Speaker 1: Really, my condition was continuously dropping. None of the treatment
Speaker 1: was working. It got to the point where I was
Speaker 1: actually that to give me nutrition through a tube.
Speaker 2: It was hard because obviously anyone knows that if you
Speaker 2: see blood, it's not a good thing at all, and
Speaker 2: it's not something that's I don't think it's going to
Speaker 2: go away.
Speaker 3: The fear continues to fester. It just becomes a potential
Speaker 3: really dark spiral for some patients.
Speaker 1: I think my lowest point was having that sinking feeling
Speaker 1: of my life is never going to be the same.
Speaker 4: How terrifying would it be to fight an unknown enemy,
Speaker 4: one you didn't recognize and didn't see coming. What if
Speaker 4: that enemy was coming from within a disease that even
Speaker 4: doctors couldn't identify. Nearly half of all Americans suffer from
Speaker 4: some chronic illness, and many struggle for an accurate diagnosis.
Speaker 4: These are their stories. I'm Lauren Brite Pacheco, and this
Speaker 4: is symptomatic. Jose Torres has always felt most at home
Speaker 4: when he can express himself, whether it's through music, poetry,
Speaker 4: or visual arts.
Speaker 1: Ever since I was kid, I used to always draw
Speaker 1: like cartoons, and as I grew up, continued sketching actually
Speaker 1: went to middle school for art specifically.
Speaker 4: Though Jose was raised by his grandparents throughout his childhood,
Speaker 4: his mother, Araceli, was always a huge part of a
Speaker 4: support system. What kind of qualities does he have make
Speaker 4: him so special?
Speaker 2: He's intelligent, he's sensitive, he's hard working, he doesn't settle.
Speaker 2: He's a very strong person. A lot of people grow
Speaker 2: fond of him really quickly. He's very social, unlike me,
Speaker 2: I'm the opposite of him. But he likes to be
Speaker 2: around people and he likes to help people as well.
Speaker 4: So tell me philosophy, poetry, reading, music, fan artist. How
Speaker 4: did you get into boxing?
Speaker 1: I had a bit of a rough upbringing, so that
Speaker 1: was a way my mother identified was just like, let's
Speaker 1: put that energy to something productive. Boxing was also a
Speaker 1: huge sport just in the home, Like my grandfather growing
Speaker 1: up would always watch like the big fights and whatnot.
Speaker 5: So I was like, yeah, sure, why not? So we
Speaker 5: found a gym.
Speaker 1: I went, had a quick like intro session, loved it,
Speaker 1: and that was it. If I wasn't in school, I
Speaker 1: was likely in the gym.
Speaker 4: And by the time you were a freshman and you
Speaker 4: were really into boxing.
Speaker 1: Yes, at that point, the idea was my trainer wanted
Speaker 1: to start preparing me to compete in potentially the Golden
Speaker 1: Gloves tournament to see how I.
Speaker 4: Placed there, And at that point, no pun intended, but
Speaker 4: you ended up getting knocked out in terms of health.
Speaker 4: You know, I was saying, your mom must be tough,
Speaker 4: but I should think to a certain extent, seeing you
Speaker 4: box prepared her for what you were about to battle
Speaker 4: in terms of your health.
Speaker 1: My mom's a tough woman, but nothing prepared us for
Speaker 1: that for the bout that came about with my health,
Speaker 1: because yeah, it came out of nowhere.
Speaker 5: It was just a regular day. I probably just.
Speaker 1: Gotten back from college courses and I went to use
Speaker 1: the restroom and there was blood.
Speaker 5: So that was the first thing. I was like, Oh,
Speaker 5: that's different.
Speaker 1: But I didn't tell anyone because I just figured, oh,
Speaker 1: it's stomach bug, maybe it's something I ate.
Speaker 5: It'll go away. I just figure it would pass and
Speaker 5: it wasn't a big deal.
Speaker 4: So initially you just kind of dismissed it as a fluke. Yeah,
Speaker 4: and then when did it next to get on your
Speaker 4: radar as an issue?
Speaker 1: So then the blood continued, not frequently enough for me
Speaker 1: to be alarmed, which sounds crazy, but it still occurred
Speaker 1: a few times in the weeks coming up. But then
Speaker 1: I started feeling intense cramping and abdominal pains. But even
Speaker 1: that I kind of just shuk it off. Still didn't
Speaker 1: say anything to anyone. And part of that is honestly
Speaker 1: like a cultural thing, like within Latin households, we don't
Speaker 1: like going to the doctor typically unless it's absolutely necessary.
Speaker 5: We were like, oh, it'll.
Speaker 1: Go away, it'll be fine, and just growing up, even
Speaker 1: like a tile and all, like, we wouldn't take that
Speaker 1: unless it was absolutely necessary. Like we were just you know,
Speaker 1: natural ways to get rid of fevers and whatnot.
Speaker 5: So I just didn't mention it.
Speaker 4: What is your day to day like at this point,
Speaker 4: is it impacting you commuting your classes?
Speaker 5: Yeah, one hundred percent.
Speaker 1: I was not able to make it to class half
Speaker 1: the time because at this point also what started to
Speaker 1: manifest was restroom urgency. Frankly so even taking the train,
Speaker 1: because you know, I lived in Brooklyn, my school was
Speaker 1: in Manhattan. I was also working part time at the
Speaker 1: time as well, so it's just I couldn't make it
Speaker 1: to everything. On top of training, I became tired to
Speaker 1: even go to the gym. To train and box anymore.
Speaker 4: You know, I just want to focus on that because psychologically,
Speaker 4: that transition into fear that you need to use the
Speaker 4: restroom into an absolute necessity. It's what the normal person experiences,
Speaker 4: but on volume ten. So it's like getting food poisoning
Speaker 4: out of the blue, and particularly in New York City subways,
Speaker 4: there are no restrooms.
Speaker 5: Right.
Speaker 1: It was definitely a challenge that prohibited me, to your point,
Speaker 1: to go anywhere, Like you had to be aware of
Speaker 1: how long is it going to take me, you know,
Speaker 1: where would the restrooms be.
Speaker 5: But beyond the restroom.
Speaker 1: Issue, just the fatigue, the depleted energy, the pain, like
Speaker 1: there's so many other things that went along with that
Speaker 1: that caused me to not be able to do a
Speaker 1: lot of things.
Speaker 2: When he was in school, I wasn't around, So I
Speaker 2: can only imagine how hard it was for him to
Speaker 2: know that he may have to go and have to
Speaker 2: get off the train or have to rush and it's
Speaker 2: kind of also embarrassing. I'm sure for him.
Speaker 4: It's not something that people can necessarily say, it's not
Speaker 4: something that people can necessarily understand, and it's a difficult
Speaker 4: thing to talk about.
Speaker 1: Yeah, I mean, no one likes talking about restroom issues, right,
Speaker 1: it's almost still taboo. So when someone is experiencing especially,
Speaker 1: we don't know what it is. We don't know what's
Speaker 1: happening or having these experiences. It was very difficult to
Speaker 1: communicate due to lack of understanding, and to your point,
Speaker 1: like it's difficult to share beyond the urgency. Even if
Speaker 1: I do decide to go somewhere and I get stricken
Speaker 1: with a crippling cramp or abdominal pain, then I would
Speaker 1: have to like go crowl up in a corner somewhere.
Speaker 4: Persisting for months on end, the symptoms became impossible to ignore,
Speaker 4: starting to interfere with Jose's life, especially his boxing dreams.
Speaker 4: Instead of focusing on his next training session, he was
Speaker 4: now just trying to make it to class. It reached
Speaker 4: a point where he could no longer hide it from
Speaker 4: his mom.
Speaker 1: And then it got to the point where then fatigue
Speaker 1: started to kick in.
Speaker 5: Fatigue isn't just being tired.
Speaker 1: When I say fatigue, I mean like you literally don't
Speaker 1: have the energy to get out of bed. It's almost
Speaker 1: difficult to explain if you've never experienced it. Just imagine
Speaker 1: if your body was completely drained of any energy or
Speaker 1: will to move, like we can't move if we wanted to,
Speaker 1: And I was just so exhausted that my mom took notice.
Speaker 1: There was just one day that I just couldn't get up,
Speaker 1: like I couldn't make it. It's a class that day,
Speaker 1: and then my mom was just like, there's something wrong,
Speaker 1: like what's going on with you?
Speaker 5: So then then I finally broke and told her, and
Speaker 5: she was.
Speaker 1: Like, yeah, we need to get you checked because I've
Speaker 1: never seen you like this before.
Speaker 2: He called me over and he was bleeding severely, and
Speaker 2: that's when we rushed to the hospital.
Speaker 4: Tell me what went through your mind. How horrifying was that?
Speaker 2: It was hard because I know that obviously anyone knows
Speaker 2: that if you see blood, it's not a good thing
Speaker 2: at all. I don't think it's going to go away,
Speaker 2: so I kind of knew that it was really serious.
Speaker 4: At the hospital, doctors drew Blood performed a colonoscopy, a
Speaker 4: procedure where a fiber optic instrument is inserted to examine
Speaker 4: the inside of the colon, and administered a barium swallow test,
Speaker 4: where jose ingested a chalk liquid that made his upper
Speaker 4: gastrointestinal tract visible on X rays. There were so many
Speaker 4: other procedures that they all started to blur together. For
Speaker 4: Jose And as a boxer, I'm sure that you were
Speaker 4: pretty aware of your weight and your body composition. What's
Speaker 4: happening to you physically?
Speaker 1: I'm just getting weaker again, not being able to train
Speaker 1: as regularly or at all. You know, it got to
Speaker 1: a point where I was so fatigued the end that
Speaker 1: I had to stop training altogether. So it was very
Speaker 1: difficult for me to maintain weight on top of not
Speaker 1: being able to exercise, which you know, just added to
Speaker 1: the fatigue. It just became a cycle of one thing
Speaker 1: compounding on the other, compounding on the other.
Speaker 2: He was getting skinnier and skinnier and skinnier and skinnier,
Speaker 2: and it was very difficult.
Speaker 4: That must have been so frightening. What is the doctor
Speaker 4: saying and what does the doctor think it is?
Speaker 5: So they told me that was Crohn's disease, which you know, durable.
Speaker 1: So getting hit with that at that age, it was
Speaker 1: just instantly like, oh what now, Like what is my
Speaker 1: life going to look like? What does this mean for me?
Speaker 1: I'm still so young, Like, what is the rest of
Speaker 1: my life going to look like?
Speaker 4: Crohn's disease is a chronic condition that causes inflammation in
Speaker 4: the digestive tract, leading to abdominal pain, severe diarrhea, fatigue,
Speaker 4: weight loss, and malnutrition. If left unchecked, it can result
Speaker 4: in debilitating and potentially life threatening complications.
Speaker 2: I started reading about chrones, and I read that it
Speaker 2: could be deadly, it could be just life long. I
Speaker 2: had no idea that they would say, oh, your son
Speaker 2: has a disease and he's going to have issues. It's
Speaker 2: going to change his life.
Speaker 4: Do you remember at that point what your biggest fears were.
Speaker 5: It went back to, like, what is my life going
Speaker 5: to look like now?
Speaker 1: I was still going to school, but struggling because of
Speaker 1: you know, all the symptoms and everything, and being in
Speaker 1: and out the hospital and not the doctor's offices.
Speaker 5: So yeah, it was really my future more than anything.
Speaker 4: Jose had been in and out of the hospital five
Speaker 4: times in just a few months. During that period, he
Speaker 4: lost thirty pounds, drastically changing his appearance and overall well being.
Speaker 4: Even though he now had a diagnosis, the lack of
Speaker 4: a clear treatment plan left him feeling like he was
Speaker 4: just treading water.
Speaker 1: They told me to keep a food diary and was
Speaker 1: just like, if you eat something that makes you not
Speaker 1: feel well, don't need it again. And in my head
Speaker 1: that just didn't make any sense.
Speaker 4: Now, on top of fearing urgency, you have to fear
Speaker 4: everything you're eating.
Speaker 1: Pretty much, because yeah, there was no guidance, And in
Speaker 1: my head, it was just like, all right, I'm write
Speaker 1: down what I eat in a day, and if I
Speaker 1: don't feel well, hey, how do I pinpoint what is
Speaker 1: it that I ate that made me feel bad or
Speaker 1: land me back in the hospital? And again like what
Speaker 1: was the long term solution? I'd been prescribed to regimen
Speaker 1: of medications as well at that time. It got slightly better,
Speaker 1: but not not manageable.
Speaker 4: So you have a diagnosis, it is not an optimistic one.
Speaker 4: How do your conditions continue at that point? Is there
Speaker 4: any kind of respite?
Speaker 1: There was a slight break, so like the frequency reduced
Speaker 1: a little bit, the urgency reduced a little bit, but
Speaker 1: there was still the fatigue. There was still the issue
Speaker 1: of what do I eat because I was still regularly
Speaker 1: going back to the doctor or the hospital because of
Speaker 1: severe symptoms.
Speaker 2: So we had to do completely different no skins, you know, blend,
Speaker 2: no seasonings, baked chicken, no fried foods at all, vegetables.
Speaker 2: It just had to be like a very soft food diet,
Speaker 2: nothing cruciferous, nothing that would hurt his stomach, so that
Speaker 2: at least we wouldn't have any flares.
Speaker 4: And that's a huge undertaking because suddenly you're having to
Speaker 4: second guess and think about everything that's going into his mouth.
Speaker 2: Yeah, it wasn't what I want to eat, it's what
Speaker 2: I have to eat.
Speaker 4: The diagnosis offered only a guise of normalcy, a brief
Speaker 4: flashback to life before the symptoms began. But as the
Speaker 4: flare ups returned and grew more frequent, Jose and Rselly
Speaker 4: knew they needed to push for a second opinion.
Speaker 2: As a mom with a child that has a diagnosis
Speaker 2: as severe as that, I didn't want just one opinion.
Speaker 2: I wanted a second opinion. I found a center that
Speaker 2: was specifically for pediatric gesture enterology, and we made an
Speaker 2: appointment and.
Speaker 1: They re ran all the tests and did the blood
Speaker 1: work all over again, and they actually came back with
Speaker 1: a different diagnosis of all sort of colitis.
Speaker 4: So what was that like for you? Somewhat relief?
Speaker 1: It was because when I shared what I was being
Speaker 1: told from my previous doctors. The current doctors that had
Speaker 1: found that did give me the proper diagnosis and whatnot,
Speaker 1: were also in disagreement with like the food diary thing,
Speaker 1: and they were just like they should have done XYZ.
Speaker 1: And so that gave me confidence in this medical team
Speaker 1: that Okay, this is the team I can trust, and
Speaker 1: let's see what happens here. And they did prescribe me
Speaker 1: a regiment of medications that actually did work, at least
Speaker 1: for a time.
Speaker 4: Altered of colitis is a disease that causes severe inflammation
Speaker 4: and ulcers in the large intestine. In most people. Symptoms
Speaker 4: develop gradually, but they can be draining and even life
Speaker 4: threatening if not properly treated. It's estimated that nearly seven
Speaker 4: hundred and fifty thousand people in North America are affected
Speaker 4: by disease. Both Crohn's disease and alsortive colitis fall under
Speaker 4: the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, doctor
Speaker 4: Brian Bosworth, explains the difference between the two.
Speaker 3: Inflammatory bowel diseases are a spectrum of presentations of an
Speaker 3: autoimmune attack by your white blood cells on your intestines
Speaker 3: and when that goes awry, that can lead to more
Speaker 3: white blood cells coming in, more destruction of tissue. And
Speaker 3: in the case of all sort of colitis, it's really
Speaker 3: the surface level of the colon, and so some symptoms
Speaker 3: that patients would get would be bleeding, diarrhea, urgency that
Speaker 3: they have to run to the bathroom right away if
Speaker 3: they felt the urge to go because they were afraid
Speaker 3: that they would have an accident or not be able
Speaker 3: to control it. If that inflammation is not just at
Speaker 3: the surface level on the inside of the bowl, but
Speaker 3: actually is throughout the entire wall of the bowl, that's
Speaker 3: more Crone's disease. It's what we call transmural through the wall,
Speaker 3: and that can have the same types of symptoms and presentation,
Speaker 3: but it could also have other complications.
Speaker 4: So both would be diagnosed through a colonoscopy.
Speaker 3: Cronesses and ulcer of colitis are clinical diagnoses, and it's
Speaker 3: a combination of the endoscopic view through a colonoscopy, the
Speaker 3: pathologic presentation, what it looks like when we take little
Speaker 3: biopsies in the colon, the way that the cells are arranged,
Speaker 3: or even the types of cells, the imaging. So radiology
Speaker 3: studies MRIs or cat scans. In Jose's case, he also
Speaker 3: had a pill camera where he swallowed a little pill
Speaker 3: that took pictures all the way through his intestines.
Speaker 4: That's so much for you to experience at such a
Speaker 4: young age.
Speaker 1: Yeah, I think my lowest point was when the doctor
Speaker 1: told me what they thought it was at that time,
Speaker 1: and then just instantly having that sinking feeling of my
Speaker 1: life is never going to be the same. You mentioned
Speaker 1: my mother earlier, like watching me box was nothing compared
Speaker 1: to her watching me go through this and helping me
Speaker 1: get through it and just seeing me continuously not get
Speaker 1: better and get worse over time.
Speaker 5: And yeah, it was difficult.
Speaker 4: In terms of the mental challenges that go hand in
Speaker 4: hand with IBD, particularly severe cases of all sort of colitis.
Speaker 4: How as a gastroentrologists do you help patients navigate the
Speaker 4: mental aspect because there's a great deal of shame and
Speaker 4: secrecy and guilt and frustration and hopelessness wrapped in one.
Speaker 5: You're so right.
Speaker 3: When they've done studies looking at quality of life, patients
Speaker 3: with crones and ulcrapplities have a lower quality of life
Speaker 3: index than cancer patients do.
Speaker 4: Wow, that's unbelievable.
Speaker 3: And part of that is, just like you said, there's
Speaker 3: a shame aspected to it. It's not anything that they
Speaker 3: brought on on themselves, obviously, but what's the primary presenting
Speaker 3: problem while it's running to the bathroom? And that can
Speaker 3: be embarrassing in that perhaps there are certain foods that
Speaker 3: you eat that tend to set you off, or if
Speaker 3: there are other circumstances and you're going through a flare
Speaker 3: to have to run to a bathroom and you feel
Speaker 3: chained to your house right, you're afraid to leave. And
Speaker 3: on the mental health side, we also find that it's
Speaker 3: critically important to work with mental health professionals. So here
Speaker 3: at the NYU Lengo and FUNA for a Bill Disease Center,
Speaker 3: we employ a full time psychologist who sees all of
Speaker 3: our patients who need to see her, and it's been
Speaker 3: so impactful to have that partnership.
Speaker 4: Jose starts to grasp the reality of living with a
Speaker 4: chronic disease for the rest of his life. While an
Speaker 4: accurate diagnosis offers a path forward from misdiagnosis. That hope
Speaker 4: is quickly dashed when a life threatening flare up sends
Speaker 4: him to ther.
Speaker 2: He wasn't getting better, and I thought I was going
Speaker 2: to lose him.
Speaker 4: We'll be right back with Symptomatic, a Medical Mystery Podcast.
Speaker 4: Now back to Symptomatic, a medical Mystery Podcast. Jose Torres,
Speaker 4: not even twenty one, had been on a roller coaster
Speaker 4: of hospital visits for months on end. He had to
Speaker 4: abandon his boxing dreams and was now struggling to keep
Speaker 4: up with his college courses, often unable to leave his
Speaker 4: home due to the pain, fatigue, and constant bathroom urgency.
Speaker 4: Although he was confident in the new diagnosis a whole
Speaker 4: sort of colitis, long term relief felt out of reach.
Speaker 4: So does life go back to normal for a period
Speaker 4: of time at this point?
Speaker 5: For a period of time, for about a year, they
Speaker 5: did prescribe me a regiment of medications that actually did work,
Speaker 5: but only for that short time.
Speaker 1: Unfortunately, there was still anxiety around urgency. There was still
Speaker 1: days where I would feel fatigued. It wasn't remission, it
Speaker 1: was disease management. So it was about as normal as
Speaker 1: it could have been. I was able to go to
Speaker 1: school and do what I had to do for my classes.
Speaker 1: I was able to, you know, spend some time with friends,
Speaker 1: but there was still that anxiety part of it, the
Speaker 1: possibility and kind of those thoughts in the back of
Speaker 1: my head, and frankly, symptoms would arise when I would
Speaker 1: least expect it. So manageable, but yeah, still not what
Speaker 1: it was prior to the diagnosis.
Speaker 4: Were you in denial initially when things came back full force,
Speaker 4: that first huge flare after a year of having had
Speaker 4: things settle down, Were you hoping it was just like
Speaker 4: a temporary blip.
Speaker 5: Yeah.
Speaker 1: I could compare it to the mindset I had when
Speaker 1: I first had symptoms. I was just like, I'm just
Speaker 1: going to be feeling like this today, or I'm just
Speaker 1: gonna be feeling like this this week. And then the
Speaker 1: week turned into two weeks and it was like, nope,
Speaker 1: it's here.
Speaker 5: We go again.
Speaker 4: And then what happened?
Speaker 1: Then I flared, So all of the symptoms came back
Speaker 1: full force, the fatigue, the blood, the pain. They had
Speaker 1: tried in other kind of regiment of medications. They had
Speaker 1: tried to increase hostages and nothing worked this time. So
Speaker 1: it got to the point where I was I was
Speaker 1: hospitalized for a good portion of time and actually had
Speaker 1: to take a semester off of school because I was
Speaker 1: missing so much of it.
Speaker 4: That's so much Jose, Yeah, you must have just felt
Speaker 4: so overwhelmed with having to just fight through every day.
Speaker 1: Yeah, it was difficult because at the worst I was
Speaker 1: just long term admitted to the hospital and my condition
Speaker 1: was continuously dropping.
Speaker 5: None of the treatment was working.
Speaker 1: I dropped down to round one hundred pounds.
Speaker 2: So we went into a lot of problems. He was
Speaker 2: not keeping food down. They had to put a food
Speaker 2: tube in him, which in itself was very, very scary
Speaker 2: and difficult to make a decision, but there's no other choice.
Speaker 2: So I pretty much lived in the hospital with him
Speaker 2: for a whole month, and that was very hard.
Speaker 1: It was quite a battle, and yeah, I was pretty
Speaker 1: much experiencing everything he could possibly experience associated with colliitus.
Speaker 4: At that point, after everything you had been through too,
Speaker 4: and he had been through, that just must have been
Speaker 4: like how much more can you two take?
Speaker 2: It was very hard, but you can't give up, right,
Speaker 2: You have to keep going. There has to be some
Speaker 2: kind of bright light at the end of all of this.
Speaker 4: It must have been like an may or that you
Speaker 4: felt you couldn't wake up from.
Speaker 2: It was you don't want anyone to have to go
Speaker 2: through that with a child, and like I said, the
Speaker 2: weight loss was scaring me and I felt like I
Speaker 2: was losing him.
Speaker 4: Were you afraid for sure?
Speaker 1: Because I was again at one hundred pounds with that
Speaker 1: with everything going on, like it came back to that
Speaker 1: question of what now, like what could potentially happen here?
Speaker 4: I say, how long were you in the hospital?
Speaker 5: It was in and out a couple of months.
Speaker 1: And then the doctors came to me and they were like,
Speaker 1: to be Frank, there's two options here. There's this due
Speaker 1: form of medication that's out that we can see if
Speaker 1: that works after a couple of infusions or their surgery.
Speaker 4: And by surgery, it means to take a huge chunk
Speaker 4: of your intestines.
Speaker 1: The entire large intestine, the entire large intestine out. So
Speaker 1: again at nineteen, me and my mom were sitting there,
Speaker 1: you know, having to make the decision, and you know,
Speaker 1: we're like, let's shot the medication because we're not going
Speaker 1: to opt into such a major surgery.
Speaker 5: So we did, and that didn't work.
Speaker 4: I'm sure your mother is trying to be your biggest
Speaker 4: support system at that point, but were you ever worried
Speaker 4: about her? Did you then kind of make that the
Speaker 4: guilt of being sick when you see how it impacts
Speaker 4: someone else is sometimes overwhelming.
Speaker 5: Yeah, one hundred percent.
Speaker 1: I mean, she took time off of work, could the
Speaker 1: nights at a stay in the hospital.
Speaker 5: She was there with me, even if she had a
Speaker 5: sleep on a chair.
Speaker 1: She was there throughout that entire time, and even to
Speaker 1: this day sometimes I think about it because you know,
Speaker 1: my mom was always a very strong woman, but after
Speaker 1: this diagnosis, she became very anxious. So I always think
Speaker 1: back to myself, like, I wonder was it because of
Speaker 1: my diagnosi that she got that way?
Speaker 5: So, yeah, it definitely took a toll.
Speaker 4: What did her being there for you mean to.
Speaker 1: It meant the world because growing up I was raised
Speaker 1: by my grandparents because my mother had me very young,
Speaker 1: so she was as present as she could be. But
Speaker 1: it wasn't until I moved in with her when I
Speaker 1: started high school that we really started to build a relationship.
Speaker 1: But it was during this period where I couldn't thank
Speaker 1: her and appreciate her enough for just her being there
Speaker 1: at the time where I frankly needed somebody the most,
Speaker 1: and she was there desperate.
Speaker 4: To avoid major surgery and the risk of irreparable damage
Speaker 4: to his intestines. Jose began a series of infusions to
Speaker 4: reduce the kalita symptoms and hopefully improve his quality of life.
Speaker 1: I believe it was either two or three rounds of
Speaker 1: infusion over a period of a few weeks and nothing improved.
Speaker 5: So now now we had to do the surgery.
Speaker 4: Surgery is not even a choice, it's a necessity to
Speaker 4: save your life. Yeah, all right, walk me through the surgery.
Speaker 5: Yeah.
Speaker 1: The first surgery was a total collectomy, so again, removal
Speaker 1: of the entire large intestine. I'd been told going in,
Speaker 1: you're gonna have an ostheme bag for a time, possibly forever,
Speaker 1: but at least the idea was for it to be
Speaker 1: for a time.
Speaker 4: The collectomy was the first and what would be a
Speaker 4: three part surgery sequence, creating an external bag to collect
Speaker 4: bodily waste. Doctor Bosworth took over Jose's care after his
Speaker 4: first surgery, and from the beginning they established a relationship
Speaker 4: built on trust, the basis of what would become a
Speaker 4: lifelong partnership.
Speaker 3: Most patients when they have the jpouch surgery beforehand are
Speaker 3: apprehensive and really fearful that they're going to be left
Speaker 3: with a permanent bag and having completed his surgeries. That
Speaker 3: was one of the things that he was concerned about.
Speaker 3: Am I going to have to have another surgery and
Speaker 3: then be left forever having a bag outside? And how
Speaker 3: is that going to impact his life?
Speaker 1: I remember just feeling relief because doctor Bosworth, even at
Speaker 1: that time, was extremely well regarded in the space.
Speaker 4: Do you remember meeting jose and his mother for the
Speaker 4: first time?
Speaker 5: Very well.
Speaker 3: He now he comes to appointments without his mother from president,
Speaker 3: but the very beginning she was right there by his
Speaker 3: side every step of the way. And when we first met,
Speaker 3: we talked through what his course beforehands had been, and
Speaker 3: what the decision to actually undergo surgery was and what
Speaker 3: that meant for somebody who was eighteen nineteen twenty years old,
Speaker 3: and how I was going to help both of them
Speaker 3: together go forward and what that meant for them as
Speaker 3: they continued on with him having the EJ Pouch.
Speaker 1: The confidence in which that he spoke, and even his
Speaker 1: rapport and bedsign manner like, he was just very comforting.
Speaker 1: It was almost like talking to a friend, if you will.
Speaker 1: Didn't feel like I was talking to a doctor. He
Speaker 1: was is very approachable.
Speaker 3: One of the things that I think is really important
Speaker 3: in working with patients and their families. And a goal
Speaker 3: is that patients with chronic diseases are going to have
Speaker 3: chronic diseases, but it shouldn't be who they are, and
Speaker 3: it shouldn't control their lives. And being able to help
Speaker 3: to restore some degree of control, some individuality, and some
Speaker 3: ability to function. Knowing that you have this but it's
Speaker 3: not dictating what you're doing is a challenge. And working
Speaker 3: with both Jose and his mom together both to get
Speaker 3: past some of the anxieties of the therapies that he'd
Speaker 3: had in the past, what the future might hold, treat
Speaker 3: any flares that might occur, but also give them hope.
Speaker 3: And I think that hope is such an important concept
Speaker 3: when you're talking about a chronic disease.
Speaker 4: The first surgery to remove Jose's large intestine was a success,
Speaker 4: but the doctor still needed to perform a few additional
Speaker 4: procedures to ensure he was set up for long term
Speaker 4: recovery and comfort.
Speaker 1: I had pretty much every post surgical complication you could
Speaker 1: possibly have just because of the health state I was in.
Speaker 1: They started to slowly introduce foods and I was regularly
Speaker 1: having blockages with the ostomy, so they actually had to
Speaker 1: do another minor surgery not too long after the major
Speaker 1: one to increase the size of the ostomy to allow
Speaker 1: things to kind of like pass through better.
Speaker 3: Fairly shortly after surgery, he came in and was having
Speaker 3: some bleeding. And when you're patient with lcrocalitis who was
Speaker 3: diagnosed because you were bleeding, it evokes so much And
Speaker 3: I'm going to say it, even though it wasn't formulated,
Speaker 3: I know it's post traumatic stress disorder, right, You really
Speaker 3: have that PTSD reaction when you see something that reminds
Speaker 3: you of a place when you were so sick and
Speaker 3: there was nothing that was happening. There's a lot of
Speaker 3: both anxiety that occurs and real fear of what's to come.
Speaker 3: Because if you've now already had surgery, what's the next step?
Speaker 3: How could I have more surgery? But Colon's gone, but
Speaker 3: yet I'm still bleeding. And so we did a pouch
Speaker 3: asibly we looked in infect his pouch did not have
Speaker 3: any inflammation.
Speaker 4: The next step for Jose was surgery to remove the
Speaker 4: rectum and create a J pouch, preparing him for a
Speaker 4: third procedure that would eliminate the need for an external
Speaker 4: bag for his digestive system to function.
Speaker 5: That third surgery was success.
Speaker 1: They were able to reverse the ostomy and the jpouch
Speaker 1: surgery and that three part sequence had been completed. But
Speaker 1: it was just such a relief to know that the
Speaker 1: ostemy had been reversed and now there could be a
Speaker 1: potential way forward for me to move on with my life. Frankly,
Speaker 1: it just made me appreciate everything so much more, even food,
Speaker 1: because you know, going through this recovery period of eating
Speaker 1: plan things or liquid diets and whatnot. Literally, just the
Speaker 1: little things I learned to appreciate in value more. Yeah,
Speaker 1: it's just completely shifted my perspective.
Speaker 4: Well, that is such a lovely way to look at things,
Speaker 4: after everything you've been through, pulling the positives from it.
Speaker 4: After enduring numerous complications and finally undergoing the successful three
Speaker 4: part surgery, Jose's treatment has now shifted to symptom maintenance.
Speaker 4: This consists of regular checkups to monitor his inflammation and
Speaker 4: ensure everything remains under control. Having navigated the terrifying road
Speaker 4: to relief, he is now determined to be an example
Speaker 4: to others living with IBD. He currently works at the
Speaker 4: Crones and Kalidis Foundation, having started there as an intern
Speaker 4: and worked his way up.
Speaker 1: There's a camp program for children that have closes, these
Speaker 1: and ultative colitis that the foundation runs. So I did
Speaker 1: that and that changed my life again, just going to
Speaker 1: a camp and seeing these kids who were the youngest
Speaker 1: were around six seven, oldest being you know, seventeen, and
Speaker 1: these kids dealing with what I just went through, and
Speaker 1: it's just like, geez, some of these kids have ostomies
Speaker 1: that are not going to be reversed. Some of these
Speaker 1: kids are on medications that they're never going to get
Speaker 1: off of, and just to see them enjoy that week
Speaker 1: of camp as if they were normal kids.
Speaker 5: But it's just kids being kids at the end of
Speaker 5: the day.
Speaker 1: And the kids are always so grateful to the counselors there,
Speaker 1: but you know, amongst us, counselors were always like, the
Speaker 1: kids don't know the effect they have on us. Again,
Speaker 1: you just see life in a different way, like if
Speaker 1: these kids are doing it, and then why can't I.
Speaker 1: I'm sure they look at us and reverse like, oh
Speaker 1: they're older, they're living with what I have, they're successful,
Speaker 1: then I can do it too. So it was just
Speaker 1: such a powerful experience. I volunteered as a counselor for
Speaker 1: ten years.
Speaker 4: You must be so proud of how he's blossomed in
Speaker 4: spite of all of this.
Speaker 2: Yeah, he's so strong. I don't even think I would
Speaker 2: be able to do what he did. I don't think
Speaker 2: I would have the strength and the positiveness that he has.
Speaker 2: He wanted to share with the kids, he wanted to
Speaker 2: see them. He went for years just trying to see
Speaker 2: how they progressed and trying to share his story and
Speaker 2: tell them that they're going to be okay. And he's
Speaker 2: a really strong person.
Speaker 4: So if your health struggles depleted you after getting diagnosed,
Speaker 4: involving yourself in that community was what replenished you.
Speaker 5: Percent. It gave me a community.
Speaker 1: It gave me friends that I still have to this
Speaker 1: day that again could just really understand everything because they're
Speaker 1: going through it themselves or have been through it themselves.
Speaker 1: I've been with the Content Clientist Foundation as a full
Speaker 1: time employee for the better part of the last eight
Speaker 1: years now, which I'm again just extremely extremely grateful for
Speaker 1: so so many pieces Like I look back on it
Speaker 1: and it was one of the worst things that have
Speaker 1: ever happened to me ended up being such a blessing
Speaker 1: because it's created the career that I have that allows
Speaker 1: me to myself and live the life that I want
Speaker 1: to live, and help my family however I can help
Speaker 1: them and be there, So I honestly don't know what
Speaker 1: my life would look like today if it wasn't for
Speaker 1: all of those experiences occurring the way they happened.
Speaker 3: His ability to give hope, his ability to counsel and
Speaker 3: celebrate the wins for other patients, be able to look
Speaker 3: back and reflect and.
Speaker 5: One what he's doing.
Speaker 3: It's just incredible, and I'm so proud of the work
Speaker 3: that he's doing, and he knows he's making an impact,
Speaker 3: and I know he's making a real impact both in
Speaker 3: other patients and for himself too.
Speaker 4: In what ways do you think watching him box did
Speaker 4: help you?
Speaker 2: That's a tough question. I guess the boxing, I'm worried
Speaker 2: that he's going to get hurt. You're right, but you
Speaker 2: can stop it. But with the disease, you can't stop it.
Speaker 2: You can't run away from it. You just have to
Speaker 2: cope with it and be strong and just go on
Speaker 2: with it.
Speaker 4: What do you want people listening to take from your story?
Speaker 5: Always have faith and hope.
Speaker 1: This is going to sound super cliche, but an attitude
Speaker 1: of gratitude goes a really long way to just really
Speaker 1: be grateful for what you have and even if you're
Speaker 1: in a bad situation, do the best you can to
Speaker 1: learn and look for help and resources and support, like
Speaker 1: never be too proud to do that, and just do
Speaker 1: what you can and just never give up. Hope there
Speaker 1: could be a way where you could change your situation.
Speaker 4: You can find out more about both Crones and Colidis
Speaker 4: at the Crones and Colidis Foundation website at Cronescalidisfoundation dot org,
Speaker 4: where you might also come across some of Jose's work.
Speaker 5: My name is Jose Taurres.
Speaker 1: It took me about a year to get my proper
Speaker 1: diagnosis of all short of colitis and three surgeries later
Speaker 1: in over a decade. Now I'm fortunate enough to have
Speaker 1: no symptoms and be living a normal life.
Speaker 4: On next week's episode of Symptomatic, Kelly du Bois is
Speaker 4: suddenly confronted with severe heartburn, rapid weight gain, and appealing scalp,
Speaker 4: leading her on a confusing path that even led to
Speaker 4: brain surgery.
Speaker 6: I looked up and I saw my neurosurgeon, and he's
Speaker 6: asking me the questions like you see on TV when
Speaker 6: you know something really bad happen. Do you know your name?
Speaker 6: Do you know what year it is? And do you
Speaker 6: know who's the president? And I've struggled to speak.
Speaker 4: But when brain surgery leaves her with irreparable damage and
Speaker 4: without much relief, she becomes desperate for answers to what
Speaker 4: really is going on. As always, we would love to
Speaker 4: hear from you. Send us your thoughts on this episode
Speaker 4: or share a medical mystery of your own at Symptomatic
Speaker 4: at iHeartMedia dot com. Please rate and review Symptomatic wherever
Speaker 4: you get your podcasts. We'll see you next time. Until then,
Speaker 4: be well. Symptomatic is a production of Ruby Studio from iHeartMedia.
Speaker 4: Our show is hosted by me Lauren Bret Pacheco. Executive
Speaker 4: producers are Matt Romano and myself. Our EP of Post
Speaker 4: Production is James Foster. Our supervising producer is Cierra Kaiser.
Speaker 4: Our writers are John Irwin and Diana Davis, and our
Speaker 4: editor is Sierra Spreen