76: The Hirschsprung’s Hour with Tom Richard - Episode 76

You are listening to the Hirschbrung's Hour on UK Health Radio, where I interview

incredible people with connection to Hirschbrung's disease and other associated conditions, such

as IBD, IBS, Crohn's, Colitis and Ulcerative Colitis. Each week I bring you a new and

exciting interview with people from all walks of life, including charity founders, models

and professional sports people. We go through the ups and downs of having Hirschbrung's

with a positive message throughout. Hello and welcome to episode 117 of Tom's

Hirschbrung's podcast. I'm joined this afternoon by Shakira. Shakira, welcome to the podcast.

Thank you for whatever me, so long. My pleasure, my pleasure. Thank you so much for coming

on. Now you have Hirschbrung's and we are going to talk really about your story, your

journey with Hirschbrung's. So it's over to you. Thank you so much for having me. Like I

said, I feel as if, you know, I need to talk about it. You know, I am a shy person and, you

know, like to keep things, you know, between like with myself and my mom who actually been

there with me through there. And also other family members as well. But so a little bit

of a big story about me. Um, um, 34 years old. Um, I was born October 26th. And when I was

born, you know, I was born with you, but they weren't educated. Um, you know, Hirschbrung's

is those like, oh, you know, just a fiber, a fiber, but I kept Lebanon hospital was like my

second home. Like I stayed in the hospital and that was like, well, let's try animal. And

they would do animals until like my body, which is bleak and I will be in so much crying.

And I was like, well, we don't understand, you know, why she's having this problem because

everything, you know, is she's perfectly fine, but I wasn't perfectly fine at all. So there

was like, just increase her fiber, increase her fiber. So this was my mom, be she increased

my fiber. And so as I got older, like, you know, growing up, I still had the complications.

And I was like, well, try prone juice. And I was like, no, I was like, oh, try mineral oil and

mineral oil, it actually was better because it was just, it didn't have a taste. And it didn't,

like, right, my stomach or anything. So it was pretty much okay for a couple of years. I

think all a couple of months. And then at the day, it just went like right back to like, okay,

what is going on? So as I got in, I think I think it was like, high school is like when it started

to get worse. And I would just cry. And it would look like as if I was six months pregnant.

And I was like, God, I'm in so much pain, like something is wrong. And I saw my mom, I said,

look, something is not right. And I know it's not because there's no reason why I can't go

to the prison. There's no reason why I'm hurting this bed as I am. And so I said, I'm going to take

a stand. So I caught around, get me an appointment. And he wants to do a cleanse. And I didn't really care

for it because, you know, you will have to disrupt from bottom down. And they will have this pain.

And it will, will basically you beg into it. And it goes into your rectum. And they will put, I think,

like, water to try to push it out. And I was like, oh, it helps. It helps. It helps. And then

that was like, we're going to do a colonoscopy. So did the colonoscopy? I hate to drink so much love.

And even with me drinking all that I still wasn't clean. That was like, wow, that's normally works.

And I was like, well, let's do a week prior to all the way up and see you. So that's what I did.

Unsuccessful again. And I was like, I was like, well, let's try this and this and try the mirror legs.

And I was like, why am I going to keep taking this? And it's going to keep making me see. It made me

so sick. I was just throwing up. I was shaking. I was like, I'm not going to keep doing this. Like,

because it's not working. So at some moment, I was like, I need to go somewhere else. So I stopped

going to be a doctor. I went to a different doctor. And these doctors were like, okay,

well, we're going to help you. We're going to help you. We're going to get to the bottom more. Okay,

we're I'm the best doctor. It is. And I was like, okay, I really didn't trust you. So I was like,

I just give you a shot. Epic failure. He couldn't figure it out. So then I went to a different doctor.

And he ex, you know, what was going on and I told him and he said, well, you know, when they were

telling you to add fiber to your diet, you were only making your condition worse. So I didn't

know that. So I was making my condition worse than what it already was. And I was like, oh, my god.

So then I just stopped using, you know, fiber. I could do that all the way down for a minute.

And then I was like, well, let me try to go on a, you know, a meatless diet. So I did fruits.

I did smoothies. I was like, I'm going to smooth it like for like three weeks and see if it

would have healed the smoothies being worked. I did, we just baked these, didn't work. I tried

a spherries and I used to love a spherries. Well, one day I caught myself and I eat some

a spherries go with my fish and the next day I was in a hospital. And I was like, oh, my god,

like what is going on? My condition was like, yep, nope. So now I can't even eat a spherries

anymore. It's a lot of stuff that I used to like love and like eat. Now it's like, I can't eat it.

Well, because he don't agree with me. And it was like, yeah, nope, nope. It was not my

try something. Nope. Go straight to the marathon. And so it was just first starting because I'm

like, look, something is wrong. Like, I need help. Like, I was just crying. I was like, just

please tell me what it is. Like, I need help. I really do. And so they was like, okay, well,

we're going to do another um, okay, health radio. This station, I make you feel good.

Okay, health radio. This station, I make you feel good.

Colony asking. So I did another, did the other colonoscopy epic figure that could never give me

all the way claimed up. Never. No matter. And I would drink drugs and drugs of it. And I'm like,

oh, like, I hated it because it would make me so sick. And no matter how much I used the

racer, it was never enough to go do a successful colonoscopy. So I started going to this doctor,

nine doctorate. And he wanted to do a test where, you know, he'd take the pills and see how long

to, you know, for it to come out epic figure. Everything was just still alive. And I was just like,

oh, my God. And so I was cool on it. One time I got sick. And when I got sick, I wanted to

go to the hospital. And my bals were literally seconds from rupturing. I made it to the hospital

just in time. That had to rush me to the OR. And they put me in the sleep. And they had to do a

thicker disinfection because I had the, um, I had a blockage in my stomach. The size of a newborn baby

stuck in my rectum and in my stomach. So it was just told for me, and I was just in so much pain,

and I was just so uncomfortable. And all I could do was cry because it's like, like, what is it?

Like no, seriously, like, what is it? Because it's just I'm tired of suffering. And it went from

that point to where I was in the hospital every two and a half or weeks. Again, fickle disinfections

done. Because of I would have, I can't give blockages. And then my stomach would run out so bad

till like, where a piece of it would just break the round of it. And it was just make my stomach

run off. And it was exhausted because you can't get in sleep. You can't eat anything. So I was like,

so when I was like, well, trust, glory and war. So I started doing it every time I would get a, um,

it would run off real bad because it would irritate me as well. And so I would try to add

drink this stop working. So that was like, we're going to do a biopsy on you. And I was like, okay,

I need it because something is wrong. And so, again, like they never told me my results. And the reason

how I knew it was hurt for my disease is because so one day I went back to St. Francis Hospital.

And I was so, oh my god, I was so sick. And my insurance, um, it left because I just turned,

you know, 18. I was like, okay, where you know, you're not on your mom's insurance anymore.

So they turned me around and they went see me. So and I was hurting so bad. And I feel like

else, my bell's was in a rupture. And I was like, God, please don't let this rupture and kill me.

So my mom, she rushed me to method itself. And once I get there, um, they checked me again and

did everything they wanted to do a case scan. So I said, okay, once I did the case scan, um,

the doctor came back and he said, well, how long have you had heart-strong disease? And I was like,

we've always, they always said it could either be crumbs or heart-strong disease. But I never knew

it was heart-strong disease. And I was like, what do you mean? And he said, you have heart-strong

disease. He said, I said, well, I never knew that. And he said, yes, St. Francis diagnosed you with it.

He was like, they didn't tell you. And I was like, no, they didn't tell me. And he was like, well,

you have heart-strong disease. And right now we can't rush you to the OR because your

mouths are in a rupture. So I was like, just imagine how I feel getting their bones dropped

on top of me. And I had to literally go and start it instead of, um, emergency surgery because

my bowel was in a rupture. And I was like, oh my God. So once I got an ambulance, I kept trying

to find a doctor here in Memphis who I could see, you know, did a try to help me, couldn't, you know,

help. So the surgeon who I met at Metisel, his name is Dr. Rodney Martin. And he was a surgeon.

So he stayed doing a surgery. I mean, some it comes to his office and, you know, we would see

and he would try to help him. So he would do sickles, sickoducin patients on me. And

I would go home like a few days later. He would sit me home with, you know, a couple of pain

peels. And then so one time I actually get sick. And I was like, okay, let me pick up my

bag because I know my bowel has been a rupture. You know, and then I was trying to get

disability because I couldn't work in a word. And it was so hard for me. And so, um,

I remember one time I was working, was supposed to start working at FedEx. And I went,

did my orientation. I went feeling good while I was there. But I was like, you know, I'm just,

no, suffering it out. When I get through with my orientation, I literally walked that side,

I was waiting on my mom to come pick me up. And I was hurting so bad, I collapsed in the park

when I woke up. I was in the hospital. And they were like, well, we don't know how to

unstop you. And I was like, this is crazy. And then my mom, she caught my manager and said that,

um, you know, hey, she was sick. She collared with, she really need her insurance. So he let me come

to work and I worked our way up until he retired. And after that, I had to pull up because I couldn't

work anywhere else because they wouldn't let me, you know, because of my condition. And it was

tough. So when I started going to make it itself and see my surgeon, Dr. Martin, he told me, um,

since you don't have any insurance, you know, you have to, um, you have to pay a lot of money

to get your, um, barge color removed because my calling, it wasn't working, it all, it wasn't

functioning. It was just terrible. So, um, I was trying to get my disability. That was like,

oh, well, we're thinking, you're she spied, you know, it took so long for it to get approved. And

once he got approved, I went back to the hospital because I got sick, of course, and

that did the fecal decent patient. And so normally, he would let me go home, you know,

after a few days of being in the hospital, he would send me out with pain medication. And he had

a heavy follow up, um, in his office. So this time, um, I was in hospital, I had put on my

clothes that was like, I'm gonna go out, you know, and, you know, I'm gonna see him out patient.

And so he came in and he was like, what, why you got your clothes done? And I was like,

well, you always let me go home. You know, and he was like, yeah, um, you didn't take the clothes

back off. And I was like, what's wrong? And he was like, it wasn't successful, um, tomorrow,

I'll remove your entire large clothing. So yeah, you got to listen 24 hours. And I was like,

what? And so I was like, oh my god. And I was so scared. I was in surgery for so long, so many hours.

And it was a lie. And so after that, I thought, maybe, you know, I would be better.

Absolutely not. Steed I had complications. Steal was having surgeries. I'm talking about,

when I pay over a hundred plus surgeries, and I'm still having the old city's day, and it's so

bizarre because it's like, I need help. And I can't get help here.

No, that's so close. That's so close. Yeah, absolutely. And I mean, that's just an incredible,

incredible story thus far. Just in terms of, I can't quite get the hold. You were diagnosed with

with her shbrungs, but nobody kind of told you, that's the thing, or nobody kind of told you,

or your mom, or whoever, that you had her shbrungs, which, I mean, that's that's astonishing to me,

that nobody, at what age, because you said you were, because I had a round some high school age,

at what age did somebody finally tell you? I said you had it.

I found out when I was in my 20s. So I had literally, like, 21, 22s when I found out, because I

had, with her hospital, and I was like, well, you're an insurance lab, and I won't see you.

And so, my mom was like, I'm going to rush you to another hospital, and this, I was able to find out.

And again, it was just so crazy because, like, I need help, and I can't get help here in Memphis.

I can't. Vars, pain wise, I can't get help here, because they want to, okay, we'll let's do a nerve lock here.

Okay, so, so yeah, after I get the large portion on my colon removed, I thought everything would be okay,

but it wasn't. I now have a illiostomy bag, and I had to get a, is it a protect me done?

Is that what they can worry about?

Yes, so yes, the name's gone out of my head, but yes, I know what you mean, but the

Dave's gone out my head.

And it's just, oh, and I'm still having surgery to this day, and I've been trying to get help,

because again, I can't get help here in Memphis, and I try everything, but a couple of years,

like maybe two years ago, like 2004, to bad, and I fight, I actually know 2004.

Yeah, so my grandmother pastor, my grandmother and her pastor, they, you know, that was

programmed for me, and I was like, you know, hey, what's going on? I told them, I was like, I don't

know, and I need help. And so I start calling her and try to see where I can get help from, and I

get in contact with Shane's hospital, it's in Gainesville, Florida, and I went there,

where they actually came up with the money for me to fly out there, and when I get up there,

they got me to the hospital, and they were helping me out, but I had to leave because, you know,

because of financial wise, and my mom, I didn't want my mom to lose her job. So I live in Cain

Big here, and it's just been the science sense, like, okay, you can't get any help from anywhere, and

I don't, I'm not the person to, you know, just ask for help, and people with, people that

realize it, with her sponsored ZZ comes with a lot of things, like, I hate, um,

UK Health Radio, this station, I make you feel good.

I had a tumor that was on the back of my knee that I had to give a move, and once I get a

move, I felt okay, since they closed it, you know, I would be okay, no, it was wide open,

and it was just terrible, and it's a lot, it's a lot, some days are like, I have a lot of bad days,

but when I do have my good days, I present, because like, yeah, you know, it don't have me there,

I don't feel there, I don't feel, you know, sad, or whatever, but it's a lot, and a lot of people

that don't realize or understand, but this is a serious condition, and you would never know

until it's you rockin' in the shoes. Yeah, yeah, I think, I mean, Hirschsprung's

is such a odd one, isn't it? Because it is, it is so different for everybody, and you'll have,

I've spoken to people before, who have, they've had the pull-through surgery, and then kind of

nothing else really, they'll have pull-through, everything will seem as, you know, as normal as

normal can be, and then, and then they'll live the rest of their lives, and then you have some

who's sort of on right on the other end of the spectrum of, you know, hundreds of surgeries

in and out of hospital, and then where everything gets a lot more complicated, so Hirschsprung's,

I think, you know, for anybody listening, Hirschsprung's, it's very different in different people,

so when, and also with it being very rare, it's also very difficult for people to, I mean,

even know what the condition is, what part of the body, even the effects, if you've never heard

of Hirschsprung before, you wouldn't automatically go, well, it's a stomach condition.

So, and then to think, well, actually, it's very different in lots of different people, I think

is something that's definitely important, definitely important to bear in mind, so when,

so when you're going through a lot of different surgeries, a lot of issues,

IU, as well as talking to lots of different doctors,

are you doing bits and pieces of your own research as well, and trying to sort of look and find out

what could potentially be the issue as well as talking to different doctors?

Well, the doctors that I've talked to, you know, is they, they get it, but they don't get it,

and it's like, you know, you have the worst case of it, and it's just like, we don't know how to

approach it, we don't know how to help you, and it's different, it's difficult, and I look online,

and I look at different people's videos, and I try to, you know, do my own research and figure,

okay, what can I do, so, you know, make this not so much of a hard, but kind of semi-normal,

you know, but it's, you know, and like you said, a lot of people's situations are different,

and people are like, well, what's there? Oh, you just got a stone condition, you can't use the

risk, I mean, all you have to do is use this and you can go like, no, this not it, like you don't

understand, you couldn't even fathom the surgeries and the procedures and just, just everything along

her scrums and it's still like, you wouldn't know what it is, you wouldn't know how the other person

feels, but I feel as if for us who have it, like we can't understand each other because we go

through it, and like nobody else understands what it is, like one girl, she, she asked me,

she said, what do you think you just need to be on like, legs it is, and everything will be okay,

or do you think, you know, you need to take this thing, you know, you'll be better, and it's like,

no, you have the slightest idea, and she was like, well, they say, you know, you catch it in a

baby and then it can be reversed, and you know, everything is, no, it's not, you, it's not reversible,

you, I mean, you, you're stuck with these, for like, is, you know, some people, they just don't

understand, no, no, that's right, and I think, I think it was, as we record now, last week, I,

I asked for people's assumptions with her scrums, so I could do a post about it, there's a lot in

there talking about where you had it as a baby, so therefore you don't have it anymore, well,

that's not true, you will always have, herch bros, yes, you'll have, you know, in many cases,

you've been almost all cases, you will have surgery in order to remove the part that doesn't work,

the pull through surgery, it's three different ways of doing that, but, you know, just because

you had the surgery, I think it's really important to recognize individuality in everybody,

that just because you had the surgery, that doesn't necessarily mean that everything's fine,

it also doesn't necessarily mean that you won't have surgery again, it, it is, I think you

write, it is really individual, really, really individual, you said also you had, obviously,

had the colon removed, and you said you had the worst case of herch bros, did they give,

was that so, did they give a proper medical name for that, or did they just say this was,

you know, just a very severe case?

I did just say that I had the worst case of herch bros disease, and, you know,

again, like, Memphis, I don't get me wrong, I love where I live, but, again, they're not

educated, you know, and I can't get help here, so it's just like, oh, but we're going to figure

out, we're going to figure it out, and then that will get so far into it, and I'd be like, okay, yeah,

we thought we knew what we were doing, but, no, we don't know what we don't, like, we

eat! It's way, it's way deeper in what we thought, and what we could handle, so it's so wide,

yeah, it's wide, you know, and it's overwhelming at times.

Because, like I say, it comes with different things, and

And I went to the hospital and I was like,

oh, will we found something?

And it looked like cancer.

And I'm like, you've got to kid me.

And I was like, you know, we sang it in your stomach.

And I'm like, well, I'm just praying to God that

once they retest it, it's not.

Because it's so light.

It's a whole lot in heaven, a lot of surgeries.

This, you know, on your stomach and in other parts

that her hormones disease will show it we,

like some people, like one girl she said, she asked me,

she said, so when you have her hormones disease,

you just have her hormones disease.

And they said, no, like a lot of people

they have her hormones.

And it comes with a lot of different stuff.

Like one, I saw one story.

This lady, she said she had her son had her hormones disease.

And along with his her hormones disease,

he had heart problems and epilepsy.

Like, it's just not, you know, just,

their passive is a lot way more toothed than it.

And it's just, man, I just keep buying and I keep trying.

And it's just like, a good day, it's a good day.

And a bad day is like, okay, it's a bad day.

I'm mostly in bed, like balled of crime

with a heat pad on my stomach.

It is hard.

It is in Azure.

You're right.

There is a lot of other associated conditions,

again, things that I didn't know.

I mean, there's some that are probably more well-known,

like Down syndrome and her sprungs,

a lot of people do have that.

But there are a lot of conditions.

And again, how much related to the her sprungs

and how much is just having that separate condition

on its own?

I don't know.

Again, that'd be individual in everybody.

But there are a lot of other associated conditions

when it comes to her sprungs.

You mentioned there about good days and bad days.

And I think everyone with her sprungs

can more, can definitely relate to that.

Whether you have a more severe case

or whether you have less severe case,

I guess, everybody goes through those good days,

those bad days.

And sometimes there's just no reason for it.

It's not necessarily something you've eaten

or something you've done or whatever.

It's just what it is.

But talk to me about the good days for you.

What do the good days look like for you?

Good days for me is like,

you know, I get to interact with my 18-year-old brother.

I get to go outside and play with him.

A good day is me dancing and a good day is me going outside

and walking because I live downtown.

So it's real pretty peaceful.

And when it's not freezing, you know,

I love to go walk with it.

Legally, I was like, you know what?

If it's a good day, I just stay in the house

and I just like line dance

and I just spend time with my family, you know?

So a good day is just like, I love my good days.

I watch, we watch, me and my brother

we watch movies together and it's not so much of me.

Condemns will be, you know, confined to a beer.

So that's what a good day is for me.

Yeah, no, that's, and I think that's another thing

when I guess this kind of goes for chronic illness in general.

But those things like going out for a walk,

not being confined to one particular place

or one part of the house, being able to play sports,

being able to go and see friends, socialize,

go out wherever.

I think a lot of people take that for granted.

If you don't have a chronic illness or anything of that nature,

I think people definitely take those things for granted.

And it's interesting that you say, you know,

my good days are when I can do this, this, this, and this,

which I think a lot of people without our condition

and without a chronic illness condition

would probably say, well, that's a normal day, you know?

So I think that's, that's really interesting

that sort of the good days are just again,

I just are just when you're just kind of well enough

with that makes sense.

Yeah, that makes sense.

You're not, and like I said, I mean,

with harsh bronzes, these, you don't get to peak

and choose like, and today's a good day.

And because I'll be like,

Dao, you still don't feel good, you know?

And I'm like, if I had the power,

I mean, I would be better every day.

You know, but again, with harsh bronzes,

you don't get to peak when it's a good day.

You don't get to peak whether you're going to have

a great day or a bad day.

It's just like, hey, you're out of control.

No, you don't, you're absolutely right.

You know, it'd be great if it could, if like, you know,

every month, we could say, okay,

well, you're allowed five bad days and 25 good days

and we could just pick the good days and the bad days.

That would be, that would be amazing.

It would, it would, a lot of you would, you know,

appeal people out of time, like, you know,

with this condition and bad bands so bad,

you don't get to choose, you know,

if I'm like, today isn't a good day for me,

but I'm still hanging in here.

I'm going to keep fighting until I can't fight anymore.

And then again, when it's a good day,

I'm like, hey, I'm a dancing and I'm missing

a rental Tik Tok playing dance when I brought this up.

I mean, I cherish my good days, you know,

and I feel like people need to cherish their great days.

You know, despite of the harsh ones disease,

the spite of us not feeling good

and I totally agree with you with what you said

because, you know, if it's on us versus a normal person,

it's like, well, you know, this normal for us, you know,

you know, it always a good day.

Sometimes, nine times out of 10,

it's always going to be a good day for them,

but it's not like it for us.

It's totally different.

Absolutely.

And I think that's an excellent sentiment to wrap up on

because I think, you know, having those good days

and cherishing those good days, I think,

cherishing potentially what will be taken for granted.

And again, people who have have harsh problems

and most days are good days.

I think we take those for granted as well

that just how ill we were or how ill we have been.

And then, so I think that's, that's incredibly,

that's a really good message, I think,

just to cherish those, those good days.

But I just want to say thank you so much for coming on

and sharing what has been thus far.

Yeah, a really, really interesting story.

Full of, I think, a lot of parts that people will listen

to and recognize and I wish you, yes,

all the very, very best for the future going forward.

Thank you so much.

And thank you for, you know, having me as well

and it's been great talking to you.

It's my pleasure.

Thank you very much.

Thank you.

Thank you for listening to the Hirschbrung's Hour

on UK Health Radio.

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