Really, my condition was continuously dropping. None of the treatment was working. It got to the point where I was actually that to give me nutrition through a tube.

Really, my condition was continuously dropping. None of the treatment was working. It got to the point where I was actually that to give me nutrition through a tube.

It was hard because obviously anyone knows that if you see blood, it's not a good thing at all, and it's not something that's I don't think it's going to go away.

It was hard because obviously anyone knows that if you see blood, it's not a good thing at all, and it's not something that's I don't think it's going to go away.

The fear continues to fester. It just becomes a potential really dark spiral for some patients.

The fear continues to fester. It just becomes a potential really dark spiral for some patients.

I think my lowest point was having that sinking feeling of my life is never going to be the same.

I think my lowest point was having that sinking feeling of my life is never going to be the same.

How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming. What if that enemy was coming from within a disease that even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Brite Pacheco, and this is symptomatic. Jose Torres has always felt most at home when he can express himself, whether it's through music, poetry, or visual arts.

How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming. What if that enemy was coming from within a disease that even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These are their stories. I'm Lauren Brite Pacheco, and this is symptomatic. Jose Torres has always felt most at home when he can express himself, whether it's through music, poetry, or visual arts.

Ever since I was kid, I used to always draw like cartoons, and as I grew up, continued sketching actually went to middle school for art specifically.

Ever since I was kid, I used to always draw like cartoons, and as I grew up, continued sketching actually went to middle school for art specifically.

Though Jose was raised by his grandparents throughout his childhood, his mother, Araceli, was always a huge part of a support system. What kind of qualities does he have make him so special?

Though Jose was raised by his grandparents throughout his childhood, his mother, Araceli, was always a huge part of a support system. What kind of qualities does he have make him so special?

He's intelligent, he's sensitive, he's hard working, he doesn't settle. He's a very strong person. A lot of people grow fond of him really quickly. He's very social, unlike me, I'm the opposite of him. But he likes to be around people and he likes to help people as well.

He's intelligent, he's sensitive, he's hard working, he doesn't settle. He's a very strong person. A lot of people grow fond of him really quickly. He's very social, unlike me, I'm the opposite of him. But he likes to be around people and he likes to help people as well.

So tell me philosophy, poetry, reading, music, fan artist. How did you get into boxing?

So tell me philosophy, poetry, reading, music, fan artist. How did you get into boxing?

I had a bit of a rough upbringing, so that was a way my mother identified was just like, let's put that energy to something productive. Boxing was also a huge sport just in the home, Like my grandfather growing up would always watch like the big fights and whatnot. So I was like, yeah, sure, why not? So we found a gym. I went, had a quick like intro session, loved it, and that was it. If I wasn't in school, I was likely in the gym.

I had a bit of a rough upbringing, so that was a way my mother identified was just like, let's put that energy to something productive. Boxing was also a huge sport just in the home, Like my grandfather growing up would always watch like the big fights and whatnot. So I was like, yeah, sure, why not? So we found a gym. I went, had a quick like intro session, loved it, and that was it. If I wasn't in school, I was likely in the gym.

And by the time you were a freshman and you were really into boxing.

And by the time you were a freshman and you were really into boxing.

Yes, at that point, the idea was my trainer wanted to start preparing me to compete in potentially the Golden Gloves tournament to see how I.

Yes, at that point, the idea was my trainer wanted to start preparing me to compete in potentially the Golden Gloves tournament to see how I.

Placed there, And at that point, no pun intended, but you ended up getting knocked out in terms of health. You know, I was saying, your mom must be tough, but I should think to a certain extent, seeing you box prepared her for what you were about to battle in terms of your health.

Placed there, And at that point, no pun intended, but you ended up getting knocked out in terms of health. You know, I was saying, your mom must be tough, but I should think to a certain extent, seeing you box prepared her for what you were about to battle in terms of your health.

My mom's a tough woman, but nothing prepared us for that for the bout that came about with my health, because yeah, it came out of nowhere.

My mom's a tough woman, but nothing prepared us for that for the bout that came about with my health, because yeah, it came out of nowhere.

It was just a regular day.

It was just a regular day.

I probably just gotten back from college courses and I went to use the restroom and there was blood.

I probably just gotten back from college courses and I went to use the restroom and there was blood.

So that was the first thing. I was like, Oh, that's different.

So that was the first thing. I was like, Oh, that's different.

But I didn't tell anyone because I just figured, oh, it's stomach bug, maybe it's something I ate.

But I didn't tell anyone because I just figured, oh, it's stomach bug, maybe it's something I ate.

It'll go away. I just figure it would pass and it wasn't a big deal.

It'll go away. I just figure it would pass and it wasn't a big deal.

So initially you just kind of dismissed it as a fluke. Yeah, and then when did it next to get on your radar as an issue?

So initially you just kind of dismissed it as a fluke. Yeah, and then when did it next to get on your radar as an issue?

So then the blood continued, not frequently enough for me to be alarmed, which sounds crazy, but it still occurred a few times in the weeks coming up. But then I started feeling intense cramping and abdominal pains. But even that I kind of just shuk it off. Still didn't say anything to anyone. And part of that is honestly like a cultural thing, like within Latin households, we don't like going to the doctor typically unless it's absolutely necessary.

So then the blood continued, not frequently enough for me to be alarmed, which sounds crazy, but it still occurred a few times in the weeks coming up. But then I started feeling intense cramping and abdominal pains. But even that I kind of just shuk it off. Still didn't say anything to anyone. And part of that is honestly like a cultural thing, like within Latin households, we don't like going to the doctor typically unless it's absolutely necessary.

We were like, oh, it'll.

We were like, oh, it'll.

Go away, it'll be fine, and just growing up, even like a tail and all, like, we wouldn't take that unless it was absolutely necessary. Like we were just you know, natural ways to get rid of fevers and whatnot.

Go away, it'll be fine, and just growing up, even like a tail and all, like, we wouldn't take that unless it was absolutely necessary. Like we were just you know, natural ways to get rid of fevers and whatnot.

So I just didn't mention it.

So I just didn't mention it.

What is your day to day like at this point, is it impacting you commuting your classes?

What is your day to day like at this point, is it impacting you commuting your classes?

Yeah, one hundred percent.

Yeah, one hundred percent.

I was not able to make it to class half the time because at this point also what started to manifest was restroom urgency. Frankly so even taking the train, because you know, I lived in Brooklyn, my school was in Manhattan. I was also working part time at the time as well, so it's just I couldn't make it to everything. On top of training, I became tired to even go to the gym. To train and box anymore.

I was not able to make it to class half the time because at this point also what started to manifest was restroom urgency. Frankly so even taking the train, because you know, I lived in Brooklyn, my school was in Manhattan. I was also working part time at the time as well, so it's just I couldn't make it to everything. On top of training, I became tired to even go to the gym. To train and box anymore.

You know, I just want to focus on that because psychologically, that transition into fear that you need to use the restroom into an absolute necessity.

You know, I just want to focus on that because psychologically, that transition into fear that you need to use the restroom into an absolute necessity.

It's what the.

It's what the.

Normal person experiences, but on volume ten. So it's like getting food poisoning out of the blue, and particularly in New York City subways, there are no restrooms.

Normal person experiences, but on volume ten. So it's like getting food poisoning out of the blue, and particularly in New York City subways, there are no restrooms.

Right.

Right.

It was definitely a challenge that prohibited me, to your point, to go anywhere, Like you had to be aware of how long is it going to take me, you know, where would the restrooms be.

It was definitely a challenge that prohibited me, to your point, to go anywhere, Like you had to be aware of how long is it going to take me, you know, where would the restrooms be.

But beyond the restroom.

But beyond the restroom.

Issue, just the fatigue, the depleted energy, the pain, like there's so many other things that went along with that that caused me to not be able to do a lot of things.

Issue, just the fatigue, the depleted energy, the pain, like there's so many other things that went along with that that caused me to not be able to do a lot of things.

When he was in school, I wasn't around, So I can only imagine how hard it was for him to know that he may have to go and have to get off the train or have to rush and it's kind of also embarrassing. I'm sure for him.

When he was in school, I wasn't around, So I can only imagine how hard it was for him to know that he may have to go and have to get off the train or have to rush and it's kind of also embarrassing. I'm sure for him.

It's not something that people can necessarily say, it's not something that people can necessarily understand, and it's a difficult thing to talk about.

It's not something that people can necessarily say, it's not something that people can necessarily understand, and it's a difficult thing to talk about.

Yeah, I mean, no one likes talking about restroom issues, right, it's almost still taboo. So when someone is experiencing especially, we don't know what it is. We don't know what's happening or having these experiences. It was very difficult to communicate due to lack of understanding, and to your point, like it's difficult to share beyond the urgency. Even if I do decide to go somewhere and I get stricken with a crippling cramp or abdominal pain, then I would have to like go crow up in a corner somewhere.

Yeah, I mean, no one likes talking about restroom issues, right, it's almost still taboo. So when someone is experiencing especially, we don't know what it is. We don't know what's happening or having these experiences. It was very difficult to communicate due to lack of understanding, and to your point, like it's difficult to share beyond the urgency. Even if I do decide to go somewhere and I get stricken with a crippling cramp or abdominal pain, then I would have to like go crow up in a corner somewhere.

Persisting for months on end, the symptoms became impossible to ignore, starting to interfere with Jose's life, especially his boxing dreams. Instead of focusing on his next training session, he was now just trying to make it to class. It reached a point where he could no longer hide it from his mom.

Persisting for months on end, the symptoms became impossible to ignore, starting to interfere with Jose's life, especially his boxing dreams. Instead of focusing on his next training session, he was now just trying to make it to class. It reached a point where he could no longer hide it from his mom.

And then it got to the point where then fatigue started to kick in.

And then it got to the point where then fatigue started to kick in.

Fatigue isn't just being tired.

Fatigue isn't just being tired.

When I say fatigue, I mean like you literally don't have the energy to get out of bed. It's almost difficult to explain if you've never experienced it. Just imagine if your body was completely drained of any energy or will to move, like we can't move if we wanted to, And I was just so exhausted that my mom took notice. There was just one day that I just couldn't get up, like I couldn't make it. It's a class that day, and then my mom was just like, there's something wrong, like what's going on with you?

When I say fatigue, I mean like you literally don't have the energy to get out of bed. It's almost difficult to explain if you've never experienced it. Just imagine if your body was completely drained of any energy or will to move, like we can't move if we wanted to, And I was just so exhausted that my mom took notice. There was just one day that I just couldn't get up, like I couldn't make it. It's a class that day, and then my mom was just like, there's something wrong, like what's going on with you?

So then Nan I finally broke and told her.

So then Nan I finally broke and told her.

And she was like, yeah, we need to get you checked because I've never seen you like this before.

And she was like, yeah, we need to get you checked because I've never seen you like this before.

He called me over and he was bleeding severely, and that's when we rushed to the hospital.

He called me over and he was bleeding severely, and that's when we rushed to the hospital.

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

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

It was hard because I know that obviously anyone knows that if you see blood, it's not a good thing at all. I don't think it's going to go away, so I kind of knew that it was really serious.

It was hard because I know that obviously anyone knows that if you see blood, it's not a good thing at all. I don't think it's going to go away, so I kind of knew that it was really serious.

At the hospital, doctors drew blood, performed a colonoscopy, a procedure where a fiber optic instrument is inserted to examine the inside of the colon, and administered a barium swallow test, where Jose ingested a chalk liquid that made his upper gastrointestinal tract visible on X rays. There were so many other procedures that they all started to blur together. For Jose and as a boxer, I'm sure that you were pretty aware of your weight and your body composition. What's happening to you physically?

At the hospital, doctors drew blood, performed a colonoscopy, a procedure where a fiber optic instrument is inserted to examine the inside of the colon, and administered a barium swallow test, where Jose ingested a chalk liquid that made his upper gastrointestinal tract visible on X rays. There were so many other procedures that they all started to blur together. For Jose and as a boxer, I'm sure that you were pretty aware of your weight and your body composition. What's happening to you physically?

I'm just getting weaker again, not being able to train as regularly or at all. You know, it got to a point where I was so fatigued the end that I had to stop training altogether. So it was very difficult for me to maintain weight on top of not being able to exercise, which you know, just added to the fatigue. It just became a cycle of one thing compounding on the other, compounding on the other.

I'm just getting weaker again, not being able to train as regularly or at all. You know, it got to a point where I was so fatigued the end that I had to stop training altogether. So it was very difficult for me to maintain weight on top of not being able to exercise, which you know, just added to the fatigue. It just became a cycle of one thing compounding on the other, compounding on the other.

He was getting skinnier and skinnier and skinnier and skinnier, and it was very difficult.

He was getting skinnier and skinnier and skinnier and skinnier, and it was very difficult.

That must have been so frightening. What is the doctor saying and what does the doctor think it is?

That must have been so frightening. What is the doctor saying and what does the doctor think it is?

So they told me that was Crohn's disease, which you know, durable. So getting hit with that at that age, it was just instantly like, oh what now, Like what is my life going to look like? What does this mean for me? I'm still so young, Like, what is the rest of my life going to look like?

So they told me that was Crohn's disease, which you know, durable. So getting hit with that at that age, it was just instantly like, oh what now, Like what is my life going to look like? What does this mean for me? I'm still so young, Like, what is the rest of my life going to look like?

Crohn's disease is a chronic condition that causes inflammation in the digestive tract, leading to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition. If left unchecked, it can result in debilitating and potentially life threatening complications.

Crohn's disease is a chronic condition that causes inflammation in the digestive tract, leading to abdominal pain, severe diarrhea, fatigue, weight loss, and malnutrition. If left unchecked, it can result in debilitating and potentially life threatening complications.

I started reading about chrones, and I read that it could be deadly, it could be just life long. I had no idea that they would say, oh, your son has a disease and he's going to have issues. It's going to change his life.

I started reading about chrones, and I read that it could be deadly, it could be just life long. I had no idea that they would say, oh, your son has a disease and he's going to have issues. It's going to change his life.

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

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

It went back to, like, what is my life going to look like now?

It went back to, like, what is my life going to look like now?

I was still going to school, but struggling because of you know, all the symptoms and everything, and being in and out the hospital and not the doctor's offices.

I was still going to school, but struggling because of you know, all the symptoms and everything, and being in and out the hospital and not the doctor's offices.

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

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

Jose had been in and out of the hospital five times in just a few months. During that period, he lost thirty pounds, drastically changing his appearance and overall well being. Even though he now had a diagnosis, the lack of a clear treatment plan left him feeling like he was just treading water.

Jose had been in and out of the hospital five times in just a few months. During that period, he lost thirty pounds, drastically changing his appearance and overall well being. Even though he now had a diagnosis, the lack of a clear treatment plan left him feeling like he was just treading water.

They told me to keep a food diary and was just like, if you eat something that makes you not feel well, don't need it again. And in my head that just didn't make any sense.

They told me to keep a food diary and was just like, if you eat something that makes you not feel well, don't need it again. And in my head that just didn't make any sense.

Now, on top of fearing urgency, you have to fear everything you're eating.

Now, on top of fearing urgency, you have to fear everything you're eating.

Pretty much, because yeah, there was no guidance, And in my head, it was just like, all right, I'm write down what I eat in a day, and if I don't feel well, hey, how do I pinpoint what is it that I ate that made me feel bad or land me back in the hospital? And again like what was the long term solution? I'd been prescribed to regimen of medications as well at that time. It got slightly better, but not not manageable.

Pretty much, because yeah, there was no guidance, And in my head, it was just like, all right, I'm write down what I eat in a day, and if I don't feel well, hey, how do I pinpoint what is it that I ate that made me feel bad or land me back in the hospital? And again like what was the long term solution? I'd been prescribed to regimen of medications as well at that time. It got slightly better, but not not manageable.

So you have a diagnosis, it is not an optimistic one. How do your conditions continue at that point? Is there any kind of respite?

So you have a diagnosis, it is not an optimistic one. How do your conditions continue at that point? Is there any kind of respite?

There was a slight break, so like the frequency reduced a little bit, the urgency reduced a little bit, but there was still the fatigue. There was still the issue of what do I eat because I was still regularly going back to the doctor or the hospital because of severe symptoms.

There was a slight break, so like the frequency reduced a little bit, the urgency reduced a little bit, but there was still the fatigue. There was still the issue of what do I eat because I was still regularly going back to the doctor or the hospital because of severe symptoms.

So we had to do completely different no skins, you know, blend, no seasonings, baked chicken, no fried foods at all, vegetables. It just had to be like a very soft food diet, nothing cruciferous, nothing that would hurt his stomach, so that at least we wouldn't have any flares.

So we had to do completely different no skins, you know, blend, no seasonings, baked chicken, no fried foods at all, vegetables. It just had to be like a very soft food diet, nothing cruciferous, nothing that would hurt his stomach, so that at least we wouldn't have any flares.

And that's a huge undertaking because suddenly you're having to second guess and think about everything that's going into his mouth.

And that's a huge undertaking because suddenly you're having to second guess and think about everything that's going into his mouth.

Yeah, it wasn't what I want to eat, it's what I have to eat.

Yeah, it wasn't what I want to eat, it's what I have to eat.

The diagnosis offered only a guise of normalcy, a brief flashback to life before the symptoms began.

The diagnosis offered only a guise of normalcy, a brief flashback to life before the symptoms began.

But as the.

But as the.

Flare ups returned and grew more frequent, Jose and Rselly knew they needed to push for a second opinion.

Flare ups returned and grew more frequent, Jose and Rselly knew they needed to push for a second opinion.

As a mom with a child that has a diagnosis as severe as that, I didn't want just one opinion. I wanted a second opinion. I found a center that was specifically for pediatric gesture enterology, and we made an appointment and.

As a mom with a child that has a diagnosis as severe as that, I didn't want just one opinion. I wanted a second opinion. I found a center that was specifically for pediatric gesture enterology, and we made an appointment and.

They re ran all the tests and did the blood work all over again, and they actually came back with a different diagnosis of all sort of colitis.

They re ran all the tests and did the blood work all over again, and they actually came back with a different diagnosis of all sort of colitis.

So what was that like for you? Somewhat relief?

So what was that like for you? Somewhat relief?

It was because when I shared what I was being told from my previous doctors. The current doctors that had found that did give me the proper diagnosis and whatnot, were also in disagreement with like the food diary thing, and they were just like they should have done XYZ. And so that gave me confidence in this medical team that Okay, this is the team I can trust, and let's see what happens here. And they did prescribe me a regiment of medications that actually did work, at least for a time.

It was because when I shared what I was being told from my previous doctors. The current doctors that had found that did give me the proper diagnosis and whatnot, were also in disagreement with like the food diary thing, and they were just like they should have done XYZ. And so that gave me confidence in this medical team that Okay, this is the team I can trust, and let's see what happens here. And they did prescribe me a regiment of medications that actually did work, at least for a time.

Altered of colitis is a disease that causes severe inflammation and ulcers in the large intestine. In most people. Symptoms develop gradually, but they can be draining and even life threatening if not properly treated. It's estimated that nearly seven hundred and fifty thousand people in North America are affected by disease. Both Crohn's disease and alsortive colitis fall under the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, doctor Brian Bosworth, explains the difference between the two.

Altered of colitis is a disease that causes severe inflammation and ulcers in the large intestine. In most people. Symptoms develop gradually, but they can be draining and even life threatening if not properly treated. It's estimated that nearly seven hundred and fifty thousand people in North America are affected by disease. Both Crohn's disease and alsortive colitis fall under the umbrella of inflammatory bowel disease. Jose's current gastrentrologist, doctor Brian Bosworth, explains the difference between the two.

Inflammatory bowel diseases are a spectrum of presentations of an autoimmune attack by your white blood cells on your intestines and when that goes awry, that can lead to more white blood cells coming in, more destruction of tissue. And in the case of all sort of colitis, it's really the surface level of the colon, and so some symptoms that patients would get would be bleeding, diarrhea, urgency that they have to run to the bathroom right away if they felt the urge to go because they were afraid that they would have an accident or not be able to control it. If that inflammation is not just at the surface level on the inside of the bowl, but actually is throughout the entire wall of the bowl, that's more Crone's disease. It's what we call transmural through the wall, and that can have the same types of symptoms and presentation, but it could also have other complications.

Inflammatory bowel diseases are a spectrum of presentations of an autoimmune attack by your white blood cells on your intestines and when that goes awry, that can lead to more white blood cells coming in, more destruction of tissue. And in the case of all sort of colitis, it's really the surface level of the colon, and so some symptoms that patients would get would be bleeding, diarrhea, urgency that they have to run to the bathroom right away if they felt the urge to go because they were afraid that they would have an accident or not be able to control it. If that inflammation is not just at the surface level on the inside of the bowl, but actually is throughout the entire wall of the bowl, that's more Crone's disease. It's what we call transmural through the wall, and that can have the same types of symptoms and presentation, but it could also have other complications.

So both would be diagnosed through a colonoscopy.

So both would be diagnosed through a colonoscopy.

Cronesses and ulcer of colitis are clinical diagnoses, and it's a combination of the endoscopic view through a colonoscopy, the pathologic presentation, what it looks like when we take little biopsies in the colon, the way that the cells are arranged, or even the types of cells, the imaging. So radiology studies MRIs or cat scans. In Jose's case, he also had a pill camera where he swallowed a little pill that took pictures all the way through his intestines.

Cronesses and ulcer of colitis are clinical diagnoses, and it's a combination of the endoscopic view through a colonoscopy, the pathologic presentation, what it looks like when we take little biopsies in the colon, the way that the cells are arranged, or even the types of cells, the imaging. So radiology studies MRIs or cat scans. In Jose's case, he also had a pill camera where he swallowed a little pill that took pictures all the way through his intestines.

That's so much for you to experience at such a young age.

That's so much for you to experience at such a young age.

Yeah, I think my lowest point was when the doctor told me what they thought it was at that time, and then just instantly having that sinking feeling of my life is never going to be the same. You mentioned my mother earlier, like watching me box was nothing compared to her watching me go through this and helping me get through it and just see me continuously not get better and get worse over time.

Yeah, I think my lowest point was when the doctor told me what they thought it was at that time, and then just instantly having that sinking feeling of my life is never going to be the same. You mentioned my mother earlier, like watching me box was nothing compared to her watching me go through this and helping me get through it and just see me continuously not get better and get worse over time.

And yeah, it was difficult.

And yeah, it was difficult.

In terms of the mental challenges that go hand in hand with IBD, particularly severe cases of all sort of colitis. How as a gastroentrologists do you help patients navigate the mental aspect because there's a great deal of shame and secrecy and guilt and frustration and hopelessness wrapped in one.

In terms of the mental challenges that go hand in hand with IBD, particularly severe cases of all sort of colitis. How as a gastroentrologists do you help patients navigate the mental aspect because there's a great deal of shame and secrecy and guilt and frustration and hopelessness wrapped in one.

You're so right.

You're so right.

When they've done studies looking at quality of life, patients with crohnes and ulcrapplities have a lower quality of life index than cancer patients do.

When they've done studies looking at quality of life, patients with crohnes and ulcrapplities have a lower quality of life index than cancer patients do.

Wow, that's unbelievable.

Wow, that's unbelievable.

And part of that is, just like you said, there's a shame aspected to it. It's not anything that they brought on on themselves, obviously, but what's the primary presenting problem while it's running to the bathroom? And that can be embarrassing in that perhaps there are certain foods that you eat that tend to set you off, or if there are other circumstances and you're going through a flare to have to run to a bathroom and you feel chained to your house right, you're afraid to leave. And on the mental health side, we also find that it's critically important to work with mental health professionals. So here at the NYU Lengo and plumat for a Bill Disease Center, we employ a full time psychologist who sees all of our patients who need to see her, and it's been so impactful to have that partnership.

And part of that is, just like you said, there's a shame aspected to it. It's not anything that they brought on on themselves, obviously, but what's the primary presenting problem while it's running to the bathroom? And that can be embarrassing in that perhaps there are certain foods that you eat that tend to set you off, or if there are other circumstances and you're going through a flare to have to run to a bathroom and you feel chained to your house right, you're afraid to leave. And on the mental health side, we also find that it's critically important to work with mental health professionals. So here at the NYU Lengo and plumat for a Bill Disease Center, we employ a full time psychologist who sees all of our patients who need to see her, and it's been so impactful to have that partnership.

Jose starts to grasp the reality of living with a chronic disease for the rest of his life. While an accurate diagnosis offers a path forward from misdiagnosis. That hope is quickly dashed when a life threatening flare up sends him to ther.

Jose starts to grasp the reality of living with a chronic disease for the rest of his life. While an accurate diagnosis offers a path forward from misdiagnosis. That hope is quickly dashed when a life threatening flare up sends him to ther.

He wasn't getting better, and I thought I was going to lose him.

He wasn't getting better, and I thought I was going to lose him.

We'll be right back with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic, a medical Mystery Podcast. Jose Torres, not even twenty one, had been on a roller coaster of hospital visits for months on end. He had to abandon his boxing dreams and was now struggling to keep up with his college courses, often unable to leave his home due to the pain, fatigue, and constant bathroom urgency. Although he was confident in the new diagnosis a whole sort of colitis, long term relief felt out of reach. So does life go back to normal for a period of time at this point?

We'll be right back with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic, a medical Mystery Podcast. Jose Torres, not even twenty one, had been on a roller coaster of hospital visits for months on end. He had to abandon his boxing dreams and was now struggling to keep up with his college courses, often unable to leave his home due to the pain, fatigue, and constant bathroom urgency. Although he was confident in the new diagnosis a whole sort of colitis, long term relief felt out of reach. So does life go back to normal for a period of time at this point?

For a period of time, for about a year, they did prescribe me a regiment of medications that actually did work, but only for that short time.

For a period of time, for about a year, they did prescribe me a regiment of medications that actually did work, but only for that short time.

Unfortunately, there was still anxiety around urgency. There was still days where I would feel fatigued. It wasn't remission, it was disease management. So it was about as normal as it could have been. I was able to go to school and do what I had to do for my classes. I was able to, you know, spend some time with friends, but there was still that anxiety part of it, the possibility and kind of those thoughts in the back of my head, and frankly, symptoms would arise when I would least expect it. So manageable, but yeah, still not what it was prior to the diagnosis.

Unfortunately, there was still anxiety around urgency. There was still days where I would feel fatigued. It wasn't remission, it was disease management. So it was about as normal as it could have been. I was able to go to school and do what I had to do for my classes. I was able to, you know, spend some time with friends, but there was still that anxiety part of it, the possibility and kind of those thoughts in the back of my head, and frankly, symptoms would arise when I would least expect it. So manageable, but yeah, still not what it was prior to the diagnosis.

Were you in denial initially when things came back full force, that first huge flare after a year of having had things settle down, Were you hoping it was just like a temporary blip.

Were you in denial initially when things came back full force, that first huge flare after a year of having had things settle down, Were you hoping it was just like a temporary blip.

Yeah.

Yeah.

I could compare it to the mindset I had when I first had symptoms. I was just like, I'm just going to be feeling like this today, or I'm just gonna be feeling like this this week. And then the week turned into two weeks and it was like, nope, it's here.

I could compare it to the mindset I had when I first had symptoms. I was just like, I'm just going to be feeling like this today, or I'm just gonna be feeling like this this week. And then the week turned into two weeks and it was like, nope, it's here.

We go again.

We go again.

And then what happened?

And then what happened?

Then I flared, So all of the symptoms came back full force, the fatigue, the blood, the pain. They had tried in other kind of regiment of medications. They had tried to increase hostages and nothing worked this time. So it got to the point where I was I was hospitalized for a good portion of time and actually had to take a semester off of school because I was missing so much of it.

Then I flared, So all of the symptoms came back full force, the fatigue, the blood, the pain. They had tried in other kind of regiment of medications. They had tried to increase hostages and nothing worked this time. So it got to the point where I was I was hospitalized for a good portion of time and actually had to take a semester off of school because I was missing so much of it.

That's so much Jose, Yeah, you must have just felt so overwhelmed with having to just fight through every day.

That's so much Jose, Yeah, you must have just felt so overwhelmed with having to just fight through every day.

Yeah, it was difficult because at the worst I was just long term admitted to the hospital and my condition was continuously dropping.

Yeah, it was difficult because at the worst I was just long term admitted to the hospital and my condition was continuously dropping.

None of the treatment was working.

None of the treatment was working.

I dropped down to round one hundred pounds.

I dropped down to round one hundred pounds.

So we went into a lot of problems. He was not keeping food down. They had to put a food tube in him, which in itself was very, very scary and difficult to make a decision, but there's no other choice. So I pretty much lived in the hospital with him for a whole month, and that was very hard.

So we went into a lot of problems. He was not keeping food down. They had to put a food tube in him, which in itself was very, very scary and difficult to make a decision, but there's no other choice. So I pretty much lived in the hospital with him for a whole month, and that was very hard.

It was quite a battle, and yeah, I was pretty much experiencing everything he could possibly experience associated with colliitus.

It was quite a battle, and yeah, I was pretty much experiencing everything he could possibly experience associated with colliitus.

At that point, after everything you had been through too, and he had been through, that just must have been like how much more can you two take?

At that point, after everything you had been through too, and he had been through, that just must have been like how much more can you two take?

It was very hard, but you can't give up, right, You have to keep going. There has to be some kind of bright light at the end of all of this.

It was very hard, but you can't give up, right, You have to keep going. There has to be some kind of bright light at the end of all of this.

It must have been like an may or that you felt you couldn't wake up from.

It must have been like an may or that you felt you couldn't wake up from.

It was you don't want anyone to have to go through that with a child, and like I said, the weight loss was scaring me and I felt like I was losing him.

It was you don't want anyone to have to go through that with a child, and like I said, the weight loss was scaring me and I felt like I was losing him.

Were you afraid for sure?

Were you afraid for sure?

Because I was again at one hundred pounds with that with everything going on, like it came back to that.

Because I was again at one hundred pounds with that with everything going on, like it came back to that.

Question of what now, like what could potentially happen here?

Question of what now, like what could potentially happen here?

I say, how long were you in the hospital?

I say, how long were you in the hospital?

It was in and out a couple of months.

It was in and out a couple of months.

And then the doctors came to me and they were like, to be Frank, there's two options here. There's this due form of medication that's out that we can see if that works after a couple of infusions or their surgery.

And then the doctors came to me and they were like, to be Frank, there's two options here. There's this due form of medication that's out that we can see if that works after a couple of infusions or their surgery.

And by surgery, it means to take a huge chunk of your intestines.

And by surgery, it means to take a huge chunk of your intestines.

The entire large intestine, the entire large intestine out. So again at nineteen, me and my mom were sitting there, you know, having to make the decision, and you know, we're like, let's shot the medication because we're not going to opt into such a major surgery.

The entire large intestine, the entire large intestine out. So again at nineteen, me and my mom were sitting there, you know, having to make the decision, and you know, we're like, let's shot the medication because we're not going to opt into such a major surgery.

So we did, and that didn't work.

So we did, and that didn't work.

I'm sure your mother is trying to be your biggest support system at that point, but were you ever worried about her? Did you then kind of make that the guilt of being sick when you see how it impacts someone else is sometimes overwhelming.

I'm sure your mother is trying to be your biggest support system at that point, but were you ever worried about her? Did you then kind of make that the guilt of being sick when you see how it impacts someone else is sometimes overwhelming.

Yeah, one hundred percent.

Yeah, one hundred percent.

I mean, she took time off of work, could the nights at a stay in the hospital.

I mean, she took time off of work, could the nights at a stay in the hospital.

She was there with me, even if she had a sleep on a chair.

She was there with me, even if she had a sleep on a chair.

She was there throughout that entire time, and even to this day sometimes I think about it because you know, my mom was always a very strong woman, but after this diagnosis, she became very anxious. So I always think back to myself, like, I wonder was it because of my diagnosi that she got that way?

She was there throughout that entire time, and even to this day sometimes I think about it because you know, my mom was always a very strong woman, but after this diagnosis, she became very anxious. So I always think back to myself, like, I wonder was it because of my diagnosi that she got that way?

So, yeah, it definitely took a toll.

So, yeah, it definitely took a toll.

What did her being there for you mean to.

What did her being there for you mean to.

It meant the world because growing up I was raised by my grandparents because my mother had me very young, so she was as present as she could be. But it wasn't until I moved in with her when I started high school that we really started to build a relationship. But it was during this period where I couldn't thank her and appreciate her enough for just her being there at the time where I frankly needed somebody the most, and she was there.

It meant the world because growing up I was raised by my grandparents because my mother had me very young, so she was as present as she could be. But it wasn't until I moved in with her when I started high school that we really started to build a relationship. But it was during this period where I couldn't thank her and appreciate her enough for just her being there at the time where I frankly needed somebody the most, and she was there.

Desperate to avoid major surgery and the risk of irreparable damage to his intestines. Jose began a series of infusions to reduce the kalita symptoms and hopefully improve his quality of life.

Desperate to avoid major surgery and the risk of irreparable damage to his intestines. Jose began a series of infusions to reduce the kalita symptoms and hopefully improve his quality of life.

I believe it was either two or three rounds of infusion over a period of a few weeks and nothing improved.

I believe it was either two or three rounds of infusion over a period of a few weeks and nothing improved.

So now now we had to do the surgery.

So now now we had to do the surgery.

Surgery is not even a choice, it's a necessity to save your life. Yeah, all right, walk me through the surgery.

Surgery is not even a choice, it's a necessity to save your life. Yeah, all right, walk me through the surgery.

Yeah.

Yeah.

The first surgery was a total collectomy, so again, removal of the entire large intestine. I'd been told going in, you're going to have an ostheme bag for a time, possibly forever, but at least the idea was for it to be for a time.

The first surgery was a total collectomy, so again, removal of the entire large intestine. I'd been told going in, you're going to have an ostheme bag for a time, possibly forever, but at least the idea was for it to be for a time.

The collectomy was the first and what would be a three part surgery sequence, creating an external bag to collect bodily waste. Doctor Bosworth took over Jose's care after his first surgery, and from the beginning they established a relationship built on trust, the basis of what would become a lifelong partnership.

The collectomy was the first and what would be a three part surgery sequence, creating an external bag to collect bodily waste. Doctor Bosworth took over Jose's care after his first surgery, and from the beginning they established a relationship built on trust, the basis of what would become a lifelong partnership.

Most patients when they have the jpouch surgery beforehand are apprehensive and really fearful that they're going to be left with a permanent bag and having completed his surgeries. That was one of the things that he was concerned about. Am I going to have to have another surgery and then be left forever having a bag outside? And how is that going to impact his life?

Most patients when they have the jpouch surgery beforehand are apprehensive and really fearful that they're going to be left with a permanent bag and having completed his surgeries. That was one of the things that he was concerned about. Am I going to have to have another surgery and then be left forever having a bag outside? And how is that going to impact his life?

I remember just feeling relief because doctor Bosworth, even at that time, was extremely well regarded in the space.

I remember just feeling relief because doctor Bosworth, even at that time, was extremely well regarded in the space.

Do you remember meeting jose and his mother for the first time?

Do you remember meeting jose and his mother for the first time?

Very well.

Very well.

He now he comes to appointments without his mother from president, but the very beginning she was right there by his side every step of the way. And when we first met, we talked through what his course beforehands had been, and what the decision to actually undergo surgery was and what that meant for somebody who was eighteen nineteen twenty years old, and how I was going to help both of them together go forward and what that meant for them as they continued on with him having the EJ Pouch.

He now he comes to appointments without his mother from president, but the very beginning she was right there by his side every step of the way. And when we first met, we talked through what his course beforehands had been, and what the decision to actually undergo surgery was and what that meant for somebody who was eighteen nineteen twenty years old, and how I was going to help both of them together go forward and what that meant for them as they continued on with him having the EJ Pouch.

The confidence in which that he spoke, and even his rapport and bedsign manner like, he was just very comforting. It was almost like talking to a friend, if you will. Didn't feel like I was talking to a doctor. He was is very approachable.

The confidence in which that he spoke, and even his rapport and bedsign manner like, he was just very comforting. It was almost like talking to a friend, if you will. Didn't feel like I was talking to a doctor. He was is very approachable.

One of the things that I think is really important in working with patients and their families. And a goal is that patients with chronic diseases are going to have chronic diseases, but it shouldn't be who they are, and it shouldn't control their lives. And being able to help to restore some degree of control, some individuality, and some ability to function. Knowing that you have this but it's not dictating what you're doing is a challenge. And working with both Jose and his mom together both to get past some of the anxieties of the therapies that he'd had in the past, what the future might hold, treat any flares that might occur, but also give them hope. And I think that hope is such an important concept when you're talking about a chronic disease.

One of the things that I think is really important in working with patients and their families. And a goal is that patients with chronic diseases are going to have chronic diseases, but it shouldn't be who they are, and it shouldn't control their lives. And being able to help to restore some degree of control, some individuality, and some ability to function. Knowing that you have this but it's not dictating what you're doing is a challenge. And working with both Jose and his mom together both to get past some of the anxieties of the therapies that he'd had in the past, what the future might hold, treat any flares that might occur, but also give them hope. And I think that hope is such an important concept when you're talking about a chronic disease.

The first surgery to remove Jose's large intestine was a success, but the doctor still needed to perform a few additional procedures to ensure he was set up for long term recovery and comfort.

The first surgery to remove Jose's large intestine was a success, but the doctor still needed to perform a few additional procedures to ensure he was set up for long term recovery and comfort.

I had pretty much every post surgical complication you could possibly have just because of the health state I was in. They started to slowly introduce foods and I was regularly having blockages with the ostomy, so they actually had to do another minor surgery not too long after the major one, to increase the size of the ostomy to allow things to kind of like pass through better.

I had pretty much every post surgical complication you could possibly have just because of the health state I was in. They started to slowly introduce foods and I was regularly having blockages with the ostomy, so they actually had to do another minor surgery not too long after the major one, to increase the size of the ostomy to allow things to kind of like pass through better.

Fairly shortly after surgery, he came in and was having some bleeding. And when you're patient with lcercalitis who was diagnosed because you were bleeding, it evokes so much And I'm going to say it, even though it wasn't form, I know it's post traumatic stress disorder, right. You really have that PTSD reaction when you see something that reminds you of a place when you were so sick and there was nothing that was happening. There's a lot of both anxiety that occurs and real fear of what's to come. Because if you've now already had surgery, what's the next step. How could I have more surgery? But Colon's gone, but yet I'm still bleeding. And so we did a pouch asibly we looked in infect His pouch did not have any inflammation.

Fairly shortly after surgery, he came in and was having some bleeding. And when you're patient with lcercalitis who was diagnosed because you were bleeding, it evokes so much And I'm going to say it, even though it wasn't form, I know it's post traumatic stress disorder, right. You really have that PTSD reaction when you see something that reminds you of a place when you were so sick and there was nothing that was happening. There's a lot of both anxiety that occurs and real fear of what's to come. Because if you've now already had surgery, what's the next step. How could I have more surgery? But Colon's gone, but yet I'm still bleeding. And so we did a pouch asibly we looked in infect His pouch did not have any inflammation.

The next step for Jose was surgery to remove the rectum and create a J pouch, preparing him for a third procedure that would eliminate the need for an external bag for his digestive system to function.

The next step for Jose was surgery to remove the rectum and create a J pouch, preparing him for a third procedure that would eliminate the need for an external bag for his digestive system to function.

That third surgery was success.

That third surgery was success.

They were able to reverse the ostomy and the jpouch surgery and that three part sequence had been completed. But it was just such a relief to know that the ostemy had been reversed and now there could be a potential way forward for me to move on with my life. Frankly, it just made me appreciate everything so much more, even food, because you know, going through this recovery period of eating plan things or liquid diets and whatnot. Literally, just the little things I learned to appreciate in value more. Yeah, it's just completely shifted my perspective.

They were able to reverse the ostomy and the jpouch surgery and that three part sequence had been completed. But it was just such a relief to know that the ostemy had been reversed and now there could be a potential way forward for me to move on with my life. Frankly, it just made me appreciate everything so much more, even food, because you know, going through this recovery period of eating plan things or liquid diets and whatnot. Literally, just the little things I learned to appreciate in value more. Yeah, it's just completely shifted my perspective.

Well, that is such a lovely way to look at things, after everything you've been through, pulling the positives from it. After enduring numerous complications and finally undergoing the successful three part surgery, Jose's treatment has now shifted to symptom maintenance. This consists of regular checkups to monitor his inflammation and ensure everything remains under control. Having navigated the terrifying road to relief, he is now determined to be an example to others living with IBD. He currently works at the Crones and Kalidis Foundation, having started there as an intern and worked his way up.

Well, that is such a lovely way to look at things, after everything you've been through, pulling the positives from it. After enduring numerous complications and finally undergoing the successful three part surgery, Jose's treatment has now shifted to symptom maintenance. This consists of regular checkups to monitor his inflammation and ensure everything remains under control. Having navigated the terrifying road to relief, he is now determined to be an example to others living with IBD. He currently works at the Crones and Kalidis Foundation, having started there as an intern and worked his way up.

There's a camp program for children that have closes these and alsative colitis that the foundation runs.

There's a camp program for children that have closes these and alsative colitis that the foundation runs.

So I did that and that changed my life.

So I did that and that changed my life.

Again, just going to a camp and seeing these kids who were the youngest were around six seven, oldest being you know, seventeen, and these kids dealing with what I just went through, and it's just like, geez, some of these kids have ostomies that are not going to be reversed. Some of these kids are on medications that they're never going to get off of, and just to see them enjoy that week of camp as if they were normal kids.

Again, just going to a camp and seeing these kids who were the youngest were around six seven, oldest being you know, seventeen, and these kids dealing with what I just went through, and it's just like, geez, some of these kids have ostomies that are not going to be reversed. Some of these kids are on medications that they're never going to get off of, and just to see them enjoy that week of camp as if they were normal kids.

But it's just kids being kids at the end of the day.

But it's just kids being kids at the end of the day.

And the kids are always so grateful to the counselors there, but you know, amongst us, counselors were always like, the kids don't know the effect they have on us. Again, you just see life in a different way, like if these kids are doing it, and then why can't I. I'm sure they look at us and reverse like, oh they're older, they're living with what I have, they're successful, then I can do it too. So it was just such a powerful experience. I volunteered as a counselor for ten years.

And the kids are always so grateful to the counselors there, but you know, amongst us, counselors were always like, the kids don't know the effect they have on us. Again, you just see life in a different way, like if these kids are doing it, and then why can't I. I'm sure they look at us and reverse like, oh they're older, they're living with what I have, they're successful, then I can do it too. So it was just such a powerful experience. I volunteered as a counselor for ten years.

You must be so proud of how he's blossomed in spite of all of this.

You must be so proud of how he's blossomed in spite of all of this.

Yeah, he's so strong. I don't even think I would be able to do what he did. I don't think I would have the strength and the positiveness that he has. He wanted to share with the kids, he wanted to see them. He went for years just trying to see how they progressed and trying to share his story and tell them that they're going to be okay. And he's a really strong person.

Yeah, he's so strong. I don't even think I would be able to do what he did. I don't think I would have the strength and the positiveness that he has. He wanted to share with the kids, he wanted to see them. He went for years just trying to see how they progressed and trying to share his story and tell them that they're going to be okay. And he's a really strong person.

So if your health struggles depleted you after getting diagnosed, involving yourself in that community was what replenished you.

So if your health struggles depleted you after getting diagnosed, involving yourself in that community was what replenished you.

Percent.

Percent.

It gave me a community. It gave me friends that I still have to this day that again could just really understand everything because they're going through it themselves or have been through it themselves. I've been with the Content Clientist Foundation as a full time employee for the better part of the last eight years now, which I'm again just extremely extremely grateful for so so many pieces Like I look back on it and it was one of the worst things that have ever happened to me. Ended up being such a blessing because it's created the career that I have that allows me to myself and live the life that I want to live and help my family however I can help them and be there, So I honestly don't know what my life would look like today if it wasn't for all of those experiences occurring the way they happened.

It gave me a community. It gave me friends that I still have to this day that again could just really understand everything because they're going through it themselves or have been through it themselves. I've been with the Content Clientist Foundation as a full time employee for the better part of the last eight years now, which I'm again just extremely extremely grateful for so so many pieces Like I look back on it and it was one of the worst things that have ever happened to me. Ended up being such a blessing because it's created the career that I have that allows me to myself and live the life that I want to live and help my family however I can help them and be there, So I honestly don't know what my life would look like today if it wasn't for all of those experiences occurring the way they happened.

His ability to give hope, his ability to counsel and celebrate the wins for other patients, be able to look back and reflect and.

His ability to give hope, his ability to counsel and celebrate the wins for other patients, be able to look back and reflect and.

One what he's doing.

One what he's doing.

It's just incredible, and I'm so proud of the work that he's doing, and he knows he's making an impact, and I know he's making a real impact both in other patients and for himself too.

It's just incredible, and I'm so proud of the work that he's doing, and he knows he's making an impact, and I know he's making a real impact both in other patients and for himself too.

In what ways do you think watching him box did help you?

In what ways do you think watching him box did help you?

That's a tough question. I guess the boxing, I'm worried that he's going to get hurt. You're right, but you can stop it. But with the disease, you can't stop it. You can't run away from it. You just have to cope with it and be strong and just go on with it.

That's a tough question. I guess the boxing, I'm worried that he's going to get hurt. You're right, but you can stop it. But with the disease, you can't stop it. You can't run away from it. You just have to cope with it and be strong and just go on with it.

What do you want people listening to take from your story?

What do you want people listening to take from your story?

Always have faith, and hope.

Always have faith, and hope.

This is going to sound super cliche, but an attitude of gratitude goes a really long way to just really be grateful for what you have and even if you're in a bad situation, do the best you can to learn and look for help and resources and support, like never be too proud to do that, and just do what you can and.

This is going to sound super cliche, but an attitude of gratitude goes a really long way to just really be grateful for what you have and even if you're in a bad situation, do the best you can to learn and look for help and resources and support, like never be too proud to do that, and just do what you can and.

Just never give up.

Just never give up.

Hope there could be a way where you could change your situation.

Hope there could be a way where you could change your situation.

You can find out more about both Crones and Colidis at the Crones and Colidis Foundation website at Cronescalidisfoundation dot org, where you might also come across some of Jose's work.

You can find out more about both Crones and Colidis at the Crones and Colidis Foundation website at Cronescalidisfoundation dot org, where you might also come across some of Jose's work.

My name is Jose Tares.

My name is Jose Tares.

It took me about a year to get my proper diagnosis of all short of colitis and three surgeries later in over a decade. Now I'm fortunate enough to have no symptoms and be living a normal life.

It took me about a year to get my proper diagnosis of all short of colitis and three surgeries later in over a decade. Now I'm fortunate enough to have no symptoms and be living a normal life.

On next week's episode of Symptomatic, Kelly du Bois is suddenly confronted with severe heartburn, rapid weight gain, and appealing scalp, leading her on a confusing path that even led to brain surgery.

On next week's episode of Symptomatic, Kelly du Bois is suddenly confronted with severe heartburn, rapid weight gain, and appealing scalp, leading her on a confusing path that even led to brain surgery.

I looked up and I saw my neurosurgeon and he's asking me the questions like you see on TV when you know something really bad happen? Do you know your name? Do you know what year it is? And do you know who's the president? And I've struggled to speak.

I looked up and I saw my neurosurgeon and he's asking me the questions like you see on TV when you know something really bad happen? Do you know your name? Do you know what year it is? And do you know who's the president? And I've struggled to speak.

But when brain surgery leaves her with irreparable damage and without much relief, she becomes desperate for answers to what really is going on. As always, we would love to hear from you. Send us your thoughts on this episode or share a medical mystery of your own at Symptomatic at iHeartMedia dot com. Please rate and review Symptomatic wherever you get your podcasts. We'll see you next time. Until then, be well. Symptomatic is a production of Ruby Studio from iHeartMedia. Our show is hosted by me Lauren Bret Pacheco. Executive producers are Matt Romano and myself. Our EP of Post Production is James Foster. Our supervising producer is Cierra Kaiser. Our writers are John Irwin and Diana Davis, and our editor is Sierra Spreen

But when brain surgery leaves her with irreparable damage and without much relief, she becomes desperate for answers to what really is going on. As always, we would love to hear from you. Send us your thoughts on this episode or share a medical mystery of your own at Symptomatic at iHeartMedia dot com. Please rate and review Symptomatic wherever you get your podcasts. We'll see you next time. Until then, be well. Symptomatic is a production of Ruby Studio from iHeartMedia. Our show is hosted by me Lauren Bret Pacheco. Executive producers are Matt Romano and myself. Our EP of Post Production is James Foster. Our supervising producer is Cierra Kaiser. Our writers are John Irwin and Diana Davis, and our editor is Sierra Spreen