinking normal sodas and like sweetened coffee and stuff. When
26:12
Speaker 2: I heard the news, my brain like kind of switch.
26:16
Speaker 2: It was just like sweet coffee is terrible. Like I
26:20
Speaker 2: still don't like sweet coffee. I just have just straight coffee,
26:25
Speaker 2: if anything, a little half and half in there, nothing else, which,
26:30
Speaker 2: by the way, I know half and half has lactose,
26:32
Speaker 2: but for some reason it doesn't do anything if I
26:35
Speaker 2: have it with coffee. It depends on the type of
26:39
Speaker 2: dairy that I don't know. It's weird butter saying thing
26:42
Speaker 2: like doesn't really do too much unless I have like
26:45
Speaker 2: a whole stick, which yeah, but any don't right. Yeah,
26:53
Speaker 2: in terms of the relation there, its not really a factor.
26:59
Speaker 2: It's right now and since diagnosis, I am in full
27:04
Speaker 2: caring about diabetes mode because you have to I have
27:09
Speaker 2: to watch everything. I mean, it's it's like controlled and
27:13
Speaker 2: not controlled at the same time, Like I don't think
27:15
Speaker 2: this'll pick it up, but no it doesn't. So this
27:20
Speaker 2: is what I'm I'm currently a one fifty five, which
27:23
Speaker 2: to some would say, oh my gosh, that's high. My
27:27
Speaker 2: normal is usually above one eighty. So this is good.
27:31
Speaker 2: Right now. You could see the graph right, it's earlier today.
27:35
Speaker 2: It was in the three hundreds.
27:39
Speaker 1: And for those for those listening who did see the grah,
27:43
Speaker 1: what's the number one fifty five representing?
27:47
Speaker 2: So that is my current blood glucose. For a normal human,
27:53
Speaker 2: you should be roughly in the range of seventy to
27:55
Speaker 2: one hundred just at any time, like if you're really hungry,
27:59
Speaker 2: like when you get like you're a little shaky because
28:02
Speaker 2: you haven't eaten in a while, that you're probably closer
28:05
Speaker 2: to seventy as a human, but you have a pancreas
28:08
Speaker 2: and a liver that control that function. I mine doesn't
28:13
Speaker 2: do anything. My liver does. Sometimes there's a phenomenon called
28:19
Speaker 2: the dawn phenomenon I guess what's called, where your liver
28:25
Speaker 2: will put sugar into your bloodstream as a backup. So
28:34
Speaker 2: that usually happens when you dip low in your sleep
28:39
Speaker 2: and your liver will just say that's that's not good,
28:43
Speaker 2: so we'll put some sugar in your blood stream. But unfortunately,
28:46
Speaker 2: when that happens, you usually wake up high because it
28:50
Speaker 2: didn't put the right amount, or it puts too much,
28:53
Speaker 2: and because there's no insulin in your system to counteract it,
28:56
Speaker 2: it's just just goes up. So yeah, when fifty five
29:01
Speaker 2: is a little above where I should be, but that's
29:03
Speaker 2: still technically in the greens.
29:06
Speaker 1: It's good. Good for you, then I guess, yeah, it's
29:09
Speaker 1: not for anybody else. But I think one thing that
29:16
Speaker 1: it's really really important to point out. Again, we've talked
29:21
Speaker 1: about a litany of conditions, and one of the things
29:25
Speaker 1: I really like doing on this podcast is highlighting people
29:29
Speaker 1: who have the condition but still are able to live
29:34
Speaker 1: you know, quote unquote normal lives, have a normal job,
29:38
Speaker 1: you know, achieve really great things. And I mean you do,
29:44
Speaker 1: I mean you work in it?
29:46
Speaker 2: Is that right? Yes? I have an IT manager for
29:50
Speaker 2: a multi service provider company, So you still very.
29:55
Speaker 1: Much live a normal kind of office office time job.
30:01
Speaker 1: Is that correct?
30:03
Speaker 2: That's correct?
30:04
Speaker 1: But yeah, but I think that's but that even with
30:07
Speaker 1: all of the conditions and all of the complications. I
30:11
Speaker 1: think one of the things that kind of strikes me
30:15
Speaker 1: a lot with people I talk to, especially when they
30:17
Speaker 1: have children with Hirsprung's, they're very very unsure of the future.
30:22
Speaker 1: You know, will they be able to, you know, leave
30:24
Speaker 1: the house, will they be able to hold down a
30:28
Speaker 1: normal job, will they be able to you know, play sports,
30:32
Speaker 1: will they be able to play musical instruments, whatever it
30:37
Speaker 1: might be. I mean you you've done a lot of
30:40
Speaker 1: those things. I mean you you were you are very
30:43
Speaker 1: musical as well. I think that's what I'm saying. We'll
30:45
Speaker 1: touch off, touch on. When did that sort of love
30:49
Speaker 1: of music start.
30:52
Speaker 2: Uh again, From what I am told, it kind of
30:56
Speaker 2: happened naturally. I think my mom said I was like
31:01
Speaker 2: two or three, and we'll go back to the grandparents again,
31:04
Speaker 2: because they had a piano. I wasn't tall enough to
31:07
Speaker 2: even see the keys on a piano, but she said
31:12
Speaker 2: I would just reach my hands up and just kind
31:17
Speaker 2: of listen for notes that like made sense to me,
31:22
Speaker 2: Like I would start putting them together to like say, ah,
31:25
Speaker 2: that's those two notes are nice, and just kind of
31:28
Speaker 2: repeat that process throughout the keyboard apparently. And then I
31:32
Speaker 2: started having lessons when I was four on piano and
31:38
Speaker 2: I've at least stuck with that instrument ever since. But
31:41
Speaker 2: I always say piano is a great gateway instrument just
31:45
Speaker 2: because of I mean, you have eighty eight keys to
31:48
Speaker 2: look at and play. That's that's a lot of notes.
31:54
Speaker 2: You also are doing technically three things at the same time.
31:57
Speaker 2: You have your doing your the melody or whatever else
32:00
Speaker 2: in the right hand, you have the left hand supporting that.
32:03
Speaker 2: Then you have your feet doing the pedals. So all
32:07
Speaker 2: of that eventually becomes second nature. But I also teach piano,
32:12
Speaker 2: and I like that as a gateway instrument for anything.
32:17
Speaker 2: So if anyone wants to learn, say a saxophone, if
32:20
Speaker 2: you have a piano background, you can kind of like
32:22
Speaker 2: visualize the keyboard in your head while you're playing another
32:26
Speaker 2: instrument that's just a single line instrument. One key plays
32:30
Speaker 2: one note, and it's quote unquote easier. It's it's not.
32:34
Speaker 2: But yeah, I always liked that fact, and I don't know,
32:39
Speaker 2: I just kind of stuck with it since then. I
32:42
Speaker 2: just that's an outlet for me. I don't play as
32:46
Speaker 2: much as i'd like to anymore, but it hasn't it's
32:50
Speaker 2: not gone. Like if I sit down at the piano
32:53
Speaker 2: right now, I could still play everything. Maybe not as
32:56
Speaker 2: well as I did ten years ago, but you know,
32:59
Speaker 2: it's it's still in there.
33:01
Speaker 1: Like driving a car or riding a bike.
33:04
Speaker 2: Yeah, exactly. Wow.
33:06
Speaker 1: So in terms of so you played piano and then
33:09
Speaker 1: throughout life, have you played different instruments as well?
33:14
Speaker 2: Oh, yeah, middle school is kind of the turning point
33:17
Speaker 2: for me on that one. So well. Actually before that
33:21
Speaker 2: would be fifth grade. My elementary school had a band
33:27
Speaker 2: slash orchestra thing that one of the more awesome teachers
33:32
Speaker 2: there had decided to take upon himself and start. So
33:35
Speaker 2: he was one of the teachers in the Gate program.
33:39
Speaker 2: I don't know if you know what that is. It's
33:41
Speaker 2: like a gifted student thing. Again, this is not tooting
33:48
Speaker 2: any horns or anything for myself, but I was in
33:52
Speaker 2: that in elementary school. In the the main thing that
33:58
Speaker 2: he led was like this kind of logical puzzle type
34:07
Speaker 2: class where I remember these vividly too. They're called stories
34:13
Speaker 2: with holes. So it would be just a the story
34:18
Speaker 2: that was missing some key facts in it, and at
34:23
Speaker 2: the end you have to ask questions that will lead
34:27
Speaker 2: to filling in those gaps, and you only they have
34:32
Speaker 2: to be logical. Yeah, it's it's to help you know,
34:35
Speaker 2: figure out the story. Anyway, he started a band program,
34:41
Speaker 2: and my mom's a flute player and she has been forever,
34:45
Speaker 2: and I wanted to play something in there because they
34:49
Speaker 2: didn't have like piano, you had to play a wind instrument.
34:51
Speaker 2: So my mom first taught me the flute a little bit,
34:55
Speaker 2: so that was my foray in two single line wind instrument.
35:00
Speaker 2: And then in middle school is really where it took off.
35:05
Speaker 2: Same kind of thing. First year ever at that school
35:08
Speaker 2: having a band program in seventh grade, and I was like, yeah,
35:12
Speaker 2: I'm gonna join that. So went and unfluted first and
35:16
Speaker 2: then just hung out there all the time because we
35:21
Speaker 2: had a carpool situation, so we have to wait a
35:24
Speaker 2: lot for our parents to come pick us up. So
35:26
Speaker 2: it was easy to just stay in the band class
35:28
Speaker 2: and I just open a book. You're like, I learned
35:32
Speaker 2: trumpet today, to just go through the whole book and
35:34
Speaker 2: figure out the fingerings and rinse and repeat, you know,
35:38
Speaker 2: like clarinet, base, clarinet, trombone, all this stuff. Was just
35:42
Speaker 2: trying it out. And then my love of tuba was
35:45
Speaker 2: was born from there, and I got into a marching
35:48
Speaker 2: band in high school on tuba and march that for
35:53
Speaker 2: four years. I also was principal too, but cal State
35:58
Speaker 2: Northridge my freshman year of college, so sick.
36:04
Speaker 1: Yeah, it's just fantastic. Okay, I've never played a musical
36:09
Speaker 1: edge from my life. I wouldn't have a clue how to,
36:12
Speaker 1: but so I always marvel at the fact that people
36:14
Speaker 1: can play, especially play more than what it's it's Yeah,
36:20
Speaker 1: I love it, I absolutely love it. Just what we've
36:23
Speaker 1: got a bit more time just finish is sure a story.
36:27
Speaker 1: I know that you've told me a little bit about
36:29
Speaker 1: this about tenth grade and playing a tuba, I believe
36:34
Speaker 1: at the lime. Would you like to talk a little
36:37
Speaker 1: bit about that.
36:39
Speaker 2: Yeah, So that is the actual time that I remember
36:44
Speaker 2: what being in the hospital is in, or being a
36:46
Speaker 2: patient in a hospital. So, like I mentioned, I was
36:50
Speaker 2: playing tuba in the high school marching band. So every
36:53
Speaker 2: morning we did this. We got there super early, like
36:57
Speaker 2: five point forty five in the morning every day, probably
36:59
Speaker 2: annoy all the neighbors in the neighborhood because we would
37:01
Speaker 2: play outside. But we were two hundred and fifty people.
37:06
Speaker 2: It's about quiet, how excuse me? So just like normal,
37:13
Speaker 2: I got my tube out, went to the line. You know,
37:17
Speaker 2: we just kind of form a semi circle or a
37:18
Speaker 2: circle around the band director and do our little warm
37:21
Speaker 2: ups and stuff. I could have put up my tube
37:24
Speaker 2: on my shoulder, and I felt like my stomach just
37:28
Speaker 2: ripped open. Uh, and I just could not fathom what
37:34
Speaker 2: the heck I was feeling. So I had to just
37:37
Speaker 2: tell the directors like I gotta leave the line really quick.
37:40
Speaker 2: You know. I thought maybe I just I had something
37:43
Speaker 2: bad to eat. So I went to the bathroom. I
37:46
Speaker 2: mean like when I say, nothing came out, and it
37:49
Speaker 2: was like nothing, like I felt something kind of move out,
37:55
Speaker 2: but you know, it was more like a a pellet,
37:58
Speaker 2: like literally nothing. So then I tried to come back
38:03
Speaker 2: and I knew something was definitely wrong. So I went
38:06
Speaker 2: to the nurse and I was just absolutely writhing and
38:10
Speaker 2: paying at the nurse's office until my mom finally got
38:13
Speaker 2: out of work to come get me. I was at
38:17
Speaker 2: home for one day total in that state, and then
38:23
Speaker 2: it got to the point where I was I tried
38:25
Speaker 2: to eat like a slice of toast and it didn't
38:28
Speaker 2: go anywhere. So it just ended up coming back out
38:32
Speaker 2: with them just you know, not to get too gross,
38:37
Speaker 2: but it eventually just just bile was coming out. There
38:41
Speaker 2: was there's nothing in my stomach. So made it to
38:45
Speaker 2: the orangety room and they did a contrast CT, which
38:51
Speaker 2: is awful if if anyone has done that before. The
38:55
Speaker 2: stuff you have to drink is terrible. They also, in
39:00
Speaker 2: my case, had to pump my stomach or something similar.
39:05
Speaker 2: They put an enng you tube in and that process
39:08
Speaker 2: is terrible as well, where they have you have to
39:10
Speaker 2: drink water while they're shoving the tube from your nose
39:13
Speaker 2: down your to your stomach. And yeah, I was in
39:18
Speaker 2: the hospital for a week for a bowel obstruction, so
39:22
Speaker 2: I had to have surgery to fix that. And luckily
39:27
Speaker 2: the surgeon said that he literally opened me up, like
39:31
Speaker 2: poked it a little bit, and it just straightened out
39:33
Speaker 2: on its own, so he didn't have to go in
39:36
Speaker 2: there and do anything. But the cause was I was
39:39
Speaker 2: dehydrated from the weekend I spent at a friend's house,
39:43
Speaker 2: and because of that, my intestine got stuck on some
39:47
Speaker 2: scar tissue from my previous surgeries, and that's why when
39:52
Speaker 2: he touched it just kind of went just back to
39:59
Speaker 2: now use it.
39:59
Speaker 1: I mean, I think that that is such an important
40:01
Speaker 1: point though, that because again I didn't realize this until
40:07
Speaker 1: much later on in life, that dehydration is so dangerous
40:11
Speaker 1: for people with hirshprungs. Yeah, especially I guess as well,
40:15
Speaker 1: if you have stomas or a stoma, I guess you
40:19
Speaker 1: then need to take on a lot more a lot
40:21
Speaker 1: more fluid. I don't realize just how just how dangerous
40:26
Speaker 1: dehydration could be. But I guess you know firsthand how
40:29
Speaker 1: dangerous the nitrition could be.
40:31
Speaker 2: Diabetes does that too. So I had another incident later
40:36
Speaker 2: where there was a few months after diagnosis, then girlfriend
40:41
Speaker 2: my wife now had to take me to the hospital
40:44
Speaker 2: the middle of the night because I was just shivering
40:48
Speaker 2: and could not function and it happened to be deandration again.
40:53
Speaker 1: Yeah, yeah, I think I think that's. Yeah. Again, it's
40:58
Speaker 1: another thing with diabetes, isn't it, making sure you stay hydrated,
41:03
Speaker 1: and especially with the hirshbrunges as well. But yeah, it's
41:09
Speaker 1: it's one of those things where it's it's so it's
41:12
Speaker 1: so important, but it's something that's so easily forgotten, I guess,
41:15
Speaker 1: especially you know, if you've got work going on and
41:19
Speaker 1: lots of other things. I mean, I'm as guilty as
41:21
Speaker 1: anyone for it. When I'm working and doing all sorts,
41:24
Speaker 1: and I'll have a bottle next to me, but I
41:28
Speaker 1: won't look at it for two hours and won't touch
41:30
Speaker 1: it for two hours three hours, and I think, actually
41:32
Speaker 1: I'm quite thirsty, you know. And And yeah, as I
41:36
Speaker 1: think that's that's something that's something that really really important
41:42
Speaker 1: with Hirschbrungs that I just don't think we think of enough.
41:45
Speaker 2: No, and again in my brother's case, it's it's very
41:48
Speaker 2: serious because he has complete so there's there's nothing in
41:52
Speaker 2: there to retain the water, not really, so he has
41:55
Speaker 2: to have just a ton I mean he has more
41:58
Speaker 2: than just water. He's got deteriades and whatever else that
42:03
Speaker 2: just gives a lot of salt.
42:05
Speaker 1: Yes, yes, most definitely, but no, thank you ever so
42:09
Speaker 1: much for coming on. It's been a it's been an
42:12
Speaker 1: absolute pleasure to chat to you and just know this great
42:15
Speaker 1: very quickly before we wrap up. Where can people find
42:19
Speaker 1: you on social media?
42:22
Speaker 2: Right? Uh? I do have a website. It's Tony bertolimusic
42:26
Speaker 2: dot com. I forgot about that. Oh yeah, yes, some
42:29
Speaker 2: of my work on there, which does lead to my
42:32
Speaker 2: social media pages as well, but I am on mainly
42:35
Speaker 2: Instagram and TikTok. Instagram is Tony Bertolei composer, and TikTok
42:42
Speaker 2: is just Tonio Brottoli.
42:45
Speaker 1: Fantastic, fantastic way I can keep up with all of
42:47
Speaker 1: your musical exploits.
42:50
Speaker 2: Yeah, I need to post more. This is this all
42:52
Speaker 2: hopefully help me remember that would have been asked where
42:56
Speaker 2: everything is fantastic? Well, thank you ever so much. I
43:00
Speaker 2: wish you all the very best with your various ailments
43:04
Speaker 2: and obviously music and it in the future.
43:08
Speaker 1: Thank you so much for covering on.
43:09
Speaker 2: Yeah, of course, thank you.
43:14
Speaker 1: Thank you for listening and being part of this growing community.
43:18
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
43:21
Speaker 1: leave a review and share it with someone who might
43:23
Speaker 1: need it. You can connect with us on social media
43:26
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
43:32
Speaker 2: See you next week.