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 even doctors
Speaker 4: couldn't identify. Nearly half of all Americans suffer from some
Speaker 4: chronic illness, and many struggle for an accurate diagnosis. These
Speaker 4: are their stories. I'm Lauren Brite Pacheco, and this is symptomatic.
Speaker 4: Jose Torres has always felt most at home when he
Speaker 4: can express himself, whether it's through music, poetry, 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.
Speaker 5: Actually 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 college
Speaker 4: you 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: Globes tournament to see how I placed there.
Speaker 4: And at that point, no pun intended, but you ended
Speaker 4: up getting knocked out in terms of health. You know,
Speaker 4: I was saying, your mom must be tough, but I
Speaker 4: should think to a certain extent, seeing you box prepared
Speaker 4: her for what you were about to battle in terms
Speaker 4: 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. It was just
Speaker 1: a regular day. I probably just gotten back from college
Speaker 1: courses and I went to use the restroom and there
Speaker 1: was blood. So that was the first thing. I was like, Oh,
Speaker 1: that's different. 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, it would pass, and it wasn't a
Speaker 5: big deal.
Speaker 4: So initially you just kind of dismissed it as a fluke. Yeah,
Speaker 4: and then when did it next get on your radar
Speaker 4: 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 shook 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 tail 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're 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 with,
Speaker 1: you know, a crippling cramp or abdominal pain, then I
Speaker 1: would 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.
Speaker 5: To, and I was just so exhausted. 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 Crohne's disease, which you
Speaker 5: know karable.
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 5: Pretty much, because yeah, there was no guidance.
Speaker 1: And in my head, it was just like, all right,
Speaker 1: I'm write down what I eat in a day and
Speaker 1: if I don't feel well, ay, how do I pinpoint
Speaker 1: what is it that I ate that made me feel
Speaker 1: bad or land me back in the hospital?
Speaker 5: And again like what was the long term solution? I'd
Speaker 5: been prescribed to regimen of medications as well at that time.
Speaker 1: It got slightly better, 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 I
Speaker 1: had 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: developed gradually that 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 this disease. Both Crohn's disease and alsortive colitis fall
Speaker 4: under the umbrella of inflammatory bowel disease. Jose's current gastrentrologist,
Speaker 4: doctor 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 can called transmural through
Speaker 3: the wall, and that can have the same types of
Speaker 3: symptoms and presentation, 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: And my mother earlier, like watching me box was nothing
Speaker 1: compared to her watching me go through this and helping
Speaker 1: me get through it and just seeing me continuously not
Speaker 1: get 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 crohnes 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 Funat 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 6: I'm Cindy Lauber with fellow Concentics advocate chef Michelle Bernstein.
Speaker 6: We'll share our experiences with plaque sariasis with storiatic arthritis,
Speaker 6: and doctor Panico will talk about the possible connection.
Speaker 7: Cocentic sech you can you MAB is prescribed for adults
Speaker 7: with moderate to severe placksorias as three hundred milligram dose
Speaker 7: and adults with active soriatic arthritis one hundred and fifty
Speaker 7: milligram dose. Don't use if you're allergic to cocentics before starting,
Speaker 7: get checked for TB, serious allergic reactions, severe skin reactions
Speaker 7: that look like ecima, and an increased risk of infections.
Speaker 7: Some fatal have occurred. It may lower your ability to
Speaker 7: fight infections, so tell your doctor if you have an
Speaker 7: infection or symptoms like fevers, sweats, chills, muscleggs, or cough,
Speaker 7: How do to vaccine or plan to or if IBD symptoms?
Speaker 7: Developer Warson learn more at one eight four four Cocentics
Speaker 7: orcocentics dot com.
Speaker 3: Slash chef Michelle.
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: sortive colitis, long term relief felt out of reach. So
Speaker 4: does life go back to normal for a period of
Speaker 4: time at this point, for a.
Speaker 1: Period of time, for about a year, and it did
Speaker 1: prescribe me a regiment of medications that actually did work,
Speaker 1: but only for that short time. Unfortunately, there was still
Speaker 1: anxiety around urgency. There was still days where I would
Speaker 1: feel fatigued. It wasn't remission, it was disease.
Speaker 5: Man.
Speaker 1: So it was about as normal as it could have been.
Speaker 1: I was able to go to school and do what
Speaker 1: I had to do for my classes. I was able to,
Speaker 1: you know, spend some time with friends, but there was
Speaker 1: still that that anxiety part of it, the possibility and
Speaker 1: kind of those thoughts in the back of my head
Speaker 1: and Frankly, symptoms would arise when I would least expect it,
Speaker 1: so manageable, but yeah, still not what it was prior
Speaker 1: to the diagnosis.
Speaker 4: Were you in denial initially when things came back full
Speaker 4: force that first huge flare after a year of having
Speaker 4: had things settle down, were you hoping it was just
Speaker 4: like a temporary blip.
Speaker 2: Yeah?
Speaker 1: I could have compared it to the mindset I had
Speaker 1: when I first had symptoms. I was just like, I'm
Speaker 1: just gonna 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, no,
Speaker 1: it's here 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.
Speaker 8: Where I was I was hospitalized for a good portion
Speaker 8: of time and actually had to take a semester off
Speaker 8: of school because I was 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. None of the treatment was working. I
Speaker 1: had 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 you could possibly experience associated with with colitis.
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 a nightmare that you felt
Speaker 4: 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 1: Or you freight for sure, because I was again at
Speaker 1: one hundred pounds with that, with everything going on, like
Speaker 1: it came back to that question of what now, like
Speaker 1: 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 5: The entire large intestine, the entire large intestine out.
Speaker 1: So 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 we're are you ever
Speaker 4: worried about her? Did you then kind of make that
Speaker 4: the guilt of being sick when you see how it
Speaker 4: impacts 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. She was there
Speaker 1: with me, even if she had a 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 diagnosis 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 you?
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.
Speaker 4: Desperate to avoid major surgery and the risk of irreparable
Speaker 4: damage to his intestines, Jose began a series of infusions
Speaker 4: to reduce the kalitis symptoms and hopefully improve his quality
Speaker 4: 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: So the first surgery was a total collectomy, so again
Speaker 1: removal of the entire large intestine. I'd been told going in,
Speaker 1: you're going to have an ostemebag for a time, possibly forever,
Speaker 1: but at least the idea was for it to be
Speaker 1: for a time to collect.
Speaker 4: To me, 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 3: Very well, Now he comes to appointments without his mother
Speaker 3: from president, but the very beginning she was right there
Speaker 3: by his side every step of the way. And when
Speaker 3: we first met, we talked through what his course beforehand
Speaker 3: had been, and what the decision to actually undergo surgery
Speaker 3: was and what that meant for somebody who was eighteen,
Speaker 3: nineteen twenty years old, and how I was going to
Speaker 3: help both of them together go forward and what that
Speaker 3: meant for them as they continued on with him having
Speaker 3: 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 he will,
Speaker 1: didn't feel like I was talking to a doctor.
Speaker 5: He was just 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 disease, 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 to get past
Speaker 3: some of the anxieties of the therapies that he'd had in
Speaker 3: the past, what the future might hold, treat any flares
Speaker 3: that might occur, but also give them hope. And I
Speaker 3: think that hope is such an important concept when you're
Speaker 3: 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 to 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 ostom 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 ulcerocalitis who was
Speaker 3: diagnosed because you were bleeding, it evokes so much.
Speaker 5: And I'm going to.
Speaker 3: Say it, even though it wasn't formally, I know it's
Speaker 3: post traumatic stress disorder, right. You really have that PTSD
Speaker 3: reaction when you see something that reminds you of a
Speaker 3: place when you were so sick and there was nothing
Speaker 3: that was happening. There's a lot of both anxiety that
Speaker 3: occurs and real fear of what's to come.
Speaker 5: Because if you've now.
Speaker 3: Already had surgery, what's the next step. How could I
Speaker 3: have more surgery? My colon's gone, but yet I'm still bleeding.
Speaker 3: And so we did a pouchsibly we looked in fact,
Speaker 3: his pouch did not have 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.
Speaker 5: Yeah, it just completely shifted my perspective.
Speaker 4: Wow, 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 Colitis 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 ultrative 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 six seven, oldest being you know, seventeen, and these
Speaker 1: kids dealing with what I just went through, and it's
Speaker 1: just like geez, some of these kids have ostomies that
Speaker 1: are not going to be reversed.
Speaker 5: Some of these kids are on medications that they're never going.
Speaker 1: To get off of, and just to see them enjoy
Speaker 1: that week of camp as if they were normal kids.
Speaker 1: But it's just kids being kids at the end of
Speaker 1: the day, and the kids are always so grateful to
Speaker 1: the counselors there, but you know, amongst us, counselors were
Speaker 1: always like the kids don't know the effect they have
Speaker 1: on us. Again, you just see life in a different way,
Speaker 1: like if these kids are doing it, then why can't
Speaker 1: I am? Sure they look at us in reverse like,
Speaker 1: oh 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 and that community was what replenished.
Speaker 5: You one hundred 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 going.
Speaker 5: Through it themselves or have been through it themselves.
Speaker 1: I've been with the cons and Clients Foundation as a
Speaker 1: full time employee for the better part of the last
Speaker 1: eight years now, which I'm again just extremely extremely grateful
Speaker 1: for so so many pieces, Like I look back on
Speaker 1: it and it was one of the worst things that
Speaker 1: have ever happened to me, ended up being such a
Speaker 1: blessing because it's created the career that I have that
Speaker 1: allows me to support myself and live the life that
Speaker 1: I want to live and help my family however I
Speaker 1: can help them and be there, so like, I honestly
Speaker 1: don't know what my life would look like today if
Speaker 1: it wasn't for all of those experiences occurring the way
Speaker 1: they happened.
Speaker 3: His ability to give hope, his ability to counsel and
Speaker 3: celebrate the wins for other patients, being able to look
Speaker 3: back and reflect and one what he's doing. It's just incredible,
Speaker 3: and I'm so proud of the work that he's doing,
Speaker 3: and he knows he's making an impact, and I know
Speaker 3: he's making a real impact both in other patients and
Speaker 3: 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 really be
Speaker 1: grateful for what you have and even if you're a
Speaker 1: bad situation, do the best you can to learn and
Speaker 1: look for help and resources and support, like never be
Speaker 1: too proud to do that, and just do what you
Speaker 1: can and just never give up hope there could be
Speaker 1: 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 Tares.
Speaker 1: It took me about a year to get my proper
Speaker 1: diagnosis of all sort 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 Dubois is suddenly
Speaker 4: 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 9: I looked up and I saw my neurosurgeon, and he's
Speaker 9: asking me the questions like you see on TV when
Speaker 9: you know something really bad happen? Do you know your name?
Speaker 9: Do you know what year it is? And do you
Speaker 9: 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 and please rate and review Symptomatic
Speaker 4: wherever you get your podcasts. We'll see you next time.
Speaker 4: Until then, be well. Symptomatic is a production of Ruby
Speaker 4: Studio from iHeartMedia. Our show is hosted by me Lauren
Speaker 4: Bret Pacheco. Execroducers are Matt Romano and myself. Our EP
Speaker 4: of post production is James Foster. Our supervising producer is
Speaker 4: crra Kaiser. Our writers are John Erwin and Diana Davis,
Speaker 4: and our editor is CR Spreen. I'm Cindy Lauper with
Speaker 4: fellow Concentics Advocate chef Michelle Bernstein.
Speaker 6: We'll share our experiences with plaque sariases with soriatic arthritis,
Speaker 6: and doctor Panico will talk about the possible.
Speaker 5: Connection Cocentic sec you can you.
Speaker 7: MAB is prescribed for adults with moderate to severe plack
Speaker 7: sorias as three hundred milligram dose and adults with active
Speaker 7: soriatic arthritis one hundred and fifty milligram dose. Don't use
Speaker 7: if you're allergic to cocentics. Before starting, get checked for TB,
Speaker 7: serious allergic reactions, severe skin reactions that look like ecima,
Speaker 7: and an increased risk of infections. Some fatal have occurred.
Speaker 7: It may lower your ability to fight infections, so tell
Speaker 7: your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle, eggs,
Speaker 7: or cough, How do to vaccine or plan to or
Speaker 7: if IBD symptoms Developer Warson learn more at one eight
Speaker 7: four four Conthentics, orcocentics dot com, slash chef Michelle