September 24, 2025 • 45 mins
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!!
Let's get social!!
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Alicia and I'm Robin and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to IanGoldstein.
Ian is living with Crohn'sdisease and vitiligo and he has
a family history of inflammatorybowel disease.
(00:20):
We talked to him about beingdiagnosed at 16.
We talked to him about bowelobstructions and surgery.
We talked to him about SIBO andwe talked to him about being
diagnosed at 16.
We talked to him about bowelobstructions and surgery.
We talked to him about SIBO andwe talked to him about
combination therapy.
We talked to him about findingcommunity and, best of all, we
talked to him about how he'sturned his Crohn's disease and
dealing with healthcare intocomedy Cheers.
Speaker 2 (00:42):
Hi everybody, Welcome to Bowel Moments.
Speaker 1 (00:44):
This is Robin.
Hey everyone, this is Aliciaand we are absolutely delighted
to be joined by Ian Goldstein.
Ian, welcome to the show.
Speaker 3 (00:51):
Thank you, Alicia and Robin, for having me.
Speaker 1 (00:53):
Well, we are very, very excited to get into your
story.
But very first unprofessionalquestion for you is what are you
drinking?
Speaker 3 (00:59):
Okay, yeah, literally right now I'm drinking out of a
mug with my initial on it thathas I.
Yeah, literally right now I'mdrinking out of a mug with my
initial on it that has I.
My fiance has an initial Bbecause her name is Becca, or
Rebecca Becca, but I'm drinkingwater right now.
But I was thinking about thisquestion more like deeper than I
should when you.
So I'm drinking water now, butI'm like, well, technically, I'm
also drinking like what's adrink?
I can say, and I was like, oh,I started drinking matcha in
(01:21):
like the last year or so, sothat's, that's been pretty
exciting.
It's a very Brooklyn-y thing tosay, I guess.
So that's why I do feel awkwardwhen I order at a cafe.
I'm like can I have a matchalatte?
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, whichis way too much money.
But water and matcha, I guess,yeah.
Speaker 2 (01:38):
Matcha is quite grassy isn't it?
Speaker 1 (01:40):
I think so Like.
It's like coffee, you know,when you first drink it you're
like, no, it has to have likeseven packets of sugar in it.
And then eventually you getdown to where you need less and
less sugar and it might be anacquired taste.
Speaker 3 (01:48):
I think it is.
If once you add milk, it'sexciting, and definitely when
you add sugar, it's veryexciting.
But I also I do like whenthings taste bad, sometimes I'm
like, oh, it tastes terrible,but it's, it's healthy, so I'm
(02:09):
doing something good for my body.
So, yeah, this is probably somepsychological things here we
can discuss.
Speaker 1 (02:13):
But yeah, yeah, I'm sure there's probably some
psychologists that are listeningthat are like we'd like to talk
to you, robin.
What are you drinking?
Speaker 2 (02:18):
You multiple beverages.
So my daughter is visitingright now.
She's in town and she wascraving a Sonic slushie and I'm
going to tell you I have not hadone of those.
I can't tell you, the last timeI had one.
So I'm drinking a CherryLimeade slushie and it is
delightful.
Speaker 1 (02:37):
I love it.
Alicia what are you drinking,robin?
I am delighted to tell you thatI am drinking a Hillstone Crisp
Martini Fancy, I know.
So it is rose and elderflowergin, and then it's elderflower
liqueur, lemon juice, and thenyou top it with some Sauvignon
Blanc, so like all of myfavorite things, like in a glass
(02:59):
.
So I'm pretty excited about it.
I've not had a drink yet, so Iwanted to honor you guys with my
first sip.
So cheers, guys, cheers, cheers.
That's really good, that'sdangerous.
Okay, and next question for youis tell us your IBD story.
What brought you into ourcommunity?
Speaker 3 (03:16):
Yes, oh, I, about 20 years ago, in 2007, 2007, I was
16.
And I was diagnosed withCrohn's didn't know it was
Crohn's right away because itwas 11th grade and, as I'm sure
you both know, like 11th gradeis terrible.
High school is like slowlystarting to get better.
But I mean, I remember being inchemistry class.
I'm like I have to go to thebathroom.
I have to go to the bathroomagain and I'm like it's probably
(03:37):
just stress, because I'mstressed about SATs.
You know the, the daily 7am to3.30pm school schedule, which is
the worst thing ever.
I'm stressed about SATs goingto college.
So I'm like it's just stress,it's fine.
And I have an afterschool job ata supermarket and I remember
someone coming up to me at myjob and said you look really
thin.
At that time I was very adamant.
I'm like, oh, that's acompliment, that's a good thing,
no-transcript.
(04:10):
She was like no, no, no, youlook like really thin, I okay,
I'm all right, I'm okay.
And like I don't know what thatis.
And then I saw I don't know, Iwon't call it a fistula, but it
was something just between thatarea around my groin area where
(04:31):
I was like, oh, this is likethere's like pus coming out.
So it's like all these mixturesof things happening.
I'm like I got a colonoscopy andthey're like you have Crohn's.
So I was 16 years old and Ihave Crohn's disease and even
before the colonoscopy I'm likeI'm having a colonoscopy at 16
(04:51):
years old.
That's crazy.
Like I thought this was likefor 50, 60 year olds.
So I was diagnosed I hadCrohn's and then put me on an
ask call and I was like this isnot helping at all.
So I my mom me and my mom causemy mom would come for every
visit and we would switch,switch to a different doctor who
was younger, kind of lookedlike Jerry Seinfeld.
So I was like so it's kind ofhard to look directly at his
(05:16):
face Cause I'm like you lookexactly like Seinfeld is my
gastroenterologist.
But he he put me on Entacort, asteroid, and then that started
really helping.
And then eventually he got meon 6MP and I was good.
I was like I feel normal, likethe all the symptoms like
started dissipating.
I was like I think I'm good, Idon't really, I don't need
surgery, I'm fine.
Again, this was 2007.
So that that stayed like thatfor the next few years.
(05:39):
I was like I think I'm likejust good now.
I don't really.
I didn't have to alter my diettoo much, but I remember it was
the first time.
I also remember feeling beforethe medication, before getting
that when I first got Crohn'sthe feeling of not feeling
hungry and not wanting to eatand being nauseated by food.
And I remember my mom coming upto me being like oh, I'm so
jealous of you.
I wish I had that ability to belike.
(06:01):
I was like you don to feelbetter.
I, you know I went to collegeand everything was fine.
And then, by senior year 2013,it was during Passover I had was
on the Passover diet, which wasmatzah, and I enjoy the diet.
I actually like matzah withcream cheese.
It's pretty exciting to me, butI, so I had a lot of matzah.
And then I walked into myapartment at the time on campus
and I was like I walked into theroom, I felt this immense
amount of pain that I've neverexperienced in my life.
(06:23):
I'm like it was a sharp painthat is like hard to describe
now, even because I'm notexperiencing 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 Kepthappening.
I was like I must beconstipated from all the matzah.
That must be what's happening.
So I was fiber, nothing aboutit.
I had it and then the pain,which was already really bad,
(06:46):
amplified by like a hundred andjust 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 apartmentand I was.
I was like I have to get on theground, I cannot like.
I like a doctor prescribed mepain medication.
It did nothing.
I started throwing up and thenI started, and then I went to
the bathroom.
I was like I just maybe I justneed to like get this out the
other way, just a bowel movement.
And I went and it was black, itwas fully black.
(07:08):
I was like, okay, somethingreally weird is going on here,
alarming.
And then I was just I was juston the bathroom and I was like I
called to my apartment mate andhe called the, called an
ambulance.
I went to the hospital andthey're like you have a bowel
obstruction, absolutely Bowelobstruction.
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 anNG tube before and I was like
this is a modern day torturedevice.
(07:29):
Cause I was like what do you do?
I didn't know this existed.
You have to jam this up my noseand down my throat and into it,
and you feel it dangling inyour throat when it's in.
And so I was just like, oh myGod, like this is hell.
And at like 3am I have vitiligoby the way, it's another
autoimmune condition that's notrisky in any way.
But I remember a doctor whoalso had vitiligo then came in
and looked at me with like suchpitiful eyes at like 3am and I
(07:51):
was just like because I was justlike my eyes were wide and not
talking, so every time I talkedI had to, I was like choking on
the NG tube.
And so he came in.
He was like he's like we'regonna take it out.
I was like, okay, like notknowing if they should or not,
but they took it out and theythey did the method of just
waiting a few days and lettingit pass.
So eventually everything passed, thankfully.
(08:11):
But it was like okay, somethingis something's going on.
And so the Crohn's was activeagain and it was with.
The real issue was also thatthere was immense amount of
scarring that has happenedbecause the medication, the 6-MP
, was not.
And again I'm like it's as I'msure you both know, it's like
just learning as you're going.
I'm like, okay, I didn't knowthat was a thing, I didn't know
having inflammation being activewas even bad.
I was just like, oh, what'sthat going to do?
(08:32):
That's bad, it's just there.
And no one taught me this stuff.
So they put me on Humira andagain my was working pretty well
.
And then a few, a few moreyears go by and it's 2016 and I
have another bowel obstruction,but it's very miniature.
It's not nothing compared tothis 2013 one that was just a
mega, excruciating pain.
These are like mini pains.
(08:52):
I had one in 2016 that went tothe hospital.
2017 was I went to the hospitalalmost every year just with,
like the emergency room, justwith miniature bowel
obstructions that I just letpass Because, again, I didn't
know what is the issue with scar, like what is the issue with
leaving the scarring there, likethe scarring is still there.
It's just bowel obstructions.
Why don't I just modify my diet?
So I modified my diet, avoidedraw fruits and vegetables, nuts,
avoided all those things, buteventually come like 2020, 2021,
(09:15):
when I met a gastroenterologistin Brooklyn.
He's like so you need to takecare of these, these strictures,
you can't just leave it here.
And I was like, no, I don't, Ican just modify my diet.
He's like, no, over time thisit'll essentially just it'll be
so bad that like nothing's goingto get through if you leave
these here.
He's like you have to dosurgery, cause I was like so
(09:36):
proud of myself, I was like Ihave Crohn's but I don't have to
do surgery.
So he's like, no, you, youreally do.
And I I got my first surgerywith Crohn's and they took out
two feet of small bowel and itwas.
It was a resection.
It was about 60 centimeters ofthe ileum and it was.
It was there were seven, therewere wound up being seven
strictures and I wrote it downwith the with the surgery.
So they took out the intestineand it was a side to side
(09:59):
functional, end to end, smallbowel stapling that they did
which.
So first of all, another learnas you go moment.
I had the surgery and I tellthe story on stage.
Sometimes I didn't know whatileus was, so, and maybe your
listeners know, but the best Ican describe it if you don't
know is essentially just thebowels freeze up after surgery.
It's like you spook to thebowels and bile.
Everything just freezes andstops moving Again.
I had no idea this was a thing,and so I woke up in the
(10:21):
hospital in 2022 at 3 am thing.
And so I woke up in thehospital in 2022 at 3am just in
an immense amount of nausea notpain, but just so nauseous, and
I was like I know what I need todrink 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 thehospital, but nobody was coming
.
It was like 3am and I was likeI thought hospitals were staffed
(10:42):
but nobody was coming.
So I was just again reminiscentof 2013.
I was just in the fetalposition in my bed, being like,
please, I just like you knowthat feeling.
You just want to be likedisassociated, like can someone
just like knock me out, or likejust give me a drug that just
like takes me out of my body soI can just like look at my body
from a distance, so my physicalbody can experience this, but my
brain can go somewhere elselike that.
I just so wish that's a thing,because it's.
(11:03):
It was so bad, that was likethe worst nausea I felt.
So finally, like 7am, someonecame in and gave me like a pouch
, like a thing behind my ear fornausea.
It did nothing and then Ibasically a few more hours went
by and I was like I told him I'mgonna throw up.
And they're like Well, wereally prefer you don't throw up
.
And so they said they preferthat I don't.
(11:24):
And then finally they gave me.
I said I'm going to throw up, Ineed like a basin.
And they gave me a basin, apink basin, and I stared at the
basin and I looked down and Ijust threw up what looks like
just fully black oil, just likefrom an oil rig.
It looks like it came out, itjust filled up the entire basin
and I was like I don't know whatthat is, but this feels amazing
, like I felt so good that I waslike this is out, I feel good.
(11:45):
And they're like yeah, so that'sbile.
This is not good necessarilybecause you have ileus and we
need to do NG tube.
And those words, just to mybrain, just killed.
I was like God, you're notgoing to do an NG tube.
But I sort of was just likefuck it, whatever, just do what
you need to do.
And they did it and eventuallythey put it in.
They did up the nose, down thethroat, and my surgeon
eventually put me in a suite inthe in Weill Cornell and it was
(12:07):
wonderful.
I was like I've neverexperienced a suite, because
before that I had a roommate andnow I had a suite and I had a
giant window and I could see theskyline of New York city.
I was like, yeah, that's prettygood.
Actually, like this is whatlike wealthy people experience.
I was like nice.
So, anyway, successful, theCrohn's.
I got on different medicationsover the years.
I got on Skyrizzy and thenRynvoke, and this is a whole
other conversation.
But my health insurance keepsdenying the Rynvoke because
(12:29):
they're like you have Skyrizzy,why do you need Rynvoke?
And I'm sure we could talkabout this.
But Skyrizzy and Rynvoketogether 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 likegreat, the surgery's done, I
have the strictures out, I'm allgood.
But, as I'm sure you both know,like nothing's ever simple with
(12:50):
all of this because what startedto happen was I started to go
to the bathroom and see bloodand at this point I think like
2024, 2023, I started to seeblood a lot and I was losing a
lot of blood in my body and myhemoglobin levels were like
seven or eight, which is notgood.
It's very low.
(13:11):
I do know people who've hadeven lower.
We've had to get bloodtransfusions, but they're like
we don't know exactly what'sgoing 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 assumptionis that it's remnants of the
surgery because of the staplingthat they did.
That's our assumption is thatmaybe staples are stuck, but we
don't know and we're not reallysure how we're going to know.
So I was like okay, so I did allthese tests.
(13:31):
Nothing really.
I just I.
So I started getting ironinfusions every single week.
They started telling me at theiron infusion they gave me
Ferrahim, which is like the megadose.
They're like stop saying this,it doesn't make me feel good.
But they also did say I hadnice thick juicy veins.
So I was like that's.
So I was like all right, I'lltake that that's a compliment.
(13:58):
But eventually they're likeyou're probably going to need
surgery.
But I tried all theseexperimental procedures.
I did, I did all these otherlike endoscopies to go up up,
did a capsule endoscopy andthey're like the capsule got
stuck in the area where thestaples were and so my
gastroenterologist, when he sawthe capsule was stuck, he's like
so the good news is that we seeexactly where, like what, the
problem is, and we see theliteral like staple lining
causing bleeding.
(14:18):
So you're literally bleedinginternally constantly and so we
see that.
But the bad news is the capsulestuck and hopefully that passes
and also it's clear we need todo surgery now.
Eventually the capsule did pass, but it also was like when the
capsule was stuck, I think I wasjust going through like a
mental breakdown because I was,it was stuck and I was like fuck
, am I gonna get obstructionfrom this?
I'm gonna need to get surgery toremove this.
(14:38):
It was also the same I thinkit's the same week that our cat
had died, becca, and I read acat, roger, who was just like
this wonderful, wonderful guyand family member.
So it was just like a lothappening at once.
But I guess that's how life is.
So I this is like, as I'msaying this, I'm like this
really was a journey.
But I finally opted to go forthe surgery.
I was like let's do it.
And I went to see one guy andhe was like he's an older guy in
(15:12):
the city and I met with him andI'm like I'm not really getting
a great vibe from him.
I was like, oh so you're goingto, you'm going to use the
finest silk from Egypt.
And then, like his whole staffaround him just laughed and I
was like I don't know what'shappening here, I don't know if
you're making fun of me, but I'mgetting a bad vibe.
But I was like vibes don't,maybe vibes don't matter, I'll
(15:36):
just go with you, it's fine.
And so I was like gonna reallygo ahead with the surgery.
But I spoke with Tina, who hehad a leak or he or she had a
leak after the anastomoticrevision and they, I think, went
into sepsis.
They had sepsis.
So she was like I think youshould go with this guy.
There was a guy in Pittsburgh,but then she also.
I think Binion was a gastro andthen Cruz was the surgeon.
But then she's like or, if youNew York, there's a guy
(16:00):
Schwartzberg, and I sawSchwartzberg 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 waslike can I ask another question?
(16:20):
He's like, yeah, ask as manyquestions as you want.
Like I'm I surgeon, though Idon't know yet.
I've had, I've heard goodthings but I don't know.
And so I was like, okay, vibeis good.
And then eventually I went inthis past May for the surgery,
cause he's like, yeah, we coulddo it in a few weeks.
And I was like, great, wow,okay.
And then I went in for thesurgery and my fear was having
an ileus.
Again, he's like great.
(16:40):
And he did.
The surgery took out about 10centimeters.
He sent me the video of myintestine that was bleeding,
with the staples in it, so I'mhappy to share that with anyone
listening or you all if you wantto see it.
I was like this is also reallycool that he shares that with me
.
Cause he's like this is theintestine that's bleeding and I
was like that's great.
So I had the video and peopleinto body horror too, and she
was like she was excited aboutthat.
(17:01):
But I yeah, it was successfuland I didn't have ileus and the
first day or so of the recoverywas rough.
I really was like again take meout of my body.
But after that it was likepretty much smooth sailing and
at this point my Crohn's, as faras I know, is in remission and
they also removed a hernia thatwas there.
So I'm like I'm pretty goodright now Overall.
Not to jinx it, but I will sayI did have a year in 2021.
(17:22):
In between all of this that Ijust went crazy about having
acid reflux and because I hadthis feeling in my throat for a
while, and I also had SIBO.
So it's all part of the story Ihad.
But the worst thing about SIBOwas really just like the gas,
like just the farts, smelledterrible, and so it doesn't
happen as much now, but at thetime it was happening a lot.
(17:48):
The farts were really badlysmelling and so if I'd watch a
movie with Becca, if we'd watcha movie together, I'd be like,
okay, I would like we pause andI would just go into the other
room and close the door and fartand then let the room deal with
the smell and then.
But then sometimes I would walkout 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, soI'm, but that was.
That was the worst that I hadfrom SIBO.
I don't know if other peoplehave had worse things, but I
know people have had pain, Ithink, with it.
(18:08):
I haven't really had that butand the reflux is sort of solved
.
I know what, what to avoid now.
But that's essentially myjourney is just the, you know,
and but it's really nice talkingto other people who have these
issues and Tina, honestly, waslike a savior and I just have
like I really just have a lot oflove for her because she really
like stepped in and was likedon't do this.
And I was like, oh, okay, andwe need more people like that in
(18:29):
the world because look out foreach other.
So that's my journey.
Speaker 1 (18:32):
Wow, yes, that is definitely a lot happening and
yes, you're right, tina isreally wonderful and very, very
generous with sharing her timeand story with people.
Speaker 2 (18:39):
I had SIBO for the first time at the end of last
year, or at least I think it'sat the end of last year.
It could have been longer.
From what I know now, it couldbe 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 Ihad a lot of pain and it could
be because I have the J pouch,like the gas wasn't moving.
(19:02):
The gas was so horrible but Icouldn't get it out, and so I
was every night heating pad, gassets, iv guard, drinking hot
water, hot tea, hot lemon water,like whatever I could think of
and it was pretty bad.
For a long time, I honestlythought that I was in a flare
again and that my medication wasnot working anymore, because
(19:23):
I've been on the same thingsince 2018.
And I kept going back to mydoctor's office saying like
something is wrong and I had ascope, an EDG, I had a capsule
endoscopy.
I had like so many things doneand then finally, maybe four
months after I first said, okay,something is seriously wrong
here, they did a stool test andI had like four or five bacteria
(19:47):
, you know, in my stool and theywere like oh, this is
definitely bacterial overgrowthin your small bowel, and so I
had to do two-week course of twoantibiotics and then wait a
little while and do another weekcourse of antibiotics.
And I'm so grateful that theyfinally did that, because I feel
like a new person now.
It's just weird not being inpain every night.
I'm also like every timesomething happens where I feel
(20:08):
like I'm getting a little bit ofgas, 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 beentrying to take me out for a
while, and so to have somethingcompletely different, like raise
its hand and say it's my turnto make your life miserable it
was wild.
And then I found out that itcomes back, like it could come
(20:29):
back at any time, and so I'mlike, okay, this is great, I'm
excited about this next phase ofmy life with this.
Speaker 3 (20:35):
That's interesting.
Yeah, I did a breath test andthat's how they diagnosed it,
but then they gave me theantibiotics and I think it
caused a lot of issues beyondthe antibiotics.
So I was just like I think Istopped it pretty quickly
because I was like I know,something happened it's a while
ago now but so I was like Ithink I'm just going to live
with this.
So I don't even know if I stillcertain foods, but are you,
once you were solved with that,like are you able to go back to
(20:56):
foods then that you couldn'twhile you had SIBO?
Speaker 2 (20:59):
I'm going to say no to that, except for maybe like
carbonated beverages.
That was definitely off thetable, but I still try to stay
away from carbonated beveragesanyway, and also because of the
J pouch, my IBD R and D and Ihave been trying to work through
like the J pouch doesn't likecertain preservatives and
additives in food, and so I hadbeen trying to work through like
(21:20):
really anything that has like apreservative or an additive.
There's certain ones that the Jpouches just don't like, and so
I was trying to work throughthat anyway.
So I feel like the answer isprobably no, because I'm just
trying to eat food with theleast amount of ingredients
possible.
Speaker 3 (21:33):
No, I can relate Don't have a J pouch but I can
relate just that and that was myexperience 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 wholelife and I know it's.
I know the health and wellness.
People talk about it a lot nowand a lot of them are.
Some are good, some are alittle shady.
(21:54):
What's wrong with this?
I don't what it like and as a10 year old, I'm like is there
any?
I didn't think there's anythingwrong with this.
I mean, it's fine once in awhile, whatever, but like, yeah,
but I started doing that thelast few years too.
I'm like okay, just like thefewest amount of ingredients.
There is something to likewhole foods and all that.
It's really good to have rawalmonds, it's good to have.
(22:15):
Like raw nuts, it's good tohave.
Just have a carrot.
I'm like I can't have that stuff.
I'm terrified of that stuffBecause even after my first
surgery it was like six monthsafter I'm like I think I can
have cashews again.
I haven't had nuts in a fewyears, so I had a bag of raw
cashews Again, not knowing thatthat was bad, so I didn't have
to go to the ER, but I was likethis is really bad pain and I
(22:36):
was like, okay, now I'm nowterrified of nuts again.
And I and it was another fouryears before again, tina came in
and was like you can she's,like you should try having
pistachios and again roastednuts and the nut butters.
Making nut butters and all thatstuff is all doable, but it's
it's all really scary foodanxiety Cause the thing that's
supposed to help you is also thething that can send you to the
hospital.
Speaker 1 (22:55):
It's very easy to see , though, how, like, people
develop food anxiety, though Imean, like, this is it's so fast
where you're like, okay, thismakes me feel crappy, and now
what else is going to make mefeel crappy?
I don't want to feel thatcrappy, you know.
And so it's very easy to seehow people develop that food
anxiety and end up with the fivefoods they know are safe for
them, and then they neverdeviate from that.
And yes, perhaps eating Ritzbits crackers every day for
(23:15):
lunch is not the best choice,but if that's what you feel okay
with, then definitely havingthat is not necessarily a bad
thing, you know, because fed isbest.
That is bad.
Speaker 3 (23:24):
There is like something to think about.
Sometimes you're just like,obviously some of those are the
really healthy things to makeyou feel bad and the really
terrible things to make you feelbad.
And there is that, like yousaid, the safe foods.
But, as Robin, you said, havinga registered dietitian is so
crucial.
Like I've actually met mydietitian.
I have on Instagram just theCrohn's colitis dietitians and
they're great, Like they're sodown to earth and like someone
(23:45):
guiding you is really helpfulbecause the food anxiety is
really really strong and scary.
Speaker 1 (23:47):
Can we take a slight turn, because you mentioned
being on stage, why are you onstage?
Tell us about this aspect ofyour life.
Speaker 3 (23:53):
Yeah, for a long time , I mean, I've been very into
comedy and performing, but Ithink 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 workover the years and interviews
and interviews with comedians,and I always wanted to be on
stage a little bit too, just tosee what that was like.
And so I went to some stand upopen mics in Brooklyn and New
York and wasn't really my thing.
I'm always really impressedwith people who can do it really
(24:14):
well.
But I was like I don't know ifthis is my thing, but I do like
being on stage.
So I started putting togetherthese apartment shows, like
apartment comedy shows, wheresomeone would be like I want to
host a show at my apartment.
I'm like great, let's do a showabout you know like donuts.
Let's do a whole show aboutdonuts.
I'll give people free donutsand just you know people that
all the comedy will be aboutdonuts.
So he did a lot of shows likethat and a lot of like music
(24:34):
tribute shows.
It's actually how I met Becca,because Becca does clowning and
was doing like a strong womanact.
She ripped a phone book in halfand I opened for her with music
and it was in an apartment andI was like nice like that's the
lady for me, so, anyway, so, butI was do these shows and I
really liked doing them.
And then at some point though, Iwas like, oh, it'd be cool to
do shows about having Crohn's orhaving autoimmune diseases,
(24:54):
because I'm also just curious tohear other people's stories,
because I also started gettinginto the storytelling world,
like the moth, like things likethat.
So I started a show called theautoimmune saloon and that was
at a place in Brooklyn like aback of a bar, and I was like
great, no-transcript, all right,quickly, how can I quickly find
(25:25):
someone else who has a chronicillness in the next hour?
But it was really fun show andI really liked doing that
because it was beneficial for somany reasons.
It was a fun show.
I met people in the communityand also after the show I met a
attendee who was like my sisterworks at the IBD center at Mount
Sinai and I was like, oh, Ididn't know that existed.
And she's like yeah, they havea test called an intestinal
(25:47):
ultrasound which is like onestep below colonoscopy in terms
of testing and it's much easier.
I was like I didn't know aboutthat, she, in terms of testing,
and it's much easier.
I was like I didn't know aboutthat.
She's like, yeah, you shouldlook into this.
I started looking into it, Istarted doing the test.
It started helping me, like Ijust I didn't.
My doctor didn't tell me that.
And so I and I really liked mydoctor, but I just didn't know
about these things.
So I was like, oh, this isinteresting, you're learning.
I'm learning something fromjust doing a show bit and start
(26:13):
to meet people in the communitymore and educate myself more.
So yeah, I still perform onstage and I still do a talk
about chronic illness.
And since then I've donedifferent shows.
I've done shows about medicaldebt.
It was called Rage AgainstMedical Debt because it's not
going away and nothing's beingdone about it and I am furious
about it every single day andthat we all have to just go
bankrupt because we're all sick.
So I did that show.
(26:34):
And then I did a show where Icelebrated meeting my health
care deductible.
And I did that at a friend'svenue in Brooklyn and that was
great.
And then it was really nicebecause then the New York Times
covered it and they're like,yeah, we're going to cover this
random guy who celebratedmeeting his health care
deductible.
I had cupcakes.
They were decorated on the topof it.
I had a screenshot of my WeillCornell patient portal login
(26:55):
page.
I had hats that said I met mydeductible 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 showstogether.
So I'm always interested indoing a New York or across the
country.
So even if any listeners arelike I want to do a show about
this and you know, in Maine orVermont or it doesn't have to be
the East Coast but Arizona, Iwould do that happily because I
(27:16):
just it's fun for me.
So it's like it's mixing all mypassions of just being on stage
and writing dumb bits aboutthings and meeting fun people.
Speaker 2 (27:23):
I love that so much and also I celebrate meeting my
deductible, but not in the sameway.
I feel like I need to have oneof these parties.
Speaker 3 (27:30):
Absolutely.
You should absolutely have aparty.
I'm happy to help if you needit.
I'm glad that you celebrate ittoo, because it's it is a
milestone where weird milestone.
Speaker 1 (27:39):
I'm curious if you noticed any commonalities.
So if you had people that werecoming from other autoimmune
conditions other than obviouslythe very expensive aspect of
living with a chronic illness,were there other common themes
that cropped up with some ofthese folks that were talking
and sharing their stories?
Speaker 3 (27:54):
I mean, I guess the one thing I think about is
invisible disabilities, wherethat idea is still strange to me
, because I was at a friend'sshow.
There's a guy named StevenVerdale who has a satire
magazine called.
It's basically like the onion,it's called squeaky with the
squeaky wheel and it's great andI highly recommend listeners
follow it.
He does amazing work, but heorganized a whole fest and a
festival and I was there and Ipart of me felt bad for being
(28:15):
there because I'm like oh,should I be here?
Am I actually like, is this adisability?
Is this like?
I still grapple with that, butI think seeing the other people
being like no, this is like.
It's an invisible disability youare dealing with the day to day
but people might not alwaysknow it.
Like you know, when myhemoglobin levels were super low
because of the staples causinginternal bleeding every day, I
could barely walk up the stairsin the city.
Like the city is, it's notfriendly for people with
(28:37):
accessibility issues, and sowalking up the stairs was like
oh, so difficult.
I was out of breath immediatelyand so I felt so out of shape
and but nobody would know that Ijust was like, I just dealt
with it silently, and sometimesI 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 Ijust like didn't want to say
anything, kept it to myself, andso I did see that a bit with
commonalities in terms of otherperformers who've had that.
(28:58):
I just also learning about otherconditions.
Just I think it was sarcoidosisis that the right?
This guy like autoimmune thatcaused serious eyesight where
he's like I'm probably gonna goblind in the next few years, and
he was a comedian, so he madeit funny in a way, but it was,
and then a.
That's the weird thing too isnow I have a whole spreadsheet
of comedians and their diseasesright next to it.
It's like, oh, she has lupus,she has this.
It's like it's just a veryweird thing that I'm sure most
(29:19):
people don't have.
So I did see that's the firstcommonality that comes to mind,
and I think it was prettycathartic, at least to selfishly
just see because I'm like, yeah, it's nice to know other
people's stories because, you'reright, there are these pieces
that you look at and you go.
Speaker 1 (29:37):
I can relate to that and I think, especially as I,
you know, professionally workmore in like the rare disease
space, it's really, I think,even more important for that to
happen because especially if youhave a rare disease and you
know or you have a rare form ofyour disease, like Robin and her
, like you know, crohn's in herstomach it's a rarer form of
Crohn's, and so you know cronesin her stomach it's a rarer form
of crones and so you know youstart to go.
I'm the only one, and so justhearing other people kind of
(29:59):
dealing with their own issues, Ithink is super, super important
and I think especially makingit funny is helpful.
I mean, it's one of the reasonswe wanted to make kind of a
silly show is because we wantedpeople to come in and share
their stories, but we also dowant to have some fun with this
and sort of you know, laugh atthe pieces that are funny, like
(30:20):
celebrating the times where youreach your out-of-pocket max or
your deductible.
Speaker 3 (30:22):
I think that's important.
Yeah, and I even want to saythat, like even today, my uncle
is like a volunteer.
He's retired, but we werehaving lunch at he works at,
like, the Aviation Museum onLong 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 beon a podcast.
Like what's the podcast?
I'm like it's called bowelmoments.
And then he laughed.
He was like he just he gets mymy.
He's like, you know, if youruncle were, because of his
younger brother, my other unclehad Crohn's, if he was still
(30:49):
alive, he would love that.
Speaker 1 (30:49):
He would love to listen to that.
So you've wanted to be on thestage beginning that you were
asking us questions and thatthis wasn't about us and that,
despite the fact that you havedone lots of interviews, you're
not interviewing us.
Does this come from a place ofjust being curious about people?
Is this because you like thesort of medium, like going
through your sort of you knowyour website?
You have a lot of you knowinterviews you've done with
various people, lots ofcelebrities, and then you have
(31:10):
also like serious writing andnot so serious writing.
So you clearly you know you'resort of well first in the entire
sort of journalism space, butis there something about that
that got you interested?
Speaker 3 (31:19):
Yeah, I mean, I think I do think back to like even
college.
I remember my journalismprofessor was like what makes
like a good journalist is noteven like how smart they are
necessarily, it's really justcuriosity.
Like curiosity is such acrucial component to being a
good journalist and to being agood interviewer and I always
held that really high.
And I think I also look at thatwith other people too.
Like you know, you want to bearound other people that are
(31:40):
curious.
So for myself, yeah, curiosityis a huge thing because I think
also psychologically, I alwaysthink I have so many blind spots
or so many things like whatdon'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, whyare people doing this and why
are people acting like this?
I just don't, I just likewanting to learn.
It's.
A friend said something to merecently which was interesting.
(32:00):
He's like I learned more aboutmy friend and what they like to
do and their life from listeningto them on a podcast than from
just in person hanging out withthem in terms of just
interviewing.
I don't know.
I think it was just anotherthing where I just saw like a
lot of benefits with, like Ialways considered myself
somewhat of an introvert.
Then I was like no, I actuallydo that.
I don't think I define itcorrectly, cause I do get a
charge from just talking topeople.
I, even if I don't always liketo be, even though I do go on
(32:22):
stage, I don't always like to bethe center of attention in a
group outside of that, causethere's a lot of pressure, but
there is something from moreself-aware.
I'm like okay, again, whatdon't I know about myself?
And so it just helps bylearning from other people.
So it's mostly selfish, I wouldsay, but but yeah.
Speaker 1 (32:42):
It's interesting you say that, because I think part
of what I do love about thisshow is that, yeah, I love to
talk to people, I love to heartheir stories and I you do, and
but I also think that's notnecessarily an introvert versus
extrovert thing, like, because,especially since you like to be
one-on-one, it could be thatyou're still an enter, an
introvert, but having it ain-person kind of conversation
(33:05):
with somebody or having aconversation with one person can
still be recharging to you.
I think that's the fallacy forintroverts is that like it's
like they want to be alone.
It's not necessarily that theywant to be alone, it's not
necessarily that they want to bealone, it's just that they like
being part of a big group isn'tenergizing.
Speaker 3 (33:17):
Yeah, exactly, exactly, that's yeah, the one on
ones or like the more intimatesituation like this are the ones
that are great, like I was likeoh, I can always do that.
Speaker 1 (33:24):
I can always, as long as the people are friendly and
normal and you know so, asyou've been doing these
interviews and so because you'regoing into it as, like
journalist face, you're justgetting to know these people has
there been times, though, where, because of your invisible
disability, your medicalcondition, has that been a
connection point for you withsome of these folks?
Speaker 3 (33:42):
It's like I can think of a standup comedian I
interviewed, like years ago, whovoiced having a chronic illness
, and I was like, oh, I havethis too.
And then we did start talkingabout different medications and
stuff.
I don't know if it enhanced theinterview because it was about
comedy, though I mean itdefinitely.
I will say I mean this is offtopic now, but it did because I
did these shows wasn't when,like the whole like Luigi thing
happened and they didn't catchhim, like I had a bunch of
(34:03):
people texting me being like Ian, are you everything okay, like.
And so I was like what are youtalking about?
And I had a moment where I waslike it was like it was like 6
30 in the morning when theystarted getting texts and I was
like, did I like disassociateand like do something, like
whatever?
And it's like I just had toprocess 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 aboutinterviewing, but just I guess
I'm like oh good, I guess I lefta mark about.
Speaker 1 (34:25):
I'm leaving some type of mark, I guess, about
potentially that is a majorsticking point for a lot of
people.
I don't think that'snecessarily a bad message for
people to take away, because Idon't.
I really don't think a lot ofpeople understand fully
understand how debilitating itis to know that you have this
(34:46):
thing that's going to just costyou so much money.
And every time you're lying onyour bathroom floor going how
much pain am I in and what can Ihandle?
Do I call the ambulance,knowing how expensive that is
and what that's going to add toyour debt and all these things,
I just I don't think peopleunderstand that when they don't
live with a chronic illness, Ahundred percent.
Speaker 3 (35:01):
And also, like you know, you talk about having a
chronic illness.
It's like I don't know if thisis for everybody, I don't want
to speak to that, but like itdoes make things worse.
Like I'm not saying it causesthe diseases, I don't know.
(35:23):
It does make things worse.
And so I can think back to ayear or two ago and that's what
prompted all this like some ofthese comedy shows too is
because I had a like I justrandomly got like a five
thousand dollar bill from cvsspecialty pharmacy and I was
what is this?
And then going through thatprocess was like it's weird to
say it was hell, but it reallywas.
Like it drove me insane.
Like even while the phone wasringing and I hadn't spoken to
(35:46):
anyone, I was already in likedefensive anger mode because I
was like I was ready for someoneto be like sir, you're going to
have to call up your insuranceand 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 aswell.
Okay, and so it's just thatback and forth I would feel my
stomach being like I think Ihave to go to the bathroom now
or I yeah it just when I washaving spasms.
(36:06):
It would make it worse.
It was just like okay, this is,but it's just crazy.
It's like putting us in a corner, have the chronic illness and
then having to also have theenergy to deal with fixing these
issues because we don't haveassistants.
We don't have like an assistantthat's going to call for them.
None of us have that.
So it's just like well, howmany jobs am I doing that are
outside of my actual just job,where I have to earn money as
(36:27):
well?
And it's just like what is this?
What is happening?
You know, you talk about likethe okay, mental health.
Having mental health wouldreally help as well, but a lot
of therapists like it's going tobe $400 a session, great, okay,
so who can I take?
Is this person not as good asthe other person?
And yeah, it's just a whole mazeof figuring things out and I
think I don't know, like themoment that something does pop
(36:47):
up, like I had a test recentlyfor cholesterol and like my
triglycerides were really highand I'm like is this dangerous?
Do I have to add anothermedication to my regimen?
Do I have to statin and thenthe doctor not realizing that
Rynvoke might be the reason.
It was a cardiologist whodidn't even bring up the idea
that Rynvoke might be the reasonthat the levels are high.
I didn't know that and yeah,it's stressful.
I can't help but think, youknow, like my thirties now, but
(37:09):
like okay, what's it going tolook 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 constantthoughts on my mind.
Speaker 1 (37:20):
I mean, I think what makes me hopeful about you know,
when you're in your forties?
I think, from what we'rehearing from the researchers and
doctors, things are movingquite fast.
I think I worry a little bitabout, you know, like NIH
funding and things like that,slowing some of these things
down.
But I do know that, likelooking at the medications that
are coming down the pipelinesand looking at the research
that's being done, I feel reallyhopeful that we're finding
(37:43):
better options for people.
Now whether they can get tothem easily or not is always
going to be the question,unfortunately, with the American
healthcare system, just becauseof insurance being the way it
is.
But, like the research isreally hopeful to me that we are
getting to a place wherethey're finding better options
and so I'm hopeful.
I try not to be Pollyanna withthis, but I really do feel like
(38:03):
the conversations we've had withthe doctors that are super,
super knowledgeable and theresearchers make me feel like
that's closer than we think.
Speaker 3 (38:10):
That's really nice to hear.
I think, like in the flood ofhorrible news every day, like
this is actually very it's nicethat you said that and it's nice
to hear.
It's nice to know that there'sthere's a potential defense in
the background of like, okay,there's, there are options.
You know you have options CauseI know you know, 50 years ago
my uncle just had prednisone.
I was even talking to mytherapist about it.
(38:32):
It's like that, you know, likethey're just like yeah,
generally I'm OK.
It's just when the medical stuffgets bad, that's when it really
like trips you up mentally andthe hopelessness not to be such
a downer, but like thehopelessness really come into
play, where you're just like,yeah, just screw it, like, just
whatever, like.
But when things are going alittle better, it's a little
easier to be more hopeful.
And talking to a family memberabout I was going to have a
(38:53):
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 II actually do get excited for
colonoscopies now, cause I doget excited to be knocked out
from the propofol.
And then I light, I love wakingup and like the feeling it
gives.
Speaker 2 (39:05):
The best nap.
It's what you go through allthe prep for that propofol nap
man.
Speaker 3 (39:13):
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 youstart, once they like lay you
down on the table, I'm likebasically just smiling the whole
time.
I'm like here, we go here.
Okay, like this is the momentI've been waiting for and so
like I'm so excited.
But I remember telling a familyI'm like, oh, I can't wait for
them, just like knock me out.
And she's like wait, why wouldyou be excited about that it?
(39:34):
But I was like that's, it'sjust, it was interesting, that
reaction.
I was like, oh, I'm so used totalking to people in the
community.
They're like, oh my god, likehow, robin.
Your response is exactly likethat's how friends in the
community usually react, whereit'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 justwant to be knocked out.
Speaker 2 (39:54):
But it's like, no, it's, it's, it's a wonderful nap
I mean, if I had easy access topropofol naps, I could 100 just
be like yeah, hit me withanother propofol nap can I ask
you a quick question, clowning?
Speaker 1 (40:05):
oh yeah what, what, what kind of clowning does she
do like?
Where is she clowning I?
Speaker 3 (40:10):
think the best thing, the way she because I, because
I think the first thing comes tomind is always like birthday
clown, but how she described itto me like what?
Well, let's just think of likeCharlie Chaplin or physical
comedy, clowning, and yeah, andshe's done, like, she's done
solo shows that are really goodand she's done all that stuff
she did.
Right now she does hospitalclowning so cute.
So she works for a companycalled Laughter League and they
(40:30):
do hospital clowning and theyliterally go into hospitals and
they wear the clown nose butthey don't dress as clowns
because that, you know, that'syeah, and they go into different
rooms and just kind ofentertain the kids and learning
about all this.
I'm just like man, I wish thisis a thing even for adults.
Like we need things like thisso much because hospitals are I
mean again, I'm not going to getus into a tangent about that,
but just it's, hospitals are sodepressing that I would love to
(40:53):
have at the very least for kidsto 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 andso she'll.
She will say things to me likemy nose didn't come in the mail
yet and I'm like, oh, like, butit'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 likenever thought I'd hear that
phrase, or like yeah, cute.
Speaker 1 (41:14):
I'm glad because I also I'm very afraid of clowns,
and so I was like, oh god, Ihope she doesn't come into the
room no, no, no suddenly justhang up on you.
No, no, I think that I agreewith you.
We've talked about this anumber of times about how like
it would be nice if there wereaspects of the pediatric system
that extended into the adultsystem.
Like like child lifespecialists are wonderful, like
they're people that just likeexplain to you in layman's terms
(41:35):
or in kid terms, like what'sgoing to happen, and check on
you and bring you like coloringbooks and like make sure that
they are in an environment thatfeels safer and comfortable, and
like clowns and dogs and likeall the stuff that they do in
these pediatric systems likeespecially the big systems that
is like just kind of keepspeople wrapped up in a nice
little like you know hug.
That kind of helps them through, and so that'd be nice.
Speaker 2 (41:55):
And it is obvious that Alicia and I could talk to
you for probably another twohours, because that's how long
we've been talking to you, butunfortunately it is time for me
to ask the final question of theshow, and that is what is the
one thing that you want the IBDcommunity to know?
Speaker 3 (42:08):
I thought of two things that I will not expand
too long on, but it's somethingI keep saying to people,
depending on what your stateyou're in, if you're not doing
this already, please recordeverything with your doctor
visits.
It's better if you can ask them.
Of course can I record, butsometimes if you don't feel
comfortable doing it, it's OK,just do it for yourself.
You're not going to, you're notgoing to publicize it.
Record you open voice memos.
Record because I can say formyself I have had so many
(42:31):
sessions with doctors where I'dwalk 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'mgoing to record my set.
What can I do better?
What did I learn from this?
Same thing with doctor's visitsLike, oh, they said this, I
didn't really.
Oh, that's what that meant.
(43:00):
Because in the know, I mentionedTina, 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 soI know it's probably hard
because it feels so isolatingand when you do feel hopeless,
you don't want to meet anybodyor talk to anybody, so but if
you can find those moments tofigure out a way to meet a
community of people who are likeyou and are going through the
same thing, it is, it will kindof change everything, because it
is good to listen to doctorsyou trust, but sometimes doctors
will not recommend the bestsurgeons.
(43:21):
Sometimes the people in thecommunity will recommend the
best surgeons and people youtrust, and so that's going to be
really key to at least find oneperson that's the community,
just at least one person who canhelp with that.
So find people like Tina.
Speaker 2 (43:34):
I want to reiterate that sometimes doctors don't
recommend the best surgeon.
Alicia and I have talked aboutthis before making sure that you
have time to meet with asurgeon in advance.
Don't be scared of surgery.
It's a part of having IBD thata lot of us will have to
experience.
And the sooner that you canmeet with a surgeon just to talk
about it and get an idea ofwhat that surgeon is like, that
(43:56):
gives you an opportunity to saylike you know what, I don't know
if that guy and I or that womanand I vibe like maybe I should
go and see if there are othersurgeons out there in case I
have to have surgery.
Because when you're in asituation where it's an
emergency and you don't havetime to do that, or you have to
make a decision quick, or you goto the emergency room and they
just you know.
It's better to know what'sgoing to happen in advance in a
(44:18):
safe environment, when it's notemergent.
Speaker 3 (44:21):
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 thefirst surgeon I had I did not
give me good vibes but I waslike, oh, she's recommended.
Second surgeon did Schwartzbergand he was very good.
But how important are vibes?
Because I know they'reimportant, but if the surgeon is
amazing, do you throw vibes outthe window?
Speaker 2 (44:42):
I threw vibes out the window because the surgeon was
supposed to be amazing.
And that was the surgery that Ihad so many complications on
and had very poor careafterwards, and the first
surgeon that I had almost 26years ago.
He was like the chief ofsurgery for that hospital and
also vibes off the chart, likejust decent person, and seemed
(45:03):
like a cool dude.
And then, after the surgerythat went wrong, I reached out
to a surgeon that I knew andtrusted professionally and I
said who would you recommend?
And he was like I'm going totake you.
And then when we talked toSchwartzberg, I was like, if I
have to have another, like I'mgoing to take you.
Speaker 1 (45:19):
And then when we talked to Schwartzberg, I was
like if I have to have anothersurgery, I'm going to New York.
We literally could just keeptalking 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 pleasureto get to know you and to hear
more about your story.
Speaker 3 (45:41):
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, andif you enjoyed this episode,
please rate, review, subscribeand share with a friend.
Hi, I'm Alicia and I'm Robin and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to IanGoldstein.
Ian is living with Crohn'sdisease and vitiligo and he has
a family history of inflammatorybowel disease.
(00:20):
We talked to him about beingdiagnosed at 16.
We talked to him about bowelobstructions and surgery.
We talked to him about SIBO andwe talked to him about being
diagnosed at 16.
We talked to him about bowelobstructions and surgery.
We talked to him about SIBO andwe talked to him about
combination therapy.
We talked to him about findingcommunity and, best of all, we
talked to him about how he'sturned his Crohn's disease and
dealing with healthcare intocomedy Cheers.
Speaker 2 (00:42):
Hi everybody, Welcome to Bowel Moments.
Speaker 1 (00:44):
This is Robin.
Hey everyone, this is Aliciaand we are absolutely delighted
to be joined by Ian Goldstein.
Ian, welcome to the show.
Speaker 3 (00:51):
Thank you, Alicia and Robin, for having me.
Speaker 1 (00:53):
Well, we are very, very excited to get into your
story.
But very first unprofessionalquestion for you is what are you
drinking?
Speaker 3 (00:59):
Okay, yeah, literally right now I'm drinking out of a
mug with my initial on it thathas I.
Yeah, literally right now I'mdrinking out of a mug with my
initial on it that has I.
My fiance has an initial Bbecause her name is Becca, or
Rebecca Becca, but I'm drinkingwater right now.
But I was thinking about thisquestion more like deeper than I
should when you.
So I'm drinking water now, butI'm like, well, technically, I'm
also drinking like what's adrink?
I can say, and I was like, oh,I started drinking matcha in
(01:21):
like the last year or so, sothat's, that's been pretty
exciting.
It's a very Brooklyn-y thing tosay, I guess.
So that's why I do feel awkwardwhen I order at a cafe.
I'm like can I have a matchalatte?
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, whichis way too much money.
But water and matcha, I guess,yeah.
Speaker 2 (01:38):
Matcha is quite grassy isn't it?
Speaker 1 (01:40):
I think so Like.
It's like coffee, you know,when you first drink it you're
like, no, it has to have likeseven packets of sugar in it.
And then eventually you getdown to where you need less and
less sugar and it might be anacquired taste.
Speaker 3 (01:48):
I think it is.
If once you add milk, it'sexciting, and definitely when
you add sugar, it's veryexciting.
But I also I do like whenthings taste bad, sometimes I'm
like, oh, it tastes terrible,but it's, it's healthy, so I'm
(02:09):
doing something good for my body.
So, yeah, this is probably somepsychological things here we
can discuss.
Speaker 1 (02:13):
But yeah, yeah, I'm sure there's probably some
psychologists that are listeningthat are like we'd like to talk
to you, robin.
What are you drinking?
Speaker 2 (02:18):
You multiple beverages.
So my daughter is visitingright now.
She's in town and she wascraving a Sonic slushie and I'm
going to tell you I have not hadone of those.
I can't tell you, the last timeI had one.
So I'm drinking a CherryLimeade slushie and it is
delightful.
Speaker 1 (02:37):
I love it.
Alicia what are you drinking,robin?
I am delighted to tell you thatI am drinking a Hillstone Crisp
Martini Fancy, I know.
So it is rose and elderflowergin, and then it's elderflower
liqueur, lemon juice, and thenyou top it with some Sauvignon
Blanc, so like all of myfavorite things, like in a glass
(02:59):
.
So I'm pretty excited about it.
I've not had a drink yet, so Iwanted to honor you guys with my
first sip.
So cheers, guys, cheers, cheers.
That's really good, that'sdangerous.
Okay, and next question for youis tell us your IBD story.
What brought you into ourcommunity?
Speaker 3 (03:16):
Yes, oh, I, about 20 years ago, in 2007, 2007, I was
16.
And I was diagnosed withCrohn's didn't know it was
Crohn's right away because itwas 11th grade and, as I'm sure
you both know, like 11th gradeis terrible.
High school is like slowlystarting to get better.
But I mean, I remember being inchemistry class.
I'm like I have to go to thebathroom.
I have to go to the bathroomagain and I'm like it's probably
(03:37):
just stress, because I'mstressed about SATs.
You know the, the daily 7am to3.30pm school schedule, which is
the worst thing ever.
I'm stressed about SATs goingto college.
So I'm like it's just stress,it's fine.
And I have an afterschool job ata supermarket and I remember
someone coming up to me at myjob and said you look really
thin.
At that time I was very adamant.
I'm like, oh, that's acompliment, that's a good thing,
no-transcript.
(04:10):
She was like no, no, no, youlook like really thin, I okay,
I'm all right, I'm okay.
And like I don't know what thatis.
And then I saw I don't know, Iwon't call it a fistula, but it
was something just between thatarea around my groin area where
(04:31):
I was like, oh, this is likethere's like pus coming out.
So it's like all these mixturesof things happening.
I'm like I got a colonoscopy andthey're like you have Crohn's.
So I was 16 years old and Ihave Crohn's disease and even
before the colonoscopy I'm likeI'm having a colonoscopy at 16
(04:51):
years old.
That's crazy.
Like I thought this was likefor 50, 60 year olds.
So I was diagnosed I hadCrohn's and then put me on an
ask call and I was like this isnot helping at all.
So I my mom me and my mom causemy mom would come for every
visit and we would switch,switch to a different doctor who
was younger, kind of lookedlike Jerry Seinfeld.
So I was like so it's kind ofhard to look directly at his
(05:16):
face Cause I'm like you lookexactly like Seinfeld is my
gastroenterologist.
But he he put me on Entacort, asteroid, and then that started
really helping.
And then eventually he got meon 6MP and I was good.
I was like I feel normal, likethe all the symptoms like
started dissipating.
I was like I think I'm good, Idon't really, I don't need
surgery, I'm fine.
Again, this was 2007.
So that that stayed like thatfor the next few years.
(05:39):
I was like I think I'm likejust good now.
I don't really.
I didn't have to alter my diettoo much, but I remember it was
the first time.
I also remember feeling beforethe medication, before getting
that when I first got Crohn'sthe feeling of not feeling
hungry and not wanting to eatand being nauseated by food.
And I remember my mom coming upto me being like oh, I'm so
jealous of you.
I wish I had that ability to belike.
(06:01):
I was like you don to feelbetter.
I, you know I went to collegeand everything was fine.
And then, by senior year 2013,it was during Passover I had was
on the Passover diet, which wasmatzah, and I enjoy the diet.
I actually like matzah withcream cheese.
It's pretty exciting to me, butI, so I had a lot of matzah.
And then I walked into myapartment at the time on campus
and I was like I walked into theroom, I felt this immense
amount of pain that I've neverexperienced in my life.
(06:23):
I'm like it was a sharp painthat is like hard to describe
now, even because I'm notexperiencing 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 Kepthappening.
I was like I must beconstipated from all the matzah.
That must be what's happening.
So I was fiber, nothing aboutit.
I had it and then the pain,which was already really bad,
(06:46):
amplified by like a hundred andjust 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 apartmentand I was.
I was like I have to get on theground, I cannot like.
I like a doctor prescribed mepain medication.
It did nothing.
I started throwing up and thenI started, and then I went to
the bathroom.
I was like I just maybe I justneed to like get this out the
other way, just a bowel movement.
And I went and it was black, itwas fully black.
(07:08):
I was like, okay, somethingreally weird is going on here,
alarming.
And then I was just I was juston the bathroom and I was like I
called to my apartment mate andhe called the, called an
ambulance.
I went to the hospital andthey're like you have a bowel
obstruction, absolutely Bowelobstruction.
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 anNG tube before and I was like
this is a modern day torturedevice.
(07:29):
Cause I was like what do you do?
I didn't know this existed.
You have to jam this up my noseand down my throat and into it,
and you feel it dangling inyour throat when it's in.
And so I was just like, oh myGod, like this is hell.
And at like 3am I have vitiligoby the way, it's another
autoimmune condition that's notrisky in any way.
But I remember a doctor whoalso had vitiligo then came in
and looked at me with like suchpitiful eyes at like 3am and I
(07:51):
was just like because I was justlike my eyes were wide and not
talking, so every time I talkedI had to, I was like choking on
the NG tube.
And so he came in.
He was like he's like we'regonna take it out.
I was like, okay, like notknowing if they should or not,
but they took it out and theythey did the method of just
waiting a few days and lettingit pass.
So eventually everything passed, thankfully.
(08:11):
But it was like okay, somethingis something's going on.
And so the Crohn's was activeagain and it was with.
The real issue was also thatthere was immense amount of
scarring that has happenedbecause the medication, the 6-MP
, was not.
And again I'm like it's as I'msure you both know, it's like
just learning as you're going.
I'm like, okay, I didn't knowthat was a thing, I didn't know
having inflammation being activewas even bad.
I was just like, oh, what'sthat going to do?
(08:32):
That's bad, it's just there.
And no one taught me this stuff.
So they put me on Humira andagain my was working pretty well
.
And then a few, a few moreyears go by and it's 2016 and I
have another bowel obstruction,but it's very miniature.
It's not nothing compared tothis 2013 one that was just a
mega, excruciating pain.
These are like mini pains.
(08:52):
I had one in 2016 that went tothe hospital.
2017 was I went to the hospitalalmost every year just with,
like the emergency room, justwith miniature bowel
obstructions that I just letpass Because, again, I didn't
know what is the issue with scar, like what is the issue with
leaving the scarring there, likethe scarring is still there.
It's just bowel obstructions.
Why don't I just modify my diet?
So I modified my diet, avoidedraw fruits and vegetables, nuts,
avoided all those things, buteventually come like 2020, 2021,
(09:15):
when I met a gastroenterologistin Brooklyn.
He's like so you need to takecare of these, these strictures,
you can't just leave it here.
And I was like, no, I don't, Ican just modify my diet.
He's like, no, over time thisit'll essentially just it'll be
so bad that like nothing's goingto get through if you leave
these here.
He's like you have to dosurgery, cause I was like so
(09:36):
proud of myself, I was like Ihave Crohn's but I don't have to
do surgery.
So he's like, no, you, youreally do.
And I I got my first surgerywith Crohn's and they took out
two feet of small bowel and itwas.
It was a resection.
It was about 60 centimeters ofthe ileum and it was.
It was there were seven, therewere wound up being seven
strictures and I wrote it downwith the with the surgery.
So they took out the intestineand it was a side to side
(09:59):
functional, end to end, smallbowel stapling that they did
which.
So first of all, another learnas you go moment.
I had the surgery and I tellthe story on stage.
Sometimes I didn't know whatileus was, so, and maybe your
listeners know, but the best Ican describe it if you don't
know is essentially just thebowels freeze up after surgery.
It's like you spook to thebowels and bile.
Everything just freezes andstops moving Again.
I had no idea this was a thing,and so I woke up in the
(10:21):
hospital in 2022 at 3 am thing.
And so I woke up in thehospital in 2022 at 3am just in
an immense amount of nausea notpain, but just so nauseous, and
I was like I know what I need todrink 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 thehospital, but nobody was coming
.
It was like 3am and I was likeI thought hospitals were staffed
(10:42):
but nobody was coming.
So I was just again reminiscentof 2013.
I was just in the fetalposition in my bed, being like,
please, I just like you knowthat feeling.
You just want to be likedisassociated, like can someone
just like knock me out, or likejust give me a drug that just
like takes me out of my body soI can just like look at my body
from a distance, so my physicalbody can experience this, but my
brain can go somewhere elselike that.
I just so wish that's a thing,because it's.
(11:03):
It was so bad, that was likethe worst nausea I felt.
So finally, like 7am, someonecame in and gave me like a pouch
, like a thing behind my ear fornausea.
It did nothing and then Ibasically a few more hours went
by and I was like I told him I'mgonna throw up.
And they're like Well, wereally prefer you don't throw up
.
And so they said they preferthat I don't.
(11:24):
And then finally they gave me.
I said I'm going to throw up, Ineed like a basin.
And they gave me a basin, apink basin, and I stared at the
basin and I looked down and Ijust threw up what looks like
just fully black oil, just likefrom an oil rig.
It looks like it came out, itjust filled up the entire basin
and I was like I don't know whatthat is, but this feels amazing
, like I felt so good that I waslike this is out, I feel good.
(11:45):
And they're like yeah, so that'sbile.
This is not good necessarilybecause you have ileus and we
need to do NG tube.
And those words, just to mybrain, just killed.
I was like God, you're notgoing to do an NG tube.
But I sort of was just likefuck it, whatever, just do what
you need to do.
And they did it and eventuallythey put it in.
They did up the nose, down thethroat, and my surgeon
eventually put me in a suite inthe in Weill Cornell and it was
(12:07):
wonderful.
I was like I've neverexperienced a suite, because
before that I had a roommate andnow I had a suite and I had a
giant window and I could see theskyline of New York city.
I was like, yeah, that's prettygood.
Actually, like this is whatlike wealthy people experience.
I was like nice.
So, anyway, successful, theCrohn's.
I got on different medicationsover the years.
I got on Skyrizzy and thenRynvoke, and this is a whole
other conversation.
But my health insurance keepsdenying the Rynvoke because
(12:29):
they're like you have Skyrizzy,why do you need Rynvoke?
And I'm sure we could talkabout this.
But Skyrizzy and Rynvoketogether 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 likegreat, the surgery's done, I
have the strictures out, I'm allgood.
But, as I'm sure you both know,like nothing's ever simple with
(12:50):
all of this because what startedto happen was I started to go
to the bathroom and see bloodand at this point I think like
2024, 2023, I started to seeblood a lot and I was losing a
lot of blood in my body and myhemoglobin levels were like
seven or eight, which is notgood.
It's very low.
(13:11):
I do know people who've hadeven lower.
We've had to get bloodtransfusions, but they're like
we don't know exactly what'sgoing 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 assumptionis that it's remnants of the
surgery because of the staplingthat they did.
That's our assumption is thatmaybe staples are stuck, but we
don't know and we're not reallysure how we're going to know.
So I was like okay, so I did allthese tests.
(13:31):
Nothing really.
I just I.
So I started getting ironinfusions every single week.
They started telling me at theiron infusion they gave me
Ferrahim, which is like the megadose.
They're like stop saying this,it doesn't make me feel good.
But they also did say I hadnice thick juicy veins.
So I was like that's.
So I was like all right, I'lltake that that's a compliment.
(13:58):
But eventually they're likeyou're probably going to need
surgery.
But I tried all theseexperimental procedures.
I did, I did all these otherlike endoscopies to go up up,
did a capsule endoscopy andthey're like the capsule got
stuck in the area where thestaples were and so my
gastroenterologist, when he sawthe capsule was stuck, he's like
so the good news is that we seeexactly where, like what, the
problem is, and we see theliteral like staple lining
causing bleeding.
(14:18):
So you're literally bleedinginternally constantly and so we
see that.
But the bad news is the capsulestuck and hopefully that passes
and also it's clear we need todo surgery now.
Eventually the capsule did pass, but it also was like when the
capsule was stuck, I think I wasjust going through like a
mental breakdown because I was,it was stuck and I was like fuck
, am I gonna get obstructionfrom this?
I'm gonna need to get surgery toremove this.
(14:38):
It was also the same I thinkit's the same week that our cat
had died, becca, and I read acat, roger, who was just like
this wonderful, wonderful guyand family member.
So it was just like a lothappening at once.
But I guess that's how life is.
So I this is like, as I'msaying this, I'm like this
really was a journey.
But I finally opted to go forthe surgery.
I was like let's do it.
And I went to see one guy andhe was like he's an older guy in
(15:12):
the city and I met with him andI'm like I'm not really getting
a great vibe from him.
I was like, oh so you're goingto, you'm going to use the
finest silk from Egypt.
And then, like his whole staffaround him just laughed and I
was like I don't know what'shappening here, I don't know if
you're making fun of me, but I'mgetting a bad vibe.
But I was like vibes don't,maybe vibes don't matter, I'll
(15:36):
just go with you, it's fine.
And so I was like gonna reallygo ahead with the surgery.
But I spoke with Tina, who hehad a leak or he or she had a
leak after the anastomoticrevision and they, I think, went
into sepsis.
They had sepsis.
So she was like I think youshould go with this guy.
There was a guy in Pittsburgh,but then she also.
I think Binion was a gastro andthen Cruz was the surgeon.
But then she's like or, if youNew York, there's a guy
(16:00):
Schwartzberg, and I sawSchwartzberg 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 waslike can I ask another question?
(16:20):
He's like, yeah, ask as manyquestions as you want.
Like I'm I surgeon, though Idon't know yet.
I've had, I've heard goodthings but I don't know.
And so I was like, okay, vibeis good.
And then eventually I went inthis past May for the surgery,
cause he's like, yeah, we coulddo it in a few weeks.
And I was like, great, wow,okay.
And then I went in for thesurgery and my fear was having
an ileus.
Again, he's like great.
(16:40):
And he did.
The surgery took out about 10centimeters.
He sent me the video of myintestine that was bleeding,
with the staples in it, so I'mhappy to share that with anyone
listening or you all if you wantto see it.
I was like this is also reallycool that he shares that with me
.
Cause he's like this is theintestine that's bleeding and I
was like that's great.
So I had the video and peopleinto body horror too, and she
was like she was excited aboutthat.
(17:01):
But I yeah, it was successfuland I didn't have ileus and the
first day or so of the recoverywas rough.
I really was like again take meout of my body.
But after that it was likepretty much smooth sailing and
at this point my Crohn's, as faras I know, is in remission and
they also removed a hernia thatwas there.
So I'm like I'm pretty goodright now Overall.
Not to jinx it, but I will sayI did have a year in 2021.
(17:22):
In between all of this that Ijust went crazy about having
acid reflux and because I hadthis feeling in my throat for a
while, and I also had SIBO.
So it's all part of the story Ihad.
But the worst thing about SIBOwas really just like the gas,
like just the farts, smelledterrible, and so it doesn't
happen as much now, but at thetime it was happening a lot.
(17:48):
The farts were really badlysmelling and so if I'd watch a
movie with Becca, if we'd watcha movie together, I'd be like,
okay, I would like we pause andI would just go into the other
room and close the door and fartand then let the room deal with
the smell and then.
But then sometimes I would walkout 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, soI'm, but that was.
That was the worst that I hadfrom SIBO.
I don't know if other peoplehave had worse things, but I
know people have had pain, Ithink, with it.
(18:08):
I haven't really had that butand the reflux is sort of solved
.
I know what, what to avoid now.
But that's essentially myjourney is just the, you know,
and but it's really nice talkingto other people who have these
issues and Tina, honestly, waslike a savior and I just have
like I really just have a lot oflove for her because she really
like stepped in and was likedon't do this.
And I was like, oh, okay, andwe need more people like that in
(18:29):
the world because look out foreach other.
So that's my journey.
Speaker 1 (18:32):
Wow, yes, that is definitely a lot happening and
yes, you're right, tina isreally wonderful and very, very
generous with sharing her timeand story with people.
Speaker 2 (18:39):
I had SIBO for the first time at the end of last
year, or at least I think it'sat the end of last year.
It could have been longer.
From what I know now, it couldbe 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 Ihad a lot of pain and it could
be because I have the J pouch,like the gas wasn't moving.
(19:02):
The gas was so horrible but Icouldn't get it out, and so I
was every night heating pad, gassets, iv guard, drinking hot
water, hot tea, hot lemon water,like whatever I could think of
and it was pretty bad.
For a long time, I honestlythought that I was in a flare
again and that my medication wasnot working anymore, because
(19:23):
I've been on the same thingsince 2018.
And I kept going back to mydoctor's office saying like
something is wrong and I had ascope, an EDG, I had a capsule
endoscopy.
I had like so many things doneand then finally, maybe four
months after I first said, okay,something is seriously wrong
here, they did a stool test andI had like four or five bacteria
(19:47):
, you know, in my stool and theywere like oh, this is
definitely bacterial overgrowthin your small bowel, and so I
had to do two-week course of twoantibiotics and then wait a
little while and do another weekcourse of antibiotics.
And I'm so grateful that theyfinally did that, because I feel
like a new person now.
It's just weird not being inpain every night.
I'm also like every timesomething happens where I feel
(20:08):
like I'm getting a little bit ofgas, 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 beentrying to take me out for a
while, and so to have somethingcompletely different, like raise
its hand and say it's my turnto make your life miserable it
was wild.
And then I found out that itcomes back, like it could come
(20:29):
back at any time, and so I'mlike, okay, this is great, I'm
excited about this next phase ofmy life with this.
Speaker 3 (20:35):
That's interesting.
Yeah, I did a breath test andthat's how they diagnosed it,
but then they gave me theantibiotics and I think it
caused a lot of issues beyondthe antibiotics.
So I was just like I think Istopped it pretty quickly
because I was like I know,something happened it's a while
ago now but so I was like Ithink I'm just going to live
with this.
So I don't even know if I stillcertain foods, but are you,
once you were solved with that,like are you able to go back to
(20:56):
foods then that you couldn'twhile you had SIBO?
Speaker 2 (20:59):
I'm going to say no to that, except for maybe like
carbonated beverages.
That was definitely off thetable, but I still try to stay
away from carbonated beveragesanyway, and also because of the
J pouch, my IBD R and D and Ihave been trying to work through
like the J pouch doesn't likecertain preservatives and
additives in food, and so I hadbeen trying to work through like
(21:20):
really anything that has like apreservative or an additive.
There's certain ones that the Jpouches just don't like, and so
I was trying to work throughthat anyway.
So I feel like the answer isprobably no, because I'm just
trying to eat food with theleast amount of ingredients
possible.
Speaker 3 (21:33):
No, I can relate Don't have a J pouch but I can
relate just that and that was myexperience 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 wholelife and I know it's.
I know the health and wellness.
People talk about it a lot nowand a lot of them are.
Some are good, some are alittle shady.
(21:54):
What's wrong with this?
I don't what it like and as a10 year old, I'm like is there
any?
I didn't think there's anythingwrong with this.
I mean, it's fine once in awhile, whatever, but like, yeah,
but I started doing that thelast few years too.
I'm like okay, just like thefewest amount of ingredients.
There is something to likewhole foods and all that.
It's really good to have rawalmonds, it's good to have.
(22:15):
Like raw nuts, it's good tohave.
Just have a carrot.
I'm like I can't have that stuff.
I'm terrified of that stuffBecause even after my first
surgery it was like six monthsafter I'm like I think I can
have cashews again.
I haven't had nuts in a fewyears, so I had a bag of raw
cashews Again, not knowing thatthat was bad, so I didn't have
to go to the ER, but I was likethis is really bad pain and I
(22:36):
was like, okay, now I'm nowterrified of nuts again.
And I and it was another fouryears before again, tina came in
and was like you can she's,like you should try having
pistachios and again roastednuts and the nut butters.
Making nut butters and all thatstuff is all doable, but it's
it's all really scary foodanxiety Cause the thing that's
supposed to help you is also thething that can send you to the
hospital.
Speaker 1 (22:55):
It's very easy to see , though, how, like, people
develop food anxiety, though Imean, like, this is it's so fast
where you're like, okay, thismakes me feel crappy, and now
what else is going to make mefeel crappy?
I don't want to feel thatcrappy, you know.
And so it's very easy to seehow people develop that food
anxiety and end up with the fivefoods they know are safe for
them, and then they neverdeviate from that.
And yes, perhaps eating Ritzbits crackers every day for
(23:15):
lunch is not the best choice,but if that's what you feel okay
with, then definitely havingthat is not necessarily a bad
thing, you know, because fed isbest.
That is bad.
Speaker 3 (23:24):
There is like something to think about.
Sometimes you're just like,obviously some of those are the
really healthy things to makeyou feel bad and the really
terrible things to make you feelbad.
And there is that, like yousaid, the safe foods.
But, as Robin, you said, havinga registered dietitian is so
crucial.
Like I've actually met mydietitian.
I have on Instagram just theCrohn's colitis dietitians and
they're great, Like they're sodown to earth and like someone
(23:45):
guiding you is really helpfulbecause the food anxiety is
really really strong and scary.
Speaker 1 (23:47):
Can we take a slight turn, because you mentioned
being on stage, why are you onstage?
Tell us about this aspect ofyour life.
Speaker 3 (23:53):
Yeah, for a long time , I mean, I've been very into
comedy and performing, but Ithink 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 workover the years and interviews
and interviews with comedians,and I always wanted to be on
stage a little bit too, just tosee what that was like.
And so I went to some stand upopen mics in Brooklyn and New
York and wasn't really my thing.
I'm always really impressedwith people who can do it really
(24:14):
well.
But I was like I don't know ifthis is my thing, but I do like
being on stage.
So I started putting togetherthese apartment shows, like
apartment comedy shows, wheresomeone would be like I want to
host a show at my apartment.
I'm like great, let's do a showabout you know like donuts.
Let's do a whole show aboutdonuts.
I'll give people free donutsand just you know people that
all the comedy will be aboutdonuts.
So he did a lot of shows likethat and a lot of like music
(24:34):
tribute shows.
It's actually how I met Becca,because Becca does clowning and
was doing like a strong womanact.
She ripped a phone book in halfand I opened for her with music
and it was in an apartment andI was like nice like that's the
lady for me, so, anyway, so, butI was do these shows and I
really liked doing them.
And then at some point though, Iwas like, oh, it'd be cool to
do shows about having Crohn's orhaving autoimmune diseases,
(24:54):
because I'm also just curious tohear other people's stories,
because I also started gettinginto the storytelling world,
like the moth, like things likethat.
So I started a show called theautoimmune saloon and that was
at a place in Brooklyn like aback of a bar, and I was like
great, no-transcript, all right,quickly, how can I quickly find
(25:25):
someone else who has a chronicillness in the next hour?
But it was really fun show andI really liked doing that
because it was beneficial for somany reasons.
It was a fun show.
I met people in the communityand also after the show I met a
attendee who was like my sisterworks at the IBD center at Mount
Sinai and I was like, oh, Ididn't know that existed.
And she's like yeah, they havea test called an intestinal
(25:47):
ultrasound which is like onestep below colonoscopy in terms
of testing and it's much easier.
I was like I didn't know aboutthat, she, in terms of testing,
and it's much easier.
I was like I didn't know aboutthat.
She's like, yeah, you shouldlook into this.
I started looking into it, Istarted doing the test.
It started helping me, like Ijust I didn't.
My doctor didn't tell me that.
And so I and I really liked mydoctor, but I just didn't know
about these things.
So I was like, oh, this isinteresting, you're learning.
I'm learning something fromjust doing a show bit and start
(26:13):
to meet people in the communitymore and educate myself more.
So yeah, I still perform onstage and I still do a talk
about chronic illness.
And since then I've donedifferent shows.
I've done shows about medicaldebt.
It was called Rage AgainstMedical Debt because it's not
going away and nothing's beingdone about it and I am furious
about it every single day andthat we all have to just go
bankrupt because we're all sick.
So I did that show.
(26:34):
And then I did a show where Icelebrated meeting my health
care deductible.
And I did that at a friend'svenue in Brooklyn and that was
great.
And then it was really nicebecause then the New York Times
covered it and they're like,yeah, we're going to cover this
random guy who celebratedmeeting his health care
deductible.
I had cupcakes.
They were decorated on the topof it.
I had a screenshot of my WeillCornell patient portal login
(26:55):
page.
I had hats that said I met mydeductible 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 showstogether.
So I'm always interested indoing a New York or across the
country.
So even if any listeners arelike I want to do a show about
this and you know, in Maine orVermont or it doesn't have to be
the East Coast but Arizona, Iwould do that happily because I
(27:16):
just it's fun for me.
So it's like it's mixing all mypassions of just being on stage
and writing dumb bits aboutthings and meeting fun people.
Speaker 2 (27:23):
I love that so much and also I celebrate meeting my
deductible, but not in the sameway.
I feel like I need to have oneof these parties.
Speaker 3 (27:30):
Absolutely.
You should absolutely have aparty.
I'm happy to help if you needit.
I'm glad that you celebrate ittoo, because it's it is a
milestone where weird milestone.
Speaker 1 (27:39):
I'm curious if you noticed any commonalities.
So if you had people that werecoming from other autoimmune
conditions other than obviouslythe very expensive aspect of
living with a chronic illness,were there other common themes
that cropped up with some ofthese folks that were talking
and sharing their stories?
Speaker 3 (27:54):
I mean, I guess the one thing I think about is
invisible disabilities, wherethat idea is still strange to me
, because I was at a friend'sshow.
There's a guy named StevenVerdale who has a satire
magazine called.
It's basically like the onion,it's called squeaky with the
squeaky wheel and it's great andI highly recommend listeners
follow it.
He does amazing work, but heorganized a whole fest and a
festival and I was there and Ipart of me felt bad for being
(28:15):
there because I'm like oh,should I be here?
Am I actually like, is this adisability?
Is this like?
I still grapple with that, butI think seeing the other people
being like no, this is like.
It's an invisible disability youare dealing with the day to day
but people might not alwaysknow it.
Like you know, when myhemoglobin levels were super low
because of the staples causinginternal bleeding every day, I
could barely walk up the stairsin the city.
Like the city is, it's notfriendly for people with
(28:37):
accessibility issues, and sowalking up the stairs was like
oh, so difficult.
I was out of breath immediatelyand so I felt so out of shape
and but nobody would know that Ijust was like, I just dealt
with it silently, and sometimesI 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 Ijust like didn't want to say
anything, kept it to myself, andso I did see that a bit with
commonalities in terms of otherperformers who've had that.
(28:58):
I just also learning about otherconditions.
Just I think it was sarcoidosisis that the right?
This guy like autoimmune thatcaused serious eyesight where
he's like I'm probably gonna goblind in the next few years, and
he was a comedian, so he madeit funny in a way, but it was,
and then a.
That's the weird thing too isnow I have a whole spreadsheet
of comedians and their diseasesright next to it.
It's like, oh, she has lupus,she has this.
It's like it's just a veryweird thing that I'm sure most
(29:19):
people don't have.
So I did see that's the firstcommonality that comes to mind,
and I think it was prettycathartic, at least to selfishly
just see because I'm like, yeah, it's nice to know other
people's stories because, you'reright, there are these pieces
that you look at and you go.
Speaker 1 (29:37):
I can relate to that and I think, especially as I,
you know, professionally workmore in like the rare disease
space, it's really, I think,even more important for that to
happen because especially if youhave a rare disease and you
know or you have a rare form ofyour disease, like Robin and her
, like you know, crohn's in herstomach it's a rarer form of
Crohn's, and so you know cronesin her stomach it's a rarer form
of crones and so you know youstart to go.
I'm the only one, and so justhearing other people kind of
(29:59):
dealing with their own issues, Ithink is super, super important
and I think especially makingit funny is helpful.
I mean, it's one of the reasonswe wanted to make kind of a
silly show is because we wantedpeople to come in and share
their stories, but we also dowant to have some fun with this
and sort of you know, laugh atthe pieces that are funny, like
(30:20):
celebrating the times where youreach your out-of-pocket max or
your deductible.
Speaker 3 (30:22):
I think that's important.
Yeah, and I even want to saythat, like even today, my uncle
is like a volunteer.
He's retired, but we werehaving lunch at he works at,
like, the Aviation Museum onLong 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 beon a podcast.
Like what's the podcast?
I'm like it's called bowelmoments.
And then he laughed.
He was like he just he gets mymy.
He's like, you know, if youruncle were, because of his
younger brother, my other unclehad Crohn's, if he was still
(30:49):
alive, he would love that.
Speaker 1 (30:49):
He would love to listen to that.
So you've wanted to be on thestage beginning that you were
asking us questions and thatthis wasn't about us and that,
despite the fact that you havedone lots of interviews, you're
not interviewing us.
Does this come from a place ofjust being curious about people?
Is this because you like thesort of medium, like going
through your sort of you knowyour website?
You have a lot of you knowinterviews you've done with
various people, lots ofcelebrities, and then you have
(31:10):
also like serious writing andnot so serious writing.
So you clearly you know you'resort of well first in the entire
sort of journalism space, butis there something about that
that got you interested?
Speaker 3 (31:19):
Yeah, I mean, I think I do think back to like even
college.
I remember my journalismprofessor was like what makes
like a good journalist is noteven like how smart they are
necessarily, it's really justcuriosity.
Like curiosity is such acrucial component to being a
good journalist and to being agood interviewer and I always
held that really high.
And I think I also look at thatwith other people too.
Like you know, you want to bearound other people that are
(31:40):
curious.
So for myself, yeah, curiosityis a huge thing because I think
also psychologically, I alwaysthink I have so many blind spots
or so many things like whatdon'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, whyare people doing this and why
are people acting like this?
I just don't, I just likewanting to learn.
It's.
A friend said something to merecently which was interesting.
(32:00):
He's like I learned more aboutmy friend and what they like to
do and their life from listeningto them on a podcast than from
just in person hanging out withthem in terms of just
interviewing.
I don't know.
I think it was just anotherthing where I just saw like a
lot of benefits with, like Ialways considered myself
somewhat of an introvert.
Then I was like no, I actuallydo that.
I don't think I define itcorrectly, cause I do get a
charge from just talking topeople.
I, even if I don't always liketo be, even though I do go on
(32:22):
stage, I don't always like to bethe center of attention in a
group outside of that, causethere's a lot of pressure, but
there is something from moreself-aware.
I'm like okay, again, whatdon't I know about myself?
And so it just helps bylearning from other people.
So it's mostly selfish, I wouldsay, but but yeah.
Speaker 1 (32:42):
It's interesting you say that, because I think part
of what I do love about thisshow is that, yeah, I love to
talk to people, I love to heartheir stories and I you do, and
but I also think that's notnecessarily an introvert versus
extrovert thing, like, because,especially since you like to be
one-on-one, it could be thatyou're still an enter, an
introvert, but having it ain-person kind of conversation
(33:05):
with somebody or having aconversation with one person can
still be recharging to you.
I think that's the fallacy forintroverts is that like it's
like they want to be alone.
It's not necessarily that theywant to be alone, it's not
necessarily that they want to bealone, it's just that they like
being part of a big group isn'tenergizing.
Speaker 3 (33:17):
Yeah, exactly, exactly, that's yeah, the one on
ones or like the more intimatesituation like this are the ones
that are great, like I was likeoh, I can always do that.
Speaker 1 (33:24):
I can always, as long as the people are friendly and
normal and you know so, asyou've been doing these
interviews and so because you'regoing into it as, like
journalist face, you're justgetting to know these people has
there been times, though, where, because of your invisible
disability, your medicalcondition, has that been a
connection point for you withsome of these folks?
Speaker 3 (33:42):
It's like I can think of a standup comedian I
interviewed, like years ago, whovoiced having a chronic illness
, and I was like, oh, I havethis too.
And then we did start talkingabout different medications and
stuff.
I don't know if it enhanced theinterview because it was about
comedy, though I mean itdefinitely.
I will say I mean this is offtopic now, but it did because I
did these shows wasn't when,like the whole like Luigi thing
happened and they didn't catchhim, like I had a bunch of
(34:03):
people texting me being like Ian, are you everything okay, like.
And so I was like what are youtalking about?
And I had a moment where I waslike it was like it was like 6
30 in the morning when theystarted getting texts and I was
like, did I like disassociateand like do something, like
whatever?
And it's like I just had toprocess 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 aboutinterviewing, but just I guess
I'm like oh good, I guess I lefta mark about.
Speaker 1 (34:25):
I'm leaving some type of mark, I guess, about
potentially that is a majorsticking point for a lot of
people.
I don't think that'snecessarily a bad message for
people to take away, because Idon't.
I really don't think a lot ofpeople understand fully
understand how debilitating itis to know that you have this
(34:46):
thing that's going to just costyou so much money.
And every time you're lying onyour bathroom floor going how
much pain am I in and what can Ihandle?
Do I call the ambulance,knowing how expensive that is
and what that's going to add toyour debt and all these things,
I just I don't think peopleunderstand that when they don't
live with a chronic illness, Ahundred percent.
Speaker 3 (35:01):
And also, like you know, you talk about having a
chronic illness.
It's like I don't know if thisis for everybody, I don't want
to speak to that, but like itdoes make things worse.
Like I'm not saying it causesthe diseases, I don't know.
(35:23):
It does make things worse.
And so I can think back to ayear or two ago and that's what
prompted all this like some ofthese comedy shows too is
because I had a like I justrandomly got like a five
thousand dollar bill from cvsspecialty pharmacy and I was
what is this?
And then going through thatprocess was like it's weird to
say it was hell, but it reallywas.
Like it drove me insane.
Like even while the phone wasringing and I hadn't spoken to
(35:46):
anyone, I was already in likedefensive anger mode because I
was like I was ready for someoneto be like sir, you're going to
have to call up your insuranceand 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 aswell.
Okay, and so it's just thatback and forth I would feel my
stomach being like I think Ihave to go to the bathroom now
or I yeah it just when I washaving spasms.
(36:06):
It would make it worse.
It was just like okay, this is,but it's just crazy.
It's like putting us in a corner, have the chronic illness and
then having to also have theenergy to deal with fixing these
issues because we don't haveassistants.
We don't have like an assistantthat's going to call for them.
None of us have that.
So it's just like well, howmany jobs am I doing that are
outside of my actual just job,where I have to earn money as
(36:27):
well?
And it's just like what is this?
What is happening?
You know, you talk about likethe okay, mental health.
Having mental health wouldreally help as well, but a lot
of therapists like it's going tobe $400 a session, great, okay,
so who can I take?
Is this person not as good asthe other person?
And yeah, it's just a whole mazeof figuring things out and I
think I don't know, like themoment that something does pop
(36:47):
up, like I had a test recentlyfor cholesterol and like my
triglycerides were really highand I'm like is this dangerous?
Do I have to add anothermedication to my regimen?
Do I have to statin and thenthe doctor not realizing that
Rynvoke might be the reason.
It was a cardiologist whodidn't even bring up the idea
that Rynvoke might be the reasonthat the levels are high.
I didn't know that and yeah,it's stressful.
I can't help but think, youknow, like my thirties now, but
(37:09):
like okay, what's it going tolook 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 constantthoughts on my mind.
Speaker 1 (37:20):
I mean, I think what makes me hopeful about you know,
when you're in your forties?
I think, from what we'rehearing from the researchers and
doctors, things are movingquite fast.
I think I worry a little bitabout, you know, like NIH
funding and things like that,slowing some of these things
down.
But I do know that, likelooking at the medications that
are coming down the pipelinesand looking at the research
that's being done, I feel reallyhopeful that we're finding
(37:43):
better options for people.
Now whether they can get tothem easily or not is always
going to be the question,unfortunately, with the American
healthcare system, just becauseof insurance being the way it
is.
But, like the research isreally hopeful to me that we are
getting to a place wherethey're finding better options
and so I'm hopeful.
I try not to be Pollyanna withthis, but I really do feel like
(38:03):
the conversations we've had withthe doctors that are super,
super knowledgeable and theresearchers make me feel like
that's closer than we think.
Speaker 3 (38:10):
That's really nice to hear.
I think, like in the flood ofhorrible news every day, like
this is actually very it's nicethat you said that and it's nice
to hear.
It's nice to know that there'sthere's a potential defense in
the background of like, okay,there's, there are options.
You know you have options CauseI know you know, 50 years ago
my uncle just had prednisone.
I was even talking to mytherapist about it.
(38:32):
It's like that, you know, likethey're just like yeah,
generally I'm OK.
It's just when the medical stuffgets bad, that's when it really
like trips you up mentally andthe hopelessness not to be such
a downer, but like thehopelessness really come into
play, where you're just like,yeah, just screw it, like, just
whatever, like.
But when things are going alittle better, it's a little
easier to be more hopeful.
And talking to a family memberabout I was going to have a
(38:53):
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 II actually do get excited for
colonoscopies now, cause I doget excited to be knocked out
from the propofol.
And then I light, I love wakingup and like the feeling it
gives.
Speaker 2 (39:05):
The best nap.
It's what you go through allthe prep for that propofol nap
man.
Speaker 3 (39:13):
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 youstart, once they like lay you
down on the table, I'm likebasically just smiling the whole
time.
I'm like here, we go here.
Okay, like this is the momentI've been waiting for and so
like I'm so excited.
But I remember telling a familyI'm like, oh, I can't wait for
them, just like knock me out.
And she's like wait, why wouldyou be excited about that it?
(39:34):
But I was like that's, it'sjust, it was interesting, that
reaction.
I was like, oh, I'm so used totalking to people in the
community.
They're like, oh my god, likehow, robin.
Your response is exactly likethat's how friends in the
community usually react, whereit'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 justwant to be knocked out.
Speaker 2 (39:54):
But it's like, no, it's, it's, it's a wonderful nap
I mean, if I had easy access topropofol naps, I could 100 just
be like yeah, hit me withanother propofol nap can I ask
you a quick question, clowning?
Speaker 1 (40:05):
oh yeah what, what, what kind of clowning does she
do like?
Where is she clowning I?
Speaker 3 (40:10):
think the best thing, the way she because I, because
I think the first thing comes tomind is always like birthday
clown, but how she described itto me like what?
Well, let's just think of likeCharlie Chaplin or physical
comedy, clowning, and yeah, andshe's done, like, she's done
solo shows that are really goodand she's done all that stuff
she did.
Right now she does hospitalclowning so cute.
So she works for a companycalled Laughter League and they
(40:30):
do hospital clowning and theyliterally go into hospitals and
they wear the clown nose butthey don't dress as clowns
because that, you know, that'syeah, and they go into different
rooms and just kind ofentertain the kids and learning
about all this.
I'm just like man, I wish thisis a thing even for adults.
Like we need things like thisso much because hospitals are I
mean again, I'm not going to getus into a tangent about that,
but just it's, hospitals are sodepressing that I would love to
(40:53):
have at the very least for kidsto 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 andso she'll.
She will say things to me likemy nose didn't come in the mail
yet and I'm like, oh, like, butit'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 likenever thought I'd hear that
phrase, or like yeah, cute.
Speaker 1 (41:14):
I'm glad because I also I'm very afraid of clowns,
and so I was like, oh god, Ihope she doesn't come into the
room no, no, no suddenly justhang up on you.
No, no, I think that I agreewith you.
We've talked about this anumber of times about how like
it would be nice if there wereaspects of the pediatric system
that extended into the adultsystem.
Like like child lifespecialists are wonderful, like
they're people that just likeexplain to you in layman's terms
(41:35):
or in kid terms, like what'sgoing to happen, and check on
you and bring you like coloringbooks and like make sure that
they are in an environment thatfeels safer and comfortable, and
like clowns and dogs and likeall the stuff that they do in
these pediatric systems likeespecially the big systems that
is like just kind of keepspeople wrapped up in a nice
little like you know hug.
That kind of helps them through, and so that'd be nice.
Speaker 2 (41:55):
And it is obvious that Alicia and I could talk to
you for probably another twohours, because that's how long
we've been talking to you, butunfortunately it is time for me
to ask the final question of theshow, and that is what is the
one thing that you want the IBDcommunity to know?
Speaker 3 (42:08):
I thought of two things that I will not expand
too long on, but it's somethingI keep saying to people,
depending on what your stateyou're in, if you're not doing
this already, please recordeverything with your doctor
visits.
It's better if you can ask them.
Of course can I record, butsometimes if you don't feel
comfortable doing it, it's OK,just do it for yourself.
You're not going to, you're notgoing to publicize it.
Record you open voice memos.
Record because I can say formyself I have had so many
(42:31):
sessions with doctors where I'dwalk 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'mgoing to record my set.
What can I do better?
What did I learn from this?
Same thing with doctor's visitsLike, oh, they said this, I
didn't really.
Oh, that's what that meant.
(43:00):
Because in the know, I mentionedTina, 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 soI know it's probably hard
because it feels so isolatingand when you do feel hopeless,
you don't want to meet anybodyor talk to anybody, so but if
you can find those moments tofigure out a way to meet a
community of people who are likeyou and are going through the
same thing, it is, it will kindof change everything, because it
is good to listen to doctorsyou trust, but sometimes doctors
will not recommend the bestsurgeons.
(43:21):
Sometimes the people in thecommunity will recommend the
best surgeons and people youtrust, and so that's going to be
really key to at least find oneperson that's the community,
just at least one person who canhelp with that.
So find people like Tina.
Speaker 2 (43:34):
I want to reiterate that sometimes doctors don't
recommend the best surgeon.
Alicia and I have talked aboutthis before making sure that you
have time to meet with asurgeon in advance.
Don't be scared of surgery.
It's a part of having IBD thata lot of us will have to
experience.
And the sooner that you canmeet with a surgeon just to talk
about it and get an idea ofwhat that surgeon is like, that
(43:56):
gives you an opportunity to saylike you know what, I don't know
if that guy and I or that womanand I vibe like maybe I should
go and see if there are othersurgeons out there in case I
have to have surgery.
Because when you're in asituation where it's an
emergency and you don't havetime to do that, or you have to
make a decision quick, or you goto the emergency room and they
just you know.
It's better to know what'sgoing to happen in advance in a
(44:18):
safe environment, when it's notemergent.
Speaker 3 (44:21):
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 thefirst surgeon I had I did not
give me good vibes but I waslike, oh, she's recommended.
Second surgeon did Schwartzbergand he was very good.
But how important are vibes?
Because I know they'reimportant, but if the surgeon is
amazing, do you throw vibes outthe window?
Speaker 2 (44:42):
I threw vibes out the window because the surgeon was
supposed to be amazing.
And that was the surgery that Ihad so many complications on
and had very poor careafterwards, and the first
surgeon that I had almost 26years ago.
He was like the chief ofsurgery for that hospital and
also vibes off the chart, likejust decent person, and seemed
(45:03):
like a cool dude.
And then, after the surgerythat went wrong, I reached out
to a surgeon that I knew andtrusted professionally and I
said who would you recommend?
And he was like I'm going totake you.
And then when we talked toSchwartzberg, I was like, if I
have to have another, like I'mgoing to take you.
Speaker 1 (45:19):
And then when we talked to Schwartzberg, I was
like if I have to have anothersurgery, I'm going to New York.
We literally could just keeptalking 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 pleasureto get to know you and to hear
more about your story.
Speaker 3 (45:41):
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, andif you enjoyed this episode,
please rate, review, subscribeand share with a friend.
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