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Speaker 1: Really, my condition was continuously dropping. None of the treatment

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Speaker 1: was working. It got to the point where I was

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Speaker 1: actually that to give me nutrition through a tube.

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Speaker 2: It was hard because obviously anyone knows that if you

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Speaker 2: see blood, it's not a good thing at all, and

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Speaker 2: it's not something that's I don't think it's going to

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Speaker 2: go away.

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Speaker 3: The fear continues to fester. It just becomes a potential

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Speaker 3: really dark spiral for some patients.

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Speaker 1: I think my lowest point was having that sinking feeling

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Speaker 1: of my life is never going to be the same.

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Speaker 4: How terrifying would it be to fight an unknown enemy,

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Speaker 4: one you didn't recognize and didn't see coming. What if

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Speaker 4: that enemy was coming from within a disease that even

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Speaker 4: doctors couldn't identify. Nearly half of all Americans suffer from

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Speaker 4: some chronic illness, and many struggle for an accurate diagnosis.

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Speaker 4: These are their stories. I'm Lauren Brite Pacheco, and this

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Speaker 4: is symptomatic. Jose Torres has always felt most at home

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Speaker 4: when he can express himself, whether it's through music, poetry,

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Speaker 4: or visual arts.

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Speaker 1: Ever since I was kid, I used to always draw

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Speaker 1: like cartoons, and as I grew up, continued sketching actually

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Speaker 1: went to middle school for art specifically.

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Speaker 4: Though Jose was raised by his grandparents throughout his childhood,

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Speaker 4: his mother, Araceli, was always a huge part of a

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Speaker 4: support system. What kind of qualities does he have make

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Speaker 4: him so special?

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Speaker 2: He's intelligent, he's sensitive, he's hard working, he doesn't settle.

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Speaker 2: He's a very strong person. A lot of people grow

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Speaker 2: fond of him really quickly. He's very social, unlike me,

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Speaker 2: I'm the opposite of him. But he likes to be

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Speaker 2: around people and he likes to help people as well.

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Speaker 4: So tell me philosophy, poetry, reading, music, fan artist. How

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Speaker 4: did you get into boxing?

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Speaker 1: I had a bit of a rough upbringing, so that

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Speaker 1: was a way my mother identified was just like, let's

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Speaker 1: put that energy to something productive. Boxing was also a

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Speaker 1: huge sport just in the home, Like my grandfather growing

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Speaker 1: up would always watch like the big fights and whatnot.

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Speaker 5: So I was like, yeah, sure, why not? So we

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Speaker 5: found a gym.

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Speaker 1: I went, had a quick like intro session, loved it,

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Speaker 1: and that was it. If I wasn't in school, I

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Speaker 1: was likely in the gym.

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Speaker 4: And by the time you were a freshman and you

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Speaker 4: were really into boxing.

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Speaker 1: Yes, at that point, the idea was my trainer wanted

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Speaker 1: to start preparing me to compete in potentially the Golden

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Speaker 1: Gloves tournament to see how I.

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Speaker 4: Placed there, And at that point, no pun intended, but

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Speaker 4: you ended up getting knocked out in terms of health.

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Speaker 4: You know, I was saying, your mom must be tough,

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Speaker 4: but I should think to a certain extent, seeing you

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Speaker 4: box prepared her for what you were about to battle

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Speaker 4: in terms of your health.

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Speaker 1: My mom's a tough woman, but nothing prepared us for

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Speaker 1: that for the bout that came about with my health,

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Speaker 1: because yeah, it came out of nowhere.

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Speaker 5: It was just a regular day. I probably just.

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Speaker 1: Gotten back from college courses and I went to use

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Speaker 1: the restroom and there was blood.

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Speaker 5: So that was the first thing. I was like, Oh,

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Speaker 5: that's different.

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Speaker 1: But I didn't tell anyone because I just figured, oh,

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Speaker 1: it's stomach bug, maybe it's something I ate.

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Speaker 5: It'll go away. I just figure it would pass and

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Speaker 5: it wasn't a big deal.

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Speaker 4: So initially you just kind of dismissed it as a fluke. Yeah,

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Speaker 4: and then when did it next to get on your

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Speaker 4: radar as an issue?

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Speaker 1: So then the blood continued, not frequently enough for me

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Speaker 1: to be alarmed, which sounds crazy, but it still occurred

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Speaker 1: a few times in the weeks coming up. But then

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Speaker 1: I started feeling intense cramping and abdominal pains. But even

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Speaker 1: that I kind of just shuk it off. Still didn't

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Speaker 1: say anything to anyone. And part of that is honestly

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Speaker 1: like a cultural thing, like within Latin households, we don't

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Speaker 1: like going to the doctor typically unless it's absolutely necessary.

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Speaker 5: We were like, oh, it'll.

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Speaker 1: Go away, it'll be fine, and just growing up, even

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Speaker 1: like a tile and all, like, we wouldn't take that

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Speaker 1: unless it was absolutely necessary. Like we were just you know,

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Speaker 1: natural ways to get rid of fevers and whatnot.

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Speaker 5: So I just didn't mention it.

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Speaker 4: What is your day to day like at this point,

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Speaker 4: is it impacting you commuting your classes?

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Speaker 5: Yeah, one hundred percent.

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Speaker 1: I was not able to make it to class half

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Speaker 1: the time because at this point also what started to

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Speaker 1: manifest was restroom urgency. Frankly so even taking the train,

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Speaker 1: because you know, I lived in Brooklyn, my school was

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Speaker 1: in Manhattan. I was also working part time at the

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Speaker 1: time as well, so it's just I couldn't make it

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Speaker 1: to everything. On top of training, I became tired to

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Speaker 1: even go to the gym. To train and box anymore.

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Speaker 4: You know, I just want to focus on that because psychologically,

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Speaker 4: that transition into fear that you need to use the

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Speaker 4: restroom into an absolute necessity. It's what the normal person experiences,

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Speaker 4: but on volume ten. So it's like getting food poisoning

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Speaker 4: out of the blue, and particularly in New York City subways,

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Speaker 4: there are no restrooms.

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Speaker 5: Right.

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Speaker 1: It was definitely a challenge that prohibited me, to your point,

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Speaker 1: to go anywhere, Like you had to be aware of

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Speaker 1: how long is it going to take me, you know,

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Speaker 1: where would the restrooms be.

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Speaker 5: But beyond the restroom.

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Speaker 1: Issue, just the fatigue, the depleted energy, the pain, like

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Speaker 1: there's so many other things that went along with that

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Speaker 1: that caused me to not be able to do a

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Speaker 1: lot of things.

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Speaker 2: When he was in school, I wasn't around, So I

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Speaker 2: can only imagine how hard it was for him to

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Speaker 2: know that he may have to go and have to

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Speaker 2: get off the train or have to rush and it's

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Speaker 2: kind of also embarrassing. I'm sure for him.

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Speaker 4: It's not something that people can necessarily say, it's not

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Speaker 4: something that people can necessarily understand, and it's a difficult

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Speaker 4: thing to talk about.

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Speaker 1: Yeah, I mean, no one likes talking about restroom issues, right,

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Speaker 1: it's almost still taboo. So when someone is experiencing especially,

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Speaker 1: we don't know what it is. We don't know what's

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Speaker 1: happening or having these experiences. It was very difficult to

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Speaker 1: communicate due to lack of understanding, and to your point,

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Speaker 1: like it's difficult to share beyond the urgency. Even if

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Speaker 1: I do decide to go somewhere and I get stricken

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Speaker 1: with a crippling cramp or abdominal pain, then I would

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Speaker 1: have to like go crowl up in a corner somewhere.

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Speaker 4: Persisting for months on end, the symptoms became impossible to ignore,

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Speaker 4: starting to interfere with Jose's life, especially his boxing dreams.

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Speaker 4: Instead of focusing on his next training session, he was

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Speaker 4: now just trying to make it to class. It reached

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Speaker 4: a point where he could no longer hide it from

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Speaker 4: his mom.

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Speaker 1: And then it got to the point where then fatigue

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Speaker 1: started to kick in.

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Speaker 5: Fatigue isn't just being tired.

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Speaker 1: When I say fatigue, I mean like you literally don't

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Speaker 1: have the energy to get out of bed. It's almost

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Speaker 1: difficult to explain if you've never experienced it. Just imagine

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Speaker 1: if your body was completely drained of any energy or

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Speaker 1: will to move, like we can't move if we wanted to,

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Speaker 1: And I was just so exhausted that my mom took notice.

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Speaker 1: There was just one day that I just couldn't get up,

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Speaker 1: like I couldn't make it. It's a class that day,

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Speaker 1: and then my mom was just like, there's something wrong,

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Speaker 1: like what's going on with you?

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Speaker 5: So then then I finally broke and told her, and

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Speaker 5: she was.

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Speaker 1: Like, yeah, we need to get you checked because I've

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Speaker 1: never seen you like this before.

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Speaker 2: He called me over and he was bleeding severely, and

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Speaker 2: that's when we rushed to the hospital.

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Speaker 4: Tell me what went through your mind. How horrifying was that?

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Speaker 2: It was hard because I know that obviously anyone knows

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Speaker 2: that if you see blood, it's not a good thing

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Speaker 2: at all. I don't think it's going to go away,

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Speaker 2: so I kind of knew that it was really serious.

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Speaker 4: At the hospital, doctors drew Blood performed a colonoscopy, a

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Speaker 4: procedure where a fiber optic instrument is inserted to examine

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Speaker 4: the inside of the colon, and administered a barium swallow test,

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Speaker 4: where jose ingested a chalk liquid that made his upper

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Speaker 4: gastrointestinal tract visible on X rays. There were so many

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Speaker 4: other procedures that they all started to blur together. For

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Speaker 4: Jose And as a boxer, I'm sure that you were

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Speaker 4: pretty aware of your weight and your body composition. What's

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Speaker 4: happening to you physically?

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Speaker 1: I'm just getting weaker again, not being able to train

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Speaker 1: as regularly or at all. You know, it got to

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Speaker 1: a point where I was so fatigued the end that

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Speaker 1: I had to stop training altogether. So it was very

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Speaker 1: difficult for me to maintain weight on top of not

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Speaker 1: being able to exercise, which you know, just added to

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Speaker 1: the fatigue. It just became a cycle of one thing

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Speaker 1: compounding on the other, compounding on the other.

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Speaker 2: He was getting skinnier and skinnier and skinnier and skinnier,

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Speaker 2: and it was very difficult.

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Speaker 4: That must have been so frightening. What is the doctor

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Speaker 4: saying and what does the doctor think it is?

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Speaker 5: So they told me that was Crohn's disease, which you know, durable.

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Speaker 1: So getting hit with that at that age, it was

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Speaker 1: just instantly like, oh what now, Like what is my

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Speaker 1: life going to look like? What does this mean for me?

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Speaker 1: I'm still so young, Like, what is the rest of

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Speaker 1: my life going to look like?

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Speaker 4: Crohn's disease is a chronic condition that causes inflammation in

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Speaker 4: the digestive tract, leading to abdominal pain, severe diarrhea, fatigue,

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Speaker 4: weight loss, and malnutrition. If left unchecked, it can result

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Speaker 4: in debilitating and potentially life threatening complications.

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Speaker 2: I started reading about chrones, and I read that it

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Speaker 2: could be deadly, it could be just life long. I

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Speaker 2: had no idea that they would say, oh, your son

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Speaker 2: has a disease and he's going to have issues. It's

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Speaker 2: going to change his life.

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Speaker 4: Do you remember at that point what your biggest fears were.

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Speaker 5: It went back to, like, what is my life going

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Speaker 5: to look like now?

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Speaker 1: I was still going to school, but struggling because of

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Speaker 1: you know, all the symptoms and everything, and being in

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Speaker 1: and out the hospital and not the doctor's offices.

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Speaker 5: So yeah, it was really my future more than anything.

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Speaker 4: Jose had been in and out of the hospital five

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Speaker 4: times in just a few months. During that period, he

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Speaker 4: lost thirty pounds, drastically changing his appearance and overall well being.

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Speaker 4: Even though he now had a diagnosis, the lack of

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Speaker 4: a clear treatment plan left him feeling like he was

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Speaker 4: just treading water.

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Speaker 1: They told me to keep a food diary and was

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Speaker 1: just like, if you eat something that makes you not

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Speaker 1: feel well, don't need it again. And in my head

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Speaker 1: that just didn't make any sense.

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Speaker 4: Now, on top of fearing urgency, you have to fear

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Speaker 4: everything you're eating.

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Speaker 1: Pretty much, because yeah, there was no guidance, And in

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Speaker 1: my head, it was just like, all right, I'm write

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Speaker 1: down what I eat in a day, and if I

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Speaker 1: don't feel well, hey, how do I pinpoint what is

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Speaker 1: it that I ate that made me feel bad or

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Speaker 1: land me back in the hospital? And again like what

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Speaker 1: was the long term solution? I'd been prescribed to regimen

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Speaker 1: of medications as well at that time. It got slightly better,

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Speaker 1: but not not manageable.

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Speaker 4: So you have a diagnosis, it is not an optimistic one.

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Speaker 4: How do your conditions continue at that point? Is there

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Speaker 4: any kind of respite?

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Speaker 1: There was a slight break, so like the frequency reduced

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Speaker 1: a little bit, the urgency reduced a little bit, but

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Speaker 1: there was still the fatigue. There was still the issue

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Speaker 1: of what do I eat because I was still regularly

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Speaker 1: going back to the doctor or the hospital because of

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Speaker 1: severe symptoms.

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Speaker 2: So we had to do completely different no skins, you know, blend,

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Speaker 2: no seasonings, baked chicken, no fried foods at all, vegetables.

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Speaker 2: It just had to be like a very soft food diet,

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Speaker 2: nothing cruciferous, nothing that would hurt his stomach, so that

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Speaker 2: at least we wouldn't have any flares.

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Speaker 4: And that's a huge undertaking because suddenly you're having to

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Speaker 4: second guess and think about everything that's going into his mouth.

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Speaker 2: Yeah, it wasn't what I want to eat, it's what

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Speaker 2: I have to eat.

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Speaker 4: The diagnosis offered only a guise of normalcy, a brief

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Speaker 4: flashback to life before the symptoms began. But as the

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Speaker 4: flare ups returned and grew more frequent, Jose and Rselly

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Speaker 4: knew they needed to push for a second opinion.

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Speaker 2: As a mom with a child that has a diagnosis

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Speaker 2: as severe as that, I didn't want just one opinion.

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Speaker 2: I wanted a second opinion. I found a center that

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Speaker 2: was specifically for pediatric gesture enterology, and we made an

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Speaker 2: appointment and.

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Speaker 1: They re ran all the tests and did the blood

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Speaker 1: work all over again, and they actually came back with

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Speaker 1: a different diagnosis of all sort of colitis.

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Speaker 4: So what was that like for you? Somewhat relief?

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Speaker 1: It was because when I shared what I was being

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Speaker 1: told from my previous doctors. The current doctors that had

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Speaker 1: found that did give me the proper diagnosis and whatnot,

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Speaker 1: were also in disagreement with like the food diary thing,

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Speaker 1: and they were just like they should have done XYZ.

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Speaker 1: And so that gave me confidence in this medical team

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Speaker 1: that Okay, this is the team I can trust, and

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Speaker 1: let's see what happens here. And they did prescribe me

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Speaker 1: a regiment of medications that actually did work, at least

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Speaker 1: for a time.

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Speaker 4: Altered of colitis is a disease that causes severe inflammation

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Speaker 4: and ulcers in the large intestine. In most people. Symptoms

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Speaker 4: develop gradually, but they can be draining and even life

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Speaker 4: threatening if not properly treated. It's estimated that nearly seven

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Speaker 4: hundred and fifty thousand people in North America are affected

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Speaker 4: by disease. Both Crohn's disease and alsortive colitis fall under

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Speaker 4: the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, doctor

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Speaker 4: Brian Bosworth, explains the difference between the two.

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Speaker 3: Inflammatory bowel diseases are a spectrum of presentations of an

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Speaker 3: autoimmune attack by your white blood cells on your intestines

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Speaker 3: and when that goes awry, that can lead to more

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Speaker 3: white blood cells coming in, more destruction of tissue. And

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Speaker 3: in the case of all sort of colitis, it's really

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Speaker 3: the surface level of the colon, and so some symptoms

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Speaker 3: that patients would get would be bleeding, diarrhea, urgency that

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Speaker 3: they have to run to the bathroom right away if

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Speaker 3: they felt the urge to go because they were afraid

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Speaker 3: that they would have an accident or not be able

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Speaker 3: to control it. If that inflammation is not just at

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Speaker 3: the surface level on the inside of the bowl, but

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Speaker 3: actually is throughout the entire wall of the bowl, that's

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Speaker 3: more Crone's disease. It's what we call transmural through the wall,

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Speaker 3: and that can have the same types of symptoms and presentation,

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Speaker 3: but it could also have other complications.

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Speaker 4: So both would be diagnosed through a colonoscopy.

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Speaker 3: Cronesses and ulcer of colitis are clinical diagnoses, and it's

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Speaker 3: a combination of the endoscopic view through a colonoscopy, the

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Speaker 3: pathologic presentation, what it looks like when we take little

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Speaker 3: biopsies in the colon, the way that the cells are arranged,

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Speaker 3: or even the types of cells, the imaging. So radiology

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Speaker 3: studies MRIs or cat scans. In Jose's case, he also

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Speaker 3: had a pill camera where he swallowed a little pill

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Speaker 3: that took pictures all the way through his intestines.

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Speaker 4: That's so much for you to experience at such a

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Speaker 4: young age.

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Speaker 1: Yeah, I think my lowest point was when the doctor

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Speaker 1: told me what they thought it was at that time,

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Speaker 1: and then just instantly having that sinking feeling of my

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Speaker 1: life is never going to be the same. You mentioned

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Speaker 1: my mother earlier, like watching me box was nothing compared

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Speaker 1: to her watching me go through this and helping me

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Speaker 1: get through it and just seeing me continuously not get

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Speaker 1: better and get worse over time.

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Speaker 5: And yeah, it was difficult.

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Speaker 4: In terms of the mental challenges that go hand in

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Speaker 4: hand with IBD, particularly severe cases of all sort of colitis.

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Speaker 4: How as a gastroentrologists do you help patients navigate the

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Speaker 4: mental aspect because there's a great deal of shame and

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Speaker 4: secrecy and guilt and frustration and hopelessness wrapped in one.

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Speaker 5: You're so right.

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Speaker 3: When they've done studies looking at quality of life, patients

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Speaker 3: with crones and ulcrapplities have a lower quality of life

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Speaker 3: index than cancer patients do.

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Speaker 4: Wow, that's unbelievable.

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Speaker 3: And part of that is, just like you said, there's

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Speaker 3: a shame aspected to it. It's not anything that they

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Speaker 3: brought on on themselves, obviously, but what's the primary presenting

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Speaker 3: problem while it's running to the bathroom? And that can

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Speaker 3: be embarrassing in that perhaps there are certain foods that

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Speaker 3: you eat that tend to set you off, or if

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Speaker 3: there are other circumstances and you're going through a flare

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Speaker 3: to have to run to a bathroom and you feel

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Speaker 3: chained to your house right, you're afraid to leave. And

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Speaker 3: on the mental health side, we also find that it's

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Speaker 3: critically important to work with mental health professionals. So here

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Speaker 3: at the NYU Lengo and FUNA for a Bill Disease Center,

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Speaker 3: we employ a full time psychologist who sees all of

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Speaker 3: our patients who need to see her, and it's been

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Speaker 3: so impactful to have that partnership.

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Speaker 4: Jose starts to grasp the reality of living with a

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Speaker 4: chronic disease for the rest of his life. While an

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Speaker 4: accurate diagnosis offers a path forward from misdiagnosis. That hope

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Speaker 4: is quickly dashed when a life threatening flare up sends

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Speaker 4: him to ther.

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Speaker 2: He wasn't getting better, and I thought I was going

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Speaker 2: to lose him.

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Speaker 4: We'll be right back with Symptomatic, a Medical Mystery Podcast.

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Speaker 4: Now back to Symptomatic, a medical Mystery Podcast. Jose Torres,

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Speaker 4: not even twenty one, had been on a roller coaster

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Speaker 4: of hospital visits for months on end. He had to

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Speaker 4: abandon his boxing dreams and was now struggling to keep

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Speaker 4: up with his college courses, often unable to leave his

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Speaker 4: home due to the pain, fatigue, and constant bathroom urgency.

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Speaker 4: Although he was confident in the new diagnosis a whole

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Speaker 4: sort of colitis, long term relief felt out of reach.

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Speaker 4: So does life go back to normal for a period

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Speaker 4: of time at this point?

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Speaker 5: For a period of time, for about a year, they

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Speaker 5: did prescribe me a regiment of medications that actually did work,

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Speaker 5: but only for that short time.

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Speaker 1: Unfortunately, there was still anxiety around urgency. There was still

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Speaker 1: days where I would feel fatigued. It wasn't remission, it

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Speaker 1: was disease management. So it was about as normal as

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Speaker 1: it could have been. I was able to go to

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Speaker 1: school and do what I had to do for my classes.

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Speaker 1: I was able to, you know, spend some time with friends,

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Speaker 1: but there was still that anxiety part of it, the

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Speaker 1: possibility and kind of those thoughts in the back of

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Speaker 1: my head, and frankly, symptoms would arise when I would

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Speaker 1: least expect it. So manageable, but yeah, still not what

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Speaker 1: it was prior to the diagnosis.

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Speaker 4: Were you in denial initially when things came back full force,

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Speaker 4: that first huge flare after a year of having had

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Speaker 4: things settle down, Were you hoping it was just like

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Speaker 4: a temporary blip.

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Speaker 5: Yeah.

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Speaker 1: I could compare it to the mindset I had when

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Speaker 1: I first had symptoms. I was just like, I'm just

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Speaker 1: going to be feeling like this today, or I'm just

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Speaker 1: gonna be feeling like this this week. And then the

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Speaker 1: week turned into two weeks and it was like, nope,

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Speaker 1: it's here.

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Speaker 5: We go again.

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Speaker 4: And then what happened?

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Speaker 1: Then I flared, So all of the symptoms came back

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Speaker 1: full force, the fatigue, the blood, the pain. They had

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Speaker 1: tried in other kind of regiment of medications. They had

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Speaker 1: tried to increase hostages and nothing worked this time. So

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Speaker 1: it got to the point where I was I was

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Speaker 1: hospitalized for a good portion of time and actually had

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Speaker 1: to take a semester off of school because I was

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Speaker 1: missing so much of it.

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Speaker 4: That's so much Jose, Yeah, you must have just felt

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Speaker 4: so overwhelmed with having to just fight through every day.

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Speaker 1: Yeah, it was difficult because at the worst I was

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Speaker 1: just long term admitted to the hospital and my condition

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Speaker 1: was continuously dropping.

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Speaker 5: None of the treatment was working.

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Speaker 1: I dropped down to round one hundred pounds.

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Speaker 2: So we went into a lot of problems. He was

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Speaker 2: not keeping food down. They had to put a food

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Speaker 2: tube in him, which in itself was very, very scary

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Speaker 2: and difficult to make a decision, but there's no other choice.

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Speaker 2: So I pretty much lived in the hospital with him

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Speaker 2: for a whole month, and that was very hard.

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Speaker 1: It was quite a battle, and yeah, I was pretty

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Speaker 1: much experiencing everything he could possibly experience associated with colliitus.

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Speaker 4: At that point, after everything you had been through too,

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Speaker 4: and he had been through, that just must have been

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Speaker 4: like how much more can you two take?

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Speaker 2: It was very hard, but you can't give up, right,

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Speaker 2: You have to keep going. There has to be some

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Speaker 2: kind of bright light at the end of all of this.

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Speaker 4: It must have been like an may or that you

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Speaker 4: felt you couldn't wake up from.

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Speaker 2: It was you don't want anyone to have to go

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Speaker 2: through that with a child, and like I said, the

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Speaker 2: weight loss was scaring me and I felt like I

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Speaker 2: was losing him.

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Speaker 4: Were you afraid for sure?

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Speaker 1: Because I was again at one hundred pounds with that

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Speaker 1: with everything going on, like it came back to that

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Speaker 1: question of what now, like what could potentially happen here?

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Speaker 4: I say, how long were you in the hospital?

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Speaker 5: It was in and out a couple of months.

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Speaker 1: And then the doctors came to me and they were like,

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Speaker 1: to be Frank, there's two options here. There's this due

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Speaker 1: form of medication that's out that we can see if

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Speaker 1: that works after a couple of infusions or their surgery.

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Speaker 4: And by surgery, it means to take a huge chunk

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Speaker 4: of your intestines.

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Speaker 1: The entire large intestine, the entire large intestine out. So

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Speaker 1: again at nineteen, me and my mom were sitting there,

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Speaker 1: you know, having to make the decision, and you know,

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Speaker 1: we're like, let's shot the medication because we're not going

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Speaker 1: to opt into such a major surgery.

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Speaker 5: So we did, and that didn't work.

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Speaker 4: I'm sure your mother is trying to be your biggest

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Speaker 4: support system at that point, but were you ever worried

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Speaker 4: about her? Did you then kind of make that the

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Speaker 4: guilt of being sick when you see how it impacts

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Speaker 4: someone else is sometimes overwhelming.

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Speaker 5: Yeah, one hundred percent.

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Speaker 1: I mean, she took time off of work, could the

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Speaker 1: nights at a stay in the hospital.

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Speaker 5: She was there with me, even if she had a

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Speaker 5: sleep on a chair.

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Speaker 1: She was there throughout that entire time, and even to

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Speaker 1: this day sometimes I think about it because you know,

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Speaker 1: my mom was always a very strong woman, but after

444
00:24:47,480 --> 00:24:50,840
Speaker 1: this diagnosis, she became very anxious. So I always think

445
00:24:50,880 --> 00:24:52,679
Speaker 1: back to myself, like, I wonder was it because of

446
00:24:52,720 --> 00:24:54,359
Speaker 1: my diagnosi that she got that way?

447
00:24:54,600 --> 00:24:56,480
Speaker 5: So, yeah, it definitely took a toll.

448
00:24:57,320 --> 00:25:00,280
Speaker 4: What did her being there for you mean to.

449
00:25:00,760 --> 00:25:03,240
Speaker 1: It meant the world because growing up I was raised

450
00:25:03,240 --> 00:25:05,320
Speaker 1: by my grandparents because my mother had me very young,

451
00:25:05,880 --> 00:25:08,480
Speaker 1: so she was as present as she could be. But

452
00:25:08,600 --> 00:25:10,760
Speaker 1: it wasn't until I moved in with her when I

453
00:25:10,760 --> 00:25:14,640
Speaker 1: started high school that we really started to build a relationship.

454
00:25:15,119 --> 00:25:18,960
Speaker 1: But it was during this period where I couldn't thank

455
00:25:19,000 --> 00:25:22,200
Speaker 1: her and appreciate her enough for just her being there

456
00:25:22,280 --> 00:25:25,200
Speaker 1: at the time where I frankly needed somebody the most,

457
00:25:25,200 --> 00:25:27,680
Speaker 1: and she was there desperate.

458
00:25:27,320 --> 00:25:31,080
Speaker 4: To avoid major surgery and the risk of irreparable damage

459
00:25:31,080 --> 00:25:34,480
Speaker 4: to his intestines. Jose began a series of infusions to

460
00:25:34,520 --> 00:25:38,479
Speaker 4: reduce the kalita symptoms and hopefully improve his quality of life.

461
00:25:39,359 --> 00:25:41,919
Speaker 1: I believe it was either two or three rounds of

462
00:25:41,960 --> 00:25:45,560
Speaker 1: infusion over a period of a few weeks and nothing improved.

463
00:25:46,640 --> 00:25:48,600
Speaker 5: So now now we had to do the surgery.

464
00:25:49,920 --> 00:25:53,080
Speaker 4: Surgery is not even a choice, it's a necessity to

465
00:25:53,160 --> 00:25:58,080
Speaker 4: save your life. Yeah, all right, walk me through the surgery.

466
00:25:59,400 --> 00:25:59,640
Speaker 5: Yeah.

467
00:25:59,800 --> 00:26:03,880
Speaker 1: The first surgery was a total collectomy, so again, removal

468
00:26:03,880 --> 00:26:07,359
Speaker 1: of the entire large intestine. I'd been told going in,

469
00:26:07,400 --> 00:26:10,840
Speaker 1: you're gonna have an ostheme bag for a time, possibly forever,

470
00:26:10,960 --> 00:26:12,879
Speaker 1: but at least the idea was for it to be

471
00:26:12,920 --> 00:26:13,440
Speaker 1: for a time.

472
00:26:14,800 --> 00:26:17,240
Speaker 4: The collectomy was the first and what would be a

473
00:26:17,359 --> 00:26:22,119
Speaker 4: three part surgery sequence, creating an external bag to collect

474
00:26:22,119 --> 00:26:26,520
Speaker 4: bodily waste. Doctor Bosworth took over Jose's care after his

475
00:26:26,560 --> 00:26:30,280
Speaker 4: first surgery, and from the beginning they established a relationship

476
00:26:30,320 --> 00:26:33,399
Speaker 4: built on trust, the basis of what would become a

477
00:26:33,440 --> 00:26:34,680
Speaker 4: lifelong partnership.

478
00:26:38,000 --> 00:26:43,400
Speaker 3: Most patients when they have the jpouch surgery beforehand are

479
00:26:43,480 --> 00:26:47,320
Speaker 3: apprehensive and really fearful that they're going to be left

480
00:26:47,359 --> 00:26:51,080
Speaker 3: with a permanent bag and having completed his surgeries. That

481
00:26:51,200 --> 00:26:53,119
Speaker 3: was one of the things that he was concerned about.

482
00:26:53,160 --> 00:26:55,359
Speaker 3: Am I going to have to have another surgery and

483
00:26:55,400 --> 00:26:58,640
Speaker 3: then be left forever having a bag outside? And how

484
00:26:58,720 --> 00:27:00,879
Speaker 3: is that going to impact his life?

485
00:27:03,920 --> 00:27:07,680
Speaker 1: I remember just feeling relief because doctor Bosworth, even at

486
00:27:07,760 --> 00:27:10,959
Speaker 1: that time, was extremely well regarded in the space.

487
00:27:11,560 --> 00:27:14,399
Speaker 4: Do you remember meeting jose and his mother for the

488
00:27:14,440 --> 00:27:15,000
Speaker 4: first time?

489
00:27:15,640 --> 00:27:16,000
Speaker 5: Very well.

490
00:27:16,040 --> 00:27:19,080
Speaker 3: He now he comes to appointments without his mother from president,

491
00:27:19,119 --> 00:27:22,280
Speaker 3: but the very beginning she was right there by his

492
00:27:22,400 --> 00:27:26,320
Speaker 3: side every step of the way. And when we first met,

493
00:27:26,359 --> 00:27:29,640
Speaker 3: we talked through what his course beforehands had been, and

494
00:27:30,040 --> 00:27:32,719
Speaker 3: what the decision to actually undergo surgery was and what

495
00:27:32,760 --> 00:27:36,440
Speaker 3: that meant for somebody who was eighteen nineteen twenty years old,

496
00:27:36,920 --> 00:27:39,480
Speaker 3: and how I was going to help both of them

497
00:27:39,520 --> 00:27:43,000
Speaker 3: together go forward and what that meant for them as

498
00:27:43,040 --> 00:27:46,120
Speaker 3: they continued on with him having the EJ Pouch.

499
00:27:46,520 --> 00:27:50,320
Speaker 1: The confidence in which that he spoke, and even his

500
00:27:50,640 --> 00:27:54,680
Speaker 1: rapport and bedsign manner like, he was just very comforting.

501
00:27:54,720 --> 00:27:57,840
Speaker 1: It was almost like talking to a friend, if you will.

502
00:27:57,880 --> 00:27:59,800
Speaker 1: Didn't feel like I was talking to a doctor. He

503
00:27:59,880 --> 00:28:02,360
Speaker 1: was is very approachable.

504
00:28:03,200 --> 00:28:06,280
Speaker 3: One of the things that I think is really important

505
00:28:06,320 --> 00:28:10,560
Speaker 3: in working with patients and their families. And a goal

506
00:28:11,160 --> 00:28:14,040
Speaker 3: is that patients with chronic diseases are going to have

507
00:28:14,119 --> 00:28:17,600
Speaker 3: chronic diseases, but it shouldn't be who they are, and

508
00:28:17,640 --> 00:28:20,800
Speaker 3: it shouldn't control their lives. And being able to help

509
00:28:20,880 --> 00:28:26,520
Speaker 3: to restore some degree of control, some individuality, and some

510
00:28:26,680 --> 00:28:29,520
Speaker 3: ability to function. Knowing that you have this but it's

511
00:28:29,600 --> 00:28:33,600
Speaker 3: not dictating what you're doing is a challenge. And working

512
00:28:33,640 --> 00:28:37,600
Speaker 3: with both Jose and his mom together both to get

513
00:28:37,640 --> 00:28:40,880
Speaker 3: past some of the anxieties of the therapies that he'd

514
00:28:40,880 --> 00:28:43,680
Speaker 3: had in the past, what the future might hold, treat

515
00:28:43,720 --> 00:28:47,000
Speaker 3: any flares that might occur, but also give them hope.

516
00:28:47,120 --> 00:28:49,760
Speaker 3: And I think that hope is such an important concept

517
00:28:50,200 --> 00:28:52,480
Speaker 3: when you're talking about a chronic disease.

518
00:28:56,040 --> 00:28:59,640
Speaker 4: The first surgery to remove Jose's large intestine was a success,

519
00:29:00,120 --> 00:29:03,240
Speaker 4: but the doctor still needed to perform a few additional

520
00:29:03,280 --> 00:29:06,320
Speaker 4: procedures to ensure he was set up for long term

521
00:29:06,360 --> 00:29:07,640
Speaker 4: recovery and comfort.

522
00:29:09,640 --> 00:29:13,200
Speaker 1: I had pretty much every post surgical complication you could

523
00:29:13,240 --> 00:29:16,760
Speaker 1: possibly have just because of the health state I was in.

524
00:29:17,120 --> 00:29:19,920
Speaker 1: They started to slowly introduce foods and I was regularly

525
00:29:19,960 --> 00:29:22,480
Speaker 1: having blockages with the ostomy, so they actually had to

526
00:29:22,520 --> 00:29:26,360
Speaker 1: do another minor surgery not too long after the major

527
00:29:26,400 --> 00:29:30,280
Speaker 1: one to increase the size of the ostomy to allow

528
00:29:30,320 --> 00:29:32,240
Speaker 1: things to kind of like pass through better.

529
00:29:32,800 --> 00:29:36,920
Speaker 3: Fairly shortly after surgery, he came in and was having

530
00:29:37,000 --> 00:29:41,720
Speaker 3: some bleeding. And when you're patient with lcrocalitis who was

531
00:29:41,800 --> 00:29:46,080
Speaker 3: diagnosed because you were bleeding, it evokes so much And

532
00:29:46,120 --> 00:29:47,840
Speaker 3: I'm going to say it, even though it wasn't formulated,

533
00:29:47,880 --> 00:29:50,320
Speaker 3: I know it's post traumatic stress disorder, right, You really

534
00:29:50,320 --> 00:29:52,960
Speaker 3: have that PTSD reaction when you see something that reminds

535
00:29:52,960 --> 00:29:55,240
Speaker 3: you of a place when you were so sick and

536
00:29:55,320 --> 00:29:58,360
Speaker 3: there was nothing that was happening. There's a lot of

537
00:29:59,160 --> 00:30:03,560
Speaker 3: both anxiety that occurs and real fear of what's to come.

538
00:30:03,720 --> 00:30:06,320
Speaker 3: Because if you've now already had surgery, what's the next step?

539
00:30:06,320 --> 00:30:08,080
Speaker 3: How could I have more surgery? But Colon's gone, but

540
00:30:08,160 --> 00:30:11,360
Speaker 3: yet I'm still bleeding. And so we did a pouch

541
00:30:11,440 --> 00:30:13,320
Speaker 3: asibly we looked in infect his pouch did not have

542
00:30:13,360 --> 00:30:14,080
Speaker 3: any inflammation.

543
00:30:15,000 --> 00:30:17,760
Speaker 4: The next step for Jose was surgery to remove the

544
00:30:17,840 --> 00:30:21,480
Speaker 4: rectum and create a J pouch, preparing him for a

545
00:30:21,520 --> 00:30:24,880
Speaker 4: third procedure that would eliminate the need for an external

546
00:30:24,920 --> 00:30:27,040
Speaker 4: bag for his digestive system to function.

547
00:30:27,840 --> 00:30:29,600
Speaker 5: That third surgery was success.

548
00:30:29,920 --> 00:30:33,040
Speaker 1: They were able to reverse the ostomy and the jpouch

549
00:30:33,240 --> 00:30:36,680
Speaker 1: surgery and that three part sequence had been completed. But

550
00:30:36,760 --> 00:30:39,000
Speaker 1: it was just such a relief to know that the

551
00:30:39,000 --> 00:30:41,560
Speaker 1: ostemy had been reversed and now there could be a

552
00:30:41,560 --> 00:30:44,840
Speaker 1: potential way forward for me to move on with my life. Frankly,

553
00:30:45,480 --> 00:30:49,160
Speaker 1: it just made me appreciate everything so much more, even food,

554
00:30:49,640 --> 00:30:52,520
Speaker 1: because you know, going through this recovery period of eating

555
00:30:52,680 --> 00:30:56,520
Speaker 1: plan things or liquid diets and whatnot. Literally, just the

556
00:30:56,560 --> 00:31:00,280
Speaker 1: little things I learned to appreciate in value more. Yeah,

557
00:31:00,320 --> 00:31:02,520
Speaker 1: it's just completely shifted my perspective.

558
00:31:03,000 --> 00:31:06,160
Speaker 4: Well, that is such a lovely way to look at things,

559
00:31:06,240 --> 00:31:10,400
Speaker 4: after everything you've been through, pulling the positives from it.

560
00:31:12,400 --> 00:31:17,560
Speaker 4: After enduring numerous complications and finally undergoing the successful three

561
00:31:17,640 --> 00:31:21,800
Speaker 4: part surgery, Jose's treatment has now shifted to symptom maintenance.

562
00:31:22,360 --> 00:31:26,120
Speaker 4: This consists of regular checkups to monitor his inflammation and

563
00:31:26,280 --> 00:31:30,960
Speaker 4: ensure everything remains under control. Having navigated the terrifying road

564
00:31:31,000 --> 00:31:33,880
Speaker 4: to relief, he is now determined to be an example

565
00:31:33,920 --> 00:31:37,320
Speaker 4: to others living with IBD. He currently works at the

566
00:31:37,360 --> 00:31:41,080
Speaker 4: Crones and Kalidis Foundation, having started there as an intern

567
00:31:41,240 --> 00:31:42,240
Speaker 4: and worked his way up.

568
00:31:43,880 --> 00:31:47,120
Speaker 1: There's a camp program for children that have closes, these

569
00:31:47,160 --> 00:31:50,600
Speaker 1: and ultative colitis that the foundation runs. So I did

570
00:31:50,640 --> 00:31:55,840
Speaker 1: that and that changed my life again, just going to

571
00:31:56,040 --> 00:31:59,920
Speaker 1: a camp and seeing these kids who were the youngest

572
00:32:00,120 --> 00:32:04,920
Speaker 1: were around six seven, oldest being you know, seventeen, and

573
00:32:05,000 --> 00:32:08,000
Speaker 1: these kids dealing with what I just went through, and

574
00:32:08,000 --> 00:32:10,240
Speaker 1: it's just like, geez, some of these kids have ostomies

575
00:32:10,280 --> 00:32:12,239
Speaker 1: that are not going to be reversed. Some of these

576
00:32:12,320 --> 00:32:14,400
Speaker 1: kids are on medications that they're never going to get

577
00:32:14,400 --> 00:32:17,800
Speaker 1: off of, and just to see them enjoy that week

578
00:32:17,840 --> 00:32:19,680
Speaker 1: of camp as if they were normal kids.

579
00:32:20,080 --> 00:32:21,640
Speaker 5: But it's just kids being kids at the end of

580
00:32:21,680 --> 00:32:22,040
Speaker 5: the day.

581
00:32:22,640 --> 00:32:26,160
Speaker 1: And the kids are always so grateful to the counselors there,

582
00:32:26,200 --> 00:32:28,640
Speaker 1: but you know, amongst us, counselors were always like, the

583
00:32:28,720 --> 00:32:31,280
Speaker 1: kids don't know the effect they have on us. Again,

584
00:32:31,320 --> 00:32:32,880
Speaker 1: you just see life in a different way, like if

585
00:32:32,920 --> 00:32:35,000
Speaker 1: these kids are doing it, and then why can't I.

586
00:32:35,000 --> 00:32:36,840
Speaker 1: I'm sure they look at us and reverse like, oh

587
00:32:36,880 --> 00:32:39,120
Speaker 1: they're older, they're living with what I have, they're successful,

588
00:32:39,160 --> 00:32:40,800
Speaker 1: then I can do it too. So it was just

589
00:32:40,800 --> 00:32:43,680
Speaker 1: such a powerful experience. I volunteered as a counselor for

590
00:32:43,760 --> 00:32:45,680
Speaker 1: ten years.

591
00:32:47,720 --> 00:32:52,760
Speaker 4: You must be so proud of how he's blossomed in

592
00:32:52,800 --> 00:32:53,640
Speaker 4: spite of all of this.

593
00:32:54,680 --> 00:32:57,680
Speaker 2: Yeah, he's so strong. I don't even think I would

594
00:32:57,720 --> 00:32:59,840
Speaker 2: be able to do what he did. I don't think

595
00:32:59,880 --> 00:33:04,560
Speaker 2: I would have the strength and the positiveness that he has.

596
00:33:04,760 --> 00:33:07,640
Speaker 2: He wanted to share with the kids, he wanted to

597
00:33:07,640 --> 00:33:10,760
Speaker 2: see them. He went for years just trying to see

598
00:33:10,760 --> 00:33:13,880
Speaker 2: how they progressed and trying to share his story and

599
00:33:13,920 --> 00:33:17,040
Speaker 2: tell them that they're going to be okay. And he's

600
00:33:17,080 --> 00:33:18,200
Speaker 2: a really strong person.

601
00:33:18,960 --> 00:33:24,440
Speaker 4: So if your health struggles depleted you after getting diagnosed,

602
00:33:24,680 --> 00:33:28,160
Speaker 4: involving yourself in that community was what replenished you.

603
00:33:29,280 --> 00:33:31,160
Speaker 5: Percent. It gave me a community.

604
00:33:31,720 --> 00:33:33,640
Speaker 1: It gave me friends that I still have to this

605
00:33:33,760 --> 00:33:37,720
Speaker 1: day that again could just really understand everything because they're

606
00:33:37,720 --> 00:33:40,440
Speaker 1: going through it themselves or have been through it themselves.

607
00:33:40,920 --> 00:33:43,240
Speaker 1: I've been with the Content Clientist Foundation as a full

608
00:33:43,240 --> 00:33:45,640
Speaker 1: time employee for the better part of the last eight

609
00:33:45,720 --> 00:33:48,840
Speaker 1: years now, which I'm again just extremely extremely grateful for

610
00:33:49,200 --> 00:33:51,520
Speaker 1: so so many pieces Like I look back on it

611
00:33:51,560 --> 00:33:53,400
Speaker 1: and it was one of the worst things that have

612
00:33:53,440 --> 00:33:55,480
Speaker 1: ever happened to me ended up being such a blessing

613
00:33:56,320 --> 00:33:59,040
Speaker 1: because it's created the career that I have that allows

614
00:33:59,160 --> 00:34:02,360
Speaker 1: me to myself and live the life that I want

615
00:34:02,400 --> 00:34:04,320
Speaker 1: to live, and help my family however I can help

616
00:34:04,360 --> 00:34:07,160
Speaker 1: them and be there, So I honestly don't know what

617
00:34:07,200 --> 00:34:09,480
Speaker 1: my life would look like today if it wasn't for

618
00:34:09,560 --> 00:34:13,520
Speaker 1: all of those experiences occurring the way they happened.

619
00:34:14,320 --> 00:34:18,359
Speaker 3: His ability to give hope, his ability to counsel and

620
00:34:18,520 --> 00:34:22,040
Speaker 3: celebrate the wins for other patients, be able to look

621
00:34:22,080 --> 00:34:22,960
Speaker 3: back and reflect and.

622
00:34:22,920 --> 00:34:23,920
Speaker 5: One what he's doing.

623
00:34:24,440 --> 00:34:27,279
Speaker 3: It's just incredible, and I'm so proud of the work

624
00:34:27,280 --> 00:34:30,120
Speaker 3: that he's doing, and he knows he's making an impact,

625
00:34:30,120 --> 00:34:32,040
Speaker 3: and I know he's making a real impact both in

626
00:34:32,120 --> 00:34:34,839
Speaker 3: other patients and for himself too.

627
00:34:35,760 --> 00:34:39,719
Speaker 4: In what ways do you think watching him box did

628
00:34:39,760 --> 00:34:40,120
Speaker 4: help you?

629
00:34:40,920 --> 00:34:45,240
Speaker 2: That's a tough question. I guess the boxing, I'm worried

630
00:34:45,280 --> 00:34:48,080
Speaker 2: that he's going to get hurt. You're right, but you

631
00:34:48,120 --> 00:34:51,879
Speaker 2: can stop it. But with the disease, you can't stop it.

632
00:34:52,000 --> 00:34:54,360
Speaker 2: You can't run away from it. You just have to

633
00:34:54,560 --> 00:34:58,040
Speaker 2: cope with it and be strong and just go on

634
00:34:58,239 --> 00:34:58,600
Speaker 2: with it.

635
00:35:00,120 --> 00:35:03,280
Speaker 4: What do you want people listening to take from your story?

636
00:35:03,680 --> 00:35:06,560
Speaker 5: Always have faith and hope.

637
00:35:07,040 --> 00:35:09,400
Speaker 1: This is going to sound super cliche, but an attitude

638
00:35:09,440 --> 00:35:12,000
Speaker 1: of gratitude goes a really long way to just really

639
00:35:12,000 --> 00:35:14,759
Speaker 1: be grateful for what you have and even if you're

640
00:35:14,800 --> 00:35:18,160
Speaker 1: in a bad situation, do the best you can to

641
00:35:18,360 --> 00:35:21,960
Speaker 1: learn and look for help and resources and support, like

642
00:35:22,120 --> 00:35:24,759
Speaker 1: never be too proud to do that, and just do

643
00:35:24,840 --> 00:35:27,279
Speaker 1: what you can and just never give up. Hope there

644
00:35:27,320 --> 00:35:29,480
Speaker 1: could be a way where you could change your situation.

645
00:35:32,160 --> 00:35:35,040
Speaker 4: You can find out more about both Crones and Colidis

646
00:35:35,040 --> 00:35:39,680
Speaker 4: at the Crones and Colidis Foundation website at Cronescalidisfoundation dot org,

647
00:35:40,040 --> 00:35:43,280
Speaker 4: where you might also come across some of Jose's work.

648
00:35:48,120 --> 00:35:49,320
Speaker 5: My name is Jose Taurres.

649
00:35:49,560 --> 00:35:52,920
Speaker 1: It took me about a year to get my proper

650
00:35:52,960 --> 00:35:57,600
Speaker 1: diagnosis of all short of colitis and three surgeries later

651
00:35:57,800 --> 00:36:01,359
Speaker 1: in over a decade. Now I'm fortunate enough to have

652
00:36:01,440 --> 00:36:04,120
Speaker 1: no symptoms and be living a normal life.

653
00:36:05,680 --> 00:36:08,840
Speaker 4: On next week's episode of Symptomatic, Kelly du Bois is

654
00:36:08,880 --> 00:36:14,120
Speaker 4: suddenly confronted with severe heartburn, rapid weight gain, and appealing scalp,

655
00:36:14,560 --> 00:36:17,960
Speaker 4: leading her on a confusing path that even led to

656
00:36:18,040 --> 00:36:18,840
Speaker 4: brain surgery.

657
00:36:19,760 --> 00:36:22,640
Speaker 6: I looked up and I saw my neurosurgeon, and he's

658
00:36:22,680 --> 00:36:25,080
Speaker 6: asking me the questions like you see on TV when

659
00:36:25,120 --> 00:36:28,439
Speaker 6: you know something really bad happen. Do you know your name?

660
00:36:29,160 --> 00:36:31,719
Speaker 6: Do you know what year it is? And do you

661
00:36:31,760 --> 00:36:36,000
Speaker 6: know who's the president? And I've struggled to speak.

662
00:36:36,680 --> 00:36:39,840
Speaker 4: But when brain surgery leaves her with irreparable damage and

663
00:36:39,880 --> 00:36:43,600
Speaker 4: without much relief, she becomes desperate for answers to what

664
00:36:43,840 --> 00:36:50,560
Speaker 4: really is going on. As always, we would love to

665
00:36:50,600 --> 00:36:53,320
Speaker 4: hear from you. Send us your thoughts on this episode

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Speaker 4: or share a medical mystery of your own at Symptomatic

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Speaker 4: at iHeartMedia dot com. Please rate and review Symptomatic wherever

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Speaker 4: you get your podcasts. We'll see you next time. Until then,

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Speaker 4: be well. Symptomatic is a production of Ruby Studio from iHeartMedia.

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Speaker 4: Our show is hosted by me Lauren Bret Pacheco. Executive

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Speaker 4: producers are Matt Romano and myself. Our EP of Post

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Speaker 4: Production is James Foster. Our supervising producer is Cierra Kaiser.

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Speaker 4: Our writers are John Irwin and Diana Davis, and our

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Speaker 4: editor is Sierra Spreen