January 15, 2025 • 43 mins
This week we reflect on the journey since launching Bowel Moments in August 2021, sharing our personal updates and the lessons we've learned along the way. We reminisce about the podcast's beginnings as a concept born out of a love of podcasts and how it evolved into a heartfelt platform for the IBD community, featuring memorable interactions with guests. We open up about our own journeys, revealing more than just the polished elevator pitches we've rehearsed over the years.
As we look to the future, we discuss plans for expanding our reach, engaging diverse voices around the world, and demystifying healthcare navigation by involving nurses, physician assistants, and insurance insiders. Highlighting our dream interviews, we express our desire to feature influencers like Sunny Anderson, Mike McCready, Kim Holderness and Rachel Elizabeth Slocum, hoping they can bring fresh perspectives and humor to our discussions.
We want to keep growing our incredible community of listeners who are passionate about understanding and supporting the IBD journey. So, hit subscribe, share with those who might need a dose of inspiration or laughter, and let us know what you think by leaving a review. Your support means the world to us, and we're excited to continue sharing these meaningful conversations with you. Thank you for being part of our journey, and here's to a future of engaging stories and shared discoveries!
Links:
- Our episode with Dr. David Rubin
- Our episode with Stacey C- The Deuce
- Our episode with Dr. Ashish Patel
- Our episode with Dr. Anish Patel
- Our Research Roundup Episode with both Drs. Patel
- Our episode with Dr. David Schwartzberg
- Our episode with Stacey Collins- One of our guest hosts!
- Our episode with Hannah Cramer- One of our guest hosts!
- Our episode with Derek Dodson- One of our guest hosts!
- Our episode with Lauren Erbach Barnfield- One of our guest hosts!
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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, you'll catch up andreminisce with me and Robin.
We decided to start out theyear by catching up with each
other.
We wanted to let any of our newlisteners know about why we
(00:21):
started the podcast and a littlebit about ourselves, as well as
talk about what we really hopefor in the future of our podcast
and what we're planning for2025.
For those of you who know us, Ithink you'll learn something
new, and for those who are newto the show, I hope you'll enjoy
learning a little bit moreabout us.
Cheers.
Speaker 2 (00:40):
Hi everybody, Welcome to Vowel Moments.
This is Robin.
Speaker 1 (00:43):
Hey guys, this is Alicia, and we are so glad that
you're here with us today andalways, but especially glad
today because we are recording aspecial episode.
Robin very astutely pointed outthat the last time we sort of
did an episode just about us wasin August of 2021, when we
started this show, and a lot haschanged for Robin in particular
(01:06):
, frankly and so we thought itwas probably time for us to
catch up and let you guys knowabout the changes in our life
and also just all of our ideasand visions for the future of
Bowel Moments.
So, robin, yes.
Hello everyone.
What are you drinking, Alicia?
Oh, thank you.
I am.
You know what?
It's January, so I am trying toA.
(01:27):
As I've stated on this podcastmultiple, multiple times, I'm
trying to drink more water.
So my New Year's resolutionperpetual is to drink more water
.
So here's my water bottle and Ihave had one of them already,
so I'm feeling very accomplished.
Also, just because I havemultiple people I know doing dry
January, I'm doing a slightlymodified version of that.
I'm allowing myself a glass ofwine here or there, but today I
(01:49):
am drinking poppy, which isprobiotic soda.
Not sure I buy into theprobiotic nature of it, but who
knows, if I'm going to drinksoda, I might as well drink
something that's good for me.
So this is the orange soda.
What?
Speaker 2 (02:00):
about you, robin.
I also have water, but I thinkI always have at least one kind
of water, but there is sometimesthree kinds of water.
This is true.
There is a winter storm.
There is a winter stormhappening this week, and I live
in Florida and I don't get totake advantage of cold weather
very often, so I'm having hotchocolate.
(02:21):
Oh nice.
Speaker 1 (02:23):
I think it's hilarious because I again folks,
I live in Minnesota and so itis currently like 10 degrees
outside, and so I think it'sreally cute that all these
Southerners that I'm talking tolately are like it's cold,
because I'm like it's 45 degreesin Florida.
Speaker 2 (02:39):
45 degrees in Florida .
Speaker 1 (02:40):
That's cold for us.
You guys don't have theinfrastructure for that, so I'll
stop.
Speaker 2 (02:45):
Or coats or winter coats, quite frankly.
So cheers to the first show of2025.
Speaker 1 (02:53):
Cheers to the first show of 2025.
Speaker 2 (02:54):
Yay, so we're going to do things a little bit
different, and I am going tostart with Alicia.
We're going to start with you,okay.
So for those of you who mightbe new to the show, alicia, tell
us a little bit about yourselfand how you got involved with
the IBD community.
Speaker 1 (03:10):
Okay, you know Robin Brow beat me into this because I
don't love talking about myself.
I did.
I'm shameless, no, no, it'sjust that.
Well, if people don't know onthe show, I am not the person
living with inflammatory boweldisease.
So I feel like a little bit ofjust like a hanger on poser in
this group.
But you guys are so much funthat I just really wanted to
join.
But how did I get involved kindof with the IBD community?
(03:32):
So I am a social worker.
I've been a social worker forwell.
I got my master's degree backin 2007.
I did psychology before thatand so worked social work type
roles and have always worked inchronic illness, chronic
diseases.
So I was fortunate enough toprofessionally get involved with
the community Think of back in2015, professionally got
(03:53):
involved with the Crohn's andcolitis community.
So that really is where Istarted to get to know these
diseases and started to get toknow the doctors that serve the
patients and all of thehealthcare professionals that
are part of this community and,of course, all of the amazing
patients that I met.
And so that's really where Istarted and kind of learned to
love this community and foundthat it's just.
It feels like everybody in thiscommunity just really has a
(04:16):
great sense of humor and is justsuper welcoming and it's such a
big, warm community, and so Ijust really kind of fell in love
with it, and so that's kind ofhow I got started and we just
kept you around.
Well, I think I forced myselfonto you guys.
But thank you for allowing meto stay.
(04:39):
Now I actually don't workprofessionally with the IBD
community any longer directly,but now I run a nonprofit
organization and so I've movedfrom a disease specific
organization to anothernonprofit organization that
works with people living withchronic illnesses, and so I'm
still attached to the community,still working within the
community, but just not in a IBDspecific role.
(05:00):
So still still involved though.
So that's good, and of course Istill do this show with you.
Yes, robin, now onto you.
Next question, and in our firstshow I basically kind of
interviewed you, similar to theway we interview our guests,
although much rougher.
We've gotten a lot better, Ithink, as we've gone.
So I think people probably havelistened to that show.
(05:20):
But tell us a little bit about,kind of, how did you get
involved with the IBD community.
Just kind of give us a revisit.
And then also, why did youdecide to?
How did you decide to getinvolved in this show?
Speaker 2 (05:32):
I'll try to do a quick and dirty recap.
Speaker 1 (05:36):
Sorry.
Speaker 2 (05:37):
I know because it's been so many years half my life,
actually.
I was diagnosed in 2000.
And, like most of our guests,you know, had a dramatic and
traumatic entrance into the IBDcommunity and had surgery pretty
quickly, like you know.
(05:57):
Life and death, all this stuff.
But then I had two very smallchildren.
I had a two-year-old and mybaby turned one while I was in
the hospital, you know, havingsurgery and everything.
So once I had the surgery tohave my colon removed, lived
with an ostomy for a year andthen had my takedown, I was
(06:19):
focused on taking care of mykids living life.
I didn't really engage in thecommunity on taking care of my
kids living life.
I didn't really engage in thecommunity.
At that time, 25 years ago, ifyou had ulcerative colitis and
you had your colon removed Ihate to even say this, but the
thought was and I'm using airquotes here that you were cured
right.
Fun fact, though, when I had mypathology reports done when
(06:42):
they removed my colon, they didnot give me a J pouch at that
time, which they were doing, butvery infrequently my pathology
reports came back inconclusive.
My ulcerative colitis was sobad they couldn't tell if it was
ulcerative colitis or Crohn's,and so they loosely changed my
diagnosis to indeterminate anddidn't give me a J pouch.
(07:02):
So I lived with what's calledan IRA ileorectal anastomosis,
which when we talked to Ambershe was like I was only one of
two people that she'd ever metwith that and I've only met one
other person that has had thattoo.
So I lived like that for 18years, 17 years, 18 years.
(07:22):
And it wasn't until I starteddoing 5Ks and my best friend at
the time said you should do ahalf marathon with the Crowns
and Colitis Foundation, withTeam Challenge, because she knew
someone.
It was a random thing, like Imoved from Louisiana to Texas,
met this person at work, westarted doing 5Ks together and
she happened to know somebodyone of her best friends from
(07:44):
high school.
His wife had Crohn's and theydid Team Challenge and so she
sent me the link.
She reached out to him, theysent me the link.
I did a half marathon with TeamChallenge in Hawaii in 2011, I
think 2011.
And that was it.
That was it.
That was like 10 years after mydiagnosis.
(08:05):
It was the first time I'd everbeen around a community of
people that knew what I wasgoing through, that I didn't
have to explain anything to.
Before I knew what Camp Oasiswas, I called it summer camp for
adults.
Like I had found my people, Icame home from that race and
immediately signed up for thenext race, which was in Las
Vegas.
And I did that one.
And then I did Hawaii again andI did Vegas again and I did
(08:31):
Nashville, virginia wine country.
Like I was fundraising andrunning these races.
And then they actually didstart a take steps walk in my
community for the first time,which was wild to me because I
lived out in the middle ofnowhere, west Texas.
So I got involved with helpingwith the walk.
But I also, on the download,was looking for a job.
(08:53):
You know I wanted to make havea bigger impact on the community
.
So team challenge was myintroduction to being involved
with the community and as a partof my fundraising I started
writing an article for the localnewspaper to like, follow my
fundraising and share my journey.
And so many people respondedand sent me letters saying how
they thought they were alone.
They thought they were the onlyone.
(09:13):
My story inspired them so muchand I was like hooked to like.
Like the IBD community was justso welcoming and so awesome and
inspiring to me and if my storycould help them to know and
understand that they weren'talone, then I wasn't going to
stop telling it.
So that's like how I gotinvolved with doing stuff more
(09:34):
actively in the Crohn's andcolitis community and then
that's eventually met you a fewyears in doing that and then for
this show specifically, Ineeded a different way to share
my story because I was flaringagain and it became very hard,
very taxing mentally, to be inperson in with people, live,
(09:59):
living my experience, but tryingto downplay it so that I could
focus on other people's storyand challenges and helping them
to advocate for themselves andteaching them how to share their
story.
So I think it's just the natureof working in nonprofits,
especially disease nonprofits.
It was very emotionally andmentally taxing for me because I
was really symptomatic andnormalizing that and kind of
(10:24):
living in denial with that.
So yeah, that part was hard butI needed a new way.
I needed a new way to be ableto support and help this
community that I love so much,without that direct person to
person connection that was likeat that point in my life, so
emotionally and physicallydraining for me.
Does that make sense?
Speaker 1 (10:43):
It does.
Yeah, I mean cause, of courseyou know I knew you at that time
, that's, you know you and I hadalready gotten to be friends at
that point and I think IBD wasjust such a presence in your
life at that time, just becauseyou were so symptomatic, but
also because it was like becausecareer wise, that's what you
were focusing on and so you were, you know, having to travel a
lot for your job.
(11:04):
You're constantly, constantly,constantly, constantly in the
community and constantly beinglike kind of hyper aware, and so
I know that that can be, thatcan be too much, it really can
be.
And I think you know, steppingback and deciding to keep it as
a smaller portion of your sortof everyday life or a smaller
portion of your sort of whatyou're, what you decide to do
(11:24):
for fun, professionally,whatever you know kind of, is
different than and being able tokind of focus your energies
elsewhere, I think makes a lotof sense.
So I yeah, I know I know it gotto be too much for you and and
I you know to be frank and withfrank with the audience, there
are times where I worry thatthat's going to happen again
with this, because we are, youknow we are having to have a lot
of conversations with a lot ofpeople.
(11:44):
We hear some really toughstories, you know.
We hear people at their worst,sometimes at their worst moments
and and you know, and I knowthat that's got to be
challenging for you especially.
I know you know your, yourhealth has gone and you've been
very open about your health onthe show and you have had some
struggles kind of, you know,with surgeries and and new, a
(12:05):
new Crohn's diagnosis instead ofulcerative colitis, that kind
of thing, and so you've kind oflived it real time with us.
And so I'm curious aboutsharing your, your story so
publicly.
What has that been like?
Because I think it's a slightdifference here.
I think this is what peoplemaybe don't understand is I've
joked about it feels like we'rescreaming into the void, like
you share your story verypublicly, but at times it feels
like we're just talking to eachother and nobody's listening.
(12:28):
So it's public, but it's alsosort of sometimes doesn't feel
public.
So I'm curious, like what hasthat experience been like for
you sharing on a podcast whereyou know what's going out to
people, but it really at thetime feels like it's a
conversation between you and meand one other person usually.
Speaker 2 (12:41):
Yes, even like right now, with us talking to each
other.
This is like an intimateconversation between friends,
right?
So it makes the sharing, theinitial sharing of it, so much
easier, even with the guests,because I like, is that one on
one connection with someone?
After the fact, I have told youmultiple times that I don't
know how many times I've said it, I'm sure it's been cut out of
(13:01):
the show, but like I get avulnerability hangover and once
I had my first one, I dodiscovery calls now with our
potential guests and I kind ofwarn them about that.
I asked them about have theyever shared their story publicly
before?
Are they public with theirstory, like on their social
media channels?
Like I asked them how publicthey've been with their story,
(13:22):
because we have had two gueststhat have asked us not to air
our conversations because theydid have that whiplash, almost
that vulnerability hangover, andit's that realization that, oh
my gosh, I've said too much.
For me personally, when I getthat feeling it's like I have a
story that I have created aroundmy IBD, things that I have
(13:45):
cultivated that are okay for meto share, that don't affect me
mentally or physically.
Like this is my quick fact sheetright, my elevator pitch about
my disease.
One, two, three, check off thelist, and you'll hear that
sometimes, with guests on ourshow where they run through
their story like this, this,this, this, this and then you
and I have to like really dig inand ask questions to get more
(14:06):
to the root of that, becausethey have their story down pat,
right, and so I do too.
And what I find on this show,because of the format of it, I
am sharing more, I am goingdeeper, I am being more
vulnerable with what I'm goingthrough and I am deviating from
my elevator pitch about myjourney, and so that can be
(14:29):
really hard.
But also I feel like I shouldsay why it can be really hard,
because I feel like that mightbe helpful.
I feel like I should say why itcan be really hard because I
feel like that might be helpful.
When I admit it, then I have toacknowledge it and then I have
to address it, and then there'sall of these things that go
along with that Right.
So when I talk about it withyou, with our guests, when I'm
(14:49):
sharing something that'shappening with me, to relate to
them, to help them to know thatthey're not alone, all of those
things.
When I admit it in this way, insuch a public way, it is there
for me to go back and revisit,and so it keeps me accountable,
but it also it does a number onme because I have deviated from
my perfectly curated elevatorpitch about my disease journey.
Speaker 1 (15:09):
Yeah, there is gosh.
What is the?
What is the term Like?
It's like, once you speak it,it sort of becomes reality and
so, yeah, it is.
It's a way of admitting thatsomething is different than
you'd like it to be.
So yeah that's got to beincredibly difficult.
I appreciate you doing that,Robin, because I know that's,
that's a challenge.
Speaker 2 (15:27):
Yeah, it's what I'm meant to do, I think I hope so.
Speaker 1 (15:32):
Because otherwise we don't have much of a show,
because otherwise we don't havemuch of a show.
Well, that's not true.
We had other people sharingtheir stories.
But I do think that yourvulnerability is helpful to our
guests.
I think the fact that you'resharing with the people that are
on the show does make it feeleasier for them to share their
stories.
And I don't mean that in like aweirdly manipulative kind of
way.
I just feel like it fostersthis environment of you know,
(15:55):
like we're just telling eachother stories, we're just
telling each other ourexperiences, and it's okay to
have these experiences, you know, and it's okay to kind of deny
them at times and not let themhave power over you when you're
just not in the right place.
You know they're going to reartheir heads whether you like it
or not, but it's you know.
So I think I think you sharingthe times where it's it has been
a struggle for you or where youhaven't been a hundred percent
(16:17):
and you've let it kind ofdwindle, dwindle, dwindle and
like you've needed an ironinfusion or whatever it is, is,
you know, it's definitely like Ithink that's normalizing a lot
of this experience for patients.
Speaker 2 (16:26):
So yeah, I hope so.
Okay, we're going to switchthis back to, hopefully,
something that's not going tomake us cry, but who knows?
At this point I have to ask youif you remember number one,
when you first came up with theidea for the podcast because the
podcast was your idea and doyou remember that first text you
sent me about it and what wereyour thoughts about the podcast?
Speaker 1 (16:46):
back then.
So, yes, I very much rememberwhen I came up with this idea,
because it was probably, I think, 2017, 2018.
And it was because I listenedto a bunch of podcasts.
At that time I was driving, Ithink somewhat, or I maybe was
commuting on the train and so Iwas listening to a lot of
podcasts.
That's just what I would do.
And so I was like I didn'tnecessarily see another IBD
(17:09):
podcast.
My initial idea for the podcastwas that it was going to be
really kind of short, veryfactual, informative kind of
podcast.
I was like it's going to bereally kind of short, very
factual, informative kind ofpodcast.
Like I was like it's going tobe somebody talking about, like
J pouches, right, you know, likeone very specific thing and
that's why it was called bowelmoments was because it was going
to be a little snippet ofinformation that got completely
thrown out the window, I think,the moment I spoke to you.
(17:30):
But I also realized like Ican't do this on my own Cause
again, as I've admitted, likeI'm not a person living with IBD
.
I love this community and Ihave kind of my role to play in
the podcast, but it reallyneeded somebody like you who is
willing to openly share theirstory and who is willing to
facilitate the conversation withsomebody because of that you
know and and who is sounabashedly open with their
(17:54):
experiences and and you know,cause it's just not the same
conversation with somebody whoisn't living in the part of the
community.
And I get that, I a hundredpercent admit that.
And so I was like who do I know?
Who is that type of a person?
And I was like I know, robin.
So I think I think I sent you atext message saying I have this
idea, you know, but I'm notsure kind of where to go with it
(18:14):
, what to do with it, and I'dlike to do it, but I need, I
need help.
So I think that's probably thetext I sent you, but I don't
remember.
Speaker 2 (18:19):
I remember you asking me about the name and then like
asking me if I wanted to dothis with you no-transcript.
I loved it.
(18:44):
I thought it was perfect.
I think it took me like 20minutes to come up with our logo
.
I mean, it took me a little bitlonger to put it together, but
it didn't take me long, okay, soI'm going to build on that.
What's been one of yourfavorite moments or like
episodes?
So?
Speaker 1 (18:53):
far.
Oh God, there's so many.
This is the thing like.
We've published so manyepisodes.
You know my I don't know ifit's my favorite moment, but my
most unexpected moment was whenDr David Rubin made us both cry
within like the first threeminutes of him speaking, and it
totally unexpected, totallyunexpected, and so I just that
(19:13):
was such a memorable momentbecause he's such a big name in
the IBD community and I did notknow his kind of origin story
and so I remember being takenaback by that and kind of having
to try to get my game face backon.
So that was probably one of mymemorable moments.
I don't know if it's myfavorite moment, but I think One
of my favorite episodes andthis is not no shade on anybody
(19:33):
else is Stacey the Deuce, staceyCalabro, who is an early, early
episode for us.
She was just so freaking funny.
And what is sad and we've saidthis on the show before is that
we keep ourselves muted most ofthe time so that you don't get
our background noise.
In fact, you're probably goingto hear some background noise
because I'm not muted, so my dogoccasionally will bark, robin's
dog will bring her a toy.
You know stuff happens and sowe normally so we keep.
(19:55):
We kept ourselves muted on thatshow and it was.
I laughed so hard and so loudthat afterwards my husband was
like oh my God, are you okay?
When I came out of the room andso I think that's probably one
of my favorite memories is justhim being like what were you
guys talking about?
And just like cause I had, Iwas just open mouth laughing and
(20:15):
you guys can't hear us doing itbecause we're muted, but she's
just was so funny.
What about you, robin?
Okay, I loved our conversationwith David Schwartzberg, like he
was just hilarious and alsolike he's an absolute treasure,
Like, yeah, that was one ofthose where I was like do I love
this man?
I think I love him, Like Ithink we just became best
friends Like those where I waslike, do I love this man.
I think I love him I think wejust became best friends.
Speaker 2 (20:36):
Like honestly, he is hilarious and so like just a
genuinely nice person andwilling to help and wanting to
do the best that he possibly canfor all of his patients.
Like again, all of our guestshave been awesome I would have
to say Ashish and Anish forbeing like the first.
Speaker 1 (20:53):
It's a little bit like a Sophie's Choice when
we're doing this, because it'slike they're all like good in
different ways, you know, andall of our guests have been so
fun to get to know, so yeah, butanyway, you are.
Yes, I love, I love the DoctorsPatel.
That was a very fun episode.
Speaker 2 (21:06):
But they but I mean they came on before we we had
not published any episodes.
They were some of our veryfirst interviews, the timeline
of the show, you guys, weactually started recording
episodes in the fall of 2020.
So Alicia sent me that text.
We had work and you know, lifeand all of that stuff happened.
(21:27):
And in 2020, I do remember thisand I might even actually still
have this text, I'm not sure In2020, alicia sent me a text
message with a picture of apodcast microphone.
Like, look what I just bought.
And I thought it was for thepodcast, but it was for work,
because in 2020, everybody wastransitioning to, like live
events, to virtual events andall of that stuff.
So I said, oh, are you startingthe podcast?
(21:49):
Like, is this something that'sgoing to happen?
And you said, no, it's for work, but maybe we should.
And then I immediately went onAmazon and bought the same
microphone.
That's how, like, we started.
This conversation started in2017, but we didn't actually
take action or start recordinguntil 2020.
We recorded what?
Three or four episodes and thenI found out that I had to have
surgery and I was going to gohave surgery and be on medical
(22:14):
leave for two weeks and then goback to be in the hospital for
three or four days and go backto work, and we were just going
to keep on trucking on and Iended up actually being in the
hospital for two weeks Againlike how I was feeling before
the show started, when we firststarted recording.
And then my life got turnedupside down with everything that
happened with that surgery.
In case you are new to the show, I had J-pouch surgery in
(22:36):
December of 2020.
And I had all of those thingsthat you have to sign waivers
for the things that can go wrongin surgery but usually don't.
That happened to me Respiratoryfailure, heart failure, I went
septic, I was in ICU, I had anabscess in my pelvis, pneumonia,
like all of those thingshappened, and I was ended up
being in the hospital for twoweeks and being out on medical
(22:59):
leave for the entire 12 weeksthat they allow you for FMLA.
I still needed to have anothersurgery.
So while all that was happeningwith me, we stopped recording.
So everything was on pause.
We didn't even know if we weregoing to get to do the show, and
then we started recording againin March of 2021.
And then we published in Augustfor the first time.
So it was like an extended,like we built up several
(23:21):
episodes and really workedbehind the scenes to get
everything where we wanted it tobe Once we knew I was going to
live.
Speaker 1 (23:27):
Yes, yeah, I wasn't going to say that, but there
definitely was a like I don'tknow if we want to start a show
and then not have you there.
That's a little bit weird, butalso it took a long time for you
to recover as well.
I mean it's just, you know,energy wise, stamina wise, and
this is, you know, as we'vestated to everybody, this is our
second job that we've givenourselves, and so it does mean
we, you know, there's effortthat has to go into it on both
(23:50):
of our parts.
Speaker 2 (23:51):
Yes, so the timeline of the show is that, and so we
started with guests that we knewand felt comfortable with.
But Ashish and Anish, like wehadn't published episode one,
and they were like, yes, we willbe your guests and have kind of
been champions of the show.
This you know right from thestart, and so they're always
going to be like my faves.
For that reason, like they justearly adopters, they were early
(24:14):
adopters.
Speaker 1 (24:16):
Yes, Well and that, and I have really liked our
research roundup episodes.
I know sometimes we get alittle into the weeds on those,
but I do think you know thiscommunity is so smart and
engaged and so, you know,invested, and so I know a lot of
the people that you and I arefriends with.
That's part of this communitylike they want to know what's
happening in research andthey're usually pretty up on it.
(24:36):
But you know, one of the thingswe wanted to do is really
capitalize on, you know, ourmedical professionals that are
coming back from these bigconferences.
What do they learn?
What should you know about whatthey learned?
The evolution of there beingmore interest in diet and
(24:57):
psychology and mental health andthe sort of holistic view of
living with a chronic illnesshas become much more at the
forefront of a lot of theseconferences.
So that's been fun to see.
I don't know, we just have somany good guests it's hard to-.
Speaker 2 (25:05):
We do.
I will say that because we hadpelvic floor on, I started
seeing a pelvic floor physicaltherapist.
So I mean I had already beenseeing a therapist because of
just the recovery from thatexperience, that medical trauma,
but so I started seeing apelvic floor physical therapist
too.
I hope that, like those kindsof shows have helped everybody
to understand that I mean, evenif you don't have surgery, like
(25:29):
the amount of times that we goto the bathroom a day, you
should probably be working witha pelvic floor physical
therapist.
It's mind-blowing some of thestuff.
So I like that we took thatapproach and really wanted to
talk to everybody that servesthe community and not just focus
on GIs and patients.
Speaker 1 (25:46):
Yeah, and I think even just having surgeons on to
help really demystify that, Ithink a lot of people say it
like it's last resort kind ofthing, when the you know the
reality is it needs to beanother tool in the toolbox and
that you know.
Getting to know a surgeon andfinding the right person that
you're really comfortable withand you feel like is going to
understand you and your case andthat you like, is another big
thing.
You know, I would much ratherhave that person lined up in the
(26:08):
event I might need them,instead of having just an
emergency like oh God, I have tohave surgery, just whoever is
on duty, kind of thing.
So that, to me, has beenanother kind of important lesson
that I've learned.
As you know, don't think I can.
I don't think I can because Ido feel like we have grown a lot
(26:36):
.
But I am curious because I havehad so much fun doing the show
with you, hence why we're stilldoing it and not getting paid
for it, in fact paying money todo this.
But I am curious how do you,since you have gone back and
listened to some of our initialepisodes, how have we grown as a
show?
Oh my gosh.
Speaker 2 (26:53):
So first of all, kudos to you because you do the
production, the editing, addingthe music, the intros, sometimes
the outros.
Like you guys, if I had to editthe show we would never have
published because I could notstand to listen to my voice for
the first few episodes that wasdefinitely something it takes
(27:14):
some getting used to.
It takes some getting used to.
I always feel like I'm sofreaking loud and I'm like
Alicia.
Can you please turn down myvolume?
I am obnoxious.
Can you please make it like towhere I whisper or something?
I don't know how.
I guess I'm just for Seinfeldfans.
I'm a loud talker, I don't knowwhat else to.
Speaker 1 (27:35):
I don't know what else to say about it.
The other thing for people toknow is that you do have a
tendency to, when you want tomake a point, you lean forward
where your microphone is, and sothere is that.
I have noticed that because Ialso watch you and during the
show and like, and then you'llbe like let me tell you, and
you're like right up into themicrophone, which, sorry
everyone, I'm sure I just blewout your eardrums right there.
Yes, but it's, it's funny.
I think it's funny every time,so I don't say anything.
Speaker 2 (27:56):
I have something to say and I want to make sure you
hear it.
I mean, I don't know.
So you have like just the, theediting on the shows, from show
one to show 125, the work thatyou have done and like taught
yourself how to do, and all ofthat is just like mind blowing
to me.
In order for us to have, like,our show get better and better
(28:18):
and better, I started to havethe discovery calls with our
potential guests so that I couldprep them a little bit more.
After we talked to somebody whohad never really shared their
story like this before and wejust did it cold.
Um, we'd only had emailcommunication with them and we
ended up having to rerecord anepisode.
I felt like I needed to startprepping our guests a little bit
better, because that part fallsunder my purview, and so I feel
(28:41):
like that has helped our guestsunderstand what we do and they
get like a pre-run sharing theirstory with me first and I get
to ask them questions and I getto point them in directions that
we may go on the show so theycan be prepared for it, to point
them in directions that we maygo on the show so they can be
prepared for it, and so I feellike that has helped prepare our
guests better and help themfeel more comfortable when they
get live with us here on Zoom,and I think that the fact that
(29:04):
the people who have been guestson our show recommend their
friends or people they know orpeople they follow, like the
other accounts they follow, thatinspire them.
We've gotten some really goodguests that we would never have
known or been introduced to ifit hadn't been for people that
were already willing to sharetheir story with us, so I feel
like we're able to share morediverse stories and experiences
(29:27):
because of that.
Speaker 1 (29:27):
Yeah, that is a huge compliment when one of our
guests shares the show or whenthey when they recommend that
somebody be on the show with us,because it means they had a
good experience.
And it's hard to know.
I mean, I've said that we don'tget a ton of feedback, and so
it is nice that is.
The one piece of feedback thatwe do get is that when we have
our guests say, actually youshould talk to this person or
(29:48):
I'd like to come back again.
Even the people that have saidI'd love to come back on your
show.
So that's such a new people,different people, and you know,
and helping us provide voicesthat we haven't yet, and that
you know people that maybehaven't been on other shows too.
So that's been, you know, a bigpart of your job and it's been
(30:09):
a huge asset to the show as well.
So you're doing a great job.
Robin, I guess I'll keep youaround.
Speaker 2 (30:14):
I would also like to give a shout out to our guests
hosts too, like Stacey has beena guest host and Derek Dodson
has been a guest host and Hannahhas been a guest host.
Lauren Erbuck-Larnfield hasbeen a guest host.
Like that has been awesomebecause look you guys, for a
while there we were doingepisodes every week, which is
cuckoo for Coco Puffs.
(30:35):
When we talk to other peoplewho do podcasts, we're just the
two of us and we are pumping outepisodes every single week with
our travel schedule for workand all of that.
So we're glad you're stillsticking with us, even though
we're going every other week.
But because of that we did haveto call in guest co-hosts
sometimes.
So we're really grateful forthem and their insights and
their willingness to jump in andpenchant for one of us.
Speaker 1 (30:58):
Yes, yeah, it's been fun to have them on too, just
because you know just adifference in how we do the show
.
All right, well, robin, we havecelebrated the good times of
our show and recognized you knowkind of how far we've come.
But I want to talk about thefuture.
So what do we want to achieve?
What do you think our goalsshould be?
I mean, it's in the era of goalsetting, right.
Speaker 2 (31:25):
Like we're doing, manifesting what's the future of
our show.
I mean always sponsorshipsomewhere, somehow.
But we need a lot morefollowers and listeners for that
.
I know that, a lot moredownloads to get to that point,
but that would be like you know,rainbows, unicorns, glitter,
confetti that's like pie in thesky kind of thing.
Oh golly.
I want to share as many diversestories as we can, all kinds of
(31:50):
diversity like diseaseexperience, community experience
, cultural experience.
There are what?
3 million estimated, 3 millionpatients in the United States
and 10 million worldwide.
Is that correct?
You can fact check me on that.
So I feel like there's just somany more stories that we can
share, and I appreciate thatwe've been able to share some
(32:12):
international experiences too.
I feel like that's beenimportant, but I just I want to
keep helping people to sharetheir story.
If you could interview anyone,alicia?
if you could interview anyoneyou do, but I but you.
I want you to add like a youare like the interviewer, I feel
like you're the interviewer andI'm like color commentary
(32:34):
sometimes.
So when you do yours, I want toknow, like if there's somebody
that you like, your dream personthat you'd want to interview.
Speaker 1 (32:41):
Oh okay, so who would I, who would I want to
interview?
You know, I thought about that,that's like.
I think there are some folkslike that are like.
Sunny Anderson, for instance,is a really interesting person
for us to potentially like thatI think would be really fun to
get to know.
A she's really funny, so Ithink we just really enjoy
talking to her.
B she has such a public facingjob and her jobs are things that
(33:02):
I just kind of go or don't feelconducive to having ulcerative
colitis, and so I would bereally curious to get to know
her and her experience of beingon television but also being a
chef and all these things.
And so you know we've talked toa chef with IBD, obviously
Abigail Marie, the chef with IBD, you know it.
Just I think it could be reallyinteresting to get to know her.
You know Mike McCready isanother one that I think would
(33:23):
be really fun to get to know.
Just again, same thing.
He has such a job where you'reon stage.
You can't go off stage wheneveryou feel like it.
You're in the middle of aconcert, right.
So those are people that I justkind of say they have such
interesting jobs as it relatesto being a person who may be
symptomatic or may have thistype of disease, also just being
on the road and traveling andall these things like how do
they navigate all of thesethings.
(33:44):
So those are folks that I thinkcould be really, really fun to
get to know.
I mean, david Rubin was likeour number one.
We'd love to get to know youguest and we'd be interviewed
him.
So I think that's, you know,that's great.
But I know we have a ton morehealthcare professionals that we
haven't talked to.
So I would love to talk to evenmore of our folks, even more of
our people that are involved,especially in some of those sort
of areas that we have touchedon but haven't spent a lot of
(34:06):
time on.
And so I think people likenurses and PAs we haven't had as
many conversations with them.
So maybe some of those folksjust talking about kind of how
their role is different withinour community than it is for,
like the gastroenterologistthat's scoping them we had a
conversation about potentiallybringing in an endoscopist, and
so some of those people that arejust really involved.
I think the other thing is justnavigating.
(34:27):
Health insurance is so freakingcomplicated.
If we can find somebody who canreally help us talk about, like
kind of maybe somebody who'seven an insurance insider kind
of person that could really talkto our community about how to
best navigate the healthcaresystem, could be super, super
valuable.
Personally, I think that wouldbe really awesome.
Vision-wise for the show, Iwould love to be able to do some
(34:49):
commercials.
That's one thing I sort of havehad on my radar and, just in
typical Alicia and Robin fashion, haven't had the capacity to
really do because it requires meto write the commercial, record
the commercial, convince youthat you need to help me write
this and record this commercialand find time that both of us
can actually do it, and so itjust hasn't happened.
Also, it would require us tospend some money as well.
(35:09):
So that's another one that Ithink it would be fun to do some
commercial.
The other thing that my puttingit out into the universe is
that I would love to be kind ofmedia for one of the conferences
.
Scrubs and Heels is a reallycool organization that works
with women in the GI space and Ithink it'd be really fun.
We happen to be women we're notGI professionals, but we happen
(35:32):
to be women and Robin has IBD,so I feel like that qualifies
her.
So being able to be kind of onthe ground commentary and to be
able to record some of theseconversations with people, kind
of live as they're happening,would be super cool.
Do I know how to do that?
No, not yet, but we certainlycould learn it, and so that's
another sort of vision I havefor this.
But I have so many more and Ineed to stop talking because
(35:52):
eventually we'll our show isgoing to be six hours long.
Speaker 2 (35:55):
I do love those.
I would love to put us in tomoderate some of those
conversations at the conferences.
I think that it would just bechef's kiss.
Speaker 1 (36:04):
I think us at like DDW moderating a panel, come on,
I mean get on board with thevision.
Speaker 2 (36:11):
Everyone get on board with the vision of this
happening.
Speaker 1 (36:14):
ACG, aga.
Come on people.
Is there anybody on yourwishlist so?
Speaker 2 (36:20):
there's two people that I would love to have on the
show and they're both likeinfluencers One, kim Holderness
the Holdernesses, kim Holdernessoh, they're so funny, they're
so funny.
And the other one, her name isRachel Elizabeth Slocum.
She does positive affirmations,she is an influencer on TikTok
(36:42):
and Instagram and Facebook andall that, but she, she has IBD.
She's talked about it, butthat's not what her um, she also
talks openly about being arecovering addict, and so I
would love to talk to her aboutmanaging IBD and being a
recovering addict and also likewhy did I not come up with
(37:03):
positive affirmations like I Imean, she does it like she's
trying to get thick, but I'mlike I need to have positive
action.
I need to like give my, mybooty a little pep talk about
you know, stop trying to kill me, you know.
Those are my positiveaffirmations today.
We're not going to go to thebathroom 15 times.
Are we New booty Judy?
(37:23):
No, we're not.
We are, but that's just thestage of life I'm in right now.
So she is so freaking funny.
I just I think that she would bea good guest on the show and
it's something we haven'taddressed.
How do you manage that?
Like the pain and everythingthat comes with IBD, and then
you're recovering.
So you really shouldn't betaking those kinds of medication
(37:44):
.
Rachel, if you listen to ourshow, I would love to have you
on here.
When you started, when youthought about this and you
thought it was going to belittle nuggets.
Even when we startedinterviewing people, we thought
it would be what?
Speaker 1 (37:56):
30 minute shows.
Oh my God, I think we said itin our first episode.
It's like it's going to belittle.
30 minute episodes is ourvision, and even that episode
wasn't 30 minutes.
Speaker 2 (38:05):
Yeah, this is par for the course for us.
Speaker 1 (38:07):
This is the reality, though, is that very, very
quickly, I think you and I bothrealized that once you start
asking people to share theirstory, there is so much to every
person's IBD story that justgetting them to share their
story is 30 minutes alone, andasking any questions afterwards
is just gravy.
And so you know and that's thepart we want to be able to dive
in more and ask questions andsort of get to know these people
(38:29):
really well or as well as wepossibly can in 45 minutes to an
hour.
And so I think we realized, forbasically the second episode,
that 30 minutes is a sillyvision because it just has never
happened.
So there's just so much.
There's so much to each of thesestories and it needs to be
heard.
It can't just be like I haveIBD.
End of story.
Speaker 2 (38:49):
That's true.
I am going to flip the scripton you because you've never had
a chance to answer this question.
So, alicia, what is the onething that you want the IBD
community to know?
Speaker 1 (38:59):
It's all stuff that has been said and it feels very
trite, but that number oneyou're not alone.
I think that's the one thingthat we've we've heard from.
This is like even when you weretalking about, like getting
involved with Team Challenge andyou sharing your story in the
newspaper and how many peoplefeel so isolated and alone.
And that's one of the reasonsthat we do this show is that we
want people to to feel likethey're not alone, and that
(39:20):
there is another story thatsomebody that has had a similar
experience to you and so you cankind of feel it sort of
normalizes the disease, and so Ithink that's number one.
Number one I think the otherthing is that the importance of
building the right healthcareteam around you.
If you can get a team, which isnot always possible, but at
least creating a really goodrelationship, or finding a GI
(39:42):
professional, either agastroenterologist or a nurse
practitioner or a PA that youreally trust, because this has
to be such a long-termrelationship with that person
and there's going to be ebbs andflows and ups and downs and
it's going to be probably yourprimary person that you're
talking to.
What I have seen happen in a lotof different chronic disease
(40:02):
states is that you start outwith your specialist.
Anything happens.
You start with your specialistand you go down from there.
You know it's sort of it's notlike you start with your GP and
you escalate up it's.
You start with it Is this myCrohn's?
It's not okay, what is it nowLike?
And then you move on kind offrom there, unless it's just so
obviously not your Crohn's whichCrohn's is a bitch?
It kind of just throws allsorts of crazy curve balls at
(40:24):
you.
But I think you need somebodythat's going to be okay with
those, like you know, my chartmessages like oh my God, is this
something I need to beconcerned about?
If you don't feel like you havethat, then you need to try to
find somebody that really isgoing to become your partner in
this, Because I think so much ofyour quality of life and your
confidence in your diseasemanagement is going to come from
that relationship.
(40:44):
So I think that's probably whatI would say.
The other thing I would say andthis is we say this a lot is get
involved in advocacy, you know,even if it's just talking to
other people about yourexperiences.
But legislative advocacy is sokey, and I feel like legislative
advocacy especially makes youfeel so empowered with a disease
that takes so much away fromyou.
It gives you something to sortof take that back a little bit,
(41:05):
and so to me, like that'sanother thing.
So I have three pieces ofadvice, and I'm not saying one,
it's our show, we can say it, soget involved in advocacy.
Robin, this has been such agreat conversation.
Thank you for talking me intoit, and I am so excited for
everything that we've gotplanned for the future and I'm
so excited for ourmanifestations to go out into
the universe and come back to us, because you know fingers
(41:26):
crossed and I can't wait to seehow we keep this podcast growing
and to see all of our newguests join us.
Speaker 2 (41:33):
We have already have a good lineup for 2025.
We only have I don't know alittle bit more than a handful
of spots to fill to get all 25shows.
So I'm very excited about thatand I am so grateful that you
did ask me to do this with you.
It's been just the bestexperience.
I'm so glad that you're myfriend and we stayed friends and
(41:54):
to our listeners, thank you.
You guys are going to laugh ifyou listen to this show.
Thank you for being on thisjourney with us.
Don't get triggered, anyone.
Your support literally meanseverything.
If you have questions for usthat you want us to answer on
social, if you have suggestions,if you have topics you want us
to cover, please send them myway.
(42:15):
You can email me at robin atbell moments podcom or hop Uber
to at bell moments pod onInstagram and send me a direct
message.
I will get it.
I'd love to know what you wantus to talk about, what you want
us to ask our guests about, whatyou want more information about
so that we can make the showbetter for you.
Speaker 1 (42:33):
Well and in typical fashion.
Don't forget to subscribe toour show and, better yet, make
sure you share it with yourfriends and family.
We want more and more listeners, so please share it with folks
that you think that would beinterested, and also feel free
to leave a review If you havesomething nice to say, please,
preferably please leave a reviewfor us, because definitely I
know I read reviews on showsbefore I listen to them.
(42:54):
So if you have some nice thingsto share, we would love to have
them on our reviews, please.
Speaker 2 (43:04):
So thanks, guys, because I want you all to be
part of these importantconversations.
Thanks for listening, everyone.
Until next time.
Cheers.
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, you'll catch up andreminisce with me and Robin.
We decided to start out theyear by catching up with each
other.
We wanted to let any of our newlisteners know about why we
(00:21):
started the podcast and a littlebit about ourselves, as well as
talk about what we really hopefor in the future of our podcast
and what we're planning for2025.
For those of you who know us, Ithink you'll learn something
new, and for those who are newto the show, I hope you'll enjoy
learning a little bit moreabout us.
Cheers.
Speaker 2 (00:40):
Hi everybody, Welcome to Vowel Moments.
This is Robin.
Speaker 1 (00:43):
Hey guys, this is Alicia, and we are so glad that
you're here with us today andalways, but especially glad
today because we are recording aspecial episode.
Robin very astutely pointed outthat the last time we sort of
did an episode just about us wasin August of 2021, when we
started this show, and a lot haschanged for Robin in particular
(01:06):
, frankly and so we thought itwas probably time for us to
catch up and let you guys knowabout the changes in our life
and also just all of our ideasand visions for the future of
Bowel Moments.
So, robin, yes.
Hello everyone.
What are you drinking, Alicia?
Oh, thank you.
I am.
You know what?
It's January, so I am trying toA.
(01:27):
As I've stated on this podcastmultiple, multiple times, I'm
trying to drink more water.
So my New Year's resolutionperpetual is to drink more water
.
So here's my water bottle and Ihave had one of them already,
so I'm feeling very accomplished.
Also, just because I havemultiple people I know doing dry
January, I'm doing a slightlymodified version of that.
I'm allowing myself a glass ofwine here or there, but today I
(01:49):
am drinking poppy, which isprobiotic soda.
Not sure I buy into theprobiotic nature of it, but who
knows, if I'm going to drinksoda, I might as well drink
something that's good for me.
So this is the orange soda.
What?
Speaker 2 (02:00):
about you, robin.
I also have water, but I thinkI always have at least one kind
of water, but there is sometimesthree kinds of water.
This is true.
There is a winter storm.
There is a winter stormhappening this week, and I live
in Florida and I don't get totake advantage of cold weather
very often, so I'm having hotchocolate.
(02:21):
Oh nice.
Speaker 1 (02:23):
I think it's hilarious because I again folks,
I live in Minnesota and so itis currently like 10 degrees
outside, and so I think it'sreally cute that all these
Southerners that I'm talking tolately are like it's cold,
because I'm like it's 45 degreesin Florida.
Speaker 2 (02:39):
45 degrees in Florida .
Speaker 1 (02:40):
That's cold for us.
You guys don't have theinfrastructure for that, so I'll
stop.
Speaker 2 (02:45):
Or coats or winter coats, quite frankly.
So cheers to the first show of2025.
Speaker 1 (02:53):
Cheers to the first show of 2025.
Speaker 2 (02:54):
Yay, so we're going to do things a little bit
different, and I am going tostart with Alicia.
We're going to start with you,okay.
So for those of you who mightbe new to the show, alicia, tell
us a little bit about yourselfand how you got involved with
the IBD community.
Speaker 1 (03:10):
Okay, you know Robin Brow beat me into this because I
don't love talking about myself.
I did.
I'm shameless, no, no, it'sjust that.
Well, if people don't know onthe show, I am not the person
living with inflammatory boweldisease.
So I feel like a little bit ofjust like a hanger on poser in
this group.
But you guys are so much funthat I just really wanted to
join.
But how did I get involved kindof with the IBD community?
(03:32):
So I am a social worker.
I've been a social worker forwell.
I got my master's degree backin 2007.
I did psychology before thatand so worked social work type
roles and have always worked inchronic illness, chronic
diseases.
So I was fortunate enough toprofessionally get involved with
the community Think of back in2015, professionally got
(03:53):
involved with the Crohn's andcolitis community.
So that really is where Istarted to get to know these
diseases and started to get toknow the doctors that serve the
patients and all of thehealthcare professionals that
are part of this community and,of course, all of the amazing
patients that I met.
And so that's really where Istarted and kind of learned to
love this community and foundthat it's just.
It feels like everybody in thiscommunity just really has a
(04:16):
great sense of humor and is justsuper welcoming and it's such a
big, warm community, and so Ijust really kind of fell in love
with it, and so that's kind ofhow I got started and we just
kept you around.
Well, I think I forced myselfonto you guys.
But thank you for allowing meto stay.
(04:39):
Now I actually don't workprofessionally with the IBD
community any longer directly,but now I run a nonprofit
organization and so I've movedfrom a disease specific
organization to anothernonprofit organization that
works with people living withchronic illnesses, and so I'm
still attached to the community,still working within the
community, but just not in a IBDspecific role.
(05:00):
So still still involved though.
So that's good, and of course Istill do this show with you.
Yes, robin, now onto you.
Next question, and in our firstshow I basically kind of
interviewed you, similar to theway we interview our guests,
although much rougher.
We've gotten a lot better, Ithink, as we've gone.
So I think people probably havelistened to that show.
(05:20):
But tell us a little bit about,kind of, how did you get
involved with the IBD community.
Just kind of give us a revisit.
And then also, why did youdecide to?
How did you decide to getinvolved in this show?
Speaker 2 (05:32):
I'll try to do a quick and dirty recap.
Speaker 1 (05:36):
Sorry.
Speaker 2 (05:37):
I know because it's been so many years half my life,
actually.
I was diagnosed in 2000.
And, like most of our guests,you know, had a dramatic and
traumatic entrance into the IBDcommunity and had surgery pretty
quickly, like you know.
(05:57):
Life and death, all this stuff.
But then I had two very smallchildren.
I had a two-year-old and mybaby turned one while I was in
the hospital, you know, havingsurgery and everything.
So once I had the surgery tohave my colon removed, lived
with an ostomy for a year andthen had my takedown, I was
(06:19):
focused on taking care of mykids living life.
I didn't really engage in thecommunity on taking care of my
kids living life.
I didn't really engage in thecommunity.
At that time, 25 years ago, ifyou had ulcerative colitis and
you had your colon removed Ihate to even say this, but the
thought was and I'm using airquotes here that you were cured
right.
Fun fact, though, when I had mypathology reports done when
(06:42):
they removed my colon, they didnot give me a J pouch at that
time, which they were doing, butvery infrequently my pathology
reports came back inconclusive.
My ulcerative colitis was sobad they couldn't tell if it was
ulcerative colitis or Crohn's,and so they loosely changed my
diagnosis to indeterminate anddidn't give me a J pouch.
(07:02):
So I lived with what's calledan IRA ileorectal anastomosis,
which when we talked to Ambershe was like I was only one of
two people that she'd ever metwith that and I've only met one
other person that has had thattoo.
So I lived like that for 18years, 17 years, 18 years.
(07:22):
And it wasn't until I starteddoing 5Ks and my best friend at
the time said you should do ahalf marathon with the Crowns
and Colitis Foundation, withTeam Challenge, because she knew
someone.
It was a random thing, like Imoved from Louisiana to Texas,
met this person at work, westarted doing 5Ks together and
she happened to know somebodyone of her best friends from
(07:44):
high school.
His wife had Crohn's and theydid Team Challenge and so she
sent me the link.
She reached out to him, theysent me the link.
I did a half marathon with TeamChallenge in Hawaii in 2011, I
think 2011.
And that was it.
That was it.
That was like 10 years after mydiagnosis.
(08:05):
It was the first time I'd everbeen around a community of
people that knew what I wasgoing through, that I didn't
have to explain anything to.
Before I knew what Camp Oasiswas, I called it summer camp for
adults.
Like I had found my people, Icame home from that race and
immediately signed up for thenext race, which was in Las
Vegas.
And I did that one.
And then I did Hawaii again andI did Vegas again and I did
(08:31):
Nashville, virginia wine country.
Like I was fundraising andrunning these races.
And then they actually didstart a take steps walk in my
community for the first time,which was wild to me because I
lived out in the middle ofnowhere, west Texas.
So I got involved with helpingwith the walk.
But I also, on the download,was looking for a job.
(08:53):
You know I wanted to make havea bigger impact on the community
.
So team challenge was myintroduction to being involved
with the community and as a partof my fundraising I started
writing an article for the localnewspaper to like, follow my
fundraising and share my journey.
And so many people respondedand sent me letters saying how
they thought they were alone.
They thought they were the onlyone.
(09:13):
My story inspired them so muchand I was like hooked to like.
Like the IBD community was justso welcoming and so awesome and
inspiring to me and if my storycould help them to know and
understand that they weren'talone, then I wasn't going to
stop telling it.
So that's like how I gotinvolved with doing stuff more
(09:34):
actively in the Crohn's andcolitis community and then
that's eventually met you a fewyears in doing that and then for
this show specifically, Ineeded a different way to share
my story because I was flaringagain and it became very hard,
very taxing mentally, to be inperson in with people, live,
(09:59):
living my experience, but tryingto downplay it so that I could
focus on other people's storyand challenges and helping them
to advocate for themselves andteaching them how to share their
story.
So I think it's just the natureof working in nonprofits,
especially disease nonprofits.
It was very emotionally andmentally taxing for me because I
was really symptomatic andnormalizing that and kind of
(10:24):
living in denial with that.
So yeah, that part was hard butI needed a new way.
I needed a new way to be ableto support and help this
community that I love so much,without that direct person to
person connection that was likeat that point in my life, so
emotionally and physicallydraining for me.
Does that make sense?
Speaker 1 (10:43):
It does.
Yeah, I mean cause, of courseyou know I knew you at that time
, that's, you know you and I hadalready gotten to be friends at
that point and I think IBD wasjust such a presence in your
life at that time, just becauseyou were so symptomatic, but
also because it was like becausecareer wise, that's what you
were focusing on and so you were, you know, having to travel a
lot for your job.
(11:04):
You're constantly, constantly,constantly, constantly in the
community and constantly beinglike kind of hyper aware, and so
I know that that can be, thatcan be too much, it really can
be.
And I think you know, steppingback and deciding to keep it as
a smaller portion of your sortof everyday life or a smaller
portion of your sort of whatyou're, what you decide to do
(11:24):
for fun, professionally,whatever you know kind of, is
different than and being able tokind of focus your energies
elsewhere, I think makes a lotof sense.
So I yeah, I know I know it gotto be too much for you and and
I you know to be frank and withfrank with the audience, there
are times where I worry thatthat's going to happen again
with this, because we are, youknow we are having to have a lot
of conversations with a lot ofpeople.
(11:44):
We hear some really toughstories, you know.
We hear people at their worst,sometimes at their worst moments
and and you know, and I knowthat that's got to be
challenging for you especially.
I know you know your, yourhealth has gone and you've been
very open about your health onthe show and you have had some
struggles kind of, you know,with surgeries and and new, a
(12:05):
new Crohn's diagnosis instead ofulcerative colitis, that kind
of thing, and so you've kind oflived it real time with us.
And so I'm curious aboutsharing your, your story so
publicly.
What has that been like?
Because I think it's a slightdifference here.
I think this is what peoplemaybe don't understand is I've
joked about it feels like we'rescreaming into the void, like
you share your story verypublicly, but at times it feels
like we're just talking to eachother and nobody's listening.
(12:28):
So it's public, but it's alsosort of sometimes doesn't feel
public.
So I'm curious, like what hasthat experience been like for
you sharing on a podcast whereyou know what's going out to
people, but it really at thetime feels like it's a
conversation between you and meand one other person usually.
Speaker 2 (12:41):
Yes, even like right now, with us talking to each
other.
This is like an intimateconversation between friends,
right?
So it makes the sharing, theinitial sharing of it, so much
easier, even with the guests,because I like, is that one on
one connection with someone?
After the fact, I have told youmultiple times that I don't
know how many times I've said it, I'm sure it's been cut out of
(13:01):
the show, but like I get avulnerability hangover and once
I had my first one, I dodiscovery calls now with our
potential guests and I kind ofwarn them about that.
I asked them about have theyever shared their story publicly
before?
Are they public with theirstory, like on their social
media channels?
Like I asked them how publicthey've been with their story,
(13:22):
because we have had two gueststhat have asked us not to air
our conversations because theydid have that whiplash, almost
that vulnerability hangover, andit's that realization that, oh
my gosh, I've said too much.
For me personally, when I getthat feeling it's like I have a
story that I have created aroundmy IBD, things that I have
(13:45):
cultivated that are okay for meto share, that don't affect me
mentally or physically.
Like this is my quick fact sheetright, my elevator pitch about
my disease.
One, two, three, check off thelist, and you'll hear that
sometimes, with guests on ourshow where they run through
their story like this, this,this, this, this and then you
and I have to like really dig inand ask questions to get more
(14:06):
to the root of that, becausethey have their story down pat,
right, and so I do too.
And what I find on this show,because of the format of it, I
am sharing more, I am goingdeeper, I am being more
vulnerable with what I'm goingthrough and I am deviating from
my elevator pitch about myjourney, and so that can be
(14:29):
really hard.
But also I feel like I shouldsay why it can be really hard,
because I feel like that mightbe helpful.
I feel like I should say why itcan be really hard because I
feel like that might be helpful.
When I admit it, then I have toacknowledge it and then I have
to address it, and then there'sall of these things that go
along with that Right.
So when I talk about it withyou, with our guests, when I'm
(14:49):
sharing something that'shappening with me, to relate to
them, to help them to know thatthey're not alone, all of those
things.
When I admit it in this way, insuch a public way, it is there
for me to go back and revisit,and so it keeps me accountable,
but it also it does a number onme because I have deviated from
my perfectly curated elevatorpitch about my disease journey.
Speaker 1 (15:09):
Yeah, there is gosh.
What is the?
What is the term Like?
It's like, once you speak it,it sort of becomes reality and
so, yeah, it is.
It's a way of admitting thatsomething is different than
you'd like it to be.
So yeah that's got to beincredibly difficult.
I appreciate you doing that,Robin, because I know that's,
that's a challenge.
Speaker 2 (15:27):
Yeah, it's what I'm meant to do, I think I hope so.
Speaker 1 (15:32):
Because otherwise we don't have much of a show,
because otherwise we don't havemuch of a show.
Well, that's not true.
We had other people sharingtheir stories.
But I do think that yourvulnerability is helpful to our
guests.
I think the fact that you'resharing with the people that are
on the show does make it feeleasier for them to share their
stories.
And I don't mean that in like aweirdly manipulative kind of
way.
I just feel like it fostersthis environment of you know,
(15:55):
like we're just telling eachother stories, we're just
telling each other ourexperiences, and it's okay to
have these experiences, you know, and it's okay to kind of deny
them at times and not let themhave power over you when you're
just not in the right place.
You know they're going to reartheir heads whether you like it
or not, but it's you know.
So I think I think you sharingthe times where it's it has been
a struggle for you or where youhaven't been a hundred percent
(16:17):
and you've let it kind ofdwindle, dwindle, dwindle and
like you've needed an ironinfusion or whatever it is, is,
you know, it's definitely like Ithink that's normalizing a lot
of this experience for patients.
Speaker 2 (16:26):
So yeah, I hope so.
Okay, we're going to switchthis back to, hopefully,
something that's not going tomake us cry, but who knows?
At this point I have to ask youif you remember number one,
when you first came up with theidea for the podcast because the
podcast was your idea and doyou remember that first text you
sent me about it and what wereyour thoughts about the podcast?
Speaker 1 (16:46):
back then.
So, yes, I very much rememberwhen I came up with this idea,
because it was probably, I think, 2017, 2018.
And it was because I listenedto a bunch of podcasts.
At that time I was driving, Ithink somewhat, or I maybe was
commuting on the train and so Iwas listening to a lot of
podcasts.
That's just what I would do.
And so I was like I didn'tnecessarily see another IBD
(17:09):
podcast.
My initial idea for the podcastwas that it was going to be
really kind of short, veryfactual, informative kind of
podcast.
I was like it's going to bereally kind of short, very
factual, informative kind ofpodcast.
Like I was like it's going tobe somebody talking about, like
J pouches, right, you know, likeone very specific thing and
that's why it was called bowelmoments was because it was going
to be a little snippet ofinformation that got completely
thrown out the window, I think,the moment I spoke to you.
(17:30):
But I also realized like Ican't do this on my own Cause
again, as I've admitted, likeI'm not a person living with IBD
.
I love this community and Ihave kind of my role to play in
the podcast, but it reallyneeded somebody like you who is
willing to openly share theirstory and who is willing to
facilitate the conversation withsomebody because of that you
know and and who is sounabashedly open with their
(17:54):
experiences and and you know,cause it's just not the same
conversation with somebody whoisn't living in the part of the
community.
And I get that, I a hundredpercent admit that.
And so I was like who do I know?
Who is that type of a person?
And I was like I know, robin.
So I think I think I sent you atext message saying I have this
idea, you know, but I'm notsure kind of where to go with it
(18:14):
, what to do with it, and I'dlike to do it, but I need, I
need help.
So I think that's probably thetext I sent you, but I don't
remember.
Speaker 2 (18:19):
I remember you asking me about the name and then like
asking me if I wanted to dothis with you no-transcript.
I loved it.
(18:44):
I thought it was perfect.
I think it took me like 20minutes to come up with our logo
.
I mean, it took me a little bitlonger to put it together, but
it didn't take me long, okay, soI'm going to build on that.
What's been one of yourfavorite moments or like
episodes?
So?
Speaker 1 (18:53):
far.
Oh God, there's so many.
This is the thing like.
We've published so manyepisodes.
You know my I don't know ifit's my favorite moment, but my
most unexpected moment was whenDr David Rubin made us both cry
within like the first threeminutes of him speaking, and it
totally unexpected, totallyunexpected, and so I just that
(19:13):
was such a memorable momentbecause he's such a big name in
the IBD community and I did notknow his kind of origin story
and so I remember being takenaback by that and kind of having
to try to get my game face backon.
So that was probably one of mymemorable moments.
I don't know if it's myfavorite moment, but I think One
of my favorite episodes andthis is not no shade on anybody
(19:33):
else is Stacey the Deuce, staceyCalabro, who is an early, early
episode for us.
She was just so freaking funny.
And what is sad and we've saidthis on the show before is that
we keep ourselves muted most ofthe time so that you don't get
our background noise.
In fact, you're probably goingto hear some background noise
because I'm not muted, so my dogoccasionally will bark, robin's
dog will bring her a toy.
You know stuff happens and sowe normally so we keep.
(19:55):
We kept ourselves muted on thatshow and it was.
I laughed so hard and so loudthat afterwards my husband was
like oh my God, are you okay?
When I came out of the room andso I think that's probably one
of my favorite memories is justhim being like what were you
guys talking about?
And just like cause I had, Iwas just open mouth laughing and
(20:15):
you guys can't hear us doing itbecause we're muted, but she's
just was so funny.
What about you, robin?
Okay, I loved our conversationwith David Schwartzberg, like he
was just hilarious and alsolike he's an absolute treasure,
Like, yeah, that was one ofthose where I was like do I love
this man?
I think I love him, Like Ithink we just became best
friends Like those where I waslike, do I love this man.
I think I love him I think wejust became best friends.
Speaker 2 (20:36):
Like honestly, he is hilarious and so like just a
genuinely nice person andwilling to help and wanting to
do the best that he possibly canfor all of his patients.
Like again, all of our guestshave been awesome I would have
to say Ashish and Anish forbeing like the first.
Speaker 1 (20:53):
It's a little bit like a Sophie's Choice when
we're doing this, because it'slike they're all like good in
different ways, you know, andall of our guests have been so
fun to get to know, so yeah, butanyway, you are.
Yes, I love, I love the DoctorsPatel.
That was a very fun episode.
Speaker 2 (21:06):
But they but I mean they came on before we we had
not published any episodes.
They were some of our veryfirst interviews, the timeline
of the show, you guys, weactually started recording
episodes in the fall of 2020.
So Alicia sent me that text.
We had work and you know, lifeand all of that stuff happened.
(21:27):
And in 2020, I do remember thisand I might even actually still
have this text, I'm not sure In2020, alicia sent me a text
message with a picture of apodcast microphone.
Like, look what I just bought.
And I thought it was for thepodcast, but it was for work,
because in 2020, everybody wastransitioning to, like live
events, to virtual events andall of that stuff.
So I said, oh, are you startingthe podcast?
(21:49):
Like, is this something that'sgoing to happen?
And you said, no, it's for work, but maybe we should.
And then I immediately went onAmazon and bought the same
microphone.
That's how, like, we started.
This conversation started in2017, but we didn't actually
take action or start recordinguntil 2020.
We recorded what?
Three or four episodes and thenI found out that I had to have
surgery and I was going to gohave surgery and be on medical
(22:14):
leave for two weeks and then goback to be in the hospital for
three or four days and go backto work, and we were just going
to keep on trucking on and Iended up actually being in the
hospital for two weeks Againlike how I was feeling before
the show started, when we firststarted recording.
And then my life got turnedupside down with everything that
happened with that surgery.
In case you are new to the show, I had J-pouch surgery in
(22:36):
December of 2020.
And I had all of those thingsthat you have to sign waivers
for the things that can go wrongin surgery but usually don't.
That happened to me Respiratoryfailure, heart failure, I went
septic, I was in ICU, I had anabscess in my pelvis, pneumonia,
like all of those thingshappened, and I was ended up
being in the hospital for twoweeks and being out on medical
(22:59):
leave for the entire 12 weeksthat they allow you for FMLA.
I still needed to have anothersurgery.
So while all that was happeningwith me, we stopped recording.
So everything was on pause.
We didn't even know if we weregoing to get to do the show, and
then we started recording againin March of 2021.
And then we published in Augustfor the first time.
So it was like an extended,like we built up several
(23:21):
episodes and really workedbehind the scenes to get
everything where we wanted it tobe Once we knew I was going to
live.
Speaker 1 (23:27):
Yes, yeah, I wasn't going to say that, but there
definitely was a like I don'tknow if we want to start a show
and then not have you there.
That's a little bit weird, butalso it took a long time for you
to recover as well.
I mean it's just, you know,energy wise, stamina wise, and
this is, you know, as we'vestated to everybody, this is our
second job that we've givenourselves, and so it does mean
we, you know, there's effortthat has to go into it on both
(23:50):
of our parts.
Speaker 2 (23:51):
Yes, so the timeline of the show is that, and so we
started with guests that we knewand felt comfortable with.
But Ashish and Anish, like wehadn't published episode one,
and they were like, yes, we willbe your guests and have kind of
been champions of the show.
This you know right from thestart, and so they're always
going to be like my faves.
For that reason, like they justearly adopters, they were early
(24:14):
adopters.
Speaker 1 (24:16):
Yes, Well and that, and I have really liked our
research roundup episodes.
I know sometimes we get alittle into the weeds on those,
but I do think you know thiscommunity is so smart and
engaged and so, you know,invested, and so I know a lot of
the people that you and I arefriends with.
That's part of this communitylike they want to know what's
happening in research andthey're usually pretty up on it.
(24:36):
But you know, one of the thingswe wanted to do is really
capitalize on, you know, ourmedical professionals that are
coming back from these bigconferences.
What do they learn?
What should you know about whatthey learned?
The evolution of there beingmore interest in diet and
(24:57):
psychology and mental health andthe sort of holistic view of
living with a chronic illnesshas become much more at the
forefront of a lot of theseconferences.
So that's been fun to see.
I don't know, we just have somany good guests it's hard to-.
Speaker 2 (25:05):
We do.
I will say that because we hadpelvic floor on, I started
seeing a pelvic floor physicaltherapist.
So I mean I had already beenseeing a therapist because of
just the recovery from thatexperience, that medical trauma,
but so I started seeing apelvic floor physical therapist
too.
I hope that, like those kindsof shows have helped everybody
to understand that I mean, evenif you don't have surgery, like
(25:29):
the amount of times that we goto the bathroom a day, you
should probably be working witha pelvic floor physical
therapist.
It's mind-blowing some of thestuff.
So I like that we took thatapproach and really wanted to
talk to everybody that servesthe community and not just focus
on GIs and patients.
Speaker 1 (25:46):
Yeah, and I think even just having surgeons on to
help really demystify that, Ithink a lot of people say it
like it's last resort kind ofthing, when the you know the
reality is it needs to beanother tool in the toolbox and
that you know.
Getting to know a surgeon andfinding the right person that
you're really comfortable withand you feel like is going to
understand you and your case andthat you like, is another big
thing.
You know, I would much ratherhave that person lined up in the
(26:08):
event I might need them,instead of having just an
emergency like oh God, I have tohave surgery, just whoever is
on duty, kind of thing.
So that, to me, has beenanother kind of important lesson
that I've learned.
As you know, don't think I can.
I don't think I can because Ido feel like we have grown a lot
(26:36):
.
But I am curious because I havehad so much fun doing the show
with you, hence why we're stilldoing it and not getting paid
for it, in fact paying money todo this.
But I am curious how do you,since you have gone back and
listened to some of our initialepisodes, how have we grown as a
show?
Oh my gosh.
Speaker 2 (26:53):
So first of all, kudos to you because you do the
production, the editing, addingthe music, the intros, sometimes
the outros.
Like you guys, if I had to editthe show we would never have
published because I could notstand to listen to my voice for
the first few episodes that wasdefinitely something it takes
(27:14):
some getting used to.
It takes some getting used to.
I always feel like I'm sofreaking loud and I'm like
Alicia.
Can you please turn down myvolume?
I am obnoxious.
Can you please make it like towhere I whisper or something?
I don't know how.
I guess I'm just for Seinfeldfans.
I'm a loud talker, I don't knowwhat else to.
Speaker 1 (27:35):
I don't know what else to say about it.
The other thing for people toknow is that you do have a
tendency to, when you want tomake a point, you lean forward
where your microphone is, and sothere is that.
I have noticed that because Ialso watch you and during the
show and like, and then you'llbe like let me tell you, and
you're like right up into themicrophone, which, sorry
everyone, I'm sure I just blewout your eardrums right there.
Yes, but it's, it's funny.
I think it's funny every time,so I don't say anything.
Speaker 2 (27:56):
I have something to say and I want to make sure you
hear it.
I mean, I don't know.
So you have like just the, theediting on the shows, from show
one to show 125, the work thatyou have done and like taught
yourself how to do, and all ofthat is just like mind blowing
to me.
In order for us to have, like,our show get better and better
(28:18):
and better, I started to havethe discovery calls with our
potential guests so that I couldprep them a little bit more.
After we talked to somebody whohad never really shared their
story like this before and wejust did it cold.
Um, we'd only had emailcommunication with them and we
ended up having to rerecord anepisode.
I felt like I needed to startprepping our guests a little bit
better, because that part fallsunder my purview, and so I feel
(28:41):
like that has helped our guestsunderstand what we do and they
get like a pre-run sharing theirstory with me first and I get
to ask them questions and I getto point them in directions that
we may go on the show so theycan be prepared for it, to point
them in directions that we maygo on the show so they can be
prepared for it, and so I feellike that has helped prepare our
guests better and help themfeel more comfortable when they
get live with us here on Zoom,and I think that the fact that
(29:04):
the people who have been guestson our show recommend their
friends or people they know orpeople they follow, like the
other accounts they follow, thatinspire them.
We've gotten some really goodguests that we would never have
known or been introduced to ifit hadn't been for people that
were already willing to sharetheir story with us, so I feel
like we're able to share morediverse stories and experiences
(29:27):
because of that.
Speaker 1 (29:27):
Yeah, that is a huge compliment when one of our
guests shares the show or whenthey when they recommend that
somebody be on the show with us,because it means they had a
good experience.
And it's hard to know.
I mean, I've said that we don'tget a ton of feedback, and so
it is nice that is.
The one piece of feedback thatwe do get is that when we have
our guests say, actually youshould talk to this person or
(29:48):
I'd like to come back again.
Even the people that have saidI'd love to come back on your
show.
So that's such a new people,different people, and you know,
and helping us provide voicesthat we haven't yet, and that
you know people that maybehaven't been on other shows too.
So that's been, you know, a bigpart of your job and it's been
(30:09):
a huge asset to the show as well.
So you're doing a great job.
Robin, I guess I'll keep youaround.
Speaker 2 (30:14):
I would also like to give a shout out to our guests
hosts too, like Stacey has beena guest host and Derek Dodson
has been a guest host and Hannahhas been a guest host.
Lauren Erbuck-Larnfield hasbeen a guest host.
Like that has been awesomebecause look you guys, for a
while there we were doingepisodes every week, which is
cuckoo for Coco Puffs.
(30:35):
When we talk to other peoplewho do podcasts, we're just the
two of us and we are pumping outepisodes every single week with
our travel schedule for workand all of that.
So we're glad you're stillsticking with us, even though
we're going every other week.
But because of that we did haveto call in guest co-hosts
sometimes.
So we're really grateful forthem and their insights and
their willingness to jump in andpenchant for one of us.
Speaker 1 (30:58):
Yes, yeah, it's been fun to have them on too, just
because you know just adifference in how we do the show
.
All right, well, robin, we havecelebrated the good times of
our show and recognized you knowkind of how far we've come.
But I want to talk about thefuture.
So what do we want to achieve?
What do you think our goalsshould be?
I mean, it's in the era of goalsetting, right.
Speaker 2 (31:25):
Like we're doing, manifesting what's the future of
our show.
I mean always sponsorshipsomewhere, somehow.
But we need a lot morefollowers and listeners for that
.
I know that, a lot moredownloads to get to that point,
but that would be like you know,rainbows, unicorns, glitter,
confetti that's like pie in thesky kind of thing.
Oh golly.
I want to share as many diversestories as we can, all kinds of
(31:50):
diversity like diseaseexperience, community experience
, cultural experience.
There are what?
3 million estimated, 3 millionpatients in the United States
and 10 million worldwide.
Is that correct?
You can fact check me on that.
So I feel like there's just somany more stories that we can
share, and I appreciate thatwe've been able to share some
(32:12):
international experiences too.
I feel like that's beenimportant, but I just I want to
keep helping people to sharetheir story.
If you could interview anyone,alicia?
if you could interview anyoneyou do, but I but you.
I want you to add like a youare like the interviewer, I feel
like you're the interviewer andI'm like color commentary
(32:34):
sometimes.
So when you do yours, I want toknow, like if there's somebody
that you like, your dream personthat you'd want to interview.
Speaker 1 (32:41):
Oh okay, so who would I, who would I want to
interview?
You know, I thought about that,that's like.
I think there are some folkslike that are like.
Sunny Anderson, for instance,is a really interesting person
for us to potentially like thatI think would be really fun to
get to know.
A she's really funny, so Ithink we just really enjoy
talking to her.
B she has such a public facingjob and her jobs are things that
(33:02):
I just kind of go or don't feelconducive to having ulcerative
colitis, and so I would bereally curious to get to know
her and her experience of beingon television but also being a
chef and all these things.
And so you know we've talked toa chef with IBD, obviously
Abigail Marie, the chef with IBD, you know it.
Just I think it could be reallyinteresting to get to know her.
You know Mike McCready isanother one that I think would
(33:23):
be really fun to get to know.
Just again, same thing.
He has such a job where you'reon stage.
You can't go off stage wheneveryou feel like it.
You're in the middle of aconcert, right.
So those are people that I justkind of say they have such
interesting jobs as it relatesto being a person who may be
symptomatic or may have thistype of disease, also just being
on the road and traveling andall these things like how do
they navigate all of thesethings.
(33:44):
So those are folks that I thinkcould be really, really fun to
get to know.
I mean, david Rubin was likeour number one.
We'd love to get to know youguest and we'd be interviewed
him.
So I think that's, you know,that's great.
But I know we have a ton morehealthcare professionals that we
haven't talked to.
So I would love to talk to evenmore of our folks, even more of
our people that are involved,especially in some of those sort
of areas that we have touchedon but haven't spent a lot of
(34:06):
time on.
And so I think people likenurses and PAs we haven't had as
many conversations with them.
So maybe some of those folksjust talking about kind of how
their role is different withinour community than it is for,
like the gastroenterologistthat's scoping them we had a
conversation about potentiallybringing in an endoscopist, and
so some of those people that arejust really involved.
I think the other thing is justnavigating.
(34:27):
Health insurance is so freakingcomplicated.
If we can find somebody who canreally help us talk about, like
kind of maybe somebody who'seven an insurance insider kind
of person that could really talkto our community about how to
best navigate the healthcaresystem, could be super, super
valuable.
Personally, I think that wouldbe really awesome.
Vision-wise for the show, Iwould love to be able to do some
(34:49):
commercials.
That's one thing I sort of havehad on my radar and, just in
typical Alicia and Robin fashion, haven't had the capacity to
really do because it requires meto write the commercial, record
the commercial, convince youthat you need to help me write
this and record this commercialand find time that both of us
can actually do it, and so itjust hasn't happened.
Also, it would require us tospend some money as well.
(35:09):
So that's another one that Ithink it would be fun to do some
commercial.
The other thing that my puttingit out into the universe is
that I would love to be kind ofmedia for one of the conferences
.
Scrubs and Heels is a reallycool organization that works
with women in the GI space and Ithink it'd be really fun.
We happen to be women we're notGI professionals, but we happen
(35:32):
to be women and Robin has IBD,so I feel like that qualifies
her.
So being able to be kind of onthe ground commentary and to be
able to record some of theseconversations with people, kind
of live as they're happening,would be super cool.
Do I know how to do that?
No, not yet, but we certainlycould learn it, and so that's
another sort of vision I havefor this.
But I have so many more and Ineed to stop talking because
(35:52):
eventually we'll our show isgoing to be six hours long.
Speaker 2 (35:55):
I do love those.
I would love to put us in tomoderate some of those
conversations at the conferences.
I think that it would just bechef's kiss.
Speaker 1 (36:04):
I think us at like DDW moderating a panel, come on,
I mean get on board with thevision.
Speaker 2 (36:11):
Everyone get on board with the vision of this
happening.
Speaker 1 (36:14):
ACG, aga.
Come on people.
Is there anybody on yourwishlist so?
Speaker 2 (36:20):
there's two people that I would love to have on the
show and they're both likeinfluencers One, kim Holderness
the Holdernesses, kim Holdernessoh, they're so funny, they're
so funny.
And the other one, her name isRachel Elizabeth Slocum.
She does positive affirmations,she is an influencer on TikTok
(36:42):
and Instagram and Facebook andall that, but she, she has IBD.
She's talked about it, butthat's not what her um, she also
talks openly about being arecovering addict, and so I
would love to talk to her aboutmanaging IBD and being a
recovering addict and also likewhy did I not come up with
(37:03):
positive affirmations like I Imean, she does it like she's
trying to get thick, but I'mlike I need to have positive
action.
I need to like give my, mybooty a little pep talk about
you know, stop trying to kill me, you know.
Those are my positiveaffirmations today.
We're not going to go to thebathroom 15 times.
Are we New booty Judy?
(37:23):
No, we're not.
We are, but that's just thestage of life I'm in right now.
So she is so freaking funny.
I just I think that she would bea good guest on the show and
it's something we haven'taddressed.
How do you manage that?
Like the pain and everythingthat comes with IBD, and then
you're recovering.
So you really shouldn't betaking those kinds of medication
(37:44):
.
Rachel, if you listen to ourshow, I would love to have you
on here.
When you started, when youthought about this and you
thought it was going to belittle nuggets.
Even when we startedinterviewing people, we thought
it would be what?
Speaker 1 (37:56):
30 minute shows.
Oh my God, I think we said itin our first episode.
It's like it's going to belittle.
30 minute episodes is ourvision, and even that episode
wasn't 30 minutes.
Speaker 2 (38:05):
Yeah, this is par for the course for us.
Speaker 1 (38:07):
This is the reality, though, is that very, very
quickly, I think you and I bothrealized that once you start
asking people to share theirstory, there is so much to every
person's IBD story that justgetting them to share their
story is 30 minutes alone, andasking any questions afterwards
is just gravy.
And so you know and that's thepart we want to be able to dive
in more and ask questions andsort of get to know these people
(38:29):
really well or as well as wepossibly can in 45 minutes to an
hour.
And so I think we realized, forbasically the second episode,
that 30 minutes is a sillyvision because it just has never
happened.
So there's just so much.
There's so much to each of thesestories and it needs to be
heard.
It can't just be like I haveIBD.
End of story.
Speaker 2 (38:49):
That's true.
I am going to flip the scripton you because you've never had
a chance to answer this question.
So, alicia, what is the onething that you want the IBD
community to know?
Speaker 1 (38:59):
It's all stuff that has been said and it feels very
trite, but that number oneyou're not alone.
I think that's the one thingthat we've we've heard from.
This is like even when you weretalking about, like getting
involved with Team Challenge andyou sharing your story in the
newspaper and how many peoplefeel so isolated and alone.
And that's one of the reasonsthat we do this show is that we
want people to to feel likethey're not alone, and that
(39:20):
there is another story thatsomebody that has had a similar
experience to you and so you cankind of feel it sort of
normalizes the disease, and so Ithink that's number one.
Number one I think the otherthing is that the importance of
building the right healthcareteam around you.
If you can get a team, which isnot always possible, but at
least creating a really goodrelationship, or finding a GI
(39:42):
professional, either agastroenterologist or a nurse
practitioner or a PA that youreally trust, because this has
to be such a long-termrelationship with that person
and there's going to be ebbs andflows and ups and downs and
it's going to be probably yourprimary person that you're
talking to.
What I have seen happen in a lotof different chronic disease
(40:02):
states is that you start outwith your specialist.
Anything happens.
You start with your specialistand you go down from there.
You know it's sort of it's notlike you start with your GP and
you escalate up it's.
You start with it Is this myCrohn's?
It's not okay, what is it nowLike?
And then you move on kind offrom there, unless it's just so
obviously not your Crohn's whichCrohn's is a bitch?
It kind of just throws allsorts of crazy curve balls at
(40:24):
you.
But I think you need somebodythat's going to be okay with
those, like you know, my chartmessages like oh my God, is this
something I need to beconcerned about?
If you don't feel like you havethat, then you need to try to
find somebody that really isgoing to become your partner in
this, Because I think so much ofyour quality of life and your
confidence in your diseasemanagement is going to come from
that relationship.
(40:44):
So I think that's probably whatI would say.
The other thing I would say andthis is we say this a lot is get
involved in advocacy, you know,even if it's just talking to
other people about yourexperiences.
But legislative advocacy is sokey, and I feel like legislative
advocacy especially makes youfeel so empowered with a disease
that takes so much away fromyou.
It gives you something to sortof take that back a little bit,
(41:05):
and so to me, like that'sanother thing.
So I have three pieces ofadvice, and I'm not saying one,
it's our show, we can say it, soget involved in advocacy.
Robin, this has been such agreat conversation.
Thank you for talking me intoit, and I am so excited for
everything that we've gotplanned for the future and I'm
so excited for ourmanifestations to go out into
the universe and come back to us, because you know fingers
(41:26):
crossed and I can't wait to seehow we keep this podcast growing
and to see all of our newguests join us.
Speaker 2 (41:33):
We have already have a good lineup for 2025.
We only have I don't know alittle bit more than a handful
of spots to fill to get all 25shows.
So I'm very excited about thatand I am so grateful that you
did ask me to do this with you.
It's been just the bestexperience.
I'm so glad that you're myfriend and we stayed friends and
(41:54):
to our listeners, thank you.
You guys are going to laugh ifyou listen to this show.
Thank you for being on thisjourney with us.
Don't get triggered, anyone.
Your support literally meanseverything.
If you have questions for usthat you want us to answer on
social, if you have suggestions,if you have topics you want us
to cover, please send them myway.
(42:15):
You can email me at robin atbell moments podcom or hop Uber
to at bell moments pod onInstagram and send me a direct
message.
I will get it.
I'd love to know what you wantus to talk about, what you want
us to ask our guests about, whatyou want more information about
so that we can make the showbetter for you.
Speaker 1 (42:33):
Well and in typical fashion.
Don't forget to subscribe toour show and, better yet, make
sure you share it with yourfriends and family.
We want more and more listeners, so please share it with folks
that you think that would beinterested, and also feel free
to leave a review If you havesomething nice to say, please,
preferably please leave a reviewfor us, because definitely I
know I read reviews on showsbefore I listen to them.
(42:54):
So if you have some nice thingsto share, we would love to have
them on our reviews, please.
Speaker 2 (43:04):
So thanks, guys, because I want you all to be
part of these importantconversations.
Thanks for listening, everyone.
Until next time.
Cheers.
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