Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
Living with Crohn's Disease Doesn't Stop Ian Goldstein from Finding the Humor
Comedian Ian Goldstein takes us through his journey with Crohn's disease, beginning with his diagnosis at 16 when he was just trying to navigate the already challenging world of high school, SATs, and planning for college. With candid humor, he recounts the moment he realized something was seriously wrong – not just from frequent bathroom trips, but when a coworker pointed out his dramatic weight loss.
What follows is a rollercoaster of medical experiences that many in the IBD community will recognize – from the shock of needing a colonoscopy as a teenager to the trial and error of finding effective medications. Ian vividly describes his first major bowel obstruction during his senior year of college, complete with what he calls the "modern-day torture device" known as an NG tube. Despite his best efforts to manage his condition through diet alone, he eventually required surgery in 2022 to remove seven strictures from his small intestine.
The conversation takes a fascinating turn when Ian shares how he's transformed his medical journey into comedy shows. From "The Autoimmune Saloon" to a celebration party for meeting his healthcare deductible (complete with custom cupcakes and hats), he's found ways to create community while addressing serious issues like medical debt. These creative outlets not only helped him process his experiences but connected him with others who could offer crucial advice about doctors and treatments.
Perhaps most valuable are Ian's insights about navigating the healthcare system with a chronic illness. He speaks honestly about the frustration of insurance denials, the anxiety of unexpected medical bills, and the challenges of having an invisible disability. His experiences highlight the importance of self-advocacy, finding the right medical team, and building a supportive community.
Ready to laugh, cry, and feel a little less alone in your IBD journey? Listen as Ian shares his practical wisdom: record your doctor appointments to remember important information, and seek out community connections that might literally change your life. Whether you're newly diagnosed or a veteran of chronic illness, this conversation reminds us all that finding humor in dark places might be our most powerful medicine.
Links:
- Ian's website
- New York Times article about Ian's party to celebrate meeting his healthcare deductible
- The Squeaky Wheel- satire publication that focuses on the experiences of people living with disabilities.
- Tina's episode with us
- Dr. David Schwartzberg's episode with us
- Nicole's episode with us- Ian mentioned Nicole and how supportive she's been to him but we sadly had to cut that part out for length. But- get to know Nicole!!
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Hi, I'm Alicia and I'm Robin and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week we talked to Ian Goldstein. Ian is living with Crohn's disease and vitiligo and he has a family history of inflammatory bowel disease. We talked to him about being diagnosed at 16. We talked to him about bowel obstructions and surgery. We talked to him about SIBO and we talked to him about being diagnosed at 16. We talked to him about bowel obstructions and surgery. We talked to him about SIBO and we talked to him about combination therapy. We talked to him about finding community and, best of all, we talked to him about how he's turned his Crohn's disease and dealing with healthcare into comedy Cheers.
Speaker 2:Hi everybody, Welcome to Bowel Moments.
Speaker 1:This is Robin. Hey everyone, this is Alicia and we are absolutely delighted to be joined by Ian Goldstein. Ian, welcome to the show.
Speaker 3:Thank you, Alicia and Robin, for having me.
Speaker 1:Well, we are very, very excited to get into your story. But very first unprofessional question for you is what are you drinking?
Speaker 3:Okay, yeah, literally right now I'm drinking out of a mug with my initial on it that has I. Yeah, literally right now I'm drinking out of a mug with my initial on it that has I. My fiance has an initial B because her name is Becca, or Rebecca Becca, but I'm drinking water right now. But I was thinking about this question more like deeper than I should when you. So I'm drinking water now, but I'm like, well, technically, I'm also drinking like what's a drink? I can say, and I was like, oh, I started drinking matcha in like the last year or so, so that's, that's been pretty exciting. It's a very Brooklyn-y thing to say, I guess. So that's why I do feel awkward when I order at a cafe. I'm like can I have a matcha latte? It's like it's just those words. I'm like I know how that sounds, but I enjoy it. And it also is like $8, which is way too much money. But water and matcha, I guess, yeah.
Speaker 2:Matcha is quite grassy isn't it?
Speaker 1:I think so Like. It's like coffee, you know, when you first drink it you're like, no, it has to have like seven packets of sugar in it. And then eventually you get down to where you need less and less sugar and it might be an acquired taste.
Speaker 3:I think it is. If once you add milk, it's exciting, and definitely when you add sugar, it's very exciting. But I also I do like when things taste bad, sometimes I'm like, oh, it tastes terrible, but it's, it's healthy, so I'm doing something good for my body. So, yeah, this is probably some psychological things here we can discuss.
Speaker 1:But yeah, yeah, I'm sure there's probably some psychologists that are listening that are like we'd like to talk to you, robin. What are you drinking?
Speaker 2:You multiple beverages. So my daughter is visiting right now. She's in town and she was craving a Sonic slushie and I'm going to tell you I have not had one of those. I can't tell you, the last time I had one. So I'm drinking a Cherry Limeade slushie and it is delightful.
Speaker 1:I love it.
Speaker 1:Alicia what are you drinking, robin? I am delighted to tell you that I am drinking a Hillstone Crisp Martini Fancy, I know. So it is rose and elderflower gin, and then it's elderflower liqueur, lemon juice, and then you top it with some Sauvignon Blanc, so like all of my favorite things, like in a glass. So I'm pretty excited about it. I've not had a drink yet, so I wanted to honor you guys with my first sip. So cheers, guys, cheers, cheers. That's really good, that's dangerous. Okay, and next question for you is tell us your IBD story. What brought you into our community?
Speaker 3:Yes, oh, I, about 20 years ago, in 2007, 2007, I was 16. And I was diagnosed with Crohn's didn't know it was Crohn's right away because it was 11th grade and, as I'm sure you both know, like 11th grade is terrible. High school is like slowly starting to get better. But I mean, I remember being in chemistry class. I'm like I have to go to the bathroom. I have to go to the bathroom again and I'm like it's probably just stress, because I'm stressed about SATs. You know the, the daily 7am to 3.30pm school schedule, which is the worst thing ever. I'm stressed about SATs going to college. So I'm like it's just stress, it's fine.
Speaker 3:And I have an afterschool job at a supermarket and I remember someone coming up to me at my job and said you look really thin. At that time I was very adamant. I'm like, oh, that's a compliment, that's a good thing, no-transcript. She was like no, no, no, you look like really thin, I okay, I'm all right, I'm okay. And like I don't know what that is. And then I saw I don't know, I won't call it a fistula, but it was something just between that area around my groin area where I was like, oh, this is like there's like pus coming out. So it's like all these mixtures of things happening.
Speaker 3:I'm like I got a colonoscopy and they're like you have Crohn's. So I was 16 years old and I have Crohn's disease and even before the colonoscopy I'm like I'm having a colonoscopy at 16 years old. That's crazy. Like I thought this was like for 50, 60 year olds. So I was diagnosed I had Crohn's and then put me on an ask call and I was like this is not helping at all. So I my mom me and my mom cause my mom would come for every visit and we would switch, switch to a different doctor who was younger, kind of looked like Jerry Seinfeld. So I was like so it's kind of hard to look directly at his face Cause I'm like you look exactly like Seinfeld is my gastroenterologist. But he he put me on Entacort, a steroid, and then that started really helping. And then eventually he got me on 6MP and I was good. I was like I feel normal, like the all the symptoms like started dissipating. I was like I think I'm good, I don't really, I don't need surgery, I'm fine. Again, this was 2007. So that that stayed like that for the next few years. I was like I think I'm like just good now. I don't really.
Speaker 3:I didn't have to alter my diet too much, but I remember it was the first time. I also remember feeling before the medication, before getting that when I first got Crohn's the feeling of not feeling hungry and not wanting to eat and being nauseated by food. And I remember my mom coming up to me being like oh, I'm so jealous of you. I wish I had that ability to be like. I was like you don to feel better. I, you know I went to college and everything was fine.
Speaker 3:And then, by senior year 2013, it was during Passover I had was on the Passover diet, which was matzah, and I enjoy the diet. I actually like matzah with cream cheese. It's pretty exciting to me, but I, so I had a lot of matzah. And then I walked into my apartment at the time on campus and I was like I walked into the room, I felt this immense amount of pain that I've never experienced in my life. I'm like it was a sharp pain that is like hard to describe now, even because I'm not experiencing it, but when I experienced it, I'm like oh, what is that I'm like? And then it went away. I was like okay, I'm fine Kept happening. I was like I must be constipated from all the matzah. That must be what's happening. So I was fiber, nothing about it.
Speaker 3:I had it and then the pain, which was already really bad, amplified by like a hundred and just remained there and I'm like I something is really going on, to the point that I was in the bathroom of my in my apartment and I was. I was like I have to get on the ground, I cannot like. I like a doctor prescribed me pain medication. It did nothing. I started throwing up and then I started, and then I went to the bathroom. I was like I just maybe I just need to like get this out the other way, just a bowel movement. And I went and it was black, it was fully black. I was like, okay, something really weird is going on here, alarming. And then I was just I was just on the bathroom and I was like I called to my apartment mate and he called the, called an ambulance.
Speaker 3:I went to the hospital and they're like you have a bowel obstruction, absolutely Bowel obstruction. They didn't rush to do surgery, but they were like we're going to give you an NG tube. And I had never experienced an NG tube before and I was like this is a modern day torture device. Cause I was like what do you do? I didn't know this existed. You have to jam this up my nose and down my throat and into it, and you feel it dangling in your throat when it's in. And so I was just like, oh my God, like this is hell.
Speaker 3:And at like 3am I have vitiligo by the way, it's another autoimmune condition that's not risky in any way. But I remember a doctor who also had vitiligo then came in and looked at me with like such pitiful eyes at like 3am and I was just like because I was just like my eyes were wide and not talking, so every time I talked I had to, I was like choking on the NG tube. And so he came in. He was like he's like we're gonna take it out. I was like, okay, like not knowing if they should or not, but they took it out and they they did the method of just waiting a few days and letting it pass. So eventually everything passed, thankfully. But it was like okay, something is something's going on. And so the Crohn's was active again and it was with.
Speaker 3:The real issue was also that there was immense amount of scarring that has happened because the medication, the 6-MP, was not. And again I'm like it's as I'm sure you both know, it's like just learning as you're going. I'm like, okay, I didn't know that was a thing, I didn't know having inflammation being active was even bad. I was just like, oh, what's that going to do? That's bad, it's just there. And no one taught me this stuff. So they put me on Humira and again my was working pretty well. And then a few, a few more years go by and it's 2016 and I have another bowel obstruction, but it's very miniature. It's not nothing compared to this 2013 one that was just a mega, excruciating pain. These are like mini pains. I had one in 2016 that went to the hospital. 2017 was I went to the hospital almost every year just with, like the emergency room, just with miniature bowel obstructions that I just let pass Because, again, I didn't know what is the issue with scar, like what is the issue with leaving the scarring there, like the scarring is still there.
Speaker 3:It's just bowel obstructions. Why don't I just modify my diet? So I modified my diet, avoided raw fruits and vegetables, nuts, avoided all those things, but eventually come like 2020, 2021, when I met a gastroenterologist in Brooklyn. He's like so you need to take care of these, these strictures, you can't just leave it here. And I was like, no, I don't, I can just modify my diet. He's like, no, over time this it'll essentially just it'll be so bad that like nothing's going to get through if you leave these here. He's like you have to do surgery, cause I was like so proud of myself, I was like I have Crohn's but I don't have to do surgery. So he's like, no, you, you really do.
Speaker 3:And I I got my first surgery with Crohn's and they took out two feet of small bowel and it was. It was a resection. It was about 60 centimeters of the ileum and it was. It was there were seven, there were wound up being seven strictures and I wrote it down with the with the surgery. So they took out the intestine and it was a side to side functional, end to end, small bowel stapling that they did which. So first of all, another learn as you go moment. I had the surgery and I tell the story on stage.
Speaker 3:Sometimes I didn't know what ileus was, so, and maybe your listeners know, but the best I can describe it if you don't know is essentially just the bowels freeze up after surgery. It's like you spook to the bowels and bile. Everything just freezes and stops moving Again. I had no idea this was a thing, and so I woke up in the hospital in 2022 at 3 am thing. And so I woke up in the hospital in 2022 at 3am just in an immense amount of nausea not pain, but just so nauseous, and I was like I know what I need to drink more. I need to drink some water. So I drank some water, which, not knowing that, created more bile and just made it worse. And also I was. I was calling for people in the hospital, but nobody was coming. It was like 3am and I was like I thought hospitals were staffed but nobody was coming.
Speaker 3:So I was just again reminiscent of 2013. I was just in the fetal position in my bed, being like, please, I just like you know that feeling. You just want to be like disassociated, like can someone just like knock me out, or like just give me a drug that just like takes me out of my body so I can just like look at my body from a distance, so my physical body can experience this, but my brain can go somewhere else like that. I just so wish that's a thing, because it's. It was so bad, that was like the worst nausea I felt.
Speaker 3:So finally, like 7am, someone came in and gave me like a pouch, like a thing behind my ear for nausea. It did nothing and then I basically a few more hours went by and I was like I told him I'm gonna throw up. And they're like Well, we really prefer you don't throw up. And so they said they prefer that I don't. And then finally they gave me. I said I'm going to throw up, I need like a basin. And they gave me a basin, a pink basin, and I stared at the basin and I looked down and I just threw up what looks like just fully black oil, just like from an oil rig. It looks like it came out, it just filled up the entire basin and I was like I don't know what that is, but this feels amazing, like I felt so good that I was like this is out, I feel good.
Speaker 3:And they're like yeah, so that's bile. This is not good necessarily because you have ileus and we need to do NG tube. And those words, just to my brain, just killed. I was like God, you're not going to do an NG tube. But I sort of was just like fuck it, whatever, just do what you need to do. And they did it and eventually they put it in. They did up the nose, down the throat, and my surgeon eventually put me in a suite in the in Weill Cornell and it was wonderful. I was like I've never experienced a suite, because before that I had a roommate and now I had a suite and I had a giant window and I could see the skyline of New York city. I was like, yeah, that's pretty good. Actually, like this is what like wealthy people experience. I was like nice.
Speaker 3:So, anyway, successful, the Crohn's. I got on different medications over the years. I got on Skyrizzy and then Rynvoke, and this is a whole other conversation. But my health insurance keeps denying the Rynvoke because they're like you have Skyrizzy, why do you need Rynvoke? And I'm sure we could talk about this. But Skyrizzy and Rynvoke together are doing an amazing job keeping my Crohn's at bay. They're doing an amazing job, and so that's been successful, luckily. But the thing was I was like great, the surgery's done, I have the strictures out, I'm all good.
Speaker 3:But, as I'm sure you both know, like nothing's ever simple with all of this because what started to happen was I started to go to the bathroom and see blood and at this point I think like 2024, 2023, I started to see blood a lot and I was losing a lot of blood in my body and my hemoglobin levels were like seven or eight, which is not good. It's very low. I do know people who've had even lower. We've had to get blood transfusions, but they're like we don't know exactly what's going on here. And I got all the tests done. They're like there's nothing, like it's nothing that we can really see, but our assumption is that it's remnants of the surgery because of the stapling that they did. That's our assumption is that maybe staples are stuck, but we don't know and we're not really sure how we're going to know.
Speaker 3:So I was like okay, so I did all these tests. Nothing really. I just I. So I started getting iron infusions every single week. They started telling me at the iron infusion they gave me Ferrahim, which is like the mega dose. They're like stop saying this, it doesn't make me feel good. But they also did say I had nice thick juicy veins. So I was like that's. So I was like all right, I'll take that that's a compliment. But eventually they're like you're probably going to need surgery.
Speaker 3:But I tried all these experimental procedures. I did, I did all these other like endoscopies to go up up, did a capsule endoscopy and they're like the capsule got stuck in the area where the staples were and so my gastroenterologist, when he saw the capsule was stuck, he's like so the good news is that we see exactly where, like what, the problem is, and we see the literal like staple lining causing bleeding. So you're literally bleeding internally constantly and so we see that. But the bad news is the capsule stuck and hopefully that passes and also it's clear we need to do surgery now. Eventually the capsule did pass, but it also was like when the capsule was stuck, I think I was just going through like a mental breakdown because I was, it was stuck and I was like fuck, am I gonna get obstruction from this?
Speaker 3:I'm gonna need to get surgery to remove this. It was also the same I think it's the same week that our cat had died, becca, and I read a cat, roger, who was just like this wonderful, wonderful guy and family member. So it was just like a lot happening at once. But I guess that's how life is. So I this is like, as I'm saying this, I'm like this really was a journey.
Speaker 3:But I finally opted to go for the surgery. I was like let's do it. And I went to see one guy and he was like he's an older guy in the city and I met with him and I'm like I'm not really getting a great vibe from him. I was like, oh so you're going to, you'm going to use the finest silk from Egypt. And then, like his whole staff around him just laughed and I was like I don't know what's happening here, I don't know if you're making fun of me, but I'm getting a bad vibe. But I was like vibes don't, maybe vibes don't matter, I'll just go with you, it's fine. And so I was like gonna really go ahead with the surgery.
Speaker 3:But I spoke with Tina, who he had a leak or he or she had a leak after the anastomotic revision and they, I think, went into sepsis. They had sepsis. So she was like I think you should go with this guy. There was a guy in Pittsburgh, but then she also. I think Binion was a gastro and then Cruz was the surgeon. But then she's like or, if you New York, there's a guy Schwartzberg, and I saw Schwartzberg in the city and I I just like this sounds weird, but I was like I fell in love with him instantly. I'm like this guy's amazing, like he's like I've just so rarely had a doctor like that, that was so compassionate. And so, like I was like I was like can I ask another question? He's like, yeah, ask as many questions as you want. Like I'm I surgeon, though I don't know yet. I've had, I've heard good things but I don't know. And so I was like, okay, vibe is good.
Speaker 3:And then eventually I went in this past May for the surgery, cause he's like, yeah, we could do it in a few weeks. And I was like, great, wow, okay. And then I went in for the surgery and my fear was having an ileus. Again, he's like great. And he did. The surgery took out about 10 centimeters. He sent me the video of my intestine that was bleeding, with the staples in it, so I'm happy to share that with anyone listening or you all if you want to see it. I was like this is also really cool that he shares that with me. Cause he's like this is the intestine that's bleeding and I was like that's great. So I had the video and people into body horror too, and she was like she was excited about that. But I yeah, it was successful and I didn't have ileus and the first day or so of the recovery was rough. I really was like again take me out of my body. But after that it was like pretty much smooth sailing and at this point my Crohn's, as far as I know, is in remission and they also removed a hernia that was there. So I'm like I'm pretty good right now Overall. Not to jinx it, but I will say I did have a year in 2021.
Speaker 3:In between all of this that I just went crazy about having acid reflux and because I had this feeling in my throat for a while, and I also had SIBO. So it's all part of the story I had. But the worst thing about SIBO was really just like the gas, like just the farts, smelled terrible, and so it doesn't happen as much now, but at the time it was happening a lot. The farts were really badly smelling and so if I'd watch a movie with Becca, if we'd watch a movie together, I'd be like, okay, I would like we pause and I would just go into the other room and close the door and fart and then let the room deal with the smell and then. But then sometimes I would walk out too soon and Becca's like I still smell it, it's like it's, so I'm like oh crap, okay, it's like dragging into the room, so I'm, but that was. That was the worst that I had from SIBO.
Speaker 3:I don't know if other people have had worse things, but I know people have had pain, I think, with it. I haven't really had that but and the reflux is sort of solved. I know what, what to avoid now. But that's essentially my journey is just the, you know, and but it's really nice talking to other people who have these issues and Tina, honestly, was like a savior and I just have like I really just have a lot of love for her because she really like stepped in and was like don't do this. And I was like, oh, okay, and we need more people like that in the world because look out for each other. So that's my journey.
Speaker 1:Wow, yes, that is definitely a lot happening and yes, you're right, tina is really wonderful and very, very generous with sharing her time and story with people.
Speaker 2:I had SIBO for the first time at the end of last year, or at least I think it's at the end of last year. It could have been longer. From what I know now, it could be a very long time that you have it and you don't even know. I also had smelly farts. But the worst part for me was I had a lot of pain and it could be because I have the J pouch, like the gas wasn't moving. The gas was so horrible but I couldn't get it out, and so I was every night heating pad, gas sets, iv guard, drinking hot water, hot tea, hot lemon water, like whatever I could think of and it was pretty bad.
Speaker 2:For a long time, I honestly thought that I was in a flare again and that my medication was not working anymore, because I've been on the same thing since 2018. And I kept going back to my doctor's office saying like something is wrong and I had a scope, an EDG, I had a capsule endoscopy. I had like so many things done and then finally, maybe four months after I first said, okay, something is seriously wrong here, they did a stool test and I had like four or five bacteria, you know, in my stool and they were like oh, this is definitely bacterial overgrowth in your small bowel, and so I had to do two-week course of two antibiotics and then wait a little while and do another week course of antibiotics. And I'm so grateful that they finally did that, because I feel like a new person now. It's just weird not being in pain every night.
Speaker 2:I'm also like every time something happens where I feel like I'm getting a little bit of gas, I'm like is this happening again? Is it happening again? That has been a wild ride, because my Crohn's and my J pouch and my rectum have been trying to take me out for a while, and so to have something completely different, like raise its hand and say it's my turn to make your life miserable it was wild. And then I found out that it comes back, like it could come back at any time, and so I'm like, okay, this is great, I'm excited about this next phase of my life with this.
Speaker 3:That's interesting. Yeah, I did a breath test and that's how they diagnosed it, but then they gave me the antibiotics and I think it caused a lot of issues beyond the antibiotics. So I was just like I think I stopped it pretty quickly because I was like I know, something happened it's a while ago now but so I was like I think I'm just going to live with this. So I don't even know if I still certain foods, but are you, once you were solved with that, like are you able to go back to foods then that you couldn't while you had SIBO?
Speaker 2:I'm going to say no to that, except for maybe like carbonated beverages. That was definitely off the table, but I still try to stay away from carbonated beverages anyway, and also because of the J pouch, my IBD R and D and I have been trying to work through like the J pouch doesn't like certain preservatives and additives in food, and so I had been trying to work through like really anything that has like a preservative or an additive. There's certain ones that the J pouches just don't like, and so I was trying to work through that anyway. So I feel like the answer is probably no, because I'm just trying to eat food with the least amount of ingredients possible.
Speaker 3:No, I can relate Don't have a J pouch but I can relate just that and that was my experience with reflux and everything, where I was like, oh, I never really paid attention to all this stuff again. Like the food I ate my whole life and I know it's. I know the health and wellness. People talk about it a lot now and a lot of them are. Some are good, some are a little shady. What's wrong with this? I don't what it like and as a 10 year old, I'm like is there any?
Speaker 3:I didn't think there's anything wrong with this. I mean, it's fine once in a while, whatever, but like, yeah, but I started doing that the last few years too. I'm like okay, just like the fewest amount of ingredients. There is something to like whole foods and all that. It's really good to have raw almonds, it's good to have. Like raw nuts, it's good to have. Just have a carrot.
Speaker 3:I'm like I can't have that stuff. I'm terrified of that stuff Because even after my first surgery it was like six months after I'm like I think I can have cashews again. I haven't had nuts in a few years, so I had a bag of raw cashews Again, not knowing that that was bad, so I didn't have to go to the ER, but I was like this is really bad pain and I was like, okay, now I'm now terrified of nuts again. And I and it was another four years before again, tina came in and was like you can she's, like you should try having pistachios and again roasted nuts and the nut butters. Making nut butters and all that stuff is all doable, but it's it's all really scary food anxiety Cause the thing that's supposed to help you is also the thing that can send you to the hospital.
Speaker 1:It's very easy to see, though, how, like, people develop food anxiety, though I mean, like, this is it's so fast where you're like, okay, this makes me feel crappy, and now what else is going to make me feel crappy? I don't want to feel that crappy, you know. And so it's very easy to see how people develop that food anxiety and end up with the five foods they know are safe for them, and then they never deviate from that. And yes, perhaps eating Ritz bits crackers every day for lunch is not the best choice, but if that's what you feel okay with, then definitely having that is not necessarily a bad thing, you know, because fed is best. That is bad.
Speaker 3:There is like something to think about. Sometimes you're just like, obviously some of those are the really healthy things to make you feel bad and the really terrible things to make you feel bad. And there is that, like you said, the safe foods. But, as Robin, you said, having a registered dietitian is so crucial. Like I've actually met my dietitian. I have on Instagram just the Crohn's colitis dietitians and they're great, Like they're so down to earth and like someone guiding you is really helpful because the food anxiety is really really strong and scary.
Speaker 1:Can we take a slight turn, because you mentioned being on stage, why are you on stage? Tell us about this aspect of your life.
Speaker 3:Yeah, for a long time, I mean, I've been very into comedy and performing, but I think I was always too scared to so I would do. I would always circle around it, I would do writing. I was a major in journalism. I've done some journalism work over the years and interviews and interviews with comedians, and I always wanted to be on stage a little bit too, just to see what that was like. And so I went to some stand up open mics in Brooklyn and New York and wasn't really my thing. I'm always really impressed with people who can do it really well. But I was like I don't know if this is my thing, but I do like being on stage.
Speaker 3:So I started putting together these apartment shows, like apartment comedy shows, where someone would be like I want to host a show at my apartment. I'm like great, let's do a show about you know like donuts. Let's do a whole show about donuts. I'll give people free donuts and just you know people that all the comedy will be about donuts. So he did a lot of shows like that and a lot of like music tribute shows. It's actually how I met Becca, because Becca does clowning and was doing like a strong woman act. She ripped a phone book in half and I opened for her with music and it was in an apartment and I was like nice like that's the lady for me, so, anyway, so, but I was do these shows and I really liked doing them.
Speaker 3:And then at some point though, I was like, oh, it'd be cool to do shows about having Crohn's or having autoimmune diseases, because I'm also just curious to hear other people's stories, because I also started getting into the storytelling world, like the moth, like things like that. So I started a show called the autoimmune saloon and that was at a place in Brooklyn like a back of a bar, and I was like great, no-transcript, all right, quickly, how can I quickly find someone else who has a chronic illness in the next hour? But it was really fun show and I really liked doing that because it was beneficial for so many reasons. It was a fun show. I met people in the community and also after the show I met a attendee who was like my sister works at the IBD center at Mount Sinai and I was like, oh, I didn't know that existed. And she's like yeah, they have a test called an intestinal ultrasound which is like one step below colonoscopy in terms of testing and it's much easier. I was like I didn't know about that, she, in terms of testing, and it's much easier. I was like I didn't know about that. She's like, yeah, you should look into this. I started looking into it, I started doing the test. It started helping me, like I just I didn't. My doctor didn't tell me that. And so I and I really liked my doctor, but I just didn't know about these things. So I was like, oh, this is interesting, you're learning. I'm learning something from just doing a show bit and start to meet people in the community more and educate myself more. So yeah, I still perform on stage and I still do a talk about chronic illness.
Speaker 3:And since then I've done different shows. I've done shows about medical debt. It was called Rage Against Medical Debt because it's not going away and nothing's being done about it and I am furious about it every single day and that we all have to just go bankrupt because we're all sick. So I did that show. And then I did a show where I celebrated meeting my health care deductible. And I did that at a friend's venue in Brooklyn and that was great. And then it was really nice because then the New York Times covered it and they're like, yeah, we're going to cover this random guy who celebrated meeting his health care deductible.
Speaker 3:I had cupcakes. They were decorated on the top of it. I had a screenshot of my Weill Cornell patient portal login page. I had hats that said I met my deductible or I didn't meet my deductible. And again I had comedians and I. So I just I don't know. I love putting those shows together. So I'm always interested in doing a New York or across the country. So even if any listeners are like I want to do a show about this and you know, in Maine or Vermont or it doesn't have to be the East Coast but Arizona, I would do that happily because I just it's fun for me. So it's like it's mixing all my passions of just being on stage and writing dumb bits about things and meeting fun people.
Speaker 2:I love that so much and also I celebrate meeting my deductible, but not in the same way. I feel like I need to have one of these parties.
Speaker 3:Absolutely. You should absolutely have a party. I'm happy to help if you need it. I'm glad that you celebrate it too, because it's it is a milestone where weird milestone.
Speaker 1:I'm curious if you noticed any commonalities. So if you had people that were coming from other autoimmune conditions other than obviously the very expensive aspect of living with a chronic illness, were there other common themes that cropped up with some of these folks that were talking and sharing their stories?
Speaker 3:I mean, I guess the one thing I think about is invisible disabilities, where that idea is still strange to me, because I was at a friend's show. There's a guy named Steven Verdale who has a satire magazine called. It's basically like the onion, it's called squeaky with the squeaky wheel and it's great and I highly recommend listeners follow it. He does amazing work, but he organized a whole fest and a festival and I was there and I part of me felt bad for being there because I'm like oh, should I be here? Am I actually like, is this a disability? Is this like? I still grapple with that, but I think seeing the other people being like no, this is like.
Speaker 3:It's an invisible disability you are dealing with the day to day but people might not always know it. Like you know, when my hemoglobin levels were super low because of the staples causing internal bleeding every day, I could barely walk up the stairs in the city. Like the city is, it's not friendly for people with accessibility issues, and so walking up the stairs was like oh, so difficult. I was out of breath immediately and so I felt so out of shape and but nobody would know that I just was like, I just dealt with it silently, and sometimes I would need a seat on the subway. I didn't say anything, though, cause it just looks like, well, you look like a young, and so I just like didn't want to say anything, kept it to myself, and so I did see that a bit with commonalities in terms of other performers who've had that.
Speaker 3:I just also learning about other conditions. Just I think it was sarcoidosis is that the right? This guy like autoimmune that caused serious eyesight where he's like I'm probably gonna go blind in the next few years, and he was a comedian, so he made it funny in a way, but it was, and then a. That's the weird thing too is now I have a whole spreadsheet of comedians and their diseases right next to it. It's like, oh, she has lupus, she has this. It's like it's just a very weird thing that I'm sure most people don't have. So I did see that's the first commonality that comes to mind, and I think it was pretty cathartic, at least to selfishly just see because I'm like, yeah, it's nice to know other people's stories because, you're right, there are these pieces that you look at and you go.
Speaker 1:I can relate to that and I think, especially as I, you know, professionally work more in like the rare disease space, it's really, I think, even more important for that to happen because especially if you have a rare disease and you know or you have a rare form of your disease, like Robin and her, like you know, crohn's in her stomach it's a rarer form of Crohn's, and so you know crones in her stomach it's a rarer form of crones and so you know you start to go. I'm the only one, and so just hearing other people kind of dealing with their own issues, I think is super, super important and I think especially making it funny is helpful. I mean, it's one of the reasons we wanted to make kind of a silly show is because we wanted people to come in and share their stories, but we also do want to have some fun with this and sort of you know, laugh at the pieces that are funny, like celebrating the times where you reach your out-of-pocket max or your deductible.
Speaker 3:I think that's important. Yeah, and I even want to say that, like even today, my uncle is like a volunteer. He's retired, but we were having lunch at he works at, like, the Aviation Museum on Long Island, and we were just having lunch today and he's like, oh, what's going on tonight? Because I was I'm going to be on a podcast. Like what's the podcast? I'm like it's called bowel moments. And then he laughed. He was like he just he gets my my. He's like, you know, if your uncle were, because of his younger brother, my other uncle had Crohn's, if he was still alive, he would love that.
Speaker 1:He would love to listen to that. So you've wanted to be on the stage beginning that you were asking us questions and that this wasn't about us and that, despite the fact that you have done lots of interviews, you're not interviewing us. Does this come from a place of just being curious about people? Is this because you like the sort of medium, like going through your sort of you know your website? You have a lot of you know interviews you've done with various people, lots of celebrities, and then you have also like serious writing and not so serious writing. So you clearly you know you're sort of well first in the entire sort of journalism space, but is there something about that that got you interested?
Speaker 3:Yeah, I mean, I think I do think back to like even college. I remember my journalism professor was like what makes like a good journalist is not even like how smart they are necessarily, it's really just curiosity. Like curiosity is such a crucial component to being a good journalist and to being a good interviewer and I always held that really high. And I think I also look at that with other people too. Like you know, you want to be around other people that are curious. So for myself, yeah, curiosity is a huge thing because I think also psychologically, I always think I have so many blind spots or so many things like what don't I know about myself? What's on it? So there's partially selfish, because I'm like what can I learn about myself? But then know about this thing, what, why is this person doing like? What are the motivations, why are people doing this and why are people acting like this? I just don't, I just like wanting to learn. It's.
Speaker 3:A friend said something to me recently which was interesting. He's like I learned more about my friend and what they like to do and their life from listening to them on a podcast than from just in person hanging out with them in terms of just interviewing. I don't know. I think it was just another thing where I just saw like a lot of benefits with, like I always considered myself somewhat of an introvert. Then I was like no, I actually do that. I don't think I define it correctly, cause I do get a charge from just talking to people. I, even if I don't always like to be, even though I do go on stage, I don't always like to be the center of attention in a group outside of that, cause there's a lot of pressure, but there is something from more self-aware. I'm like okay, again, what don't I know about myself? And so it just helps by learning from other people. So it's mostly selfish, I would say, but but yeah.
Speaker 1:It's interesting you say that, because I think part of what I do love about this show is that, yeah, I love to talk to people, I love to hear their stories and I you do, and but I also think that's not necessarily an introvert versus extrovert thing, like, because, especially since you like to be one-on-one, it could be that you're still an enter, an introvert, but having it a in-person kind of conversation with somebody or having a conversation with one person can still be recharging to you. I think that's the fallacy for introverts is that like it's like they want to be alone. It's not necessarily that they want to be alone, it's not necessarily that they want to be alone, it's just that they like being part of a big group isn't energizing.
Speaker 3:Yeah, exactly, exactly, that's yeah, the one on ones or like the more intimate situation like this are the ones that are great, like I was like oh, I can always do that.
Speaker 1:I can always, as long as the people are friendly and normal and you know so, as you've been doing these interviews and so because you're going into it as, like journalist face, you're just getting to know these people has there been times, though, where, because of your invisible disability, your medical condition, has that been a connection point for you with some of these folks?
Speaker 3:It's like I can think of a standup comedian I interviewed, like years ago, who voiced having a chronic illness, and I was like, oh, I have this too. And then we did start talking about different medications and stuff. I don't know if it enhanced the interview because it was about comedy, though I mean it definitely. I will say I mean this is off topic now, but it did because I did these shows wasn't when, like the whole like Luigi thing happened and they didn't catch him, like I had a bunch of people texting me being like Ian, are you everything okay, like. And so I was like what are you talking about?
Speaker 3:And I had a moment where I was like it was like it was like 6 30 in the morning when they started getting texts and I was like, did I like disassociate and like do something, like whatever? And it's like I just had to process what was happening. I was like no, no, I'm home, I'm with the cats. So I guess I'll. You know, it's not really about interviewing, but just I guess I'm like oh good, I guess I left a mark about.
Speaker 1:I'm leaving some type of mark, I guess, about potentially that is a major sticking point for a lot of people. I don't think that's necessarily a bad message for people to take away, because I don't. I really don't think a lot of people understand fully understand how debilitating it is to know that you have this thing that's going to just cost you so much money. And every time you're lying on your bathroom floor going how much pain am I in and what can I handle? Do I call the ambulance, knowing how expensive that is and what that's going to add to your debt and all these things, I just I don't think people understand that when they don't live with a chronic illness, A hundred percent.
Speaker 3:And also, like you know, you talk about having a chronic illness. It's like I don't know if this is for everybody, I don't want to speak to that, but like it does make things worse. Like I'm not saying it causes the diseases, I don't know. It does make things worse. And so I can think back to a year or two ago and that's what prompted all this like some of these comedy shows too is because I had a like I just randomly got like a five thousand dollar bill from cvs specialty pharmacy and I was what is this? And then going through that process was like it's weird to say it was hell, but it really was. Like it drove me insane. Like even while the phone was ringing and I hadn't spoken to anyone, I was already in like defensive anger mode because I was like I was ready for someone to be like sir, you're going to have to call up your insurance and not speak to the pharmacy. And then, and I was like okay, and then I called the insurance, like no, that's not for us, actually, that's for the pharmacy and the pharmacy as well. Okay, and so it's just that back and forth I would feel my stomach being like I think I have to go to the bathroom now or I yeah it just when I was having spasms. It would make it worse. It was just like okay, this is, but it's just crazy.
Speaker 3:It's like putting us in a corner, have the chronic illness and then having to also have the energy to deal with fixing these issues because we don't have assistants. We don't have like an assistant that's going to call for them. None of us have that. So it's just like well, how many jobs am I doing that are outside of my actual just job, where I have to earn money as well? And it's just like what is this? What is happening? You know, you talk about like the okay, mental health. Having mental health would really help as well, but a lot of therapists like it's going to be $400 a session, great, okay, so who can I take? Is this person not as good as the other person?
Speaker 3:And yeah, it's just a whole maze of figuring things out and I think I don't know, like the moment that something does pop up, like I had a test recently for cholesterol and like my triglycerides were really high and I'm like is this dangerous? Do I have to add another medication to my regimen? Do I have to statin and then the doctor not realizing that Rynvoke might be the reason. It was a cardiologist who didn't even bring up the idea that Rynvoke might be the reason that the levels are high. I didn't know that and yeah, it's stressful. I can't help but think, you know, like my thirties now, but like okay, what's it going to look like in 40 years when you know elder care, all that stuff, and especially as with Crohn's, like it's crazy, you know how, where's the Crohn's going to be in that time? Yeah, it's all constant thoughts on my mind.
Speaker 1:I mean, I think what makes me hopeful about you know, when you're in your forties? I think, from what we're hearing from the researchers and doctors, things are moving quite fast. I think I worry a little bit about, you know, like NIH funding and things like that, slowing some of these things down. But I do know that, like looking at the medications that are coming down the pipelines and looking at the research that's being done, I feel really hopeful that we're finding better options for people. Now whether they can get to them easily or not is always going to be the question, unfortunately, with the American healthcare system, just because of insurance being the way it is. But, like the research is really hopeful to me that we are getting to a place where they're finding better options and so I'm hopeful. I try not to be Pollyanna with this, but I really do feel like the conversations we've had with the doctors that are super, super knowledgeable and the researchers make me feel like that's closer than we think.
Speaker 3:That's really nice to hear. I think, like in the flood of horrible news every day, like this is actually very it's nice that you said that and it's nice to hear. It's nice to know that there's there's a potential defense in the background of like, okay, there's, there are options. You know you have options Cause I know you know, 50 years ago my uncle just had prednisone. I was even talking to my therapist about it. It's like that, you know, like they're just like yeah, generally I'm OK.
Speaker 3:It's just when the medical stuff gets bad, that's when it really like trips you up mentally and the hopelessness not to be such a downer, but like the hopelessness really come into play, where you're just like, yeah, just screw it, like, just whatever, like. But when things are going a little better, it's a little easier to be more hopeful. And talking to a family member about I was going to have a colonosc, at least at this point, and I was like she was like oh, how do you feel about it? I was like I'm excited, cause I I actually do get excited for colonoscopies now, cause I do get excited to be knocked out from the propofol. And then I light, I love waking up and like the feeling it gives.
Speaker 2:The best nap. It's what you go through all the prep for that propofol nap man.
Speaker 3:Yeah, so I, I really like I don't mind going to the bathroom. I was like prep's fine, yeah. And then, exactly once you start, once they like lay you down on the table, I'm like basically just smiling the whole time. I'm like here, we go here. Okay, like this is the moment I've been waiting for and so like I'm so excited. But I remember telling a family I'm like, oh, I can't wait for them, just like knock me out. And she's like wait, why would you be excited about that it? But I was like that's, it's just, it was interesting, that reaction. I was like, oh, I'm so used to talking to people in the community. They're like, oh my god, like how, robin. Your response is exactly like that's how friends in the community usually react, where it's like, yeah, oh my god, propofol is amazing, it's so. So it's until you live it. Like you kind of understand it, but otherwise it can sound morbid, otherwise that you just want to be knocked out.
Speaker 2:But it's like, no, it's, it's, it's a wonderful nap I mean, if I had easy access to propofol naps, I could 100 just be like yeah, hit me with another propofol nap can I ask you a quick question, clowning?
Speaker 1:oh yeah what, what, what kind of clowning does she do like? Where is she clowning I?
Speaker 3:think the best thing, the way she because I, because I think the first thing comes to mind is always like birthday clown, but how she described it to me like what? Well, let's just think of like Charlie Chaplin or physical comedy, clowning, and yeah, and she's done, like, she's done solo shows that are really good and she's done all that stuff she did. Right now she does hospital clowning so cute. So she works for a company called Laughter League and they do hospital clowning and they literally go into hospitals and they wear the clown nose but they don't dress as clowns because that, you know, that's yeah, and they go into different rooms and just kind of entertain the kids and learning about all this.
Speaker 3:I'm just like man, I wish this is a thing even for adults. Like we need things like this so much because hospitals are I mean again, I'm not going to get us into a tangent about that, but just it's, hospitals are so depressing that I would love to have at the very least for kids to have. That is wonderful, and so, yeah, I wish there was more funding for all that too. That's a separate thing, but uh, yeah, so that's the clowning she's doing now and it's fun and so she'll. She will say things to me like my nose didn't come in the mail yet and I'm like, oh, like, but it's a very like serious issue. And I'm like, oh, I mean it is, and she just like needs it for work, but I was like I just like never thought I'd hear that phrase, or like yeah, cute.
Speaker 1:I'm glad because I also I'm very afraid of clowns, and so I was like, oh god, I hope she doesn't come into the room no, no, no suddenly just hang up on you.
Speaker 1:No, no, I think that I agree with you. We've talked about this a number of times about how like it would be nice if there were aspects of the pediatric system that extended into the adult system. Like like child life specialists are wonderful, like they're people that just like explain to you in layman's terms or in kid terms, like what's going to happen, and check on you and bring you like coloring books and like make sure that they are in an environment that feels safer and comfortable, and like clowns and dogs and like all the stuff that they do in these pediatric systems like especially the big systems that is like just kind of keeps people wrapped up in a nice little like you know hug. That kind of helps them through, and so that'd be nice.
Speaker 2:And it is obvious that Alicia and I could talk to you for probably another two hours, because that's how long we've been talking to you, but unfortunately it is time for me to ask the final question of the show, and that is what is the one thing that you want the IBD community to know?
Speaker 3:I thought of two things that I will not expand too long on, but it's something I keep saying to people, depending on what your state you're in, if you're not doing this already, please record everything with your doctor visits. It's better if you can ask them. Of course can I record, but sometimes if you don't feel comfortable doing it, it's OK, just do it for yourself. You're not going to, you're not going to publicize it. Record you open voice memos. Record because I can say for myself I have had so many sessions with doctors where I'd walk out and be like wait, what did they say? Wait, what did I ask? And so I get snippets. I'm like, well, that's dumb, like I should treat it like I do with comedy, where I'm like I'm going to record my set. What can I do better? What did I learn from this? Same thing with doctor's visits Like, oh, they said this, I didn't really. Oh, that's what that meant.
Speaker 3:Because in the know, I mentioned Tina, I think, a few times in this and that is a huge thing, and the only reason I met Tina was because of community, and so I know it's probably hard because it feels so isolating and when you do feel hopeless, you don't want to meet anybody or talk to anybody, so but if you can find those moments to figure out a way to meet a community of people who are like you and are going through the same thing, it is, it will kind of change everything, because it is good to listen to doctors you trust, but sometimes doctors will not recommend the best surgeons. Sometimes the people in the community will recommend the best surgeons and people you trust, and so that's going to be really key to at least find one person that's the community, just at least one person who can help with that. So find people like Tina.
Speaker 2:I want to reiterate that sometimes doctors don't recommend the best surgeon. Alicia and I have talked about this before making sure that you have time to meet with a surgeon in advance. Don't be scared of surgery. It's a part of having IBD that a lot of us will have to experience. And the sooner that you can meet with a surgeon just to talk about it and get an idea of what that surgeon is like, that gives you an opportunity to say like you know what, I don't know if that guy and I or that woman and I vibe like maybe I should go and see if there are other surgeons out there in case I have to have surgery. Because when you're in a situation where it's an emergency and you don't have time to do that, or you have to make a decision quick, or you go to the emergency room and they just you know. It's better to know what's going to happen in advance in a safe environment, when it's not emergent.
Speaker 3:That is really great advice and that I actually want to just ask you then, robin, like with surgery then, because I've only had two surgeries the first surgeon I had I did not give me good vibes but I was like, oh, she's recommended. Second surgeon did Schwartzberg and he was very good. But how important are vibes? Because I know they're important, but if the surgeon is amazing, do you throw vibes out the window?
Speaker 2:I threw vibes out the window because the surgeon was supposed to be amazing. And that was the surgery that I had so many complications on and had very poor care afterwards, and the first surgeon that I had almost 26 years ago. He was like the chief of surgery for that hospital and also vibes off the chart, like just decent person, and seemed like a cool dude. And then, after the surgery that went wrong, I reached out to a surgeon that I knew and trusted professionally and I said who would you recommend? And he was like I'm going to take you. And then when we talked to Schwartzberg, I was like, if I have to have another, like I'm going to take you.
Speaker 1:And then when we talked to Schwartzberg, I was like if I have to have another surgery, I'm going to New York. We literally could just keep talking to you, ian. This is lovely to chat with you, but we really have to hang up now. So thank you so so much, ian, for joining us. This has been such a pleasure to get to know you and to hear more about your story.
Speaker 3:And thank you, and I'm going to take my empty glass and cheers to you guys Cheers, cheers, cheers. Thank you so much. Hi, this is Ian Goldstein, and if you enjoyed this episode, please rate, review, subscribe and share with a friend.
