Latest / Tom's Hirschsprung's Podcast / Episode 117 - With Shakeyra Sanders

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Episode 117 - With Shakeyra Sanders · Tom's Hirschsprung's Podcast

• 0:02
  Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
• 0:05
  Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
• 0:09
  Speaker 1: live with it, care for someone who has it, or
• 0:12
  Speaker 1: just want to understand more, this podcast is for you.
• 0:15
  Speaker 1: Each episode, we will explore real stories and honest conversations
• 0:19
  Speaker 1: about a condition that often goes unheard. Thank you for
• 0:22
  Speaker 1: tuning in. Hello, and welcome to episode one hundred and
• 0:48
  Speaker 1: seventeen of Tom's Hirshbrungs Podcast. I'm joined this afternoon by Shakira. Shakira,
• 0:55
  Speaker 1: welcome to the podcast.
• 1:00
  Speaker 2: Thank you for having me.
• 1:03
  Speaker 1: My pleasure, My pleasure, Thank you so much for coming on.
• 1:07
  Speaker 1: Now you have Hushbrungs and we are going to talk.
• 1:11
  Speaker 1: I'm really about your story, your journey with Hushbrungs. So
• 1:18
  Speaker 1: it's over to you.
• 1:24
  Speaker 2: Okay, thank you so much for having me. And like
• 1:28
  Speaker 2: I said, I feel as if, you know, I need
• 1:32
  Speaker 2: to talk about it.
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  Speaker 3: You know, I am a shy person and you know,
• 1:39
  Speaker 3: like to keep things, you know, between like with myself
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  Speaker 3: and my mom who actually been there with me through it,
• 1:49
  Speaker 3: and also other family members as well. But so a
• 1:55
  Speaker 3: little big story about me. I'm thirty four years old.
• 2:02
  Speaker 2: I was born.
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  Speaker 3: October to twenty six and when I was born, you know,
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  Speaker 3: I was born with it, but they weren't educated, you know,
• 2:13
  Speaker 3: Hersch Grounziggs. That was like, oh, you know, just add
• 2:18
  Speaker 3: fiber ad fiber. But I kept Lebonner Hospital was like
• 2:24
  Speaker 3: my sick and home. Like I stayed in the hospital
• 2:29
  Speaker 3: and that was like, well, let's try anima and they
• 2:33
  Speaker 3: would do animals unto like my behind would just bleed
• 2:37
  Speaker 3: and I would be in so much pain. I was like, well,
• 2:42
  Speaker 3: we don't understand, you know, why she's having this problem
• 2:45
  Speaker 3: because everything you know is she's perfectly fine.
• 2:49
  Speaker 2: But I wasn't perfectly fine at all. So there was
• 2:54
  Speaker 2: like just increase her fiber, increase her fiber. So this
• 2:57
  Speaker 2: is what my mom did. She increased my fiber. And so.
• 3:02
  Speaker 3: As I got older, like you know, growing up, I
• 3:08
  Speaker 3: still had the complication. And I was like, well, try
• 3:12
  Speaker 3: prone juice and I was like no, I was like, oh,
• 3:19
  Speaker 3: well try mineral oil. And mineral oil it actually was
• 3:24
  Speaker 3: better because it was just it didn't have a taste
• 3:29
  Speaker 3: and it didn't.
• 3:31
  Speaker 2: Like gripe my stomach or anything.
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  Speaker 4: So it was pretty much okay for a couple of years,
• 3:38
  Speaker 4: I think a couple of months, and then after that
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  Speaker 4: it just went like right back to like, okay, what
• 3:46
  Speaker 4: is going on?
• 3:47
  Speaker 2: So as I got in I think I think it
• 3:57
  Speaker 2: was like high school.
• 4:00
  Speaker 3: It's like when it started to get worse and I
• 4:04
  Speaker 3: would just cry and it would look like as if
• 4:09
  Speaker 3: five or six months pregnant, and I was like, God,
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  Speaker 3: I'm in so much pain, like something is wrong.
• 4:16
  Speaker 2: And I saw my mama.
• 4:17
  Speaker 3: I said, look, something is not right, and I know
• 4:22
  Speaker 3: it's not because there's no reason why I can't go
• 4:26
  Speaker 3: some a reason. There's no reason why I'm hurting as
• 4:29
  Speaker 3: bad as I am.
• 4:31
  Speaker 2: And so I said, I'm gonna take a stand.
• 4:37
  Speaker 3: So I caught around, gave me an appointment, and he
• 4:41
  Speaker 3: wanted to do a clance, and I didn't really care
• 4:46
  Speaker 3: for it because you know, you would have to dis
• 4:50
  Speaker 3: road from bottom down and they would have this thing
• 4:58
  Speaker 3: and it were based you beg into it and it
• 5:02
  Speaker 3: goes into your rictum and that would put I think,
• 5:08
  Speaker 3: like water to try to flush it out. And I
• 5:11
  Speaker 3: was like, oh, it helps, it helps, it helps. And
• 5:14
  Speaker 3: then after that that was like, we're gonna do a colonospy.
• 5:18
  Speaker 3: So did the colonosopy. I had to drink so much stuff,
• 5:25
  Speaker 3: and even with me drinking all that, I still wasn't clean.
• 5:32
  Speaker 2: I was like, wow, that was like this stuff normally works.
• 5:35
  Speaker 3: And I was like, well, let's do a week prior
• 5:39
  Speaker 3: to all the way up until.
• 5:42
  Speaker 2: So then that's what I did.
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  Speaker 3: Unsuccessful again, and I was like, I was like, well,
• 5:50
  Speaker 3: let's try this and this and try the mirrorle eggs.
• 5:54
  Speaker 3: And I was like, why am I gonna keep taking
• 5:58
  Speaker 3: this and it's gonna keep making me sick? It made
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  Speaker 3: me so seek I was just thrown on up. I
• 6:06
  Speaker 3: was shaking.
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  Speaker 2: I was like, I'm not gonna keep doing this like
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  Speaker 2: because it's not working.
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  Speaker 3: So I talked my mama. I was like, I need
• 6:16
  Speaker 3: to go somewhere else. So I stopped going to the doctor.
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  Speaker 3: I went to a different doctor and this doctor was like, Okay,
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  Speaker 3: well we gonna help you. We're gonna help you, We're
• 6:28
  Speaker 3: gonna get to the bottom more. Okay, We're the I'm
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  Speaker 3: the best doctor is out here. And I was like, okay,
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  Speaker 3: I really didn't trust it.
• 6:38
  Speaker 2: So I was like, I just give you a shot.
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  Speaker 2: Epic failure. He couldn't figure it out. So then I.
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  Speaker 3: Went to a different doctor and he asked, you know
• 6:54
  Speaker 3: what was going on? And I told him, man, he said, well,
• 6:58
  Speaker 3: you know, when they were telling you to add fiber
• 7:04
  Speaker 3: to your die, you were only making your condition worse.
• 7:10
  Speaker 3: So I didn't know that. So I w was making
• 7:14
  Speaker 3: my condition worse than what it already was. And I
• 7:19
  Speaker 3: was like, oh my god. So then I just stopped
• 7:22
  Speaker 3: using you know, fib. I had cut it all the
• 7:26
  Speaker 3: way down for a minute. And then I was like, well,
• 7:30
  Speaker 3: let me try to go on a you know, a
• 7:34
  Speaker 3: meatless diet. So I did fruits, I did smoothies. I
• 7:39
  Speaker 3: was like, I'm gonna do a smoothie like for like
• 7:43
  Speaker 3: three weeks and see if you a help. Did the
• 7:46
  Speaker 3: smoothest didn't work?
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  Speaker 2: I did. We just baked fish didn't work.
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  Speaker 3: I tried a sparegust and I used to love aspaagus. Well,
• 8:00
  Speaker 3: one day I caught myself in an east asparious go
• 8:03
  Speaker 3: with my fishing. The next day I was in the
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  Speaker 3: hospital and I was like, oh my god, like, what
• 8:11
  Speaker 3: is going on? My condition was like yep, nope, So
• 8:18
  Speaker 3: now I can't even eat aspirious anymore.
• 8:21
  Speaker 2: It's a lot of stuff that I used to.
• 8:24
  Speaker 3: Like love and like eat now It's like I can't
• 8:27
  Speaker 3: eat it because he doesn't agree with me. And it
• 8:32
  Speaker 3: was like yeah, nope, no, it was time I trust something.
• 8:35
  Speaker 3: No Gustra City, murdercy Room. And so it was just
• 8:40
  Speaker 3: frustrating because I'm like, look, something is wrong, like I
• 8:43
  Speaker 3: need help, Like I was just crying. I was like,
• 8:48
  Speaker 3: just please tell me what it is, like I need help,
• 8:51
  Speaker 3: I really do. And so they was like, okay, well
• 8:56
  Speaker 3: we're gonna do another colon So did another did the
• 9:08
  Speaker 3: other colonoscary epic figure. They could never give me all
• 9:14
  Speaker 3: the way cleaned up, never no matter, and I would
• 9:18
  Speaker 3: drink drugs and jugs of it and I'm like, oh,
• 9:23
  Speaker 3: I hated it because it would make me so sick.
• 9:26
  Speaker 3: And no matter how motheruch I used a restaurant, it
• 9:30
  Speaker 3: was never enough to go do.
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  Speaker 2: A successful colonoscary.
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  Speaker 3: So I started going to this doctor named doctor Katz,
• 9:46
  Speaker 3: and he wanted.
• 9:47
  Speaker 2: To do.
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  Speaker 3: A test where he know, he'd take the fields and
• 9:54
  Speaker 3: see how long it too too, you know, for.
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  Speaker 2: It to come out.
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  Speaker 3: Everything was just feeling and I was just like, oh
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  Speaker 3: my god. And so I was going one time I
• 10:14
  Speaker 3: got Sek. And when I got Sek, I went to
• 10:18
  Speaker 3: the hospital and my bowls were literally seconds from rupturing.
• 10:25
  Speaker 3: I made it to the hospital just in time. They
• 10:28
  Speaker 3: had to rush me to but oh all right, and
• 10:31
  Speaker 3: ain't put me to sleep, and they had to do
• 10:34
  Speaker 3: a fecal disimpection because I had the I had a
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  Speaker 3: blockage in my stomach the size of a newborn babyhead
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  Speaker 3: stuck in my rictum and in my stomach. So it
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  Speaker 3: was just tough for me and I was just in
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  Speaker 3: so much pain and I was just so uncomfortable, and
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  Speaker 3: all I could do was cry because it was just
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  Speaker 3: like like what is it? Like, no, seriously, like what
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  Speaker 3: is it? Because it's just on side of suffering. And
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  Speaker 3: it went from this point to where I was in
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  Speaker 3: the hospital every two and a half three weeks getting
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  Speaker 3: fickle disinfections done because of I would have I kept
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  Speaker 3: getting blockages and then my stomach would run off so
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  Speaker 3: bad to like where a piece of it would just
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  Speaker 3: break round of it and it would just make my
• 11:40
  Speaker 3: stomach run off, and it was exhausting because you can't
• 11:46
  Speaker 3: get any sleep, you can't eat anything. So I was like,
• 11:51
  Speaker 3: so when I was like a try flower and water,
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  Speaker 3: So I started doing it every time I would get
• 11:57
  Speaker 3: a it would go off real bad because it would
• 12:02
  Speaker 3: irritate me as well, and so I would try there,
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  Speaker 3: I drink this stop working. So that was like, we're
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  Speaker 3: gonna do a biopsie on you, and I was like, okay,
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  Speaker 3: I need it because something is wrong.
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  Speaker 2: And so again like they never told me my results.
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  Speaker 3: And the reason how I knew it was Hirschbahma's disease
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  Speaker 3: is because so when I went back to Saint Francis
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  Speaker 3: Hospital and I was so, oh my god, I was
• 12:39
  Speaker 3: so sick, and my insurance.
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  Speaker 2: Elapsed because I had just turned you know, eighteen. I
• 12:50
  Speaker 2: was like, okay, well you know.
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  Speaker 3: You're not on your mom's insurance anymore. So they turned
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  Speaker 3: me around and they wouldn't see me so and I
• 13:01
  Speaker 3: was hurting so bad, and I feel like I was
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  Speaker 3: my balls was spent a rupture and I was like, God,
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  Speaker 3: please don't let this rupture and kill me. So my
• 13:12
  Speaker 3: mama she rushed me the method itself, and once I
• 13:15
  Speaker 3: got there, they checked me again and did everything they did.
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  Speaker 3: It wanted to do a kscan, so I said okay.
• 13:24
  Speaker 3: Once I did the catscan, the doctor came back and
• 13:29
  Speaker 3: he said, well.
• 13:31
  Speaker 2: How long have you had Hersprong's disease, and I was like,
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  Speaker 2: we've always they always said it could either be.
• 13:41
  Speaker 3: Crawns or Hersprong's disease, but I never knew it was
• 13:47
  Speaker 3: Hersprong's disease. And I was like, what do you mean?
• 13:52
  Speaker 3: And he said, you have Herspron's disease, he said. I said, well,
• 13:57
  Speaker 3: I never knew that, and he said, yeah, Saint Francis
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  Speaker 3: diagnose you with it. He was like, they didn't tell
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  Speaker 3: you and I was like, no, they didn't see me.
• 14:05
  Speaker 3: And he was like, well, you have hersh Rum's disease,
• 14:09
  Speaker 3: and right now we're finna rush you to the o
• 14:12
  Speaker 3: R because your bows are find a rupture. So I
• 14:18
  Speaker 3: was like, just imagine how I feel getting their bomb
• 14:24
  Speaker 3: dropped on top of me.
• 14:26
  Speaker 2: And I had to literally go into straight it into.
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  Speaker 3: Emergency surgeon because my boughs was from a rupture and
• 14:37
  Speaker 3: I was like, oh my god. So once I got
• 14:41
  Speaker 3: a name to it, I kept trying to find a
• 14:44
  Speaker 3: doctor here in Memphis who I could see, you know,
• 14:47
  Speaker 3: that'll try to help me.
• 14:50
  Speaker 2: Couldn't get up help. So the surgeon who I made
• 14:53
  Speaker 2: admits itself.
• 14:54
  Speaker 3: He's name is doctor Rodney Martin and he.
• 14:59
  Speaker 2: Was a surgeon. So he stayed doing a surge.
• 15:03
  Speaker 3: I me, something comes to his office and you know,
• 15:05
  Speaker 3: we would see and he would try to help me.
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  Speaker 3: So he would do sequels fickle disimpections on me and
• 15:17
  Speaker 3: I would go home, like a few days later, he
• 15:20
  Speaker 3: would see me home with you know, a couple of
• 15:23
  Speaker 3: paint piegls. And then so one time I actually guest
• 15:28
  Speaker 3: seek and I was like, okay, let me pick up
• 15:32
  Speaker 3: my babe, because I know my bats and a ruptured,
• 15:36
  Speaker 3: you know.
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  Speaker 2: And then I was trying to get disability because I
• 15:42
  Speaker 2: couldn't work any work and it was so hard for me.
• 15:47
  Speaker 2: And so.
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  Speaker 3: I remember one time I was working, was supposed to
• 15:54
  Speaker 3: start working at Fittix, and I went did my orientation.
• 15:59
  Speaker 3: I wasn't feeling good while, but I was like, you know,
• 16:01
  Speaker 3: I'm just you know, toughing it out. When I got
• 16:06
  Speaker 3: through with my organization, I literally walked outside. I was
• 16:11
  Speaker 3: waiting on my mom to come pick me up, and
• 16:14
  Speaker 3: I was hurting so bad. I collapsed in the parking lot.
• 16:18
  Speaker 3: When I woke up, I was in the hospital and
• 16:23
  Speaker 3: they were like, well, we don't know how to unstop you.
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  Speaker 2: And I was like, this is crazy.
• 16:32
  Speaker 3: And then my mom she called my manager and said
• 16:39
  Speaker 3: that you know, hey, she was sick, she collectsed, but
• 16:45
  Speaker 3: she really need her insurance. So he let me come
• 16:48
  Speaker 3: to work and I worked all the way up until
• 16:51
  Speaker 3: he retired. And after that I had to pull up
• 16:54
  Speaker 3: because I couldn't work anywhere else because they wouldn't let me,
• 17:00
  Speaker 3: you know, because of my condition. And it was just tough.
• 17:05
  Speaker 3: So when I started going to make the south and
• 17:10
  Speaker 3: seeing my surgeon, doctor Martin, he told me, since you
• 17:19
  Speaker 3: don't have any insurance, you know you have to you
• 17:24
  Speaker 3: would have to pay a lot of money to get
• 17:27
  Speaker 3: your large colon removed. Because my colon it wasn't working
• 17:33
  Speaker 3: it all, it wasn't functioning. It was just terrible. So
• 17:39
  Speaker 3: I was trying to give my disability. That was like, oh, well,
• 17:43
  Speaker 3: we're thinking she spined.
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  Speaker 2: You know.
• 17:47
  Speaker 3: It took so long for it to get approved. And
• 17:50
  Speaker 3: once he got approved, I went back to the hospital
• 17:53
  Speaker 3: because I guess see, of course, and they did the
• 17:59
  Speaker 3: faculties and pair and so normally he would let me
• 18:03
  Speaker 3: go home, you know, after a few days of being
• 18:05
  Speaker 3: in the hospital. You would see me out with paying
• 18:07
  Speaker 3: medication and he'll have me follow up in his office.
• 18:13
  Speaker 3: So this time I was in the hospital, I have
• 18:19
  Speaker 3: put on my clothes. I was like, I'm gonna go home,
• 18:22
  Speaker 3: you know, and you know, I'm gonna see him out patient.
• 18:30
  Speaker 3: And so he came in and he was like, watch
• 18:33
  Speaker 3: why you gat your clothes? And I was like, will
• 18:36
  Speaker 3: you always let me go home?
• 18:38
  Speaker 2: You know?
• 18:39
  Speaker 3: And he was like, yeah, you need to take a
• 18:44
  Speaker 3: clothes back off. And I was like, what's wrong and
• 18:49
  Speaker 3: he was like, it wasn't successful. Smile, I'm removing your
• 18:54
  Speaker 3: entire lotch coldon. So yeah, you had listened twenty four
• 18:58
  Speaker 3: hours and I was like what And so I was like,
• 19:05
  Speaker 3: oh my god, and I was so scared. I was
• 19:09
  Speaker 3: in surgery for soul long, so many hours and it
• 19:19
  Speaker 3: was a lot. And so after that, I thought, maybe,
• 19:22
  Speaker 3: you know, I would be better. Absolutely not still ahead complications,
• 19:30
  Speaker 3: still was having surgeries.
• 19:33
  Speaker 2: I'm talking about when I've had over one hundred plus
• 19:37
  Speaker 2: surges and I'm still having them to this day. And
• 19:41
  Speaker 2: it's so bizarre because it's like I need help and
• 19:47
  Speaker 2: I can't get help here. It's so cold. That's it's
• 19:55
  Speaker 2: so so.
• 19:57
  Speaker 1: Yeah. Absolutely, I mean, that's just an incredible, incredible story's
• 20:06
  Speaker 1: thus far, just in terms of I can't quite get
• 20:15
  Speaker 1: the whole you were, you were diagnosed with with hirshprungs,
• 20:21
  Speaker 1: but nobody kind of told you that that's the thing,
• 20:25
  Speaker 1: or nobody nobody kind of told you or your mum
• 20:27
  Speaker 1: or whoever, that that you had hirshprungs, which I mean,
• 20:33
  Speaker 1: that's that's astonishing to me that that nobody at what
• 20:37
  Speaker 1: age because you said you were of around sort of
• 20:40
  Speaker 1: high school age. What age did somebody finally tell you
• 20:45
  Speaker 1: you had it?
• 20:48
  Speaker 2: Ah?
• 20:49
  Speaker 3: I found it out when iurs are in my twenties,
• 20:55
  Speaker 3: so I had literally like when I once want to
• 21:00
  Speaker 3: see this When I found out because I had what's
• 21:05
  Speaker 3: her hospital? And I was like, well, your insurance left
• 21:09
  Speaker 3: and they won't see you. It's my mama was like,
• 21:14
  Speaker 3: I'm gonna rush you to another hospital. And this I
• 21:18
  Speaker 3: was able to find help, and again it was just
• 21:24
  Speaker 3: so crazy because like I need help and I can't
• 21:28
  Speaker 3: get help here in Memphis.
• 21:32
  Speaker 2: I can't far as pain wise, I can't get help
• 21:38
  Speaker 2: here because they want to Okay, we'll let's do a
• 21:42
  Speaker 2: nerve block. You're okay, So so yeah.
• 21:51
  Speaker 3: It's after I got the large portion of my call
• 21:57
  Speaker 3: and removed, I thought everything would be okay.
• 22:00
  Speaker 2: But it wasn't.
• 22:03
  Speaker 3: I now have a iliostomy bag and I had to
• 22:10
  Speaker 3: get ah, is it.
• 22:15
  Speaker 2: A protect me done? It's what that Barbie?
• 22:20
  Speaker 1: But yes, so yes, I the name's gone out of
• 22:26
  Speaker 1: my head, but yes, I know what you mean. But
• 22:28
  Speaker 1: the Dave's gone out by you see.
• 22:33
  Speaker 2: And it's just and I'm still having surgery to this day.
• 22:39
  Speaker 3: And I have been trying to get help because again
• 22:46
  Speaker 3: I can't get help here in Memphis, and I try everything.
• 22:52
  Speaker 2: But a couple of years.
• 22:56
  Speaker 3: Like maybe two years ago, like two thousand and four
• 23:00
  Speaker 3: to be.
• 23:00
  Speaker 2: Than I five. I actually know two thousand and four.
• 23:08
  Speaker 3: Yeah, So my grandmother pastor her my grandmother and her pastor, they.
• 23:20
  Speaker 2: You know, that was praying for me. And I was like,
• 23:23
  Speaker 2: you know, hey, what's going on? And I told them, I.
• 23:27
  Speaker 3: Was like, I don't know, and I need help. And
• 23:32
  Speaker 3: so I started calling around try to see where I
• 23:35
  Speaker 3: could get help from. And I got in contact with
• 23:41
  Speaker 3: Shane's Hospital.
• 23:42
  Speaker 2: It's in Gamesville, Florida, and I went there.
• 23:48
  Speaker 3: People they actually came up with the money for me
• 23:52
  Speaker 3: to fly out there. And when I get up there,
• 23:56
  Speaker 3: they I got immitted to the House hospital and they
• 24:00
  Speaker 3: were helping me out. But I had to leave because,
• 24:05
  Speaker 3: you know, because of financial wise and my mom. I
• 24:09
  Speaker 3: didn't want my mom to lose a job, so I
• 24:13
  Speaker 3: left and came back here. And it's just been the
• 24:17
  Speaker 3: science since like, Okay, you can't get any help from.
• 24:21
  Speaker 2: Anywhere, and I don't.
• 24:27
  Speaker 3: I'm not the person for you know, just ask for
• 24:30
  Speaker 3: help and people. What people fail to realize is with
• 24:34
  Speaker 3: her swungs is easy. Comes with a lot of things.
• 24:38
  Speaker 2: Like I had heard surgery.
• 24:45
  Speaker 3: I had a tumor that was on the back of
• 24:47
  Speaker 3: my knee that I had to give a moved. And
• 24:51
  Speaker 3: once I get a removed, I thought, okay, since they
• 24:55
  Speaker 3: closed it, you know, I would be okay, No.
• 24:58
  Speaker 2: It busts why to open And it was just terrible.
• 25:05
  Speaker 2: And it's a lot. It's a lot. Some days are
• 25:12
  Speaker 2: like I have a lot of bad days.
• 25:16
  Speaker 3: But when I do have my good days, I praise
• 25:19
  Speaker 3: them because like, yay, you know, you don't have me
• 25:22
  Speaker 3: dare I don't feel down, I don't feel you know,
• 25:27
  Speaker 3: say it or whatever.
• 25:29
  Speaker 2: But it's a lot.
• 25:33
  Speaker 3: And yeah, a lot of people that I don't realize
• 25:36
  Speaker 3: or understand. But this is a serious condition and you
• 25:42
  Speaker 3: would never know until it's you walking in the shoes.
• 25:48
  Speaker 1: Yeah, yeah, I think something Hirshprungs is such an odd one,
• 25:51
  Speaker 1: isn't it, Because it is, it is so different for everybody.
• 25:57
  Speaker 1: And you'll have spoken to people before who have they've
• 26:02
  Speaker 1: had the pull through surgery and then kind of nothing else. Really,
• 26:08
  Speaker 1: they'll have a pull through, everything will seem as you know,
• 26:12
  Speaker 1: as normal as normal can be, and then and then
• 26:17
  Speaker 1: they'll live the rest of their lives. And then you
• 26:19
  Speaker 1: have some who are sort of on right on the
• 26:20
  Speaker 1: other end of the spectrum of you know, hundreds of
• 26:26
  Speaker 1: surgeries in and out of hospital, and then where everything
• 26:30
  Speaker 1: gets a lot more complicated. So Hirshprung's, I think for
• 26:34
  Speaker 1: anybody listening, Hirshprung's is very different in different people. So
• 26:40
  Speaker 1: when and also with it being very rare, it's also
• 26:44
  Speaker 1: very difficult for people to i mean, even know what
• 26:48
  Speaker 1: the condition is, what part of the body, even effects.
• 26:51
  Speaker 1: If you've never heard of hersprung before, you wouldn't automatically
• 26:55
  Speaker 1: go well, it's a stomach condition. So and then to think, well,
• 27:01
  Speaker 1: actually it's very different in lots of different people, I
• 27:04
  Speaker 1: think is something that's definitely important, definitely important to bear
• 27:10
  Speaker 1: in mind. So when so when you're going through a
• 27:14
  Speaker 1: lot of different surgeries, a lot of issues. Are you
• 27:19
  Speaker 1: as well as talking to lots of different doctors. Are
• 27:23
  Speaker 1: you doing bits and pieces of your own research as
• 27:27
  Speaker 1: well and trying to sort of look and find out, yeah,
• 27:32
  Speaker 1: what could potentially be the issue as well as talking
• 27:35
  Speaker 1: to different doctors.
• 27:38
  Speaker 3: Well, the doctors that are talking little that I've talked to,
• 27:44
  Speaker 3: you know, is they they get it, but they don't
• 27:50
  Speaker 3: get it. And it's like, you know, you have the
• 27:55
  Speaker 3: worst case of it, and it's just like we don't
• 27:59
  Speaker 3: know how to we don't know how to help you.
• 28:02
  Speaker 3: And it's different. It's difficult, and I look online and
• 28:07
  Speaker 3: I look at different people videos and I try to,
• 28:11
  Speaker 3: you know, do my own research and figure okay, what
• 28:16
  Speaker 3: can I do, so, you know, make this not so
• 28:23
  Speaker 3: much of a horb but kind of semi normal, you know.
• 28:31
  Speaker 3: It's you know, and like you said, a lot of
• 28:34
  Speaker 3: people's situations are different, and people be like.
• 28:39
  Speaker 2: Well, well, what's there, Oh, oh, you just got a
• 28:44
  Speaker 2: stone condition.
• 28:45
  Speaker 3: You can't use the redskin. I mean, all you have
• 28:47
  Speaker 3: to do is use this and you can go like, no,
• 28:51
  Speaker 3: that's not it, Like you don't understand, you couldn't even
• 28:58
  Speaker 3: fathom the surgery and the procedures and just just everything
• 29:04
  Speaker 3: along with her strongs and itself.
• 29:08
  Speaker 2: Like you will know what it is, you willn't know
• 29:12
  Speaker 2: how the.
• 29:13
  Speaker 3: Other person feel. But I feel as if for us
• 29:19
  Speaker 3: who have it, like we can't understand each other because
• 29:24
  Speaker 3: we go through it and like nobody else understand what
• 29:29
  Speaker 3: it is. Like one girl, she she asked me, She said,
• 29:39
  Speaker 3: what do you think you just need to be on
• 29:41
  Speaker 3: like lexities and everything will be okay? Or do you
• 29:46
  Speaker 3: think you know you need to take these things you
• 29:51
  Speaker 3: know you will be better?
• 29:53
  Speaker 2: And it's like, no, you have the slightest idea.
• 29:59
  Speaker 3: And she it was like, well, they say, you know
• 30:02
  Speaker 3: you catch it in a baby and then it can
• 30:05
  Speaker 3: be reversed, and you know everything is No, it's not you.
• 30:15
  Speaker 2: It's not reversible. You know, I mean you've you're stuck
• 30:21
  Speaker 2: with these Well why is you know, some people they
• 30:28
  Speaker 2: just don't understand.
• 30:30
  Speaker 1: No, No, that's right, And I think I think it
• 30:33
  Speaker 1: was as we record. Now, last week I asked for
• 30:39
  Speaker 1: people's assumptions with Hirshprungs so that I could do a
• 30:43
  Speaker 1: post about and there's a lot in there talking about well,
• 30:46
  Speaker 1: you had it as a baby, so therefore you don't
• 30:48
  Speaker 1: have it anymore. Well, that's not true. You will always
• 30:51
  Speaker 1: have Hirshbruss. Yes, you'll have. You know, in many cases,
• 30:56
  Speaker 1: you are almost all cases, you will have surgery in
• 30:59
  Speaker 1: order to removed the part that doesn't work, the pull
• 31:02
  Speaker 1: through surgery. There's three different ways of doing that. But
• 31:06
  Speaker 1: you know, just because you had the surgery. I think
• 31:10
  Speaker 1: it's really important to recognize individuality in everybody that just
• 31:17
  Speaker 1: because you had the surgery, that doesn't necessarily mean that
• 31:21
  Speaker 1: everything's fine, and also doesn't necessarily mean that you won't
• 31:25
  Speaker 1: have surgery again. It is I think you're right. It
• 31:29
  Speaker 1: is really individual, really really individual. You said also you
• 31:34
  Speaker 1: had obviously had the colon removed, and you said you
• 31:40
  Speaker 1: had the worst case of Hirschwongs. Did they give was
• 31:44
  Speaker 1: that sort of did they give a proper medical name
• 31:47
  Speaker 1: for that, or did they just say this was just
• 31:50
  Speaker 1: a very severe case.
• 31:55
  Speaker 2: I have the worst case of posch Frans disease.
• 31:58
  Speaker 3: And you know, so again like Memphis. I don't get
• 32:06
  Speaker 3: me wrong, I love where I live, but again they're not.
• 32:12
  Speaker 2: Educated, you know, and.
• 32:18
  Speaker 3: I can't get help here. So it's just like, oh, well,
• 32:22
  Speaker 3: we're gonna figure out, We're gonna figure it out, and
• 32:25
  Speaker 3: then they would get so far into it and I'd
• 32:27
  Speaker 3: be like, Okay, yeah, we we thought we knew what
• 32:32
  Speaker 3: we were doing, but no, we don't know what we're doing.
• 32:35
  Speaker 2: Like we it's way.
• 32:40
  Speaker 3: It's way deeper in what we thought and what we
• 32:44
  Speaker 3: could handle.
• 32:45
  Speaker 2: So it's so wide. Yeah, it's why, you know, and
• 32:51
  Speaker 2: it gets.
• 32:52
  Speaker 3: Overwhelmed in it times because, like I said, comes with
• 33:00
  Speaker 3: different things. And I went to the hospital and I
• 33:06
  Speaker 3: was like, oh, well, we found something and it looked
• 33:11
  Speaker 3: like cancling and I'm like, you gotta kid me. And
• 33:17
  Speaker 3: I was like, you know, were saying it in your
• 33:20
  Speaker 3: stomach and I'm like, well, I'm just praying to God that.
• 33:25
  Speaker 2: Once they retested it's not.
• 33:28
  Speaker 3: Because it's at it's a whole like and having a
• 33:34
  Speaker 3: lot of surgeries this you know on your stomaching and
• 33:40
  Speaker 3: other parts that hershbrongs is easy.
• 33:44
  Speaker 2: Or show we like some people like one girl she said,
• 33:49
  Speaker 2: she asked me.
• 33:50
  Speaker 3: She said, so when you have Hirshbong's dis ease, you
• 33:57
  Speaker 3: just have Hirshbron's disease. And they see no, like a
• 34:01
  Speaker 3: lot of people, they have her strongs and it comes
• 34:05
  Speaker 3: with a lot of different up for stuff.
• 34:07
  Speaker 2: Like won't. I saw one.
• 34:09
  Speaker 5: Story this lady she said she had hers her son
• 34:14
  Speaker 5: had her Swrong's disease, and along with his Herswrong's disease,
• 34:19
  Speaker 5: he had heart problems and epilepsic Like it's just not.
• 34:25
  Speaker 2: You know, just there, bass if.
• 34:28
  Speaker 3: It's a lot way more to it than it and
• 34:32
  Speaker 3: it's just man, and I just keep fighting and I
• 34:38
  Speaker 3: keep trying, and it's just like a good day is
• 34:43
  Speaker 3: a good day, and a bad day is like, okay,
• 34:46
  Speaker 3: it's a bad day, mostly in bed, like.
• 34:50
  Speaker 2: Bottle of crying with a heating pad on my stomach.
• 34:54
  Speaker 2: It's just hard, it is.
• 34:58
  Speaker 3: And I just.
• 35:00
  Speaker 1: You're right. And there is a there's a lot of
• 35:03
  Speaker 1: other associated conditions again, things that I didn't I didn't know.
• 35:07
  Speaker 1: I mean that there's some that are probably more well known,
• 35:11
  Speaker 1: like down syndrome and hirshprungs. A lot of people do
• 35:17
  Speaker 1: have that, But there are a lot of conditions. And again,
• 35:20
  Speaker 1: how how much related to the hirshprungs and how much
• 35:24
  Speaker 1: is just having that separate condition on its own, I
• 35:27
  Speaker 1: don't know. Again, that'd be individual in everybody. But there
• 35:31
  Speaker 1: are a lot of other associated conditions when it comes
• 35:34
  Speaker 1: to hirshprungs. You mentioned there about good days and bad days,
• 35:41
  Speaker 1: and I think everyone with hirshprungs can more could definitely
• 35:44
  Speaker 1: relate to that, whether whether you have a more severe
• 35:49
  Speaker 1: case or whether you have less less severe case. I
• 35:54
  Speaker 1: guess everybody. Everybody goes through those those good days those
• 35:59
  Speaker 1: bad days, and sometimes there's just there's just no reason
• 36:02
  Speaker 1: for it. It's not necessarily something you've eaten or something
• 36:05
  Speaker 1: you've done or whatever. You're just it's just what it is.
• 36:10
  Speaker 1: But talk to me about the good days for you.
• 36:13
  Speaker 1: What do the good days look like for you?
• 36:17
  Speaker 3: On good days, for me, it's like, you know, I
• 36:24
  Speaker 3: get to interact with my with my fifteen year old brother,
• 36:28
  Speaker 3: I get to go outside and you know, play with him.
• 36:32
  Speaker 2: A good day is me dance, and.
• 36:35
  Speaker 3: A good day is me going outside walking because I
• 36:39
  Speaker 3: live downtown, so.
• 36:40
  Speaker 2: It's real.
• 36:43
  Speaker 3: Pretty and you know, peaceful and when it's not freezing,
• 36:47
  Speaker 3: you know.
• 36:47
  Speaker 2: I love to go walk.
• 36:49
  Speaker 3: But lately I was like, you know what, if it's
• 36:53
  Speaker 3: a good day, I just stay in the house and
• 36:56
  Speaker 3: I just like lyne dance and I just spend time
• 37:00
  Speaker 3: with my family, you know, So a good.
• 37:04
  Speaker 2: Day is just like I love my good days.
• 37:08
  Speaker 3: I watch we watched me and my brother watch movies together,
• 37:13
  Speaker 3: and it's not.
• 37:15
  Speaker 2: So much of me condemned will be you know, confined,
• 37:24
  Speaker 2: confine will be here. So that's what a good day
• 37:29
  Speaker 2: is for me.
• 37:31
  Speaker 1: Yeah, no, that's and I think that's another thing when
• 37:36
  Speaker 1: when I guess this kind of goes for chronic illness
• 37:39
  Speaker 1: in general. But those things like going out for a walk,
• 37:45
  Speaker 1: not being you know, confined to one particular place or
• 37:50
  Speaker 1: one part of the house, being able to play sports,
• 37:53
  Speaker 1: being able to go and see friends, socialize, go out wherever.
• 37:59
  Speaker 1: I think a lot of people say that for granted,
• 38:02
  Speaker 1: if you you know, if you don't have a chronic
• 38:04
  Speaker 1: illness or anything of that nature. I think people definitely
• 38:09
  Speaker 1: take those things for granted. And it's interesting you say,
• 38:12
  Speaker 1: you know, my good days are when I can do this, this, this,
• 38:16
  Speaker 1: and this, which I think a lot of people without
• 38:21
  Speaker 1: are conditioned and without a chronic illness condition would probably say, well,
• 38:25
  Speaker 1: that's a normal day, you know. So I think that's
• 38:29
  Speaker 1: that's really interesting that sort of the good days are
• 38:34
  Speaker 1: just again, I just are just when you're just kind
• 38:40
  Speaker 1: of well enough, if that makes sense.
• 38:43
  Speaker 2: Yeah, they're makes sense.
• 38:45
  Speaker 3: You're not and like I said it, I mean, with
• 38:49
  Speaker 3: harsh fan disease, you don't get to pick and choes
• 38:53
  Speaker 3: like today's.
• 38:57
  Speaker 2: The people be like, dog, you still don't feel good,
• 39:03
  Speaker 2: you know.
• 39:04
  Speaker 3: And I'm like, if I had the power, I mean,
• 39:09
  Speaker 3: I would be better every day.
• 39:12
  Speaker 2: You don't know. But again with.
• 39:15
  Speaker 3: Herschwans, you don't get to peak when it's a good day.
• 39:20
  Speaker 3: You don't get to peak whether you're gonna have a
• 39:23
  Speaker 3: great day or a bad day.
• 39:25
  Speaker 2: It's just like, hey, here I go.
• 39:30
  Speaker 1: No, you don't know, You're absolutely right, yeah, wou'd be
• 39:33
  Speaker 1: great for kids if, like, you know, every month we
• 39:37
  Speaker 1: could say okay, well you're allowed five bad days and
• 39:41
  Speaker 1: twenty five good days, and we could just pick the
• 39:43
  Speaker 1: good days and the bad days. That would be That
• 39:45
  Speaker 1: would be amazing.
• 39:49
  Speaker 3: It would a lot of people, you know, I tell
• 39:54
  Speaker 3: people all of time, like you know, with this condition
• 40:00
  Speaker 3: and bad being so bag, you don't get to choose,
• 40:03
  Speaker 3: you know. If I'm like, today isn't a good day
• 40:07
  Speaker 3: for me, but I'm still.
• 40:10
  Speaker 2: I'm hanging in here.
• 40:11
  Speaker 3: I'm gonna keep fighting until i can't fighting no more.
• 40:17
  Speaker 2: And then again.
• 40:18
  Speaker 3: When it's a good day, I'm like, hey, I'm a
• 40:21
  Speaker 3: little dancing and messing around on TikTok, playing dancing with
• 40:27
  Speaker 3: my brother. So I mean, I cherish my good days,
• 40:31
  Speaker 3: you know, and I feel like people need to cherish
• 40:35
  Speaker 3: their great days, you know, despite of the hirshworms disease,
• 40:40
  Speaker 3: in spite of us not feeling good. And I try
• 40:44
  Speaker 3: to agree with you with what you said, because you know,
• 40:47
  Speaker 3: if it's on us versus a normal person, it's like, well,
• 40:53
  Speaker 3: you know, this is normal of us, you know, you know,
• 40:57
  Speaker 3: it always a good day, sometimes times nine times out
• 41:01
  Speaker 3: of say, it's always going to be a good day
• 41:03
  Speaker 3: for them.
• 41:04
  Speaker 2: But it's not like it for us. It's totally different.
• 41:08
  Speaker 1: Absolutely, And I think that's an excellent sentiment to wrap
• 41:12
  Speaker 1: up on because I think, you know, having those good
• 41:16
  Speaker 1: days and cherishing those good days, I think cherishing potentially
• 41:22
  Speaker 1: what what we take for granted. And again, people who
• 41:26
  Speaker 1: have have hirsprungs in most days and good days, I
• 41:29
  Speaker 1: think we take those for granted as well. That just
• 41:31
  Speaker 1: how how ill we were or how ill we have been.
• 41:37
  Speaker 1: And then so I think that's that's incredibly that's a
• 41:42
  Speaker 1: really good message, I think, just to cherish those those
• 41:45
  Speaker 1: good days. But I just want to say thank you.
• 41:48
  Speaker 1: So much for coming on and sharing what has been
• 41:52
  Speaker 1: thus far. Yeah, a really really interesting story full of
• 41:59
  Speaker 1: I think a lot of parts that people will listen
• 42:04
  Speaker 1: to and recognize. And I wish you, yes all the
• 42:10
  Speaker 1: very very best for the future going forward.
• 42:15
  Speaker 3: Thank you so much, and thank you for you know
• 42:19
  Speaker 3: having me as well and has been great talking to you.
• 42:24
  Speaker 1: That's my pleasure. Thank you very much, thank you, thank
• 42:31
  Speaker 1: you for listening and being part of this growing community.
• 42:34
  Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
• 42:37
  Speaker 1: leave a review, and share it with someone who might
• 42:40
  Speaker 1: need it. You can connect with us on social media
• 42:43
  Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
• 42:48
  Speaker 1: See you next week.
• 43:01
  Speaker 3: B