How Zach K. Survived Surgeries And Rebuilt His Immune System

An MRI, a phone call, and four words nobody wants to hear: “You have a perforated bowel.” Zach Koscuik was on the road to a comedy gig when Crohn’s disease forced yet another hard pivot, adding to a 25-year history that includes perianal Crohn’s, fistulas, abscesses, emergency surgeries, biologics, and three ileocolonic resections. We talk with him about what it’s like to grow up sick, manage the stigma that makes people minimize inflammatory bowel disease, and keep showing up to school, work, and life when your body is always negotiating the nearest bathroom.

Then the story takes a turn into the world of clinical trials and high-stakes medicine. Zach explains how severe disease and short bowel complications pushed his team toward an autologous stem cell transplant, a process that essentially wipes out and restarts the immune system. We get specific about the testing, chemo, isolation, and the surreal experience of being treated on a cancer floor without having cancer, plus the very real impact of insurance decisions that kept him hospitalized for 43 days.

The payoff lands with the kind of news IBD patients barely let themselves hope for: a one-year follow-up colonoscopy that comes back completely clean. We also keep it honest about what remains, including motility issues, joint pain, and the mental aftershocks of medical trauma. Zach closes with a simple challenge for the Crohn’s and colitis community: practice equal empathy, because two people can share a diagnosis and live totally different realities. If this conversation hits home, subscribe, share the episode with a friend, and leave a review so more people living with IBD can find it.

Links: 

• Find Zach on Instagram
• Information on the stem cell trial that Zach did
• Stem Cell Therapy clinical trial site- Clinicaltrials.gov

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Transcript

Welcome And What We’re Drinking

SPEAKER_01 0:00

Hi, I'm Alicia, and I'm Robin, and you're listening to Battle Moments, the podcast during real talk about the realities of IDB. This week we talked to Zach Costic. Zach has been living with Crohn's disease for 25 years. We talked to him about the treatments that he's tried, the surgeries he's endured, and finally the clinical trials that he's been through, including one that's stem cell therapy. We talked to him about his career as a journalist and his career as a comedian and a comedy writer. We've really enjoyed this conversation. We know you will too. Cheers!

SPEAKER_02 0:37

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

SPEAKER_01 0:39

Hello, everyone, and this is Alicia. And we are absolutely so excited to be joined by Zach Kossack. Zach, welcome to the show.

SPEAKER_00 0:47

Hi. Happy to be here, guys.

SPEAKER_01 0:49

We're happy to have you, and we're really excited to hear your story here in just a minute. But our first very unprofessional question is what are you drinking?

SPEAKER_00 0:57

So I've cut out almost everything besides water. So basically, I'm just drinking good old-fashioned New York City tap water, which has been graded as the best in the world by New Yorkers. So it's so you know that's how you know it's true because if a New Yorker tells you tells you something, then you it's automatically true. So it's just yes, I'm drinking H2O today.

SPEAKER_01 1:20

Fabulous. Robin, what about you?

SPEAKER_02 1:22

I have some fresh fruit. So I modeled some blueberries and I have some blueberry juice and I did a splash of club soda in that.

SPEAKER_01 1:29

Sounds very nice. A lovely little fresh berry spritzer. Nice. I'm a little under the weather today. So I actually didn't make myself a drink drink. So I'm also drinking a mock nail today, Robin. But mine is a passion fruit mule. So we have some passion fruit citrus syrup and ginger beer and a little bit of mint lime juice. But yeah, juice in mine too. It's really tasty. All right, well, cheers, guys. Cheers.

Crohn’s Diagnosis And Perianal Disease

SPEAKER_01 1:50

Cheers. All right, Zach. So the next question is tell us your IBD journey. What brought you into our community?

SPEAKER_00 1:55

Sure. So I was diagnosed with Crohn's in 2001. This is my 25th anniversary. I keep forgetting what it's called. It's not like the the silver the silver anniversary is at least 50, but it the 25th anniversary is like the one where they're like, hey, thanks for staying, sticking around for so long. Here's a watch for like all of your great the goal. Is it the golden anniversary? I think it's the golden anniversary. You can tell that I'm I I can tell I'm really trying to forget about having IBD. Yeah, I don't really want to, I don't want to celebrate it too much, but it is it is an important thing.

SPEAKER_02 2:22

It can also rent a car now.

SPEAKER_00 2:24

Exactly. It yeah, for my Crohn's can rent a car. My Crohn's has been able to drink for a few years now. It's been able to can rent a car without its, I guess, without Colitis' permission. I'm not really sure exactly who else they're gonna ask, but so I have I have Crohn's disease. I actually have recurring colitis as well. So basically I've been classified as Crohn's disease with multiple complications. And I've been, man, it's been it's been a fight for sure. I think also the the the thing that I've had to deal with a lot with, I guess, stigma driven around Crohn's and colitis in general is always just like exactly what it is. Because I think every time I bring up Crohn's in a conversation, first of all, the word Crohn's kind of stinks. Like it's just it's just by itself, it's like Crohn's. Like, like even that's that doesn't feel when you say cancer, people are like, oh, that one's bad. Cause I've heard that so much. It's it's advertised more than Crohn's in the the world of medicine. So when I'm thinking about that, I'm I'm kind of talking kind of generally about it. But also when I talk about it too, people are like, oh, that's the thing where you just like go to the bathroom all the time. And I'm like, that is part of it. And believe me, it is a big part of it. So I need to know where your bathroom is. That's very that's like question numero uno with anything I do. So I was diagnosed in 2001. My journey actually started with perianal Crohn's. That was kind of a shocking uh kind of start to things because I was very, I was young. So I was about I was 10, turning 11. Essentially, what was happening was I was just getting stomach aches with everything I ate. And my mom just thought I was a stubborn eater. She's like, he's, you know, he's a kid, he doesn't understand it. And what actually prompted her to take me to the doctor was we were at a family barbecue. It was actually just more of a friend's barbecue. And one of the other parents of the kids went up to her and was like, is he okay? Basically, like, is he doing okay? Because I was so skinny, I was so frail. And she was like, I think he's just, you know, in a phase of that, he's being a picky eater. And they were like, I think, I think maybe we should take him to the doctor. So that next week, I was going to a primary doctor, which then referred me to a gastroenterologist. And then I would say it was about six to eight weeks of testing before they finally ordered a colonoscopy and then discovered that I had basically an inflamed intestinal tract, and I had what they were calling basically iliocolitis and or iliocolonic Crohn's, which I know is very, very common for most Crohn's patients, is to have Crohn's in the terminal ileum. So that's where a lot of my problems were arising. And then essentially what started happening was the constant, you know, kind of running to the bathroom after meals and and things like that, which then started the kind of perianal disease aspect of it. I had a fissula tract that I had essentially no idea was happening inside of me until I until you felt it, basically, when yeah, when an abscess starts peaking its ugly head out, you you you feel it for sure. So that was the next prompt basically for from to go from gastroneurologist to colorectal pediatric colorectal surgeon at that point in time. So they basically, you know, saw me, you know, saw my case, saw my you know, surrounding area, and said, So we're going to have to perform surgery basically pretty soon, because it looks like you're in not only a great deal of pain, but also this this looks like something that's you know, we don't want it to cause trouble. So that was on a Thursday afternoon. I was set for surgery the following Monday. Basically over the weekend, as I was, it was actually, I'm sorry, that that Sunday before the procedure, I was doing my my prep for the procedure. At that time, they were prescribing liquid enemas, which were just a delight. I don't I don't know how to how to describe it more than that. Just so just horribly cold, sorry, horribly awful. But imagine that forcibly having to use the restroom while also having to go to the restroom through a fissula tract that is completely and utterly inflamed on the outside of your body. So they turned from essentially just normal bowel movements to just blood almost within an hour, maybe within an hour, yeah. And at the time, my mom was actually working. My mom was a a a waiter and she was on her one of her shifts, and her boyfriend at the time was home and basically was like, Hey, you gotta get home because he's literally going to the bathroom blood, and that's all he and and we need to go. So, what basically had happened in the process of me doing the prep, the abscess and fistula tract ruptured. So I was legitimately, yeah, I was essentially towing the line of septic shock. So we had to get me to the hospital immediately. So my mom came home, I was in the car in like five minutes, and we were on our way to the emergency room. Now, at this time, I wasn't living in this. I was, I'm originally from uh upstate New York, I'm from Syracuse. Usually everyone just knows the university. So we drove to our the hospital that was affiliated with the the GI office. Luckily enough for me, my my pediatric colorectal surgeon was the on-call doctor that day. So there's, yeah, so there is silver linings. He walked in, he took one look at the area, and he goes, I have to bring him into surgery like right now, because he is that this abscess is ruptured. If I don't get him into surgery in the next 30 minutes, we're gonna have to start basically prepping him for septic shock. So I was like, Okay, I'm naive and and and 11 years old, I have no idea what's going on. So they take me and very quickly prepped, very ready to go, and then just took me into surgery. So basically, after what was, I believe, an hour and a half to two hour long procedure, I woke up and I had a a tunnel of fistula or basically ceton drains, basically highway system through my kind of like perineum area. And I was like, what is going on here? Like it looks like it kind of looked like a an animal, like what is it, like a an animal balloon? Basically, it was just like, oh, they tied together a dog down there, and and essentially it was just like these two dangling rubber bands. So they they uh they got me in a hospital room, and the doctor came in and was like, okay, so this is what's going on. And the way that they described it was essentially like a highway system, and they said that your highway system got cluttered and clogged, and that's what created this abscess. The abscess then channeled into other parts of your you know rectum and along and so forth. So we essentially have to keep this area open for indefinite amount of time. And then I was like, all right, well, there goes the summer beach plans, I guess. Like it's just I'm not sure how this is going to go. So that basically was like that was the crash course of of Crohn's. That was learning right on the fly, this is what's gonna happen. So then basically it was just learning all the different steps and what we're gonna do. So my I mean, this was back in 2000, 2001. So it's like first course of treatment was steroids almost immediately. Steroids and antibiotics. So it was high dose prednisone but mixed with high dose metronidazole, the lethal combo. And so that was one part of it. The other part of it was then trying to figure out how to keep an open wound clean and feeling comfortable going to school and all these different things. I guess lucky for me, it did happen during the summertime. So I had a couple of months to prep. And what happened during that time was essentially just learning to, you know, clean myself with that going on, learning to, I learned what a sits bath was. What a great invention that is. Just a little jacuzzi for your butt. It's it's really nice. I I encourage people that even if you don't have crumbs, get one. It's better than a bidet, I think, because you are kind of sitting. It is sitting water, so you I would obviously clean it and sterilize as much as possible. But yeah, so doing a lot of that kind of stuff. And what then was I had to figure out was oh, so I have to keep this open wound and this draining abscess, you know, clean. You know, I'm gonna be going to school. How am I gonna keep it from going through my underwear or going through, you know, my clothes that I'm wearing? So before I was just taking like these oversized medical pads and essentially we were just wrapping them in my underwear with ace bandages and just keeping it from there. We thought that wasn't, you know, conducive to me going to school and being comfortable. So the doctor essentially was like, I think honestly, the best plan of a the attack for him is super size maxi pads because that's the only thing that's gonna keep him comfortable, and it's also gonna be able to do leak control, literally. So, so that was me learning that about maxi pads. It was just like, oh, okay, good. This is oh, they're good for everything. Perfect. And also, too, they all really are good for clotting for everything. Like it's amazing. I learned so many things. So that was the first kind of part of things going to school, kind

September 11 Memory And Growing Up

SPEAKER_00 11:10

of figuring it out. This I actually talked about this on stage a little bit. So basically, that summer was me getting back to school. So September we go back to school. My first follow-up after my this surgery was September 11th, 2001, which a lot of people may know as Zach's Big Breakthrough Day. It's it's a big nothing else happened that day. Nobody, nobody knows what happened, but I did have a 7 7 30 a.m. doctor's appointment. Odd to be that early. First person in the office. And I was like, huh, something about the day had a weird vibe to it. I was like, why are they making me come in so early? So basically what happened was they saw me, they checked the progress of all the medications that I was on and were like, actually, this is healing very well. It's healing so well that actually one of the tracks is basically fully drained. So we're gonna take one of the cetons out. I was like, what a day. This is amazing. Like it's gonna be less discomfort and less tight. So they basically did it in an office. It was actually not really that uncomfortable, and they took out the Ceton. So I was having, you know, a pretty good morning. And then right after the appointment, my mom dropped me off at school and I walked into the building and I was greeted by our front desk attendant who looked at my mom and said, Why are you bringing your child to school right now? And my mom's like, I don't know, he goes to school. Like, it's it's the beginning of the school year. Why wouldn't he, why wouldn't I drop him off? And and I'll tell you verbatim that the attendant looked at my mom and was like, I don't know how to tell you this, but a plane just hit the World Trade Center in New York City. And I mean, without pause, my mom just goes, That's not here. So I have to drop him off at school because I have to go to work. I was like, what comedic timing? You know, George Carlin over here, guys. What a what what a story. So I went to class and I was like unbeknownst to me, had no idea what was going on. And then to make matters even worse, instead of doing like a large-scale like announcement to tell the kids, you know, hey, some like something happened, they decided to take kids out in twos from their classrooms to essentially basically it was student interrogation. And I had no idea what was going on. But the issue was is I think they did it based now. I thought about it now for a long time, but I think they did it based off of alphabetical order because I was one of the last two kids taken out of the class, and I was like, okay, I I obviously this is just a coincidence. But then the questioning happened, and I understand that administration in schools that comes with like a different territory. There's no there wasn't a lot of softness in these deliveries as to a child. So my vice principal was like, Do you know anybody in New York City? And I was like, uh yes. And they're like, Who do you know? Who do you know in New York City? And I was like, My cousin, I think, live lives or works in New York City. They're like, Do you know which building she works in? I was like, ah, the big one of the big ones. I don't know, it's a big building, one of the big buildings. And he's like, Does she work in the World Trade Center by chance? And I was like, Maybe, I'm not sure. And they were like, Okay. And they were like, All right, we just want to make sure that you contact your family members that you that live in and around the New York City area. And then I went back into my classroom. And now thinking about it 20 plus years later, I was I my the all the things that pop into my head are like, did they think I was part of the attack? Or did they have this like idea that it's just like, well, he was late to school, so it just seemed pretty like odd happenstance that this that this had to happen. And I was like, all right, not but 30 minutes later, you know, all the kids get picked up from school, we get sent home, and I get home, and they obviously my mom was home. I was like, why are you home? And she's like, Well, they let us go from work because of what happened. And then I get home and all I see on the screen is ABC News and two smoking buildings. And I was like, Oh, this is this is a pretty big problem. This is a pretty big deal, obviously. What then transpired was then me just watching 12 straight hours of ABC News coverage as an 11-year-old boy, which is too much news on a day like that. It did get me interested very much so in wanting to be a journalist. And that actually kind of stuck for many, many years, kind of all throughout high school and even into college. My background is in broadcast journalism. So the first couple of years were kind of a doozy from like the perianal Crohn's side of it. Then as I got older, basically into like my mid-teens, like almost into high school, that's when I started getting more of the gut-related

Biologics Flares And Three Resections

SPEAKER_00 15:40

issues because they were tapering me down off of prednisone and some of the other medications. That's when they started me on biologics. So I was on Remicaid first, which was great and it did work for me very well. I will never be a person that is not pro-biologic, as long as you understand, you know, what you're getting into and the side effects and understanding of everything that's going on. But I was on that. That seemed to work for me pretty well. And then gradually over time, I learned about immunities and autoimmune responses and so on and so forth. So within about six months, I started having some regression in the disease. Like I said, more abdominal pain, more just generalized discomfort. Basically, then in my year 16, 17, I then started having more perianal flare-ups. So we almost got to a point where we had the perianal stuff almost fully taken care of, and then it flared up really bad again, which it flared up in a way where I had not only a double whammy, I had a bowel blockage teamed up with a perianal flare-up. So I had basically a new abscess that grew inside the fistula tract, and then my whole bow was obstructed. So I had to get the dreaded NG tube plus the emergency perianal surgery once again. And that was my first go round with gauze-packed wounds, which were not good. Not would not recommend to anybody, just the discomfort level of that I cannot explain. So that's when they basically, you know, had to impact the wounds with, you know, medical gauze. And then the last day I was in the hospital, after we had basically gotten rid of the obstruction through the NG, they had to remove the impacted gauze. Not a delightful experience. It was also the first time that I was given painkillers via IV, which I must say, I do understand that there is an opioid epidemic in this country. But man, those drugs are really good. And I don't want them to be good. They don't they're, but they are, they just are. And I just and uh if you have a problem, please call the hotlines and do everything you have to do. But my goodness, the lack of pain that I felt. But I wouldn't what I then found out was they basically gave me morphine directly into my IV line. So they didn't do the drip, they were just like, we're gonna give them morphine because this is gonna hurt. And I immediately broke out into hives within seconds. And I was like, okay, so we have to like, you know, we have to take care of that. But then basically going into you know, my later years of high school, it was essentially just kind of back to square one with you know, kind of having to wear now. This is a different time in a in a in teenager's life where you're just like, oh, okay, you know, you're full-fledged man and you're having to go to gym class and you're having to do all these things. And luckily, I've had some good friends. I was like, hey guys, can I tell you can I tell you something? And you know, some of the kids were making fun of me because of that. And some of my friends beat those kids up. And that was good to know that I had a community that was like, hey, you're you shouldn't be talking about him and like that. But then later in life, I did get a thick skin, and anybody that would essentially attack me, I did kind of come back with words. I was never a big guy, I was never gonna fight, but I was kind of malicious when it came to words. So I think that's where the first comet comedy aspects of my life kind of came in. Everybody was just like, you're really quick and you understand that like a lot of a lot of serious situations, you're you're kind of masking with comedy. And I'm like, yeah, it's a defense mechanism, but also like, you know, do you do you hear what he said about me? I mean, I can be I can be just as mean. The rest of high school actually was pretty okay. Actually, up until like the my last week of high school, I I literally had a flare-up that it hospitalized me two weeks before my senior prom. And it was just it so basically it was a a semi-obstructed colon mixed with just some perianal flare-up, which was actually just okay with steroids and antibiotic IV. So I was like, all right, we're good, we're getting out of here. Go into college, then there's a series of trying the biologic wheel of all the different meds, everything. I uh anything that was basically on the market, I was trying at that time. Actually, two weeks before my 21st birthday, me and my doctors and my colorectal surgeon at the time basically decided that it was time to have my first resection because we've had exhausted all medical treatments and I had my first resection in 2011. Notice I said first. So there's definitely more. So I've had now, as of this recording, I've had three iliocalonic resections. My last one happening in 2023, which unfortunately was a slight bowel obstruction, which then turned into a perforated small bowel, which I've now lost basically half of my small intestine, half of my large intestine. So I'm a straight 50-50 split guy now. So it's just now we're just doing full compensation of both organs to see how they work. And that's kind of where I'm at today before you know some of the other clinical trial stuff that we had gotten, you know, that I had gotten into after that fact.

SPEAKER_02 20:35

The drama and the trauma from that being your welcome into the IBD community. Yeah, everything that you described that I experienced myself, I was like, oh my God, that's so painful. Oh my gosh, that was so painful. And you were 11. Oh I know that you've skipped over a lot because the your entrance in the community was so dramatic. Half in half. How does that work? Like you still have part of your large intestines?

SPEAKER_00 21:02

I do. So I have about seven feet of intestines left, roughly.

SPEAKER_02 21:07

That's not a lot of intestine.

SPEAKER_00 21:08

That is not a lot. You're skipping a shortcut. So I technically do from the perspective of I have less than 200 centimeters of small bowel left. However, given I've spoken to many a gastroenterologist, many a nutritionist, many of so essentially, because I have my colon in some form of continuity, I basically can auto I can eat with autonomy within reason. I do have a lot of complications because of a lot of the resections. And most of the resections have happened at the lower part of my small intestine. So like the ileo sequel valve area, basically the terminal ileum, that's all gone. That never stood a chance. And so that so basically the complication aspects of it now is just its urgency and frequency and go of going to the bathroom. And it's pretty often and it just kind of happens all the time. But But so I'm I'm in the process of speaking to other doctors because right now I'm at a point with my my team now, it's all through the GI, nutritionist, colorectal surgeon, it's all to kind of like this all one big team. And so they will they classify me as basically short short bow, but with continuity. So it means that I have all the abilities to stay autonomous when it comes to eating. But even now we are discussing plans about having short-term TPN, you know, pick line placement, so on and so forth, which is old hat for me. It's something that I've I do have a lot of history with every aspect in the uh medical sense when it comes to Crohn's and colitis. So it's it's nothing that I'm not used to at this point. It's just a matter of like, I didn't want to, but if I if I have to, I have to kind of situation.

SPEAKER_02 22:48

Zach, when you answered our question number two, you really spent a lot of time. I mean, how could you not, on your initial diagnosis and what's kind of happening now? Because you really kind of brought us up through your 20s, and there's still like 10 years between. So you glazed over that clinical

Perforation Scare And Trial Decisions

SPEAKER_02 23:05

trial stuff that you really didn't even go into detail on. So is that something that's more recent that you're actively a participant in, or is that something that you did when you were a child as well?

SPEAKER_00 23:14

So kind of the quickest. So I I've been through many different clinical trials. I was actually one of the first patients to try, I think when I was 14, they tried a new medication, or basically it was just like a new kind of surgical technique for healing of open wounds of things of that nature. It was something called fibrum glue. It was it started like in the mid-2000s. So basically, my pediatric colorectal surgeon was one of the pronounced ones in the area. So essentially, what it is is like basically take, like, I guess for lack of a term, basically clear jello and fill the cracks, if you will. And uh, it would basically the part of it is that your body would adhere to the fibratic tissue, which would then create healthy new tissue that would heal the wounds. It did not work. So then also the medication trials and tribulations. I but basically any new drug that came on the market, they were like, Well, we got a perfect candidate. So I was pretty easily enlisted into the clinical trials. But the latest clinical trial happened, so I did touch upon the last surgery that I had in 2023, which was basically it was the most traumatic one because it was a full emergency. I had a perforated bowel. So it basically the story of that, even crazier, I guess. So we touched upon it a little bit, but I'm I'm a stand-up comedian in New York, a writer as well. And I was driving to a gig on Christmas week. So I was driving to Philadelphia to do a comedy show and then going to my mom's, who lives in like eastern Pennsylvania. So I was going to do the gig and I had an MRI earlier that morning. You know, I had been symptomatic, but I hadn't been feeling like that bad. And my doctor basically called me and was like, Where are you? And I was like, I'm in the car. And he's like, Okay, your MRI results came back. You have a perforated bowel. How fast can you get to the hospital? And I was like, Homum was in Philly, man. So, so not fast. And he goes, Okay, I'm gonna call the colorectal surgeon here. Now, I have not had a colorectal surgeon in New York City yet, as of this phone call. I had met with one, but I had not had like an actual one. So 15 minutes later, I got a phone call from a colorectal surgeon and he said the exact same thing that my doctor said before. He said, Where are you? I said, I just answered this question. Like, I just you guys not talk to each other. Like, I was like, I was driving to Philadelphia. He goes, If I were you, I would drive back to New York right now so I could have you prep for surgery in the morning. And I go, All right. I go, it is Christmas. So and I was like, How advisable is it for me to not go to the hospital right now? And he goes, As your doctor or soon-to-be doctor, I would advise you to drive back to New York City right now. He goes, because you could go into septic shock and so on and so forth. I'm like, okay, that's just those are scary words. I don't need to, you don't need to scare me anymore. So I drove back to New York, sat in two and a half hours of traffic, just to go back home and essentially wait until uh they got me a room at the hospital for 12 hours. And then that next morning I went to the hospital and they got me in, and you know, and here there's that that whole chestnut. So after all that was said and done, basically they said, Well, we're at the end of the road with you. And I was like, Okay, what does that mean? Like, or they're like, Well, you're lucky that you're, you know, in a clinical center, you know, you're you're going to one of the best clinical centers in New York City. I'm going to refer you to a doctor who performs stem cell transplants. I go, for leukemia? I'm confused because I don't have I was like, Are you guys telling me my account's high? What's going on? I'm freaked out. And they're like, Well, basically, you're at a point now where you have just enough small bowel left to have autonomy. And we want to try to basically prolong that for as long as possible without having to put you on lifelong TPN. And I was like, Oh, all right. I was like, You guys are really soft with your storytelling here, doc. Like, I don't know anything. Like, it's always I I understand that they are trained in chaos. Like, that's they are crisis managers. So they're some of their bedside manner is lackadaisical to say the least. So this doc my doctor was very matter of fact. So I then got and enlisted into at least a phone conversation with my now gastroenterologist. So we had the conversation, and they it was a lot of repeating what he said. All right, so we're at a point now where we're, you know, you're basically going to be on lifelong, you know, motility medications and so on and so forth. And I was like, okay. So him and I had a very long, two-hour long conversation at the beginning of 2024. And then I basically just started getting treated by him and his team. Almost 2025 gets here. I have a colonoscopy, right? And during the summer, it comes back horrible, as if nothing happened, basically, after the surgery. They were like, you still have highly advanced disease, it's at it's in the same parts, it's not getting any better. There's no other medications that we could do for you. We started doing dual biologics that just weren't doing anything. So then it basically got to a point where it's like, all right, you know, we have some hard decisions to make. Do we try medication clinical trials or do we push you into this transplant clinical trial? So, you know, I had conversations with you know family friends and basically said, you know, we're gonna try to do the the stem cell transplant. That is a whole other thing with the with insurance and trying to get that approved. But it's another weird, I I guess, I guess I had a lot of weird occurrences in my life and the of what happened and everything. So basically the end of 2024, there was finally some least resistance from the insurance. They were like, okay, we're thinking we're thinking about approving this, but we need to know a lot more stuff about this person's case because you're essentially treating him for autoimmune as opposed to, you know, cancer. Yeah. So they needed a reason why. My doctor was very creative. He's his team is one of the foremost teams in all of the world that are doing transplants for Crohn's autoimmune in general. I got a, you know, you've been approved for this transplant. And then basically in the couple of months to follow, it was getting me prepped and ready for that. So a lot of testing, a lot of can your body handle this basically to the brink of death experience that you're about to go through. Because, you know, they didn't sugarcoat it, which I did appreciate. They said, you know, hey, you know, this is we're essentially killing off your immune system to then re-to restart it. So if you have no immune cells and anything happens to you as far as like sickness is concerned, you could die. That was one of the first things the oncologist and bone marrow transplant team said to me. And I was like, I appreciate you guys not burying the lead there. Thanks for like making that prevalent off the like off the jump. That was very important to me. And I was like, I really don't like sugar coating. I don't like you guys telling me about the the cool technology that's about to happen. But so that basically was the whole process. The whole process, even going into the transplant, was a lot too. It's a lot of, you know, every every single test you could go through as a person, I had everything from like the 3D imaging of my heart all the way down to the lung capacity exams to you know, they had me walking on a treadmill for 30 minutes and then running and then walking. And it was just like, all right, I I get it. Yeah, I just I need to be in somewhat healthy standing. And then uh February 28th of 2025, I was basically

Stem Cell Transplant Reality Check

SPEAKER_00 30:10

brought to the hospital, and that's when I started the transplant. And I was in the hospital for 43 days, and I went through the whole, the whole thing. Now, that's the other thing about the cool thing about insurance is they can basically confirm, deny, do anything really they want to, as far as like your occupancy in the hospital is concerned. Because the way the transplant is supposed to go is essentially the actual collection of your stem cells, your bone marrow. And then that's like week two of your stay in the hospital. And then you're supposed to be able to go home for a couple of weeks, recuperate, and then come back for you know, the real party, which is, you know, the the actual transplant. My insurance basically told my doctor you would have to submit another insurance claim if he was to get sent home. So my insurance jailed me in a hospital for 43 days and just crazy, but it did happen. So basically throughout those 43 days, I went through the you know standard stem cell transplant as if somebody would with a blood cancer or any sort of you know muscle fiber-based cancers would essentially would go through. So I was on the cancer floor of the hospital, which is weird when you don't have cancer. It's a weird time because you do get chemo, so you get that part of it. And then this is something that I still trying to come to terms with and grasp is when you're going through the hallways, because I would take these like kind of daily walks when I had the energy, you know, and you would pass by these people and they would all, they would all, we would all look the same. We would look ill and bald, and we would be just kind of we're all going through it, and we all kind of just give each other this like kind of head nod or anything like that. And I couldn't accept it. I tried so I was just like, ah, we're not the same. I I your fight is so much harder, I think. And I'm like, I know I'm going through something, but I feel like you're going through something worse, and I'm trying so hard to accept your, you know, like, hey, you know, my brother in arms, you are going through it. And I'm just like, hi, hi, I'm sorry. Like, I'm trying my hardest. But yeah, so that was good, kind of going through that. I was like, all right, this is very, you know, intensive. And the whole process, obviously, very intensive. It was it was the hardest thing I ever done, you know, given everything else that I had going on in my life. I do have some funny stories, uh, unfortunately, about the situation. I am in the process of developing a one-man show that is going to highlight at least that portion of my experience, kind of to be determined title. Basically, I have enough material where I can bring it to, you know, a stage with the ultimate goal of going to all of the big like fringe festivals in the United Kingdom, in stateside, basically anywhere that'll have me that'll let me tell my story and do a really bad accent of the whatever country I'm in, because self-deprecation is something that I know the United Kingdom is very big fan of. I'm a big fan of. So, but the basically the moral of this elongated process and story is March 25th, I had the stem cells put back into my own body. So basically, it's called an auto autolungus stem cell transplant, aka a non-donor transplant, where you take your own stem cells and reput them back into your own body, essentially control alt deleting your immune system, if you will. So your computer, you are a computer. We've we have then created a brand new system for you. And April 10th, then at that point, I was able to then finally go home and essentially be cut off from the world a little more for about three months because I had to be super careful of everything that I did. I basically had to wait for my blood counts to get back up. I had to go to the doctor weekly. I actually, the within the first week, I was back in the hospital with a highly elevated heart rate, which my doctor was like, Yep, that's gonna happen. We just want to make sure that you're like, you know, hydrated and feeling okay and so on and so forth. So that I went through that whole process, and now I am a year and it's been 14 plus months post-transplant. And I actually I timed this up correctly. I knew this was gonna happen. So I had a colonoscopy on Friday, which was my my year follow-up colonoscopy, and it came back completely clean. No disease, no, nothing of note to report. The only thing I could say is I'm still having like this kind of motility discomfort. Basically, if you have a shorter gut and you know, there's any sort of anesthetic involved, your mo the motility of your gut is very much slowed down. So I'm still feeling very uncomfortable, kind of lumbarus, if you will. But I would say it is it is a night and day difference. I'm better for sure, but I still have Crohn's and I still have all of the, you know, the complications and aspects that come with that, which isn't just, you know, abdominal issues or anything like that. It's joint pain. It's, you know, I've lost a lot of weight, so there's, you know, there's a little bit of atrophy, so there's pain when you're just kind of like me sitting here for this long, there's no way my right leg is not going to be asleep. Like it's just, it's just going to be asleep, and I'll have to, you know, slap it around a little bit and get it up and going and do my stretches, and and uh that's just kind of part of everyday life. But yeah, so it's basically an IBD journeyman. I think from where I was to where I am now is definitely better.

SPEAKER_02 35:31

Congratulations.

SPEAKER_00 35:32

Thank you.

SPEAKER_02 35:32

I mean, after all of that, you have a clean scope. I hear the hesitancy in your voice because I have often said when like right now, people are like, How are you doing? I'm like, I want to say good, but I don't want to say good. Like, just for a moment, even if it's just with us on the show, like, holy shit, man, you had a clean scope.

SPEAKER_00 35:51

Yeah.

SPEAKER_02 35:52

Even in your little heart, you just be like, I had a clean scope for one second. I can just celebrate that for one second internally and then go back to dark humor and being you know, hesitating when people ask you how you're doing and all that stuff.

SPEAKER_00 36:05

A lot of my comedy influences are basically any person that is self-deprecating or basically has an obscure perspective of reality, is where I've kind of gotten a lot of my nuance and yeah, perspective from.

SPEAKER_01 36:20

So I know you were diag diagnosed super young, but were you already like kind of dry, snarky, dark humor when you were smaller as well? Is this like a natural thing to you, or is this developed, you think, more because of just some of your IBD experiences?

SPEAKER_00 36:34

Yeah, the IBD is definitely darkened, darkened me a good bit. You know, it's the medical trauma will will do anything to you. That's not even getting into the the life trauma. There's there's that's other, that's a whole other thing, which years and years of therapy will be used to repair. That my mom, I actually my mom would would always point this out to me. Whenever we would have any sort of like barbecues, hol July 4th, holidays, Memorial Day, anything like that, she would always say that I was holding court with the adults. Like the kids would be often playing, and I really couldn't like play at that level because I was, you know, just riddled with disease. And I would just be like talking shop with the old guys. And I was like, Oh, I guess I'm just like an old head at like 15, especially when it came to like I'm a big sports guy, so it's just like so that that's all these guys and this these conversations have not changed. Every man wants to have a conversation with another man about a guy that plays a sport. That is our love language. If a guy's got a name on the back of a shirt, we want to talk about him, we want to know his stats, we want to put together a lineup of the great guys with names on the back of their shirts. Like it's this is this is what we want to do. And to take that from us is like taking part of our souls away. So I was doing a lot of that. So originally when I went to college, I went as I guess a broadcast journalist and I got into broadcasting. I was commentating hockey and basketball. I loved hockey, and my school was a very big hockey school, so we were good. So we got to do a lot of a lot of traveling because we were so good, and that actually honed my craft and got me really into like you know, the sport of hockey. But then, you know, when you post graduation, you know, something they don't tell you is that you know, just because you have a good voice voice doesn't mean they want to pay you for it. So you have to find another way, another means to an end. So that's when other work came into play, and then later in life the comedy stuff started. It started, I always had my interest, but it was always just like, I'm not gonna do that. Why would I do that? Like, that's it's a silly thing now. And now I'm doing it, and I'm just like, well, I mean, it's kind of an emotionally abusive relationship where it's just like, what's good? Why am I doing this? And then you get off stage one time and you like do okay, and you're just like, I'm the greatest at this ever. Like, whoever

Clean Scope Comedy And Equal Empathy

SPEAKER_00 38:50

said that they I'm bad is wrong because I'm the greatest of all time at this. So that's kind of the yeah, the interesting aspect of of it today, and especially in New York, because it is the greatest city in the world, but man, it has some of the greatest egos you have ever seen in your entire life. Just unbelievable amounts of people being like, I'm pretty good, and I'm just like, okay, like maybe, maybe give yourself a give yourself a chance to have that dopamine slow down because you're gonna be back at open mics, sad with the rest of us, and it's just part of the deal. Your mental perspective has to be very important here, and that's you know, it's kind of the different aspects that I have on this whole this whole game we call life.

SPEAKER_01 39:30

I also think Robin said to you you do some writing as well. So part of it is addition to you actually writing your own stuff, you also write for other shows and things, right? Or you have. Tell me more about that. Sure.

SPEAKER_00 39:41

So basically, I'll do uh contributing writing stuff. So I've done some a couple of things like Crohn's health related. I have done some things that have been put on, you know, satirical magazines. So right now I do, you know, a lot of sports satire, a lot of political satire. Currently, just in Twitter beefs with, you know, many different uh MAGA representatives who don't like that I'm being funny about the orange man. And I will not say his name because I will not give him a platform in any way, shape, or form. But a lot of different things that I'm doing. So I I like I said, I'm doing some cont uh contributing writing. I've been I've had a couple of so basically uh it's in our world, it's just like submitting jokes to you know political satire types of shows, television, long form script, sketch, basically anything of that nature. So it's basically I'm just a I'm I'm freelancing and and doing that as a part of how things are right now. And I mean, I I I enjoy any chance that I get. I'm trying to do more of the the advocacy of Crohn's and colitis. I think that's a part of my journey and my life that I have not done enough with because I feel like I can speak to this in every way, shape, or form. And I think my stubbornness gets in the way far too often because we have this little, I think I think there's a little bit of uh posturing, you know, a little patient posturing where if somebody tells you a story and you're just like, I can tell you something worse. Like I got something way worse than that. You thought that was bad. Let me tell you something way bad, way, way worse. I have a uh comedy friend, and I'll say that he has a great uh joke where he talks about there's nothing more prominent than people trauma bonding. And he goes, and anytime I'm in the streets of New York City, it's like watching a tennis match of trauma because people are just volleying things back and forth. Well, my dad left. Oh, yeah, well, I have cancer. It's like so it's like very and I was like, that's great. I love that, and I want that's how I want people to like go through life, is just being like, Oh, we're all just playing trauma tennis, and we're just trying to figure out if we're gonna win that point.

SPEAKER_02 41:41

Funny because I'm always trying to tell people it's not a competition.

SPEAKER_00 41:44

Are you sure?

SPEAKER_02 41:44

We all have had some bad stuff happen.

SPEAKER_00 41:47

I'm still trying to make it, so uh I'm gonna I'll I'll okay, I'm gonna keep the competitive edge just a little bit, but I'm like you can. Yeah, that's the that's the great that is some of the best part best parts about comedians is that they they're the they're really good ones are they have this a bit of a competitive spirit, but they're also like I stink still, so it's like that's that's my favorite.

SPEAKER_02 42:07

You're always striving, you're always striving to get better.

SPEAKER_00 42:09

There's no mamba mentality in comedy. There's no there's no Kobe Bryant's or Michael Jordan's among us. There's no guys being like, I heard what you said about me in the tabloids. I think there are that his name's Kevin Hart, but he's also made 66 billion dollars, I think. So I think he'll be fine. You know, that that part of the Napoleon complex has not hit me yet. I'm I'll I'll hopefully it will to the point where I'm like, oh, I should go make 67 billion dollars. But I'm in the process of just trying to like relive my life and like you know, get back to doing what I enjoy the most, which is trying to get strangers to laugh in dark rooms in overly congested, overpriced city.

SPEAKER_02 42:47

So okay. We could go down so many rabbit holes, but I'm gonna have to stop you because now it's time for me to ask you the last question. Zach, what is the one thing that you want the IPD community to know?

SPEAKER_00 42:58

The one thing I want them to know is everybody has a journey, and some of our journeys are much longer and much more winding, and we need a lot more grace than some other folks because you can have two people in the same room with the same disease, and their track could be straight as an arrow, and your track can be a long winding highway of all different complications and issues. And I think the biggest thing, and it's something I really am working on, is equal empathy for every just every person with this because we're going through we're all going through something physical, emotional, all the different aspects is you have to just approach everybody as equally as you can. And I don't want to sit here and be hypocritical, but I have a new friend, actually, an old friend who is now newly diagnosed with Crohn's in their 40s. So they're they're a little scared and they're coming to me with a lot of advice and a lot of like different things because unfortunately, I am the preeminent expert of in this field of their of their core friend group, and they are asking me a lot of like base level questions. And I've done a very good job of being like, you try this, try this, they asked, but they did ask me something the other day, and they kind of just caught me at like a little bit of an irritable time. And I go, you know, Google's a wonderful reference, and it has so much information, and it was just like about the type of like antidiarrheal they should use with like this certain meal. And I'm just like, I actually don't, I really don't know that, and I am just swamped with other thoughts right now, and I am trying my hardest, and I am, and I even apologize. I was like, Hey, I'm I'm sorry that I told you to Google it, but I was like, you caught me right at the time of like me in the process of doing three different things, and I was like, I couldn't do that fourth thing, so I apologize. They accepted the apology, but it was also like, oh, that was good of me to be like, oh, I recognize that saying Google it, like you figure it out, like is not helpful for them because they're scared and they don't know what is gonna happen next. So uh that's

Closing Thanks And Listener Call To Action

SPEAKER_00 45:05

something I'm trying to do, which I guess I've called equal empathy, and trying to do as much as I can, much as I can of that in my life.

SPEAKER_01 45:13

That is good advice. I think there are always gonna be days where that equal empathy is harder, and I think that's okay too. That's all we can do is try to approach everybody in the world like they're on some sort of journey and that we have to provide some grace and empathy to people. Zach, thank you so much. It was really fun to hear I fun, it feels like the wrong word. It was fascinating to hear your story.

SPEAKER_00 45:32

Good. That's a good adjective. I thank you.

SPEAKER_01 45:34

I was like, it's not right, but you are very funny. We've been laughing a lot the entire time. So I appreciate the dark humor that went into it.

SPEAKER_00 45:40

Yeah. Yeah, no, because as soon as yeah, as soon as the cameras turn off, I just go back to just Eeyore, just like whatever, everything's gonna be okay, I guess, poo bear.

SPEAKER_01 45:50

Like, well, Zach, thank you so much for being on the show. We really, really appreciate you sharing your story and just even a piece of it. I know there's so much more. So hopefully your one man show comes out soon so we can get the rest of it or at least a bigger piece of it. But thank you so much for being on the show. Thank you, everybody else, for listening and cheers, everybody.

SPEAKER_00 46:07

Uh hi, this is Zach Hosek. And if you enjoyed this episode, please rate, review, subscribe, and share it with your friends.