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- [00:10]
Jose Torres
My condition was continuously dropping. None of the treatment was working. It got to the point where I was actually, daddy, give me nutrition through a tube.
- [00:21]
Araceli Torres
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 gonna go away.
- [00:32]
Dr. Brian Bosworth
The fear continues to fester. It just becomes a potential really dark spiral for some patients.
- [00:38]
Jose Torres
I think my lowest point was having that sinking feeling of, my life is never gonna be the same.
- [00:48]
Lauren Bright Pacheco
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 Bright 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.
- [01:41]
Jose Torres
Ever since I was a kid, I used to always draw, like, cartoons, and as I grew up, continued sketching. I actually went to middle school for art specifically.
- [01:50]
Lauren Bright Pacheco
Though Jose was raised by his grandparents, throughout his childhood, his mother, Araceli, was always a huge part of his support system. What kind of qualities does he have that make him so special?
- [02:02]
Araceli Torres
He's intelligent, he's sensitive, he's hardworking, 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.
- [02:23]
Lauren Bright Pacheco
So tell me, philosophy, poetry reading, music fan, artist, how did you get into boxing?
- [02:31]
Jose Torres
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 the gym, I went, had a quick, like, intro session, loved it, and that was it. And if I wasn't in school, I was likely in the gym.
- [02:58]
Lauren Bright Pacheco
And by the time you were a freshman in college, you were really into boxing?
- [03:02]
Jose Torres
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.
- [03:12]
Lauren Bright Pacheco
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.
- [03:30]
Jose Torres
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. I'd 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. But I didn't tell anyone because I just figured, oh, it's a stomach bug. Maybe it's something I ate. It'll go away. I just figured it would pass, and it wasn't a big deal.
- [04:03]
Lauren Bright Pacheco
So initially, you just kind of dismissed it as a fluke.
- [04:07]
Jose Torres
Yeah.
- [04:08]
Lauren Bright Pacheco
And then when did it next get on your radar as an issue?
- [04:13]
Jose Torres
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 shook 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're like, oh, it'll. It'll go away. It'll be fine. And just growing up, even like a Tylenol, 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.
- [04:55]
Lauren Bright Pacheco
What is your day to day like at this point? Is it impacting your commuting, your classes?
- [05:03]
Jose Torres
Yeah, 100%. 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 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 too tired to even go to the gym to train and box anymore.
- [05:28]
Lauren Bright Pacheco
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 normal person experiences. But on volume 10, so it's like getting food poisoning out of the blue. And particularly in New York City subways, there are no restrooms.
- [05:56]
Jose Torres
Right. It was definitely a challenge that prohibited me. And then 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 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.
- [06:18]
Araceli Torres
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.
- [06:36]
Lauren Bright Pacheco
It's not something that people can necessarily see. It's not something that people can necessarily understand. And it's a difficult thing to talk about.
- [06:46]
Jose Torres
Yeah. I mean, no one likes talking about restroom issues, right? It's almost still taboo. So when someone is experiencing this, especially, we don't know what it is. We don't know what's happening. We're having these experiences. It was very difficult to communicate due to the 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, you know, a crippling cramp or abdominal pain, then I would have to, like, go curl up in a corner somewhere.
- [07:15]
Lauren Bright Pacheco
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.
- [07:35]
Jose Torres
And then it got to the point where then fatigue started to kick in. 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 to class that day. And then my mom was just like, there's something wrong, like, what's going on with you? So then 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.
- [08:16]
Araceli Torres
He called me over and he was bleeding severely. And that's when we rushed to the hospital.
- [08:24]
Lauren Bright Pacheco
Tell me what went through your mind. How horrifying was that?
- [08:28]
Araceli Torres
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 gonna go away. So I kind of knew that it was really serious.
- [08:45]
Lauren Bright Pacheco
At the hospital, Doctors True 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 chalky 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.
- [09:17]
Jose Torres
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 again 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.
- [09:40]
Araceli Torres
He was getting skinnier and skinnier and skinnier and skinnier, and it was very difficult.
- [09:45]
Lauren Bright Pacheco
That must have been so frightening. What is the doctor saying and what does the doctor think it is?
- [09:55]
Jose Torres
So they told me it was Crohn's disease, which, you know, that's incurable. So getting hit with that at that age, it was just instantly like, oh, what now? Like, what is my life gonna look like? What does this mean for me? I'm still so young. Like, what is the rest of my life gonna to look like?
- [10:12]
Lauren Bright Pacheco
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.
- [10:30]
Araceli Torres
I started reading about Crohn's and I read that it could be deadly, it could be just lifelong. 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.
- [10:46]
Lauren Bright Pacheco
Do you remember at that point what your biggest fears were?
- [10:51]
Jose Torres
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 in and out the doctor's offices. So, yeah, it was really my future more than anything.
- [11:10]
Lauren Bright Pacheco
Jose had been in and out of the hospital five times in Just a few months during that period, he lost 30 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.
- [11:29]
Jose Torres
They told me to keep a food diary and was just like, if you eat something that makes you not feel well, don't eat it again. And in my head that just didn't make any sense.
- [11:41]
Lauren Bright Pacheco
Now, on top of fearing urgency, you have to fear everything you're eating, pretty.
- [11:48]
Jose Torres
Much, because, yeah, there was no guidance. And in my head it was just like, all right, I'm going to write down what I eat in a day and if I don't feel well, a 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 had been prescribed a regimen of medications as well. At that time it got slightly better, but not manageable.
- [12:11]
Lauren Bright Pacheco
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?
- [12:23]
Jose Torres
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.
- [12:40]
Araceli Torres
So we had to do completely different. No skins, you know, bland, 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.
- [13:03]
Lauren Bright Pacheco
And that's a huge undertaking because suddenly you're having to second guess and think about everything that's going into his mouth.
- [13:13]
Araceli Torres
Yeah, it wasn't what I want to eat, it's what I have to eat.
- [13:18]
Lauren Bright Pacheco
The diagnosis offered only a guise of normalcy, a brief flashback to life before the symptoms began. But as the flare ups returned and grew more frequent, Jose and Araceli knew they needed to push for a second opinion.
- [13:33]
Araceli Torres
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 gastroenterology and we made an.
- [13:49]
Jose Torres
Appointment and they reran all the tests, ended the blood work all over again, and they actually came back with a different diagnosis of ulcerative colitis.
- [14:01]
Lauren Bright Pacheco
So what was that like for you? Somewhat relief?
- [14:08]
Jose Torres
It was because when I shared what I was being told from my Previous doctors, the current doctors that I'd 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 regimen of medications that actually did work, at least for a time.
- [14:40]
Lauren Bright Pacheco
Ulcerative 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 750,000 people in North America are affected by this disease. Both Crohn's disease and ulcerative colitis fall under the umbrella of inflammatory bowel disease. Jose's current gastroenterologist, Dr. Brian Bosworth, explains the difference between the two.
- [15:15]
Dr. Brian Bosworth
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 ulcerative colitis, it's really the surface level of the colonial. 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 bowel, but actually is throughout the entire wall of the bowel. That's more Crohn'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 compl.
- [16:09]
Lauren Bright Pacheco
So both would be diagnosed through a colonoscopy.
- [16:14]
Dr. Brian Bosworth
Crohn's disease and ulcerative 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, and 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.
- [16:44]
Lauren Bright Pacheco
That's so much for you to experience at such a young age.
- [16:48]
Jose Torres
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 seeing me continuously not get better and get worse over time. And yeah, it was difficult in terms.
- [17:14]
Lauren Bright Pacheco
Of the mental challenges that go hand in hand with ibd, particularly severe cases of ulcerative colitis. How, as a gastroenterologist 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.
- [17:40]
Dr. Brian Bosworth
You're so right. When they've done studies looking at quality of life, patients with Crohn's and ulcerative colitis have a lower quality of life index than cancer patients do.
- [17:51]
Lauren Bright Pacheco
Wow, that's unbelievable.
- [17:53]
Dr. Brian Bosworth
And part of that is just like you said, there's a shame aspect to it. It's not anything that they brought on on themselves, obviously, but what's the primary presenting problem? Well, it's running to the bathroom. And that can be embarrassing. And 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've also find that it's critically important to work with mental health professionals. So here at the NYU Length Inflammatory Bowel 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.
- [18:39]
Lauren Bright Pacheco
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 the or.
- [18:55]
Araceli Torres
He wasn't getting better and I thought I was going to lose him.
- [19:02]
Lauren Bright Pacheco
We'll be right back with Symptomatic A Medical Mystery podcast. Join me, Dr. Panico with Cyndi Lauper and chef Michelle Bernstein to talk about plaque psoriasis and psoriatic arthritis. The potential connection and risk of developing permanent joint damage.
- [19:20]
Cyndi Lauper
Cosentyx Secukinumab is prescribed for adults with moderate to severe plaque psoriasis dose and adults with active psoriatic arthritis 150mg dose. Don't use if you're allergic to Cosentyx before starting get checked for tb, serious allergic reactions, severe skin reactions that look like eczema, and an increased risk of infections. Some fatal have occurred. It may lower your ability to fight infections, so tell your doctor if you have an infection. Were symptoms like fevers, sweats, chills, muscle aches or cough? Had a vaccine or plan to? Or if IBD symptoms develop or worsen? Learn more at 1844cosentyx or cosentyx.com Cindy.
- [19:55]
Lauren Bright Pacheco
Now back to Symptomatic A Medical Mystery Podcast. Jose Torres, not even 21, 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 of ulcerative colitis, long term relief felt out of reach. So does life go back to normal for a period of time at this point?
- [20:40]
Jose Torres
For a period of time, for about a year. They did prescribe me a regimen 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.
- [21:25]
Lauren Bright Pacheco
Were you in denial initially when things, 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?
- [21:38]
Jose Torres
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 going to be feeling like this this week. And then the week turned into two weeks and it was just like, no, it's here we go again.
- [21:53]
Lauren Bright Pacheco
And then what happened?
- [21:55]
Jose Torres
Then I flared. So all of the symptoms came back full force. The fatigue, the blood, the pain. They had tried another kind of regimen of medications. They tried to increase dosages 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.
- [22:23]
Lauren Bright Pacheco
That's so much, Jose. Yeah, you must have just felt so overwhelmed with having to just fight through every day.
- [22:34]
Jose Torres
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. I dropped down to around £100.
- [22:54]
Araceli Torres
So we ran 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.
- [23:17]
Jose Torres
It was quite a battle. And yeah, I was pretty much experiencing everything you could possibly experience associated with colitis at that point.
- [23:27]
Lauren Bright Pacheco
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?
- [23:36]
Araceli Torres
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.
- [23:44]
Lauren Bright Pacheco
It must have been like a nightmare that you felt you couldn't wake up from.
- [23:48]
Araceli Torres
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.
- [23:59]
Lauren Bright Pacheco
Were you afraid for sure?
- [24:02]
Jose Torres
Because I was again, at £100 with that, with everything going on, like, it came back to that question of what now? Like, what could potentially happen here?
- [24:10]
Lauren Bright Pacheco
Jose, how long were you in the hospital?
- [24:13]
Jose Torres
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 new form of medication that's out that we can see if that works after a couple of of infusions or their surgery.
- [24:30]
Lauren Bright Pacheco
And by surgery, it means to take a huge chunk of your intestines.
- [24:35]
Jose Torres
The entire large intestine. The entire large intestine out. So again, at 19, me and my mom were sitting there, you know, having to make the decision, and, you know, we're like, let's try the medication because we're not going to opt into such a major surgery. So we did and that didn't work.
- [24:53]
Lauren Bright Pacheco
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.
- [25:16]
Jose Torres
Yeah, 100%. I mean, she took time off of work. The nights I had to stay in the hospital, she was There with me, even if she had to 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 diagnosis that she got that way? So, yeah, it definitely took a toll.
- [25:42]
Lauren Bright Pacheco
What did her being there for you mean to you?
- [25:46]
Jose Torres
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.
- [26:12]
Lauren Bright Pacheco
Desperate to avoid major surgery and the risk of irreparable damage to his intestines, Jose began a series of infantry infusions to reduce the colitis symptoms and hopefully improve his quality of life.
- [26:24]
Jose Torres
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.
- [26:35]
Lauren Bright Pacheco
Surgery is not even a choice. It's a necessity to save your life.
- [26:39]
Jose Torres
Yeah.
- [26:40]
Lauren Bright Pacheco
All right, walk me through the surgery.
- [26:44]
Jose Torres
Yeah. So the first surgery was a total colectomy. So again, removal of the entire large intestine. I'd been told going in, you're going to have an ostomy bag for a time, possibly forever. But at least the idea was for it to be for a time.
- [27:00]
Lauren Bright Pacheco
The colectomy was the first in what would be a three part surgery sequence, Creating an external bag to collect bodily waste. Dr. 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.
- [27:23]
Dr. Brian Bosworth
Most patients, when they have the J pouch 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?
- [27:49]
Jose Torres
I remember just feeling relief because Dr. Bosworth, even at that time, was extremely well regarded in the space.
- [27:57]
Lauren Bright Pacheco
Do you remember meeting Jose and his mother for the first time?
- [28:01]
Dr. Brian Bosworth
Very well. He now he comes to appointments without his mother present. But for the very beginning, she was right there by his side and every step of the way. And when we first met, we talked through what his course beforehand had been and what the decision to actually undergo surgery was and what that meant for somebody who was 18, 19, 20 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.
- [28:30]
Jose Torres
J pouch, the confidence in which that he spoke and even his rapport and bedside 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 just very approachable.
- [28:48]
Dr. Brian Bosworth
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.
- [29:41]
Lauren Bright Pacheco
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.
- [29:55]
Jose Torres
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.
- [30:18]
Dr. Brian Bosworth
Fairly shortly after surgery, he came in and was having some bleeding. And when you're a patient with ulcerative colitis who was diagnosed because you were bleeding, it evokes so much. And I'm going to say it, even though it wasn't formally diagnosed. 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 with 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? My colon's gone, but yet I'm still bleeding. And so we did a pouchoscopy, we looked, and in fact, his pouch did not have any inflammation.
- [31:00]
Lauren Bright Pacheco
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.
- [31:13]
Jose Torres
That third surgery was success. They were able to reverse the ostomy and the J pouch surgery in that three part sequence had been completed. But it was just such a relief to know that the ostomy 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 gland things or liquid diets and whatnot, literally just the little things I learned to appreciate and value more. And yeah, it just completely shifted my perspective.
- [31:48]
Lauren Bright Pacheco
Wow, 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 Crohn's and Colitis foundation, having started there as an intern and worked his way up.
- [32:29]
Jose Torres
There's a camp program for children that have Crohn's disease and ulcerative colitis that the foundation runs. 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 6, 7, oldest being, you know, 17, and these kids dealing with what I just went through and it's just like, geez, some of these kids have ostomy 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. And the kids are always so grateful to the counselors there. But you know, amongst us counselors, we 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, then why can't I? I'm sure they look at us in 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 10 years.
- [33:33]
Lauren Bright Pacheco
You must be so proud of how he's blossomed in spite of all of this.
- [33:40]
Araceli Torres
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.
- [34:04]
Lauren Bright Pacheco
So if your health struggles depleted you after getting diagnosed, involving yourself in that community was what replenished you 100%.
- [34:15]
Jose Torres
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 Crohn's and Colitis 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 support myself and live the life that I want to live and help my family, however I can help them and be there. So, like, 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.
- [34:59]
Dr. Brian Bosworth
His ability to give hope, his ability to counsel and celebrate the wins for other patients, being able to look back and reflect on 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, making an impact. And I know he's making a real impact both in other patients and for himself too.
- [35:21]
Lauren Bright Pacheco
In what ways do you think watching him box did help you?
- [35:26]
Araceli Torres
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.
- [35:45]
Lauren Bright Pacheco
What do you want people listening to? Take from your story.
- [35:49]
Jose Torres
Always have faith and hope. This is going to sound super cliche, but an attitude of gratitude goes a really long way to 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 respect, resources and support. Like, never be too proud to do that and just do what you can and just never give up hope. There could be a way where you could change your situation.
- [36:17]
Lauren Bright Pacheco
You can find out more about both Crohn's and Colitis at the Crohn's and Colitis foundation website@crohn's colitisfoundation.org where you might also come across some of Jose's work.
- [36:33]
Jose Torres
My name is Jose Torres. It took me about a year to get my proper diagnosis of ulcerative colitis and three surgeries later and over a decade now I'm fortunate enough to have no symptoms and be living a normal life.
- [36:51]
Lauren Bright Pacheco
On next week's episode of Symptomatic, Kelly dubois 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 happened. Do you know your name, do you know what year it is? And do you know who's the president? And I struggled to just speak. But when brains 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 and 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 Bright Pacheco. Executive producers are Matt Romano and myself. Our EP of post production is James Foster, our supervising producer is Ciara Kaiser, our writers are John Irwin and Diana Davis and our editor is Ciara spring. Join me Dr. Panico with Cyndi Lauper and chef Michelle Bernstein to talk about plaque psoriasis and psoriatic arthritis. The potential connection and risk of developing permanent joint damage.
- [38:31]
Cyndi Lauper
Cosentyx Secukinumab is prescribed for adults with moderate to severe plaque psoriasis 300 milligram dose and adults with active psoriatic arthritis 150 milligrams. Don't use if you're allergic to Gosentyx before starting get checked for tb, serious allergic reactions, severe skin reactions that look like eczema and an increased risk of infections some fatal have occurred. It may lower your ability to fight infections, so tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches or cough. Had a vaccine or plan to or if IBD symptoms develop or worsen. Learn more at 1844cosentyx or cosentyx.com Cindy.