Bowel Moments

Jose T- From Boxing Dreams To IBD Advocacy

• Alicia Barron and Robin Kingham • Season 1 • Episode 146

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A boxer in training. A terrifying spiral of symptoms. A life-saving surgery that changed everything. Jose Torres joins us to share how ulcerative colitis pulled him out of the ring and propelled him into purpose—building community, advancing equity, and living well with a J‑pouch in a city that isn’t designed for urgent needs.

We trace Jose’s path from misdiagnosis in Brooklyn to specialized care in Manhattan and the brutal logistics of public transit without bathrooms. He opens up about the cultural currents in his Mexican and Puerto Rican family—why speaking up took time, why steroids raised tough questions, and how food traditions collided with new IBD realities. The story turns on resilience: a colectomy and J‑pouch, early pouchitis, iron infusions, and then a decade of medication-free stability supported by smart nutrition, consistent exercise, and honest attention to mental health.

Jose also brings us inside the Crohn’s & Colitis Foundation—from literally ringing the office doorbell to roles in advancement, business development, and DEI leadership. We talk about real lived experience, research into disparities, and why culturally fluent care changes outcomes. Along the way, he shares practical tactics for managing frequency, a nudge toward pelvic floor physical therapy, and a grounded philosophy: don’t chase perfection, cultivate accountability and hope.

If stories of grit, culture, and community help you feel less alone with IBD, this one’s for you. Cheers!

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SPEAKER_03:

Hi, I'm Alicia, and I'm a Rumbloment, and you're listening to Mumble Moments.

SPEAKER_01:

The podcast sharing real talk about the realities of my TV. This week we talked to Jose Torres. Jose lives in New York City, has also done Kaleitis and a J pouch. We talked to him about what it's like navigating his health care in a big city with public transportation and a distinct lack of bathrooms along the way. We talked to him about his Mexican and Puerto Rican heritage and how that influenced and affected his family's response to his disease. We talked to him about what it's been like to work for the Crohn's and Kaleitis Foundation and how he changed his career to better support his passion in helping other people living with these diseases. And we talked to him about his almost career in boxing and how he got involved in that. We know you'll enjoy getting to know Jose just as much as we did. Cheers.

SPEAKER_03:

Hi, everybody. Welcome to Battle Moments. This is Robin.

SPEAKER_02:

Hey everybody, this is Alicia, and we are really excited to be joined by Jose Torres. Jose, welcome to the show.

SPEAKER_00:

Thank you guys so much for having me. Really appreciate it.

SPEAKER_02:

We have been trying to get you on for a while, so we are excited to hear your story and to get a chance to talk to you. First unprofessional question for you is what are you drinking?

SPEAKER_00:

I'm boring today and just have simple water because I just logged off of work not too long ago, so I haven't had time to make myself anything else. But I typically do put like a little bit of lemon and honey in my water to mix things up a little bit.

SPEAKER_02:

We've had a string of water lately, so that seems to be the norm. Which good job, guys. Way to hydrate. So and I'll continue to aspire. Robin, what about you?

SPEAKER_03:

Logan, my daughter Logan was just visiting, and she left these protein coffees in the fridge. And Alicia just made the most awful face. And this is accurate. It is not delicious. But I'm gonna drink it, but it is not delicious. And I always have water. And now I'm wishing I had a little lemon and honey in it because of what you just said. What are you drinking, Alicia?

SPEAKER_02:

I'm gonna explain to everybody that you may hear some background noise. I happen to be in an airport lounge, and so you're gonna maybe hear some conversations. Apologies, but that does mean that somebody brought me a lovely glass of some young water, and so I can't fault the fact that I get a chance to drink wine while I'm talking to both of you, and very excited to hear how they're sorry, so I'm gonna take cheers.

SPEAKER_00:

It's bad luck to choose with water, so I'm gonna exclude yourself from that.

SPEAKER_03:

I didn't know that. I just thought it was bad luck not to drink if you cheers.

SPEAKER_00:

Oh no. I recently learned this myself.

SPEAKER_03:

I'm gonna have to look this up and make a post of this because we drink water. We drink water on the show all the time. Like a lot of guests drink water.

SPEAKER_02:

Yeah. Oh no. I feel I hope they're okay. We haven't heard from them since then.

SPEAKER_03:

I know. I'm gonna fact check that.

SPEAKER_02:

Well, fingers crossed that everybody's fine. And so we will we will let you abstain from the tears. Next question for you, Jose. Please tell us your IVD story. What brought you into our community?

SPEAKER_00:

So I am a patient. I have ulcerative colitis, but the journey there was was quite long. I actually first started having symptoms um when I was around 18 years old, freshman in college, an athlete at the time. I was training uh as a boxer, getting ready for the Golden Gloves tournament, which for those of you who don't know is a really big amateur um boxing tournament here in New York City. So the plan was I had already been practicing and training for a long time, but I was going to start training to compete. And out of nowhere, you know, symptoms started. It started with a little bit of blood in the stool, which I just thought was nothing and would go away. And over months it evolved into debilitating cramps and pain to the point where I couldn't train anymore. I was too exhausted and too tired. And it was even difficult to get out of bed and go to school. I was also working part-time retail job. So my day pretty much looked like waking up early, going to class, going to train, and then going to work until 12, 1 a.m. going home and doing it all over again. So eventually that took a toll. And I just didn't say anything. And I think that's also very cultural, just coming up in a Latino household. We don't tend to say when we're feeling things, unless it's literally time to go to the ER. But, you know, I was living with my mom at the time and she kind of noticed that wasn't my usual energetic self. Obviously, she knew I dropped off with the boxing training, not going as often. So it was one day I literally couldn't get out of bed. So she was like, No, we need to get you checked at this point. So we went to local hospital in Brooklyn. They ran multiple tests, told me to keep a food diary, which even at that time, because I was just very health conscious being an athlete already, made zero sense for a doctor to tell me, well, write it down. If you end up back here, don't need it again. Cool, but how am I gonna know exactly what landed me here in the first place? So we just really weren't satisfied with the care. Uh I was initially diagnosed with Crohn's disease and nothing was really changing. I was in and out of the hospital, started doing my own research on things, really found the role nutrition could and should potentially play at the time. Remember, this was years ago, probably 16, 17 years ago at this time. So the level of education and knowledge, particularly around diet nutrition, just wasn't there in diabetes space at the time. So eventually we found a specialist in Manhattan that we went to, which again, New York City, public transportation, flaring, you know, you guys could fill in the blanks because taking a cab round trip would have been$200 every time we had to go to the, you know, hospital or to just see my GI in Manhattan. Just didn't have those resources to do that. But we found a great doctor who redid the test and properly diagnosed me with ulcerative colitis. With that, was put on a regimen of medications, remission for a year. And after that year, I had a flare that didn't go away. It got so severe, I had a drop out of college at the time. So I had to take that semester off because of that. At that point, the boxing was just completely done. And yeah, I dropped down to around 100 pounds. I had a uh what's it called, the pick line for nutrition. The only biologics on the market at the time were Humera and Remicaid. And I believe only Remicaid was cleared for use in ulcerative colitis. So I pretty much had a decision to make whether it was like surgery or we try this last medication. And, you know, being that young, I wasn't trying to jump to getting an entire organ removed because the surgery would have been, you know, a full colectomy. So we tried the Remicaid and that didn't work. And the surgeons were essentially like, we need you to hang on for like at least another week or so because they didn't want to do the surgery because I was already in such bad shape nutritionally with my weight loss and just all the complications you could possibly imagine. So I had to remain in the hospital for that period of time and they did the J Pout surgery, which I know is typically done in two operations, but mine they had to spread across three over a period of nine months because I was in such bad shape for that initial one. They didn't want to extend the time of that first surgery. So yeah, so I had that first surgery, full colectomy, woke up with an ostomy bag, had the second surgery six months after, and then the final surgery was three months after that, with the final surgery being the reversal, which luckily I had healed well enough for them to be able to do the full reversal. And since then, I've I've had a J Pouch ever since. Very fortunate to say I've been medication free for the last 10 years or so managing with the with the J Pouch. And yeah, and through this journey, I discovered the Chromebookitis Foundation, which ironically was only several blocks away from my school that I went to at the time. So I don't know if you guys have ever heard the stories. I know I've worked with you both before. But one day when I was feeling well enough, I kind of just went to the foundation's office. I quit my retail job because while I was going through all this, I was still trying to do that, but I had to quit that. So I just went to the foundation, I rang the bell, and I'll never forget it was the national office. Someone answered the door, and I was like, Hey, I'm a patient. I found you guys, it looked great. How can I get involved? Can I like volunteer? Part-time job, internship, like whatever. So they were like, We don't need any help here. But the New York chapter is two floors down, they need help. So I went, went down, rang that bell, and they were like, When when can you get started? Because they were extremely like shorthanded. And that's how I started, you know, with the foundation as well. Was um, you know, and then I started my internships there, and the rest is you know, kind of history. I know we'll get into that in a little bit, but yeah. So yeah, that was my introduction to the to the IBD community.

SPEAKER_03:

I do remember baby Jose as an intern. I do. I I do that. Yes, I do. I do not rem know that that's how you got started with the foundation, but I do remember emails from Jose's intern. Yes.

SPEAKER_02:

I love that you just sort of walked in and they're like, Yes, please, when can you start? That's that doesn't happen nowadays, I would imagine, unfortunately.

SPEAKER_00:

I don't imagine a lot of people just straight up go and ring the belt places either. So it was just you know a combination of just luck and at the time they needed the help. And I wanted to take a look at the case.

SPEAKER_02:

It was the Kismet, is that what that's called? I know when we were talking to Tina, but there was definitely some cultural implications for her as it related to her treatment choices and surgeries, and and you know, how she talks about how the family is so involved in any decisions and about how you know doctors really need to pay attention to that with that particular South Asian community. What was that like for your family? What is it like for the Latino community of two white girls? And then, you know, we're gonna say we don't know about this. That's number one. And then a little bit about just managing your JPodge, too. Because I mean, like the way you said it makes it sound like everything was just like, and then it was done and smooth sailing. And I know that probably wasn't the way it goes, based on what I hear Robin and Stacey talk about with their J Podges. So if you wouldn't mind talking about kind of the two pieces, obviously those are two entirely different questions. So start with whichever one you'd like.

SPEAKER_00:

Yeah, no, absolutely. Um, the cultural question is really important. Thank you for even for asking that uh deeper. I mean, yeah, the first thing again is it took me so long to say I was feeling bad. And that is very cultural of a Latino household. And again, like we we're taught not to complain, you know, don't cry, like kind of all of those things. So just being that embedded in me, I was just like, oh, this is a stomach bug, I'll fight it off, you know, it'll go away. And it got to that point where, you know, maybe had I seeked help sooner, maybe the trajectory would have been different. But that was definitely one aspect of it. When it did come to the treatment, again, also, you know, culturally, we're hesitant and very resistant to taking strong medications. So when I was prescribed prednisone with, you know, the steroid for the first time, we had a lot of questions there. It was like, is this absolutely necessary? Is there any alternative? Like, you know, just to make sure that was necessary and it wasn't just one of these things where a doctor is just like, here, take this pill, make you feel better. Because again, that's just something we're very skeptical of. And just if we don't have to take medication, we'd rather not. But this was obviously not one of those scenarios. But there was a lot of questions and hesitancy and concern around that. You know, my mother was reading the all the fine print on all the possible side effects and like, you know, everything. So that was that was a layer of food while I was sick was also tricky because a lot of food across, you know, different cultures and whatnot aren't necessarily IVD friendly per se. So that was also difficult. Uh, and we try to navigate that again at that time on our own, knowing that food was important and how to do that. And me being the health-oriented person I was at that time too, just being an athlete, you know, being told you can't eat, you know, raw fruits and vegetables and these things that for me were like staples, like, you know, trying to figure that out. So the the diet, the eating was definitely another part. There was quite a bit of guilt too, mainly, I think, from my my my mother or weighed that very heavily because we don't know where it came from. So that was questioned. It was like there was no family history of this. Why did this happen? Is it something you know she did at a very, very difficult childhood? So looking at that, and even there's studies out now that say, like, you know, early stress could be a you know indicator of all that stuff. So it was just a lot of, you know, guilt. But she was by my side every step of the way. Like she would sleep on a cot next to my hospital bed on the nights that I was there. You know, my my grandfather, who my grandparents raised me for the most part, my grandmother would not come to the hospital because she just cannot bear to see me in that condition. So my but my grandfather would come and take care of me and make sure I was good, like with the bathroom stuff. He would come to the bathroom with me in the hospital and, you know, make sure I was able to do all the stuff. You know, my aunt and little cousins would come. So it was very, you know, the family kind of rallied, you know, behind it. But there were a lot of questions, a lot of concerns, a lot of what ifs, a lot of, you know, why, how, you know, when. But yeah, so it was it was difficult. But at the same time, it was the reinforcement of the family unit, especially with my mom. Cause you know, growing up, my grandparents raised me. She was kind of present, not present, kind of like on and off. And it was, it was actually that journey that brought me closer to my mom. Because that was the first time where I was just like, all right, like you, you are mom, like you are my mother, like you're here in this time that I need you the most, and you're you're here fighting this fight with me. And yeah, there was a lot of you know things there, but it was mainly around the medication, the food, and the just the questioning of the medical system, especially after being not diagnosed properly and you know, that disparity of care because of where we were in Brooklyn, right? Like that hospital was clearly not equipped, and that's a problem across the country we see with a lot of chronic diseases, where depending on where you live, you're not going to receive the same quality of care. So that's definitely something I faced, you know, just because of the community I was grew up in and I lived in. I didn't have readily available access to the best possible quality of care. I had to, you know, go to another borough to to get that, to get me in in better shape. But yeah, I mean, I'll that's you know, cultural-wise, if there's any other, you know, questions or anything from what I've said, happy to dive into anything deeper.

SPEAKER_03:

I just wanted to reiterate, you were in Brooklyn and you went to a hospital, and you still I think people in other parts of the country think, oh, well, he's in New York. Like, there's the best hospitals in the world in New York City. And so Yes, that is true. And also ease of access isn't necessarily there, even if you are in a large city. So we understand this, like very familiar with the medical industry and how that works, but I just feel like other people think that if it's only if I was in this better place or this bigger city or this whatever might have better access, and that's not necessarily true, even if you are in the cities. I mean, yeah, even when I drove to Houston to get better care, I still there was still left there, right?

SPEAKER_02:

So I think that's an important point, Robin. And that's you know, to highlight that even you can be in the one of the best cities for medicine ever and still it's not accessible to you because of something like public transportation. So yeah, and okay, I have a very random, hopefully fast answered questions of is is there are there public toilets and like the the train stations and the public, the subway stations?

SPEAKER_00:

There's there's not. So I was gonna that's what I was gonna comment on Robin's comment of people thinking you're in a big city. Yeah, for those not in New York and not familiar, New York City is much larger than most people think who haven't been there. Like each borough alone is probably the equivalent of a city in any other state. So just for context, where I lived in Brooklyn compared to the hospital that in Manhattan where I was getting care, that was an hour long on the train one way, to your point, without access to a restroom, because there are no restrooms in the subway stations. So yeah, that was extremely difficult. Like honestly, if there were restrooms in the subways, I wouldn't touch them anyway.

SPEAKER_02:

I mean, that's there. I did, but yeah, my friend went into a public toilet in the subway station in Beijing and she immediately walked out and was like, Nope, not doing that. It just seems strange to me. It seems like that would be something where they would have to have something just because, but I guess there's the yeah, wrong lens. Okay, and I'm gonna come back to the question about JPouch. Put that one back on the shelf for a second. Yep. Am I correct in recollecting this that you are involved with the Latino virtual support group? Or am I not remembering that correctly?

SPEAKER_00:

No, not the support group. I am involved with our employee resource group within the foundation. Okay, and I serve as you know, some a leadership role with the with that, with like the internal employee resource groups and diversity, equity, inclusion efforts within the foundation. Cool.

SPEAKER_02:

Okay. Maybe talk a little bit more about that one as it relates to, I mean, because there are a lot of employees at the Grunt and Glide Foundation that either are personally affected themselves and or have a family member. So in being involved in that, what changes have you seen at the foundation because of having people really informing that lens and helping to really shape how the foundation should be responding to these different communities?

SPEAKER_00:

Yeah, no, I definitely have have seen a change in in not just saying this, it's it's been genuine. I know even before 2020, there were plans to do more in that space. 2020 just kind of accelerated everything. But yeah, I mean, even just the fact that there's really investment from the top in these employee resource groups. Like this is a strategic effort. It's a priority for the organization to make sure we have these spaces for employees of diverse backgrounds to feel comfortable and heard and seen. So, yeah, I mean, that's you know, we hold what we call conversation corners every month that usually align with some kind of uh commemoration or or cultural acknowledgement, such as Black History Month or, you know, Pride Month or Hispanic Latino Heritage Month. And we've gotten to a place where those have become very real conversations about those people's experiences within their community. And where we can, we tie it back to our mission and you know, IBD, but that's not really the focus of it. That's like if it fits, great. But the focus is really to share real stories, real challenges, and celebration as well, to grow that empathy, to kind of break down those barriers that we see in society, right? But within the foundation, which is a beautiful thing. And then externally, I know the the foundation continues to do work and and research to understand the disparities of care, to understand these different factors so that we could better serve the communities and awareness of familiarity is just a huge issue alone, you know, within you know, culturally diverse communities. But yeah, I it's been really nice to see it again, not being done as a check mark like some other organizations may do and be like, we're doing this thing just to say we do it. And it's very surface level. The foundation is really putting meaning and substance behind the work in that space, which is why I'm a part of it, to be to be completely honest. Because if I felt like it was a check mark, I wouldn't be involved.

SPEAKER_02:

I'd love to hear that because I think there has just been so much more recognition, and especially as some other groups started to evolve that focus a little more specifically on certain groups, it's really lovely to see the foundation figuring out how they can make sure that they're being culturally sensitive and changing. Because, you know, as a white person that worked at the Clinton Claire Foundation, it's got a lot of white people. And so I think it's really important that they're sort of saying how do we make sure that we're not losing perspective and that we're making sure that we're being responsive to the needs of the entire IVD community. And then also, you know, maybe how can we be working with some of these other groups that are starting to, you know, find their place within the community as well. Robin said she got an email from Baby Intern Jose. So how has your job evolved? Because I came later and so I did not know you as baby intern jose. So tell us how your job has evolved in the foundation and why. Like, why did you choose to move in the way you did?

SPEAKER_00:

So before I get into that, my educational background, I initially started going to school as a finance major. After my experience, like I wanted to be a financial advisor. That was kind of my thing for no other reason than the salary, right? It's pretty much like you go to school, be a lawyer, be a doctor, be a you know, Wall Street guy, like whatever. So I was three classes away from finishing the degree by the time I had had this IBD journey and I did a complete 360. My minor at the time was in corporate communications. So I switched that to my major and I minored in sociology. And really, my experience with the foundation and a sociology professor, which I will never forget, who like really showed how the world worked and did like real case studies to the point where I remember handing my final and I was like, you probably shouldn't be teaching this at a business school, but thank you, because now I want nothing to do with the business that perpetuates all the horrible things in the world. But anyway, that led me to the nonprofit. So when Baby Jose rang that bell and was very graciously accepted in the New York chapter as an intern, I started helping with their take steps walk. I used to go out and put flyers in any store that would take them. I would help with basic data entry Excel sheet stuff. That eventually turned into helping out with, you know, special events, again, more organization admin support type work, which evolved into my first paid opportunity because I was an intern so long ago, interns didn't have to be paid. So my first paid opportunity was camp admin, which I'm locking my camp oasis fleece right now. And I'll never forget processing those applications and just reading these kids' stories. And I remember I asked the camp director, does my job get to go to camp? And they were like, No one's ever asked that question before. Let me find out. So they were like, not technically, but you can go as a volunteer. So I was like, all right, great. Like, where's the application? So I actually started volunteering. And it was up until the last two summers were the first two summers in the last decade that I did not was not a volunteer of Camp Oasis. So that became a very just key part of my life and my part of the IBD community and people that I've met through there. But yeah, so that was that. And I remember graduation time was coming up. I also helped the team challenge to kind of saying flyers, the admin. So pretty much any chapter event I supported at an administrator level. So I really got to learn from the ground up how the foundation operated. I also interned a bit at the national office in both the finance and HR department. Finance, because that was an interest, and I was just like, you know, figure it out. So I used to do chapter bank reconciliations. And then HR was just another opportunity where I can learn. So I was, you know, just learned a little bit there. And then I was graduating college finally, and I'll never forget, I won't name her, but if she hears this, she knows who she is, was very much advocating for me to be hired full-time. And there was just not a position open. But there's another person who is my mentor and very, very dear friend who was the team challenge manager at that time who had left about maybe six to eight months before I had graduated to another organization. She actually reached out to me with the open position at Serious Fun Children's Network before I'd even graduated. And I will never, ever, ever be able to thank that woman enough because she is well connected. She has a great network. And I always ask, why did you give me the opportunity interview for that? Because I was just this rough around the edges kid from Brooklyn and you know, just learning about all of these things. So that led to me going to work there for a few years, kind of supporting their camps, which was great because I loved Camp Oasis. So serious fun is like Camp Oasis all over the world. So it was a great experience. I learned a lot about CRM management there, fundraising. I did front-end fundraising. I managed the peer-to-peer team for like small, you know, walks and things like that. And I also did a lot of operational, you know, CRM finance. It was very diverse role, which was great because it just added to everything else that I had learned. So I was there for a bit. Then my mentor left to a smaller veterinary startup organization, which she brought me there with her. So that was great because I got to learn to see like what it was developing a development department from the ground up because they didn't have one. So my mentor was recruited to like start up their fundraising efforts. And she brought me on to kind of support that and build out the operational piece of it. So with that, it was like building out websites, you know, creating policy, procedure, CRM implementation, kind of all of that. And then it got to a point where I kind of felt like I did all I could do there. And, you know, I was looking for what's next in my career. So of course I circled back to the Crumbs of Kaleitus Foundation. There was a position open in their advancement department, which works with major individual donors and foundations. Uh, so I applied, I interviewed, and I got that. That was great. I worked with them for about four, four years, I think. And then I was poached away by a global consulting firm, CCS. They're a global nonprofit consulting firm. So I went with them because that was kind of like that, it was a very difficult decision, but it was one of those offers that that point in my career that I couldn't say no to. And the foundation was super understanding and supportive. So they were like, Yeah, like do your thing. And if you're ever willing to come back, and there's a position open, you know, we could discuss. So I went and I did that. And that was that was a very fulfilling project because it was essentially directing a feasibility study for Texas Children's Hospital and their Global Health Initiative, which focused on pediatric and maternal care and programs in Latin America and Africa. And that project helped break my imposter syndrome because I was in a room with experts that wanted to value what I had to say. So that was the first time where I was like, okay, like I belong here, like I belong in this space. It was just a great experience. I grew so much in that year with them. And then a position opened up back with the foundation in 2020 with their business development team. So leadership from the foundation reached out. You know, I agreed, we had that conversation, and I came back. Ironically, the week before the world shutdown was my first week back at the foundation. And I've been on their business development team, you know, for the last five years, you know, ever since. So that's kind of like the long and short of, you know, my career trajectory and how it's evolved. But it's been great. I've been able to learn so many different skills and, you know, utilize things in different ways. And yeah, I really, really enjoy my role now, you know, currently. And even that, I've been able to evolve it, you know, over the last five years and continue to grow in my career. So yeah, it's it's been it's been great. And I'm just super fortunate for the advocates that I've had throughout my career that have helped mentor me and kind of helped put me in these positions for me to showcase myself and kind of get to where I'm at.

SPEAKER_02:

Fascinating. Robin, anything else you want to talk about here?

SPEAKER_03:

J Pouch.

SPEAKER_00:

Yeah. So the the JPouch journey, it was it was interesting, especially when I had the ostomy for about nine months, you know, in between surgeries. I remember being on the train, like covering myself, even though the doctors were like, There's athletes that play with this thing, like you're fine. It's just that mental thing of I literally have a piece of my organ hanging out of my body. Oh, gotta protect it. But yeah, so that that was a lot of learning how to maintain it, how to care for it. You know, being in college too, just the the mental aspect of it, you know, definitely didn't go out with friends as often. Just like your normal college experience, that was a pretty difficult time. And I know it's better known now, but just the overlap of mental health, you know, issues diagnosed or not with IBD patients, I think is although it's more like that conversation is being had, I still think it's extremely understated the impact that this disease has in various phases of the disease, right? Like whether you have an ostomy, whether it's a J pouch, whether you're flaring, whether you're on medications, like all of these things impact patients in ways where you know it definitely does affect your daily life. And you have to create your kind of own sense of normalcy with that. So that was definitely the journey while I had the ostomy bag for sure. Post ostomy, I was ready to go. I was just like, when can I work out again? When can I? Because I was used to being this athlete, and again, this is post-surgery. I'm still 100 and something pounds. Like I'm still ways away from you know physically where I was. So they were like, no, you know, take it easy. We'll we'll give you the clear. I started asking a lot of questions around again, diet nutrition. And I just started putting things together myself. Like it was just like, all right, I can't eat kale or spinach, but I could juice it, right? Like it's the roughage that makes it not recommended, which I know is now a thing that is being spoken about. I forgot what they're calling it, like the form change or something like that. But yeah, finding ways to incorporate those healthy habits back because that's what made me feel good. Like I was always, you know, I was boxing and I couldn't do that anymore. But still, physical fitness and health was extremely important. And now it's it had that added layer of, well, now it's super important because I have this disease, right? So when they were when they were able to reverse it, I did pretty well for a while. I had two cases of pouch itis in the first six months of it, which was not fun, but at least there's an antibiotic for that. So that was that was fine. I had to go regularly for iron infusions uh for about like the first year after my J pouch surgery, until again I figured out a better diet to the point where it was just like your iron is kind of high. And then I looked at everything and I was eating, and it was just like, you know, quinoa and beans and these other things. I'm like, oh yeah, the iron content is really high in this stuff. I could probably like cut back on it. But it was great because I didn't need the infusions anymore. And yeah, just finding little things, even like the lemon butter, you know, with with honey, like there's health benefits just putting lemon in your butter, like occasionally. So there's just these things that I found that that worked for me that led to me being medication free. And it was just really managing it through diet, nutrition, and being active. Like again, I don't think a lot of people know the effect that exercise has on the immune system, right? Like that literally strengthens your immune system when you're physically active. And yeah, I just went on this like nutrition binge of like watching these documentaries on diet and health and you know, kind of how the body, if it's if it has the nutrients, it's it's biologically designed to like heal and like protect itself and do better. So I just like just really learned all of these things and then I I felt it working for me. So I I stayed the course. I mean, currently, luckily, the only thing I deal with is just frequency, which depending on what I eat, you know, could be, you know, more often than not. I don't sleep through a night, it's very, very rare. So that that is another thing because typically I'll get up at least once, you know, at night to use the restroom. It's most often like two or three times. So I like to just say I'm like always tired, it's just my normal. So that I don't feel Tired because this is just this is just what it is for me. But you still find the energy to do all the things that people need to do, you know, in their lives. But yeah, I've just been, you know, again, just very fortunate and I definitely don't take for granted because I know the reaction you guys gave, and I'm like, I haven't been on medication for 10 years, even with a J pouch. Friends through that I met through camp that have a J pouch and they're still on some kind of medication or they have like frequent pouchitis and like all these other, all these other things. And yeah, I'm just grateful. You know, my GI team is is fantastic. I mean, I I can't complain, and I'm I'm I definitely know I'm the exception, not the rule, but I'm grateful. And if anything, it's just like if I can do it, others can. Like if you have a J Pouch and you find what works for you and and manage it right, it's just everything is so individualized. Like what works for me may not work for you, which is the difficult part, even with diet nutrition, right? Which is why a dietitian and nutritionist is super important, but those are very seldom covered by insurance. And that's a whole other access to care thing that we can have a whole nother hour-long conversation about. But it's it's really important part of it. But yeah, I mean, that's my experience has been all things considered really great with the J Pouch. And I'm super grateful that that it was a treatment option for me, even though in my case it was literally emergency surgery. It was just like, if we don't do this, you're you're gonna die. Like I wouldn't be here today, literally, if I, you know, the J pouch wasn't an option since the rummage key didn't work and I was in such bad shape. So I definitely don't take that for granted any day of the week.

SPEAKER_03:

Okay, I am curious about the two or three times a night because I wonder if your doctors have ever told you to get pelvic floor physical therapy. And the reason that I ask that I asked this is because personally I have found that when I'm in seasons of like going to the bathroom a lot, like having flavor or just had TBO when I was going to the bathroom seven times a night. It was ridiculous getting ridiculous. I found that like now, even though I'm like six months out from antibiotics and not having to worry about it, I'm still going to the bathroom often. And I almost feel like my body got in the habit of going to the bathroom. And so as soon as I finish this next work trip, I'm going back to pelvic floor physical therapy to kind of help my body relearn how to hold it. So I'm very interested if that would help you because I feel like you're with athlete, with working out with all that, there's muscle memory. And I feel like it works in the opposite way for us going to the bathroom so often. Like our body is just like, we go to the bathroom this often. That's what we do, that's how we get through the night. But I'm guessing the way that you said that it's interesting, no one's ever talked to you about pelvic floor physical therapy.

SPEAKER_00:

No, when I brought that up, it's just like, well, you can take a modium. And I'm like, nah, going back to the not taking medicine. So yeah, but no, I'm definitely gonna look into that. I did not know that was a thing.

SPEAKER_02:

Yes. So go back and find the episode with Claire Hamnet. Claire is the pelvic floor physical therapist, and we talked to her a lot about working with men and physic and pelvic floor physical therapy. And you might take something from it because I yeah, Rob, what Robin is talking about might it's sort of resonates with me as a non-medical provider.

SPEAKER_03:

No scientific background except for that. We've interviewed pelvic floor physical therapists, and I have gotten pelvic floor physical therapy myself because of my details, right? Because of the surgeries that I've had. When you have surgery like we have in the pelvic area, it's gonna affect those muscles. I mean, when you're working on your exercise and you're building up your core, that it doesn't necessarily always get deep enough to do your pelvic floor. So it might help you. You might get down to one time a night. And then the other question in a completely different direction about the JPEG is 10 years. Have you gotten to a point where you're like, okay, this is it now? Like I'm in remission. Or I don't know, for myself, I feel like I haven't had a really long remission for 25 years. And so, like, even now, someone asked me yesterday, how are you feeling? And I'm like, I'm feeling good. I don't even want to say I'm feeling great because like if I say that, then when's the next active disease gonna come? When am I gonna get intestinal bacterial overgrowth again, which is gonna make me think I'm in a flair, but it's you know, it's not actually disease or so. I just I guess I'm looking for a little bit of hope. Have you gotten to the point where you can say, like, I feel good, I've been in remission for 10 years and not have that little like devil on your shoulder saying, uh-uh-uh, if that makes sense.

SPEAKER_00:

Yeah, 100%. Yes, but I will never use the word great, right? Like for me to say I feel great, like things need to be exceptionally, like astronomically in a whole nother stratosphere of like of good, right? So the highest I'll ever go is like I I do feel good, but I always follow that with I'm grateful for it, because I know it's not everyone's I do honestly believe this was long term. And honestly, even when I was going through the diagnosis and the surgeries or whatever, my mom would always be like, even to this day, she's like, Are you sure you can do that? You're sick, like da-da-da. Like, you know, I see her once a week, we have dinner. She's like, Are you sure you can eat corn? I'm like, I'm I'm good. But you know, to that end, even when I was going through that, in my head, I kept telling myself, I am not sick, right? Because I couldn't allow myself, and it was definitely a defense mechanism, but I couldn't allow myself to even admit that to myself at that time because I felt like that would have brought me down and I wouldn't have had hope like going through all that. So similarly, like in this, in this sense, there 100% is is hope. And I I strongly believe that it the tricky part is the person finding what gets them there. Right. That's that's the difficult part, but it's it's possible. But yeah, I always say, yeah, good. I do believe this is a long-term thing as long as I do my part, which is another thing. Like patients definitely need to hold themselves accountable. I know that's really hard, especially like telling someone with a chronic disease, like, hold yourself accountable for your actions too. Because I have friends that again camp, there's an ongoing camp chat, and it's almost like a medical advisory board if you look at it, because it's like, hey, I have this thing, anybody else, da-da-da. And it's just like, bro, you were just posting that you was having pizza and beer all weekend and now you're feeling sick. Like, would yeah, you're gonna feel sick. You know what I mean? So it's holding yourself accountable, making the healthy lifestyle choices that work for you that help you feel good and being consistent with it. Um, but yeah, again, I do say it, but I always say it with gratitude because to your point, Robin, like I don't know if next week I'll have pouchitis or flare up or at some point have to have an ostomy permanently, because that's also a very real reality for JPouch patients, right? You know, I get those screenings, but you know, those for you who don't know, the JPouch is a full colectomy, but they do purposely leave about one to two centimeters of the colon still there for them to make that connection. There's still a chance of colon cancer with that, which is part of the pouchoscopy screening. So I don't think about these things, but in the back of my mind, it's just like I've already experienced what it was just like to literally almost not be here. So the fact that I am here and I'm doing well, it's that helps me keep myself accountable to do the things that I know I need to do to keep myself healthy and good, but it also helps me, you know, have this attitude of gratitude every day. Because to your point, Robin, while I do feel good and I do feel like this is long term, you really don't know. So yeah, just gotta make the most of it when you are feeling good. And hopefully that creates a domino effect.

SPEAKER_03:

I do agree with you because I feel like for the longest time, even when something was wrong, no one would have ever known it. And it's not because I was hiding, it was for my own personal, like this is how I'm gonna get through the day. Like, yes, I have this, but I'm still gonna conduct my life like nothing is wrong. Right. And so even like with this show, sometimes I have to say, okay, I can't share my stuff anymore because it's starting to mess here. Like, I need to keep this positive outlook, I need to be hopeful, I need to look on the bright side, see the silver line. Like any cliche that you can think of, like I had to be positive and do what I could do to keep going and never say I'm great too. That's that that stood up with me. And also don't disparage pizza. That's one of my safe foods.

SPEAKER_00:

Listen, when I'm feeling it, I can kill a whole pie of pizza on my own.

SPEAKER_03:

But it's one of those like if I'm not feeling well, if I'm not feeling well, I will eat pizza.

SPEAKER_00:

So that's but that works for you.

SPEAKER_03:

Yeah, that yeah. So just saying, you know.

SPEAKER_02:

So you don't you don't chase it with beer. I don't chase maybe that helps.

SPEAKER_03:

I don't, I don't chase it with beer. This is true. I don't do that.

SPEAKER_02:

Probably entirely IBD un unrelated, but I'm why boxing of all sports, Christ, it's so brutal. How did you get started with this?

SPEAKER_00:

Yeah, there's there's a couple answers to that. One of them is cultural, like boxing is, and I'm Mexican and Puerto Rican. My mother's a Mexican from Mexico, my father's from Puerto Rico. Those are two countries where boxing is just like a thing. I remember that my grandparents watching the old, you know, Dito Trinidad, Oscar de Oya, you know, Vodgas, like all of these, but like whenever there was a fight on it's it was that in baseball, right? Like that was like always on the TV. And growing up, again, like I was I was rough around the edges. I would, you know, never, I was never the bully, but if I was bullied, the bully was gonna have a problem. So I always had those issues. So at some point I was I was in middle school, and at that point, my my mom was just like, or my grandparents rather, were like, we gotta do something. And my mom was just like, Oh, let's let's put him in, you know. He likes these, he likes you know, Dragon Ball Z and superheroes and stuff. Let's see if he wants to do, you know, martial arts. So she put me into Tiger Schulman's, you know, mixed martial arts, you know, as a kid, and I loved it. And it was me and this other kid, we didn't belong in the kids' class, I'll just put it that way, to the point where they had a training with the adults. It was me and another kid my age. So we would always spar each other, but we were in the adults' class. So I did that for a while and I loved it. But then, you know, school time and frankly being that young, the attention pan is short. Like I kind of got bored with it. And then in high school, I remember just like wanting to do something again. And there was a reality boxing show at the time called The Contender. And I remember watching that with my mom, and she was just like, Do you want to try like boxing? Because I had done the mixed martial arts when I was like a kid. So I was just like, Yeah. So we looked up. There's this really, really world-renowned gym in Brooklyn called Gleason's Gym. So we went over there, I did like a trial, and the trainer was just like, You sure you never did this before? I was like, nah, but I did this other thing. So he was just, he went, I remember he went to my mom, he's like, Your son is really good. Like, if he wants, like, I'll train him. So I was just like, Yeah. So we started, I started going on the weekend, the weekend turned into three days a week, three days a week turned into six days a week. It was just like I went to I went to high school, I did my classes, and I was in the gym. And I just loved it. I loved the sparring, I love the training, I love the discipline of it that definitely kept me on the straight and arrow, like that kept me off the streets and into other issues that I've seen my peers get into growing up in that neighborhood and that environment. So having that and also a trainer that was just like, if I ever see you on the street doing some things, I'm not gonna allow you back in this gym. Like it was it was that kind of discipline. And yeah, I loved it and I was good at it. Like that's one of those sports where you can't suck and like it because you're not gonna have a good time. No, you're gonna get knocked out. That's right. But yeah, it was it was just it was a real passion of mine, and it's something I always I'll always miss. Like that'll just be something because when I was getting ready for the golden gloves, it was like brutal sparring sessions. Like we would we would call it the gauntlet where one one person would go do five rounds straight, then swap out, but like it was a different person each round, and then the other person would get in the ring, stay in there for five rounds, then go, go, go. And it it was to the point where my trainer was just like, you know, I know you're going to school, I support that. But if you do well in the Golden Gloves tournament, which they were anticipating I would, just based on how I was doing the sparring sessions and the training, they're like, you know, you you may want to go pro, but if you do that, that needs to be like all of it. Because that is a sport where on any given day, you could be severely injured. But yeah, but IBD happened and life had other plans and put me on a different path, which I'm very, again, very grateful for because I can't imagine myself doing anything else. Like, I think about the finance thing, and I did do like an internship with a really well-known financial institution. I'm like, this ain't it, this is not for me. But yeah, so that's that's why boxing if that answered the question.

SPEAKER_02:

It did for sure. Well, and I I don't know that I could see you as a finance bro, to be honest. But yeah, maybe, maybe I don't know. Now that you are in a place where you're feeling better, would you want to go revisit, or is it do you feel like that sort of ship has sailed?

SPEAKER_00:

No, I have too much respect for the sport. Being in a gym where, you know, there were teenagers my age doing it, that it was just like this was their chance. Like they were doing this because this was the only way they were gonna make a better life for themselves. Growing in a gym where there were professional fighters training there, like I know the work and the the time, the blood, the sweat, the tears, and like all of that that goes into that sport. I have too much respect to go to a gym and take up space. There was a time where I kind of did a tour of boxing gyms in the city because I know they like like these like trendier ones, which was cool. And I did find one that was more like family friendly. Like it was a real boxing gym, but it wasn't as hardcore as the one I trained at. It was very, you know, you saw dads with their sons there, like it was very family-oriented. So there was a period where I would go there like Saturdays with my own gloves and wraps because I knew how to prepare and like do everything myself. And I would just, you know, go and pay the day pass and you know, do my own round with the heavy bag and different equipment and stuff. And to this day, when I can, like I'll still incorporate it. Like I have gloves and pads. I'll have friends that, you know, on the weekends when it's nice out, we'll go to the park and like do sessions. So it's still very much something I try to have in my life in some capacity. But yeah.

SPEAKER_02:

Well, I'm sad that it didn't work out for you, but also that the path you've chosen perhaps is a lot less dangerous. Like you said, you know, it's it's there's some big consequences if you like get hit the wrong way or if something happened. So I think we're grateful that you are on the path you're on. I'm just sorry that that was the the way it sort of came about because yeah, it sounds like you've loved it and had a real shot. And so that's that sucks, unfortunately. But we'll take you.

SPEAKER_00:

Yeah, yeah, silver line, make the most of things.

SPEAKER_03:

I can't believe that we have already been talking for an hour. And also, this conversation went to so many places I didn't expect because I thought I knew, I mean, I thought I knew you. Not, you know, we were acquaintances, but like I thought I knew more of your story, and it was really nice to hear that. And also, congratulations on being in remission for 10 years. Unfortunately, it is time for me to ask you our last question. And that is what is the one thing that you want the IBD community to know?

SPEAKER_00:

It's to have hope. Just through my experience within the IBD community. I mean, I was I saw I went into support groups where I saw both, right? Like the people that had the hope and the people that just hyper focused on their disease and how bad it made them feel. And I feel like that just makes you feel worse, right? So a lot of it, again, accountability. We got to take accountability for ourselves, for our own thoughts. It could be a really terrible day. You got the worst symptoms ever. We uh trust me, I get it. I'm a patient. I understand. But overall, like I think it's really important to have a positive mindset and have that hope because again, like I'm here, Robin just said it, 10 years intermission with a J pouch. I know others that have Crohn's disease and are on a medical, you know, medication regimen, but they're doing really well in, you know, four or five plus years. I know so many people that have IBD through being involved with the foundation and the camp community and volunteers and volunteer group. I see a lot of people living full lives, you know, having families, having careers, doing all of these things. You never know what's going on under the surface, right? Only we know that individual journey. But the hope is there. Like, you know, hold yourself accountable and have and have hope and make sure you're doing what you need to do, whether it's taking your medications, you know, whether it's trying to be a little bit more active, make a little bit, you know, some more healthier choices. But there, there's hope to have a very fulfilling life. We'll have to work a little bit harder at it, but I promise you it's it's worth it because yeah, nothing is nothing is guaranteed, especially with a chronic illness such as this. So just have hope and and try to be grateful for every day and be extra grateful for the days that you feel that you feel good and as close to normal as possible. But yeah.

SPEAKER_03:

I think Stacey and I have said that on the show too. You know, the days that you feel really good, like take advantage of them, be extra grateful for those days because you know, live as a normal life as possible, have a great life. We'll just be a little bit more tired while we're doing it. We'll just be doing it tired.

SPEAKER_00:

And there's a whole community out there for you to find too. Like, I feel like that's one last thing I if I could add is you're definitely not alone. It could feel isolating. But for me, camp was was such a turning point in my life as a whole. Because it was just like, oh, I got to see other counselors that are my age, young, and living, you know, full lives, and even seeing these kids. And I'm like, these kids are having a blast, and they're gonna have the live the rest of their lives taking these medications and doing it. Like just seeing that could completely change your perspective on life. So yeah, even if you feel alone, there's an entire community out there, there's resources for you, there's ways to connect with others that can relate to what you're going through. So, yeah, have hope and and you're and you're not alone.

SPEAKER_02:

Okay, thank you so much. I was just saying how great it was to get to know you in a different way. Like, you know, we've known you professionally, but not necessarily gotten a chance to really hear your full story. So we really appreciate you coming on and sharing it. And we think there's a lot of people that will take many, many of your nuggets away from this. So thank you so much for being on the show and sharing your story with us. Thank you, everybody else, for listening. And cheers, guys. But you not you, Jose, because you have water. That's right.

SPEAKER_03:

Not you. I did that.

SPEAKER_02:

Oh, is it the thing, Robin? Yes.

SPEAKER_03:

Yes, it is, it's it hails back to sailors when cheersing with water was like toasting with water was basically like saying that the sea would be their grave.

SPEAKER_04:

Oh, I know it's that dark.

SPEAKER_02:

Now, so this feels like this feels like a reason for them to just get their bosses to bring them alcohol. So it does also, I'm guessing there was some like motive.

SPEAKER_03:

I think that's why all those sailors drank rum. It's funny.

SPEAKER_02:

I mean, listen, if I had a choice between rum and water, I might drink rum too. So maybe I'm a sailor. I certainly swear like one, so it's fitting. It's fitting. All right. Well, cheers, guys.

SPEAKER_00:

Cheers. Thank you both so, so much. Really appreciate it. Hi, this is Jose. If you enjoyed this episode, please rate, review, subscribe, and share it with your friends. Thank you guys for listening.

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Alicia Barron

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Robin Kingham

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