June 4, 2025 • 48 mins
Amanda Phillips never imagined her lifelong battle with Crohn's disease would transform into a business helping other people living with chronic illnesses. But after decades of unexplained stomach pains, missed diagnoses, and learning to navigate life with IBD, that's exactly what happened.
Amanda takes us through her journey from childhood stomach aches dismissed as "just constipation" to her eventual diagnosis at 17. We explore how she learned to identify her personal flare triggers—stress and GI bugs being the major culprits—and the profound anxiety this created around situations most people take for granted, like commuting to work or being around sick family members.
The pandemic became an unexpected turning point in Amanda's health journey. Working remotely eliminated the bathroom-related stress of her daily commute. When her company pushed employees back to the office, Amanda fought for accommodations, facing frustrating resistance from HR despite documentation showing remote work improved her health and performance.
The birth of Be Well came during a February 2022 hospitalization, when Amanda found herself freezing in a standard hospital gown. Looking around at the medical wear available, she thought, "I can do better than this."
What makes Amanda's approach unique is her commitment to meaningful design. Every Be Well product—from symptom tracking journals to discreet pill holders to comfort items with inspirational quotes—comes from lived experience and continuous customer feedback with a focus on prioritizing patient comfort, dignity, and practicality. Now she's expanding into new territory with hospital gowns, non-metal MRI hoodies, and more innovations.
Whether you're living with chronic illness or supporting someone who is, this episode offers inspiration in turning personal challenges into purpose and creating solutions that truly understand patient needs.
Links:
- Link to the BeWell website
- Link to BroGlo
- Information about IBD and work- Crohn's & Colitis Foundation- USA
- My guest co-host, Stacey Calabro's episode
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to AmandaPhillips.
Amanda is living with Crohn'sdisease.
We talked to her about beingdiagnosed and how, when she
looked back on her childhood,explained a lot of the symptoms
(00:21):
she was experiencing.
We talked to her about work,accommodations and what she
requested, and then we talked toher mainly about her company
that she formed called Be Well.
Be Well is a company thatoffers all sorts of products for
people living with chronicillnesses, but they're probably
best known for their IV hoodies,which include some
strategically placed zippers,perfect for the times that you
need to go into the hospital oryou need your infusion.
(00:43):
Enjoy Cheers.
Hi everybody, this is Alicia.
Welcome to Bowel Moments.
Speaker 2 (00:53):
I'm your co-host, your temporary co-host, Stacey
Calabro, Joining us today.
We are so excited to talk toAmanda Phillips.
Speaker 1 (01:01):
Yay, amanda, welcome to the show, hi, thank you for
having me, so, Amanda welcome tothe show.
Speaker 2 (01:06):
Hi, thank you for having me.
So, amanda, are you drinkinganything?
And if you would like to share,please tell us what you're
drinking.
Speaker 3 (01:11):
Oh God, I am literally drinking water.
But if it makes it any moreexciting, it is on the rocks,
and part of the reason for thatis somewhere behind me I have a
five-year-old throwing up.
Reason for that is somewherebehind me I have a five-year-old
throwing up, so I do not wantanything else in me tonight.
Speaker 1 (01:30):
Totally fair, that's totally fair, goodness.
Well, stacey, you're still atwork, so I'm assuming you are
also probably not imbibing withme.
Speaker 2 (01:38):
No, I had to go for the Gatorade.
We're still on.
We're on year two of softs andliquid.
Speaker 1 (01:48):
I'm sorry, that's okay.
Well, okay, I guess I'mdrinking alone tonight, which is
not the first time that's everhappened on this show, but so I
am drinking an Aperol Spritz.
So next question for you istell us your IBD story.
What brings you into ourcommunity.
Speaker 3 (02:00):
I mean, how much time do we have?
Because this goes back toprobably almost toddlerhood.
I grew up with frequent stomachaches and I am one of four kids
, so I was the only one whocomplained of stomach aches all
the time, like it was my norm.
And as a child like when youdon't know any different you
(02:21):
don't know how abnormal it is.
So looking back now, it's likewow, like I feel bad for my
younger self and like what Iwent through.
And I look back now and realizethat I actually had anxiety
from it, because I had suchfrequent stomach aches and, for
whatever reason, I always feltworse at bedtime and I always
(02:43):
kind of dreaded falling asleepand wondering if I'd wake up at
night.
And I always kind of dreadedfalling asleep and wondering if
I'd wake up at night with astomach ache, wondering if I'd
wake up nauseous, if I'd have tosit in the bathroom.
So looking back now I'm likewow, that anxiety like like
that's what I had, like I wasscared to like lay in bed and
worry if it was gonna be a badnight and it kept me up, it made
it harder to fall asleep and Iremember thinking like
(03:05):
everything under the sun, likeGod's punishing me I don't eat
my fruits and vegetables andwondering, like, how do I make
it better?
Do I need to eat differently?
And I think I've complainedabout it enough that my parents
would listen to me once in awhile about it and my mom would
take me to a doctor here andthere.
And I remember being onvacation once, like maybe down
(03:27):
in North Carolina, maybe theouter banks and I remember my
mom taking me to like a I don'tknow if it was like an urgent
care or for doctors down therehospital and complaining that I
was having stomach pain.
And I remember like they did anx-ray or something and they
never found anything on imagingand they always chalked
everything up to constipation,gas pain and I think one of
(03:50):
these places they even tried tofix it via giving me my first
enema as a child and even thatwas like I got to do what, like
we're in a doctor's office hereand stuff like that.
So like growing up constant,like constantly stomach problems
stop, constantly worried aboutit.
And it wasn't until, if youwant to fast forward, till my
(04:12):
senior year in high school.
I was having a different pain.
It was like an upper stomachpain and it was almost like
every day.
Sometimes it definitely seemedlike it was after I ate and
something else was going on atthe same time where my period
shut off and I neverspecifically mentioned that to
my mom because I was like thisis great, I don't want it back.
(04:34):
And it was like six months andof not having it.
And then I just remembersomething was very interesting.
Timing was, I think my dadswitched jobs and he got a new
plan and that plan with theirmedical coverage required or
wanted kids to get blood work orsomething.
And I'm thinking like my wholelife, like 17 years, I never got
blood work and now I have toget a needle in my arm and I was
(04:56):
freaked out about that.
And I remember getting some ofthat back and seeing
abnormalities on there like lowiron and other things, and so
you piece that together.
I was also coming home everynight from my senior year in
high school, tired.
I would come home.
I remember I would lay on thecouch, maybe get up for dinner,
(05:17):
lay down the rest of the night,and I remember there was like
frequent fevers.
So after so long of this goingon, I got to another point with
my mom where she's like allright, we're not waiting for a
doctor appointment, I'm justgoing to take you to the
emergency room.
Looking back now, like heck,yeah, like fevers every night
your child's sleeping, like Iwish it went sooner, but I guess
(05:37):
by time we went I went to the,a local hospital, and they did
their typical imaging and theblood work and they said you
have pancreatitis, your pancreasis enlarged.
Um, I believe the things thatyour pancreas secretes is
amylase and lipase.
And to measure what was beingsecreted, they were off the
(05:59):
charts, like if normal is under20, they were over a thousand,
like something like that crazy.
And they're like we can't treatyou here.
Would you like to go toPhiladelphia or the Hershey
Medical Center?
And so another thing I was likegreat, I'm another medical bill
for my parents and what's goingon with this now?
And I had to decide which one Igo to.
(06:19):
And I was like I'm not a cityperson, so I don't want to go to
Philadelphia, like send me toHershey.
So I went to Hershey and I wasthere.
I went, I think I went first tothe ICU, then eventually was in
the room.
I think I was there for about aweek, couldn't eat the whole
time to like calm down thepancreas and I remember them
using that term at the time idio, something meaning they
(06:39):
couldn't determine what all myproblems were from and they left
me with also perplexed on why Ididn't have my period.
So they're like thinkinginternal bleeding somewhere,
like period shuts down, tryingto save those nutrients for your
body that needs them.
Maybe I'm bleeding so, theysaid they.
They left me out with a scriptto get a colonoscopy, endoscopy.
So just another traumatic eventfor 17 year old had to go
(07:03):
schedule one of those preppingfor it One of the worst things
ever doesn't get easier Five, 10colonoscopies later.
So they did that and I rememberthe doctor said afterwards like
it looks like Crohn's and in myhead I just jumped on that
looks like like.
I felt like they did not sayspecifically it is.
(07:23):
It's almost like it was left mewondering like is it?
Or like am I going to getbetter?
I remember the first thing Iasked or was thinking was like
is this going to shorten my lifeexpectancy?
So as like a 17 year old?
That was my first thought andthen my second was probably just
being worried that I'm just amedically expensive child at
(07:44):
this point and feeling bad forthat.
So I got on at the timemesalamine, pentasa, and I was
on four pills at least twice aday, at least something like
that felt like a lot, maybe itwas eight pills, and then I
stayed on that.
I went to college.
Luckily, college was likemostly remission for me, so I
(08:04):
didn't have many issues there.
I think I was really leavinghigh school trying to follow
protocol, trying to eat a littlebetter, and then I had my next
flare that landed me in thehospital probably a few years
after college, when I wasactually working in career life,
(08:25):
and so that was a differentexperience, actually having to
call out of work to be in thehospital, and and then I think I
had like a good nine yearstretch without a
hospitalization until one of mylast two recent ones.
I had to like about two, one ortwo years apart.
So yeah, that's recent ones.
(08:46):
I had two like about two one ortwo years apart.
Speaker 1 (08:47):
So yeah, that's that's the journey of my Crohn's
disease.
Oh wow, that's a long time it's.
I mean it's remarkable to thinkthat that was going on for so
long and like no answers.
If you don't mind my askingwhat were the things that
exacerbated?
Like you know, you said you hada couple of flares.
Was there something like thathappened during those flares?
Was there anything associatedwith it?
Speaker 3 (09:06):
So I 100% believe stress will trigger a flare and
I don't know if there's proofbehind that or not, but I
actually had been living with aroommate who up and walked out
of our lease so I had to be puton the spot to find someone to
replace them.
They just left and I think allthe stress from that and dealing
(09:29):
with that roommate put me intothat flare.
So that was the onehospitalization.
And then the other thing that Ithink sends me there is I swear
there's something about gettingGI bugs that trigger flares for
me, and the last two were post,like kids were throwing up at
home from like school daycareand then I caught it and then it
(09:53):
was just a different kind ofpain and I'm like like I want
relief.
It like if you want to go tothe hospital, like you want to
get that morphine or theanti-nausea and you just want it
to stop that it's that bad.
And so those last two GI bugswere the other things that sent
me there.
Speaker 1 (10:11):
Gosh, let's all knock on wood that whatever GI
episode that's happening at yourhouse right now is not
something that you catch,because, yikes, that's got to be
anxiety producing too.
Like every time your kid issick, you end up potentially
needing to go to the hospital.
Speaker 3 (10:28):
Yikes.
Yeah, I think that's probablywhy I'm borderline actually
having a phobia about throwingup and a lot of people don't
understand why I avoid like theplague anyone with a GI bug and
I will not go to their house fora minimum of 14 days after.
I don't want them at my house.
I avoid it so much because Ithink for my body throwing up is
(10:50):
an ordeal Like sometimes Iliterally hyperventilate during
the process, like I.
I tried to describe to mydoctor what I was happening.
They're like I think you'rehyperventilating, like you're so
worked up about it that I feellike my hands locked up and I
was the breathing it was toomuch and I felt like tingly and
so now I try to concentrate onslower breathing so my body just
(11:14):
doesn't like it.
I it's a huge process to throwup.
So even luckily if my husband'saround, he knows to be on like
the throw up duty of the kids,just because it'll just trigger
anxiety even before symptomswould actually happen.
So yeah, I try to avoid it.
Speaker 1 (11:31):
Oh God, throwing up is so awful, but having that
type of visceral reaction to itis so different and immobilizing
, I think, in so many ways.
One of the things you wanted tochat about was talking about
work and how you were impact,how your Crohn's impacted your
work.
So do you mind giving us alittle download on that?
Speaker 3 (11:48):
I think really, the whole COVID 2020 brought out
work accommodations a lot forpeople and I never sought one.
But it's all that stuff inhindsight again of looking back,
what I dealt with to get towork and at work and not
realizing like I could haveasked for a medical
accommodation and then, by time,covid had brought medical
(12:12):
accommodations to light.
I actually, when COVID endedand they wanted to call people
back to the office, I sought outa medical accommodation for my
Crohn's at that point because Idid a lot of research on my own
on them and I'm going to don'tquote me because I'm just going
to paraphrase, summarize this aswhat I remember, and it's
already been a few years, butsomething to the effect of if it
(12:34):
doesn't cause your employer ahardship and it's not impactful
to the job, then they're legallyrequired to provide that
accommodation.
And I'm like, okay, during workfrom home COVID, I was promoted
.
I was doing some of my bestwork ever.
I got a bunch of certificationsonline with my job and my boss
(12:54):
at the time would have given meany good word that was needed
and he my current, my boss thenvery much supported the medical
accommodation, which is what Iwanted was just to work from
home because it alleviated somuch anxiety and anxiety
triggers so many symptoms.
So what I didn't realize isthat all that time that I was
(13:14):
commuting to work.
So some of the symptoms I havewith Crohn's is urgency and I
know that's very tightly aroundanxiety.
So I probably have a good 20minute commute to my previous
job and I was there for 17 yearswhen I and when I did leave.
So during that commute if I gotanxiety or if I got symptoms, I
(13:35):
would need a bathroom veryurgently, to the point I'd have
to stop up to three times indifferent bathrooms, gas
stations, just to get to work.
And I'm like no one knows thisat work.
No one knows what I wentthrough just to get to work.
And or I would also move up mytime and get to work very early
because of it.
(13:56):
No one knew that and it'sbecause going to work earlier
would allow me to miss a lot ofthe traffic.
I live in a congested area, sothen you get against the problem
of even then there could betraffic.
I live in a congested area, sothen you get against the problem
of even then there could betraffic.
And if I still need to go.
Now it's like our place is evenopen at six 30 in the morning
to run into and I've run intosome very shady bathrooms at gas
(14:17):
stations at six 30 in themorning and I'm like thinking
about it now with kids.
I'm like if I had a daughter Iwould not want them to have to
do that, going to work and likeI was a business casual, like
you might be wearing skirts,heels, glasses, going into a
bathroom in the dark at six 30in the morning, and I had to do
that daily, weekly, just to getto work.
And then at work I always hadthis anxiety about being in a
(14:40):
meeting and needing to use abathroom and it always.
I felt like I was always infight or flight and having to
worry about like, leave ameeting, I need a bathroom.
Everyone knows you're leavingor people know you went to the
bathroom, are they aware of howlong you're there, type of thing
.
And so I've worried about thatfor so long that by the time I
was home on COVID work from home, after a year of COVID work
(15:02):
from home, I had my first bloodwork ever since that high school
blood work.
That came back normal,everything in normal range for
the first time my even theinflammation, and I was like,
doesn't that tell you something?
That I didn't have all of thatanxiety, all of that pressure
dealing with all of thosesymptoms and all I needed was to
(15:23):
work from home and not havethat affect my health.
So at that time the currentboss was amazing about it and he
knew like I was probablyworking harder there than trying
to get to three bathrooms andget into the office and it was
very doable for my job with whatI actually did.
I really didn't work withpeople I sat with there.
I really worked with people inother countries and in other
(15:47):
buildings via teams meetings.
So work from home was great formy job.
So COVID ends, they want tobring everyone back to the
office.
And that's when I saw themedical combination I lost
multiple times with and I had togo through appealing it and
appealing it and I probablyreally pissed off my doctor
because I had to use him to keeprewriting his note.
(16:07):
They would say, well, yourdoctor didn't say you have to do
this, or, and I'd be like, letme go get him to say that
because like he was willing tohelp me get this and after
fighting for like six months.
I finally got one and it wasthree or six months later.
They want you to go through thehoops to renew it and I'm like
this is getting ridiculous.
Nothing's changed in three orsix months.
(16:29):
So every like six months I hadto like redo this process and I
think at some point I had aconversation with them and we
got it pushed out to a year atsome point.
And then fast forward, myemployer started really pushing
anyone with accommodations leftafter COVID to come back to the
office and I had to fight withHR about it.
(16:51):
And HR I remember the lady shewas awful.
Obviously they aren't reallyhuman resources, they're just
bulldogs for the company.
I said to her I said would youwant your daughter to have to go
through what I go through everyday to get to work?
And she's like, well, I wouldtell her to try.
And I was like, okay, what kindof mom are you?
So it's like they didn't careand regardless of my medical
(17:15):
accommodation, they were pushingme to come back.
And what they do when they wantto push someone out is then
they'll start giving you a badreview and then they'll find
ways to make you want to leave.
And in that sense I let themwin.
But on the flip side, I knewwhat I was leaving for and I was
(17:36):
leaving for my health and I wasleaving to start BeWell.
Speaker 1 (17:37):
It's very insidious, and I think that people you're
right, people kind of assumethat HR is there for you but HR
is there for the company.
And so I think that peopleyou're right, people kind of
assume that HR is there for youbut HR is there for the company,
and so I think that's sort ofnumber one.
And I do think there's amisunderstanding about medical
accommodations as well, becauseit doesn't, you know, if you
have a lifelong condition, ofcourse, like yeah, that thing,
things don't change for younecessarily, you know, but there
(17:58):
are.
I think that is one of thethings about these relapsing,
remitting kinds of diseases isthere are times where probably
you may need more accommodationsbecause of being in a flare or
whatever it is, and so there canbe times where maybe for some
people, getting to work orworking in an office is
perfectly fine for them.
It's just they need access to abathroom or whatever it is, or
that there are times whenthey're flaring, they need to be
(18:20):
working from home, and so Ithink, you know, I think that's
some of the issues is that themedical accommodation isn't like
well, you have carpal tunnel,so you need this type of
keyboard right.
So it's like there isn't thatdirect correlation.
It's like you have to actuallytry and be thoughtful about the
accommodation and that's notalways everybody's strong suit
perhaps in the accommodationsprocess.
Speaker 2 (18:40):
And even with SMLA it's a challenge.
My doctor, my gastro, has beenabsolutely lovely.
He's like you fill out whateveryou need and I will sign it.
But there there's so manyquestions about like, how many
days a month or a year would youanticipate this person being
out?
Well, one year it was sixmonths, you know, and one year I
had three hospitalizations andthen one year nothing.
It's, you know, impossible toestimate that stuff.
(19:00):
But yeah, hr wants that.
Speaker 1 (19:02):
And he's just like I'm going to, I'm going to aim
high and give you the benefit ofthe doubt, and he's like we're
going to do like two work days amonth and then, just just to
give me a little bit of wiggleroom, we are going to be having
an episode, so there's a womanwe had on the show Gosh
(19:27):
no-transcript so I am excitedfor people to be able to listen
to this to talk about, kind ofhear your story of this and then
hear from her about kind ofsome of the things you can ask
for, because certainly doesn'tsound like they handled this the
way it should be handled.
But I'm going to give you thecaveat that I am not an attorney
and so I cannot speak forlegally.
(19:49):
But it sounds like they werekind of not following the rules,
because the rules are that,yeah, you're supposed to be able
to say I have this chronicillness.
You're not even, you don't evenhave to disclose what the
chronic illness is.
You just need to say I have achronic illness that's protected
by the ADA and these are thetypes of accommodations I need.
And you're right, as long asit's not costing your employer
major.
You're asking them to installan elevator and that's going to
(20:15):
cost them $100,000.
It should be acceptedessentially, and especially
after working from home.
Clearly you showed you can doyour job.
That got real weird for so manypeople.
Speaker 2 (20:22):
I really love when people like have that moment
where they're like I have tostart advocating for myself.
That's a really importantmoment in our everybody's
journey and it sounds like youwere very on top of that and
just saying like no, just sayingno, is so hard for us as
patients.
We're just, you know, likeinitially, when you get that
diagnosis, you're like well,okay, and like to fight and ask
more questions and say this iswhat's working for me and this
(20:44):
actually improved my health, andfor them to deny it.
It sounds like you made thebest move for yourself and it
sounds like that wholeexperience kind of helped this
transition to Be Well happen.
Can you tell us a little bitabout how that came to life?
Speaker 3 (20:57):
Yeah.
So the start of Be Wellhappened while I was still at my
employer and I followed theprotocol there.
I had to let our company knowlike I'm starting something on
the side, and I think the onequestion was is it in the
financial space?
Because it was a I worked atfinancial company mutual funds
and they don't want you to be acompetitor.
They obviously don't want youto share information.
(21:17):
So I'm like no, it's retail,it's e-commerce, and they're
basically like I don't care andlike you can have, you're
allowed to do whatever you wantin your spare time have a second
job, whatever.
So I started BUL in well, Iguess it would have happened
after a February-ishhospitalization in 2022.
And that was after one of theGI bugs.
(21:37):
And when I was there in thehospital, I was freezing and I
rang the nurse bell to see if Icould get another blanket.
And when I was there in thehospital, I was freezing and I
rang the nurse bell to see if Icould get another blanket.
And when I rang it, I of coursedidn't expect someone to open
my door in 30 seconds, but itwas becoming over 15 minutes
later and it was kind of likeyou're already in a mental state
when you're in the hospital.
So something like that couldjust make you sad, hit you the
(21:59):
wrong way.
So I'm just like, yeah, I feelbad that I am not upset.
I wouldn't describe it as upset, but just wishing it wasn't
taking so long.
But it's post COVID at thispoint and you know there's like
a nursing shortage and you knowthat there's other people with
bigger problems going on in thehospital.
So it's not not like that.
But at the same time it's likewow, you don't know what I
(22:21):
wanted.
And so what if it was somethingworse?
Or what if by that time went byand I had needed help to go to
the bathroom and I had just wentin the bed, kind of thing.
So it's kind of like thatfrustration of like man, I just
wish there wasn't a nursingshortage.
Man, I wish it didn't take 15minutes for the nurse call bell.
And it was after that that thisidea of having something to wear
(22:41):
that had full sleeves becauseyou know the gowns are a little
bit more short sleeve came tomind.
Well, guess what?
The first thing I didn't thinkto do was to create them.
It was to Google them and belike should I buy one?
So I remember Googling about itand I don't try to pretend that
I was the first one out there.
(23:03):
So I always have this weirdfeeling of if you think of
something and it's a new idea toyou and you never heard about
it before, give yourself creditfor having an idea, like just
because someone else thoughtabout it and it's also out there
in the world, like I don't takethat credit away from myself.
So I had the idea, I Googled it,it existed and I saw two
options at the time.
One option was priced over $200.
(23:25):
And I was like that's not in mybudget.
And then one option wasprobably below 70, but I no
offense to either company.
I thought they were bothhideous and I was like I
wouldn't buy either.
Because one, the sleeves openedall the way up on the one that
was $200.
And they had these very likebold prints inside the sleeve
(23:47):
and I was like that's not mything and they look really weird
when they're flapping open likethat.
And then the other one usedreally chunky white zippers on
what looked like a gray gildedyou know Walmart kind of fabric
when you picture like a cheapsweatshirt, and it's probably
scratchy and not cozy.
So I guess you need a little bitof a backstory to my next
(24:09):
thought.
My next thought is like I cando this better, and the reason I
thought that is because myhusband has been, since I've
known him, like.
He's an entrepreneur, he has anentrepreneur spirit, he also
has a day job in the financespace, but since I've known him,
he's been trying to createproducts and have something take
off, like kind of the idea oflike one day to not work for the
man, one day to have his owncompany.
(24:31):
And his last brand ended uptaking off.
And now it's it's still just Istill call it a small business,
but they were just on Shark Tankand so there, if you've heard
of it, it's called BroGlo SelfTanner for the Boys, and feel
(24:53):
free to check out the websitebecause all the reviews are real
, they are not paid for, and Igo on there once in a while just
to look at them because they'rehilarious.
I can't believe how many guysshare pictures of body parts
that they tan with Brogloactually in their reviews.
So it's very funny.
So, of all things that he'sdone in the past to take off,
broglo took off, and it took offbecause of viral TikToks.
(25:16):
They started in 2020 and theyhad a case where they went viral
.
They sold out of like theirfirst 200, bought 400, sold out
of 400, bought 800 kind of thing, and then they just kept going
from there.
So in my head I was like I coulddo this.
This could be my new day job.
Let me work towards that.
And so in the hospital thenthat February, I sat there and
(25:40):
kind of designed and I was likeFebruary I sat there and kind of
designed and I was like myfirst first thought to it was
very siloed to my experiencesand I was like, all right, I
have this bucket in my car as myemergency bucket to use for the
bathroom.
And it was one of those emptiedout ice cream pails you know
from parties with trash bagslining it.
And I said, well, we got tomake that better, cause I put my
(26:02):
weight on it once and crackedit and like you can't just sit
on it, that rim would hurt toomuch.
So I started designing a bucket, I started looking for
manufacturers.
I was new, I was leaving thereon a restrict, a restrictive
diet again, and I'm alreadyprobably because of Crohn's, I
don't know, but I'm already apicky eater.
So I'm like when you alreadyhave to narrow down your already
(26:22):
narrow list of foods you eat.
I was like let me write, I'mgoing to go to the store from
here, make sure I have thethings I can eat, like white
bread, white rice, eggs,whatever.
And I was like you know, Igoogled some of the IBD type of
journals out there and I feltlike everything at that time
that I was looking at was eitherjust a generic symptom tracker
or some IBD specific ones,didn't get very specific in
(26:46):
certain details, like it didn'task if you had blood in your
stool, it didn't ask if you hadgas or bloating and those types
of symptoms.
So I sat there in the hospitaland designed a new IBD journal
for symptom tracking and I addedyour stool chart, but I also
added the times per day and Iadded the water you're drinking
and your sleep hours and I addedyour school chart.
But I also added the times perday and I added the water you're
drinking and your sleep hoursand I added your mood and I
(27:07):
added the gas, the bloating, theblood and all those things
related to IBD.
But personally, everything Iknow about medical is those are
important to anyone's health.
So in hindsight I wish I didnot call it an IBD journal.
I wish I had called it just thesymptom tracker.
But that was designed in thehospital.
And then I said how I would makeall these IV zip hoodies better
.
I would use a premium fabric.
(27:27):
I wouldn't put a big fat uglylogo on it like that one with
the white zippers.
I wouldn't want white zipperson my sleeve.
Why do I want to call attentionto having extra zippers in
funny places?
So I would make them discreetand color matched and have a
soft fabric and no funky, boldthings inside the sleeves.
And so I sat there, designedthat.
I also said, well, if I'm goingto have like a crone store,
(27:49):
what else would I want?
I'd really like I would want adiscreet pill holder because I
go to work.
I actually had pop top pills inmy desk drawer at work.
I'm like, but it'd be nice tojust have something sit on my
desk, easy access, but not belike, hey, I'm taking pills
every day.
So I designed a more discreetpill holder and I think those
are the main things that Iinitially designed.
(28:10):
And then I I didn't currentlyneed infusions, so it was more
about the hospital stay for me.
But obviously so many autoimmunediseases, cancers.
People are getting infusions, sothat's the very main big reason
people are purchasing them.
For me it wasn't the main bigreason, but for that I thought
it made sense to have like atote bag, because, whether it's
(28:31):
that hospital stay or infusionday, so the totes and the
blankets and I'm like, well,what's gonna make my stuff
special compared to any othertote or blanket that you have?
And it's the quotes that I puton my products.
I feel like that reallyresonate with people and that
you can do hard things oreverything else can wait or find
comfort in the little things,strengthen the journey.
(28:52):
That's where Be Well was born.
Be Well didn't have a name fora little while because I was
like I know I'm going to want mylogo on things, but what logo
is not going to be big and ugly,resonate with people that you
would actually want to wear itsomewhere on your item?
And it came to me because bewell is what my GI doctor says
(29:13):
to me every time we part ways.
He doesn't say goodbye, he saysbe well.
Speaker 2 (29:17):
Now is your GI going to want a percentage of sales
now because of that.
I going to want like apercentage of sales now because
of that.
Speaker 3 (29:25):
It's funny, because when I first told him about it I
thought he it was like a nicegesture, I thought he enjoyed it
.
I also feel like I get thatfeeling from him, like like he's
proud of me proud not daughter,but you know like a proud
proudness there.
So I did have at the timeearlier on in print, like I
(29:45):
called it like a marketing card,just like pictures of the
products, and there's aninfusion center at my GI office
and I was like would you letthese be in the infusion center?
And he did so.
Every time I go there I bring acouple more right.
I have to redesign them, butI've printed some of the old
ones out and brought them everytime I have an appointment.
And so I think he feels proudand that he's happy to see
(30:07):
everything I've done.
And it's nice to have thatsupport because I'm always
worried about him and or any GIdoctor for that fact, because
I've been avoiding therecommendation of biologics for
the longest time.
So I'm worried that one daythey're just going to drop me
and be like well, you don't wantto do what we recommend.
So I feel like I walk a fineline there.
Speaker 1 (30:29):
You started out with sort of these specific products?
Have you evolved your productline based on people's feedback
and people requesting it, or howhave you decided on what to add
to your store?
Speaker 3 (30:38):
Definitely take feedback.
One of the things that I'm soglad I started is I have this
VIP group on Facebook.
It's called Be Well VIPs andthe purpose of the group is to
have an engaged group of people.
Like if you're coming to joinit, like I expect that
participation you know notrequired, but that you want to
be here, you're coming to jointhis group and the purpose of
(31:00):
that group is to have a forumthat I'm not just blasting on
social media but a place to belike what do you guys think of
this?
Or, hey, let's do something fun.
You guys vote on the next colorIvy Zip Hoodie, or people
actually will shout outrecommendations there.
And one of the things that I didwell I should say I'm
implementing going forward isthe feedback from people in that
(31:23):
group said hey, we wish yourIvy crewnecks and your Ivy
multi-access had pockets.
And the multi-access didn'toriginally have pockets because
it was a pullover hoodie and thetwo big arch zippers go down
near like the center zip areaand it's not like you could add
that kangaroo pouch type pocket.
So we worked with themanufacturer and I'm going to do
(31:44):
like invisible kind of side ofpockets on the future multi-axis
designs and crew necks.
That's something that came outof that group.
Sometimes that group will feelreally strongly about something
like I'll put poles out there,and so it's really good to hear
what they want to see next.
Trying to think of an example,if they really push towards a
(32:05):
certain product.
I guess one place that socialmedia whether it was VIP group
or social media in generalhelped guide is going to be
launching in about two months.
I don't have the official nameyet, but I just for now call it
the MRI hoodie, a non-metalhoodie.
So the current hoodies havemetal in the zipper pools and
this hoodie string pools.
(32:25):
Not my need to need one for CATscans and MRIs and imaging
machines, but apparently otherpeople do them enough that they
wish they had it for those withthe IV access.
So we designed something thatis made out of Velcro and no
metal, just plastic on thestring pools, and we'll be
launching that soon.
So that was purely social mediafeedback and yeah, so VIP group
(32:50):
really helps get us to leavesome fun things for them.
Like I could easily pick whichcolor we do next, but it's also
fun letting a group decide, likewhat colors you want want to
see next and one of the thingsthat we'll be launching probably
probably still this spring isour.
The discreet one day pillholders that I talked about was
(33:10):
one of the first products we had.
We've had very pastel, neutralcolors and we're finally going
to add some brights and like.
For me, I like the idea of likea neutral one for like, my desk
at work, but I like the idea ofbrights for, like, if I'm
traveling for a day and just tohave something fun, to like open
your purse and have like abright colored pill holder.
(33:31):
So yeah, I think that's wherewe kind of blend what we're
hearing from comments of peoplebuying versus that VIP group and
social media and help guidewhat we add next.
Speaker 1 (33:42):
That is so fun.
I am curious, like as anentrepreneur, like how do you
start sourcing, like whereyou're going to get your hoodies
, like how do you even startwhen you're starting to like
build a business like this?
When you said you worked infinance, it doesn't seem like
this is something that you, likeyou just sort of you know, knew
where to start looking to startand companies to work with to
build design these, build them,build them, not design them.
(34:04):
You did this design.
Speaker 3 (34:05):
So I think, with my husband's initial knowledge of
having done it multiple times,because he did it with Brogo and
sourcing, and then he's had acouple other things before, like
one of the things that he hadbefore that was glass water
bottles, and so he sourced those, and funny is that I've always
had a design input on all thoseother products, so the design
(34:26):
part comes easy to me.
But honestly, google, like youjust can Google clothing
manufacturers and you can justyou research and say, like if
you're looking for a specificmanufacturer like clothing
apparel, you're gonnaspecifically Google for that,
but not just to find themanufacturer, but you're
Googling the research on whereis the best place to manufacture
(34:48):
these Like for clothing in theUnited States the best place is
probably LA for clothing, andnot that I wouldn't say I can
say this with certainty.
But I think even a lot of thematerials are still not sourced
in the US from making the cloththat you're using.
So there's probably no wayaround getting anything right
(35:11):
now with the currentinfrastructure completely made
in the US.
But I'm sure it's feasible.
It's probably more expensive,probably higher order quantities
to get a price that you need tobe reasonable.
But yeah, it's between hisprevious expertise with doing it
multiple times and then justGoogling and research, because
he never did clothing so andthen it was interviewing
(35:32):
manufacturers, like having phonecalls and emailing them and
asking questions, and it waskind of like who came back that
seemed the most responsive andsomeone that if I'm going to
work with them, that I can getahold of them, and I think that
was what helped us decide onreally who to go with.
Speaker 2 (35:49):
And I love the idea of just like whenever I go to
the hospital, I take my ownclothes.
I refuse to wear a gown, and soIVs are definitely an issue.
Because of this disease, I haveCrohn's you don't have any
control, and so I have somethingthat I have control over.
It's like what I'm going towear, and so like the idea of
the hoodie, making it that mucheasier to stay warm and not have
to depend on those blankets,and like they're lovely when
(36:10):
they come from the warmer, andthat lasts about four minutes,
and then you know, or if I sneakmy heating pad in in my bag,
but then they'll get mad aboutit.
So yes, just that.
Or I've had to go get the ironinfusions and the biologics and
stuff, but yes, to just havesome control over the situation,
whether it's what you'rewearing, and I love that.
It just adds to my arsenal ofwhat I have control over during
the stay.
(36:30):
So prepare for an order.
Speaker 3 (36:33):
Speaking of that, one of the things I've been trying
to design for like over a yearnow and I'm trying to make
myself go to the finish line for2025 is our Be Well version of
a hospital gown.
So I think I have a majority ofwhat I need.
I think it's just been a littlebit scared of pushing out the
first version but it not beingperfect, because there's so many
(36:54):
needs people have in thehospital that I'm not aware of,
so I probably really need to runit by someone that is more
familiar with that.
But like, for example, some ofthe things that I know from my
own experience that I want tochange is not the regular back
opening where you're holding itwalking down the halls, and for
me, I want longer sleeves sothat I can feel more warm.
(37:14):
I obviously do not want ascratchy thin fabric.
I have a prototype.
It's very phase one.
It was the guy trying to designit with Velcro and front
opening, back opening, armsopening with Velcro Didn't love
how the first one turned out.
I think it needs a little bitmore of a tailored look, not to
(37:35):
make you look like you'rewearing a box, you know, and so
I'm working on that and thenneeding to get the pockets right
.
So offline you want to talkabout anything you know about
that.
I'm trying to decide where thepockets need to be, because I
know people have those.
The heart monitors I'm notgoing to pronounce it right the
telemetry boxes, something likethat yeah, telebox, and then
(37:56):
you'll sound super like you'rein the telebox.
So I know people want to carryall these things that I'm not
familiar with and I just need toget pockets right and I know
like you could walk down thehall, maybe you want to have
your cell phone there.
So I want to make sure I gotthe pockets.
I got to try it out first too.
I want to make sure, like youcan lay on Velcro and it not be
like I know the Velcro won't betouching you, but if it makes a
(38:17):
little bit of a bump, is thatgoing to be uncomfortable?
So I'm still in design phasefor those.
Speaker 1 (38:22):
Well, and I'd be curious to what, like the
hospital says about that.
Like, cause I know you knowlike they all of the gowns are
laundered in a certain way andwhatever, whatever and like.
So it's like, would you getpushed back from the hospital?
Stacey, have you gotten pushedback in the hospital for not
wanting to wear the gowns andbringing your own stuff?
Speaker 2 (38:37):
No, Cause I think part of it was my age when I
decided, okay, I have to havesome control in this and I'm
don't want to wear the gowns,like you said, get up.
I'm usually there for anobstruction and they want you to
get up and walk around and yeah, I don't want my bum hanging
out.
And if I'm going to have to getup, you know I always take a
sports bra and usually tank topsso that they do have as much
access as they need.
They know, and I think alsojust with my age, and I'm a
(38:59):
grumpy old nurse and I'm likethis is how it's going to be and
I go in and I wear a sports brabecause there's no metal, so I
can get my CT scan done and likeI can go straight into my room
and then, you know, I can do abed bath on my own and get in.
You know, if they, if they, Iknow how to disconnect my IV.
I'm not an idiot.
But you know, if you let themknow, hey, I'm doing this, I'm
going to get myself cleaned upand I'll get reattached, it's
(39:20):
fine.
But yeah, I've had to wear theteleboxes and stuff, yeah, so
you do have to kind ofaccommodate, for, you know, the
extra stuff.
But yeah, I think the longersleeves is good and like maybe
just a slot to slide your phonein, maybe up here, where you
know it's a little higher, Idon't know.
But I love that idea of havingthe pockets and just, you know,
being able to move around alittle bit without your bum
hanging out.
Speaker 1 (39:40):
And it sounds like.
It sounds like Stacey wouldlike to be part of your VIP club
to be able to help you withthis.
Speaker 2 (39:45):
Frankly, yeah, and like is the thought to like
market it for the hospitals ormarket it to patients to take to
their hospital stays, or both.
Speaker 3 (39:55):
Yeah, I think initially it would be the
patients that know like I'mgoing to go in, I'm going to
have a bowel resection orwhatever it is.
Obviously it's for more than IBD.
So I know I was talking earlierlike it kind of started in that
silo of IBD but then all thepeople and all the autoimmune
diseases came together and I'mlike this is not IBD, this is
autoimmune, this is cancer, thisis chronic illness.
(40:16):
So it quickly morphed from myinitial silo of thinking about
Crohn's store to chronic illnessstore and making life easier
with chronic illness.
So I think it's for anyone thatthinks they know they're going
in for something long-term butat the same time, if, like,
obviously, if you're going infor two days, like why would we
not grab it too, If we have one,and then like, maybe it's in
(40:39):
the future, like we're still sosmall, I operate BeWell out of
my home.
So in the future, if we'retalking wholesale orders and
having any type of contracts inthe future with hospitals, like
sure, like maybe hospitals willbe a customer of the future.
We haven't done that yet, butdefinitely open to it as we grow
.
Speaker 2 (40:59):
And I wonder if, like children's hospitals, would be
super into it where, if you havespecial design, because I have
seen, I know I've seen a coupleof kids that have their own
gowns.
I have seen, I know I've seen acouple kids that have their own
gowns with you know, you knowif you're six and you've been in
the hospital, you know, twice ayear since you were three, then
you know they have their ownstuff.
So that, yeah, but I know thathospitals, children's hospitals,
do really good job ofaccommodating the kids in like
(41:21):
adult hospitals they don't care.
So but yeah, I would pack that,because I pack, just like you
know, the, the shorts with thebuilt in like unders, because
that is one thing I hate in thehospital is just being like out
there.
Speaker 1 (41:33):
You know, yeah, but now I may have a new custom made
gown with special pocket, soyou're working on a hospital
gown.
Are there other things thatyou're like plotting or other
business propositions you have?
Speaker 3 (41:46):
One thing that I was requested to make by a patient
is they have like a port pillow,a little pillow that sits on
their seatbelt and so that theirseatbelt doesn't rub their port
, and they're like, just likeyou did with the IVs of putty,
like you can make this betterand like obvious thing.
Number one again was like thefabric choice.
(42:08):
And this is a male using thispillow with like flowers and
bows, and I was like, yes, I cando that better.
And then I said, is there anyother problems functionally with
it?
And he's like, well, honestly,it's starting to fray my
seatbelt.
So he thinks it's becausethere's Velcro that holds it on
the seatbelt and the Velcro isjust plain Velcro and if you can
(42:30):
picture the feeling of Velcrowhen it's not sewn on fabric,
it's kind of sharp, has sharpedges.
So I think that's what could befraying the seatbelt, because
you get in your car, you'repulling it down to your port and
get out of your car You'repulling it up when the seatbelt
goes up.
So I said I should be able tofind a way to cover the edges of
Velcro by sewing fabric aroundthe actual Velcro that's around
(42:53):
it.
And then I also think thatmaybe if I have two straps
instead of one, that it's goingto share.
That like resistance a littlebit.
And then obviously a moreneutral fabric, like the first
thing that came to mind is likeblended in with your car, just
like my zippers don't callattention to it.
So I was like suede or likefaux leathers that are black,
tan, cream, gray, whatever, likecar interior colors or
(43:14):
something.
So I'm going to probably gothrough a prototype on that.
I just went through design anduse the feedback from that VIP
group on proceeding with.
It is the one thing I hate afterhospital stays and blood draws
and IVs is when they put tape onmy skin and my hairs and I
(43:34):
swear to God, sometimes rippingthat off hurts more than the IV
itself.
And I was like, okay, how can Ido that better?
Like, if I'm going to improvesomething, how do I do the tape
or the bandaid better?
And I was thinking like if Ijust had something that you can
wrap that puts a little pressureand blocks blood from getting
on your shirt, that's all I needto do.
(43:54):
So I just designed like it'sjust the band of terry cloth
fabric, so like think towelabsorbent material, a hundred
percent cotton, so no polyestersfor anything to be allergic to,
and then it has Velcro built inand then you can just now I
don't think it's the easiestthing to use single handed, but
there's someone that's takingyour IV out, there's someone
(44:16):
that's, you know, going to putthat tape on you, so you just
hand it to them instead and say,Can you use this instead of a
tape?
And they just wrap the bandaround that area, apply the
pressure by just how much theytighten the band and yeah.
So something very minor.
I'm going to probably startbeing able to launch those
(44:36):
probably this summer, and I'mjust starting in one color to
start.
They'll be black just to hideanything and just see what
people think about it.
And if people have feedback,then I can improve upon it for,
like the next order.
And then I mean it's not a bigdesign change, but we got
feedback from people on wantinga pullover option, that is, a
(44:57):
hoodie pullover Cause.
Right now we have our Ivy ziphoodies with the center zip and
we have crew necks, but theykind of wanted the hoodie
pullover with no centers.
I think it was like the youngercrowd that kind of wanted that
option and we're looking to doit in like a fabric that's very
comforting and between oursweatshirt Ivy's at putting
(45:18):
material not as thick as Sherpa,but like almost fuzzy like
Sherpa.
So we found some options thatwill make it different, besides
just being another pullover.
That's some of the things thatwe're thinking about right now,
besides just adding new colorsto current products.
Speaker 1 (45:35):
I love that.
Yeah, I think what people don'trealize too is like when you
get infusions, the medicine isat room temperature, not at body
temperature, and so that's notsomething people put together of
that.
Like you know, because it's atroom temperature, it's going to
feel cold once it's in you,because it's not your body
temperature, so you get coldbecause of it, and I don't think
people understand that.
(45:55):
You know, I certainly didn't.
Speaker 2 (45:57):
If you have one nugget of advice for the IBD
community, what would you liketo share?
Speaker 3 (46:03):
I would say prep for your symptoms, like, take what
you need with you.
And I'm going to go back to mecreating the urgency bucket.
Before I created the urgencybucket, before I had the ice
cream pail in my car, I hadpanic attacks in the car about
not making it to the bathroomwhen I needed one and my hands
got sweaty.
I was holding it as much as Icould.
(46:24):
One time I was in a limo withpeople when this happened and
had to have the limo getsomewhere for me to go and I was
panicking and I'm like, oh myGod, I'm going to go in my pants
with other people in this car.
I think at that point it wasprobably post finding out I had
Crohn's.
But there was not anassociation to why I was having
this like attack at this time.
And if I would have prepared,if I would have gotten those
(46:46):
anxiety meds from the doctor, ifI would have brought a change
of pants or underwear or hadtoilet paper or wipes in the car
or with me, I would haveprobably had less likely to have
a panic attack if I wasprepared for situations.
So for me I probably overpacknow.
Now I have an urgency bucket inevery car.
I don't travel even 10 minutesto the grocery store without it,
(47:08):
and so that's my very IBDspecific advice.
But like a higher level pieceof advice would be just you're
your greatest advocate.
Like from my story, I wasprobably gaslit for the first.
How many 15 years of my life to.
You have constipation, you havegas, but no one else is going
to show up for you.
Like you have to say no tosomething you're not comfortable
(47:30):
with.
You have to ask questions, youhave to ask why.
So just be your greatestadvocate, because it's not going
to be anybody else.
Speaker 1 (47:37):
That is all very, very good advice for sure,
amanda.
It has been such a pleasuregetting to hear your story and
hearing about the evolution ofBe Well, and if people are
interested in finding you, thelink is going to be in the show
notes, so I definitely want tolet people know you can go down
to the show notes and find BeWell, thank you.
Thank you so much for joiningus, amanda, thank you, stacey,
for being my co-host and fillingin for Robin, and thank you
(48:00):
everybody else for listening.
So cheers, guys, thank you.
Speaker 3 (48:07):
Hi, this is Amanda.
If you enjoyed this episode,please rate, review, subscribe
and share it with your friends.
Hi, I'm Alicia and I'm Robin, and you're listening
to Bowel Moments, the podcastsharing real talk about the
realities of IBD Serve on therocks.
This week we talked to AmandaPhillips.
Amanda is living with Crohn'sdisease.
We talked to her about beingdiagnosed and how, when she
looked back on her childhood,explained a lot of the symptoms
(00:21):
she was experiencing.
We talked to her about work,accommodations and what she
requested, and then we talked toher mainly about her company
that she formed called Be Well.
Be Well is a company thatoffers all sorts of products for
people living with chronicillnesses, but they're probably
best known for their IV hoodies,which include some
strategically placed zippers,perfect for the times that you
need to go into the hospital oryou need your infusion.
(00:43):
Enjoy Cheers.
Hi everybody, this is Alicia.
Welcome to Bowel Moments.
Speaker 2 (00:53):
I'm your co-host, your temporary co-host, Stacey
Calabro, Joining us today.
We are so excited to talk toAmanda Phillips.
Speaker 1 (01:01):
Yay, amanda, welcome to the show, hi, thank you for
having me, so, Amanda welcome tothe show.
Speaker 2 (01:06):
Hi, thank you for having me.
So, amanda, are you drinkinganything?
And if you would like to share,please tell us what you're
drinking.
Speaker 3 (01:11):
Oh God, I am literally drinking water.
But if it makes it any moreexciting, it is on the rocks,
and part of the reason for thatis somewhere behind me I have a
five-year-old throwing up.
Reason for that is somewherebehind me I have a five-year-old
throwing up, so I do not wantanything else in me tonight.
Speaker 1 (01:30):
Totally fair, that's totally fair, goodness.
Well, stacey, you're still atwork, so I'm assuming you are
also probably not imbibing withme.
Speaker 2 (01:38):
No, I had to go for the Gatorade.
We're still on.
We're on year two of softs andliquid.
Speaker 1 (01:48):
I'm sorry, that's okay.
Well, okay, I guess I'mdrinking alone tonight, which is
not the first time that's everhappened on this show, but so I
am drinking an Aperol Spritz.
So next question for you istell us your IBD story.
What brings you into ourcommunity.
Speaker 3 (02:00):
I mean, how much time do we have?
Because this goes back toprobably almost toddlerhood.
I grew up with frequent stomachaches and I am one of four kids
, so I was the only one whocomplained of stomach aches all
the time, like it was my norm.
And as a child like when youdon't know any different you
(02:21):
don't know how abnormal it is.
So looking back now, it's likewow, like I feel bad for my
younger self and like what Iwent through.
And I look back now and realizethat I actually had anxiety
from it, because I had suchfrequent stomach aches and, for
whatever reason, I always feltworse at bedtime and I always
(02:43):
kind of dreaded falling asleepand wondering if I'd wake up at
night.
And I always kind of dreadedfalling asleep and wondering if
I'd wake up at night with astomach ache, wondering if I'd
wake up nauseous, if I'd have tosit in the bathroom.
So looking back now I'm likewow, that anxiety like like
that's what I had, like I wasscared to like lay in bed and
worry if it was gonna be a badnight and it kept me up, it made
it harder to fall asleep and Iremember thinking like
(03:05):
everything under the sun, likeGod's punishing me I don't eat
my fruits and vegetables andwondering, like, how do I make
it better?
Do I need to eat differently?
And I think I've complainedabout it enough that my parents
would listen to me once in awhile about it and my mom would
take me to a doctor here andthere.
And I remember being onvacation once, like maybe down
(03:27):
in North Carolina, maybe theouter banks and I remember my
mom taking me to like a I don'tknow if it was like an urgent
care or for doctors down therehospital and complaining that I
was having stomach pain.
And I remember like they did anx-ray or something and they
never found anything on imagingand they always chalked
everything up to constipation,gas pain and I think one of
(03:50):
these places they even tried tofix it via giving me my first
enema as a child and even thatwas like I got to do what, like
we're in a doctor's office hereand stuff like that.
So like growing up constant,like constantly stomach problems
stop, constantly worried aboutit.
And it wasn't until, if youwant to fast forward, till my
(04:12):
senior year in high school.
I was having a different pain.
It was like an upper stomachpain and it was almost like
every day.
Sometimes it definitely seemedlike it was after I ate and
something else was going on atthe same time where my period
shut off and I neverspecifically mentioned that to
my mom because I was like thisis great, I don't want it back.
(04:34):
And it was like six months andof not having it.
And then I just remembersomething was very interesting.
Timing was, I think my dadswitched jobs and he got a new
plan and that plan with theirmedical coverage required or
wanted kids to get blood work orsomething.
And I'm thinking like my wholelife, like 17 years, I never got
blood work and now I have toget a needle in my arm and I was
(04:56):
freaked out about that.
And I remember getting some ofthat back and seeing
abnormalities on there like lowiron and other things, and so
you piece that together.
I was also coming home everynight from my senior year in
high school, tired.
I would come home.
I remember I would lay on thecouch, maybe get up for dinner,
(05:17):
lay down the rest of the night,and I remember there was like
frequent fevers.
So after so long of this goingon, I got to another point with
my mom where she's like allright, we're not waiting for a
doctor appointment, I'm justgoing to take you to the
emergency room.
Looking back now, like heck,yeah, like fevers every night
your child's sleeping, like Iwish it went sooner, but I guess
(05:37):
by time we went I went to the,a local hospital, and they did
their typical imaging and theblood work and they said you
have pancreatitis, your pancreasis enlarged.
Um, I believe the things thatyour pancreas secretes is
amylase and lipase.
And to measure what was beingsecreted, they were off the
(05:59):
charts, like if normal is under20, they were over a thousand,
like something like that crazy.
And they're like we can't treatyou here.
Would you like to go toPhiladelphia or the Hershey
Medical Center?
And so another thing I was likegreat, I'm another medical bill
for my parents and what's goingon with this now?
And I had to decide which one Igo to.
(06:19):
And I was like I'm not a cityperson, so I don't want to go to
Philadelphia, like send me toHershey.
So I went to Hershey and I wasthere.
I went, I think I went first tothe ICU, then eventually was in
the room.
I think I was there for about aweek, couldn't eat the whole
time to like calm down thepancreas and I remember them
using that term at the time idio, something meaning they
(06:39):
couldn't determine what all myproblems were from and they left
me with also perplexed on why Ididn't have my period.
So they're like thinkinginternal bleeding somewhere,
like period shuts down, tryingto save those nutrients for your
body that needs them.
Maybe I'm bleeding so, theysaid they.
They left me out with a scriptto get a colonoscopy, endoscopy.
So just another traumatic eventfor 17 year old had to go
(07:03):
schedule one of those preppingfor it One of the worst things
ever doesn't get easier Five, 10colonoscopies later.
So they did that and I rememberthe doctor said afterwards like
it looks like Crohn's and in myhead I just jumped on that
looks like like.
I felt like they did not sayspecifically it is.
(07:23):
It's almost like it was left mewondering like is it?
Or like am I going to getbetter?
I remember the first thing Iasked or was thinking was like
is this going to shorten my lifeexpectancy?
So as like a 17 year old?
That was my first thought andthen my second was probably just
being worried that I'm just amedically expensive child at
(07:44):
this point and feeling bad forthat.
So I got on at the timemesalamine, pentasa, and I was
on four pills at least twice aday, at least something like
that felt like a lot, maybe itwas eight pills, and then I
stayed on that.
I went to college.
Luckily, college was likemostly remission for me, so I
(08:04):
didn't have many issues there.
I think I was really leavinghigh school trying to follow
protocol, trying to eat a littlebetter, and then I had my next
flare that landed me in thehospital probably a few years
after college, when I wasactually working in career life,
(08:25):
and so that was a differentexperience, actually having to
call out of work to be in thehospital, and and then I think I
had like a good nine yearstretch without a
hospitalization until one of mylast two recent ones.
I had to like about two, one ortwo years apart.
So yeah, that's recent ones.
(08:46):
I had two like about two one ortwo years apart.
Speaker 1 (08:47):
So yeah, that's that's the journey of my Crohn's
disease.
Oh wow, that's a long time it's.
I mean it's remarkable to thinkthat that was going on for so
long and like no answers.
If you don't mind my askingwhat were the things that
exacerbated?
Like you know, you said you hada couple of flares.
Was there something like thathappened during those flares?
Was there anything associatedwith it?
Speaker 3 (09:06):
So I 100% believe stress will trigger a flare and
I don't know if there's proofbehind that or not, but I
actually had been living with aroommate who up and walked out
of our lease so I had to be puton the spot to find someone to
replace them.
They just left and I think allthe stress from that and dealing
(09:29):
with that roommate put me intothat flare.
So that was the onehospitalization.
And then the other thing that Ithink sends me there is I swear
there's something about gettingGI bugs that trigger flares for
me, and the last two were post,like kids were throwing up at
home from like school daycareand then I caught it and then it
(09:53):
was just a different kind ofpain and I'm like like I want
relief.
It like if you want to go tothe hospital, like you want to
get that morphine or theanti-nausea and you just want it
to stop that it's that bad.
And so those last two GI bugswere the other things that sent
me there.
Speaker 1 (10:11):
Gosh, let's all knock on wood that whatever GI
episode that's happening at yourhouse right now is not
something that you catch,because, yikes, that's got to be
anxiety producing too.
Like every time your kid issick, you end up potentially
needing to go to the hospital.
Speaker 3 (10:28):
Yikes.
Yeah, I think that's probablywhy I'm borderline actually
having a phobia about throwingup and a lot of people don't
understand why I avoid like theplague anyone with a GI bug and
I will not go to their house fora minimum of 14 days after.
I don't want them at my house.
I avoid it so much because Ithink for my body throwing up is
(10:50):
an ordeal Like sometimes Iliterally hyperventilate during
the process, like I.
I tried to describe to mydoctor what I was happening.
They're like I think you'rehyperventilating, like you're so
worked up about it that I feellike my hands locked up and I
was the breathing it was toomuch and I felt like tingly and
so now I try to concentrate onslower breathing so my body just
(11:14):
doesn't like it.
I it's a huge process to throwup.
So even luckily if my husband'saround, he knows to be on like
the throw up duty of the kids,just because it'll just trigger
anxiety even before symptomswould actually happen.
So yeah, I try to avoid it.
Speaker 1 (11:31):
Oh God, throwing up is so awful, but having that
type of visceral reaction to itis so different and immobilizing
, I think, in so many ways.
One of the things you wanted tochat about was talking about
work and how you were impact,how your Crohn's impacted your
work.
So do you mind giving us alittle download on that?
Speaker 3 (11:48):
I think really, the whole COVID 2020 brought out
work accommodations a lot forpeople and I never sought one.
But it's all that stuff inhindsight again of looking back,
what I dealt with to get towork and at work and not
realizing like I could haveasked for a medical
accommodation and then, by time,covid had brought medical
(12:12):
accommodations to light.
I actually, when COVID endedand they wanted to call people
back to the office, I sought outa medical accommodation for my
Crohn's at that point because Idid a lot of research on my own
on them and I'm going to don'tquote me because I'm just going
to paraphrase, summarize this aswhat I remember, and it's
already been a few years, butsomething to the effect of if it
(12:34):
doesn't cause your employer ahardship and it's not impactful
to the job, then they're legallyrequired to provide that
accommodation.
And I'm like, okay, during workfrom home COVID, I was promoted
.
I was doing some of my bestwork ever.
I got a bunch of certificationsonline with my job and my boss
(12:54):
at the time would have given meany good word that was needed
and he my current, my boss thenvery much supported the medical
accommodation, which is what Iwanted was just to work from
home because it alleviated somuch anxiety and anxiety
triggers so many symptoms.
So what I didn't realize isthat all that time that I was
(13:14):
commuting to work.
So some of the symptoms I havewith Crohn's is urgency and I
know that's very tightly aroundanxiety.
So I probably have a good 20minute commute to my previous
job and I was there for 17 yearswhen I and when I did leave.
So during that commute if I gotanxiety or if I got symptoms, I
(13:35):
would need a bathroom veryurgently, to the point I'd have
to stop up to three times indifferent bathrooms, gas
stations, just to get to work.
And I'm like no one knows thisat work.
No one knows what I wentthrough just to get to work.
And or I would also move up mytime and get to work very early
because of it.
(13:56):
No one knew that and it'sbecause going to work earlier
would allow me to miss a lot ofthe traffic.
I live in a congested area, sothen you get against the problem
of even then there could betraffic.
I live in a congested area, sothen you get against the problem
of even then there could betraffic.
And if I still need to go.
Now it's like our place is evenopen at six 30 in the morning
to run into and I've run intosome very shady bathrooms at gas
(14:17):
stations at six 30 in themorning and I'm like thinking
about it now with kids.
I'm like if I had a daughter Iwould not want them to have to
do that, going to work and likeI was a business casual, like
you might be wearing skirts,heels, glasses, going into a
bathroom in the dark at six 30in the morning, and I had to do
that daily, weekly, just to getto work.
And then at work I always hadthis anxiety about being in a
(14:40):
meeting and needing to use abathroom and it always.
I felt like I was always infight or flight and having to
worry about like, leave ameeting, I need a bathroom.
Everyone knows you're leavingor people know you went to the
bathroom, are they aware of howlong you're there, type of thing
.
And so I've worried about thatfor so long that by the time I
was home on COVID work from home, after a year of COVID work
(15:02):
from home, I had my first bloodwork ever since that high school
blood work.
That came back normal,everything in normal range for
the first time my even theinflammation, and I was like,
doesn't that tell you something?
That I didn't have all of thatanxiety, all of that pressure
dealing with all of thosesymptoms and all I needed was to
(15:23):
work from home and not havethat affect my health.
So at that time the currentboss was amazing about it and he
knew like I was probablyworking harder there than trying
to get to three bathrooms andget into the office and it was
very doable for my job with whatI actually did.
I really didn't work withpeople I sat with there.
I really worked with people inother countries and in other
(15:47):
buildings via teams meetings.
So work from home was great formy job.
So COVID ends, they want tobring everyone back to the
office.
And that's when I saw themedical combination I lost
multiple times with and I had togo through appealing it and
appealing it and I probablyreally pissed off my doctor
because I had to use him to keeprewriting his note.
(16:07):
They would say, well, yourdoctor didn't say you have to do
this, or, and I'd be like, letme go get him to say that
because like he was willing tohelp me get this and after
fighting for like six months.
I finally got one and it wasthree or six months later.
They want you to go through thehoops to renew it and I'm like
this is getting ridiculous.
Nothing's changed in three orsix months.
(16:29):
So every like six months I hadto like redo this process and I
think at some point I had aconversation with them and we
got it pushed out to a year atsome point.
And then fast forward, myemployer started really pushing
anyone with accommodations leftafter COVID to come back to the
office and I had to fight withHR about it.
(16:51):
And HR I remember the lady shewas awful.
Obviously they aren't reallyhuman resources, they're just
bulldogs for the company.
I said to her I said would youwant your daughter to have to go
through what I go through everyday to get to work?
And she's like, well, I wouldtell her to try.
And I was like, okay, what kindof mom are you?
So it's like they didn't careand regardless of my medical
(17:15):
accommodation, they were pushingme to come back.
And what they do when they wantto push someone out is then
they'll start giving you a badreview and then they'll find
ways to make you want to leave.
And in that sense I let themwin.
But on the flip side, I knewwhat I was leaving for and I was
(17:36):
leaving for my health and I wasleaving to start BeWell.
Speaker 1 (17:37):
It's very insidious, and I think that people you're
right, people kind of assumethat HR is there for you but HR
is there for the company.
And so I think that peopleyou're right, people kind of
assume that HR is there for youbut HR is there for the company,
and so I think that's sort ofnumber one.
And I do think there's amisunderstanding about medical
accommodations as well, becauseit doesn't, you know, if you
have a lifelong condition, ofcourse, like yeah, that thing,
things don't change for younecessarily, you know, but there
(17:58):
are.
I think that is one of thethings about these relapsing,
remitting kinds of diseases isthere are times where probably
you may need more accommodationsbecause of being in a flare or
whatever it is, and so there canbe times where maybe for some
people, getting to work orworking in an office is
perfectly fine for them.
It's just they need access to abathroom or whatever it is, or
that there are times whenthey're flaring, they need to be
(18:20):
working from home, and so Ithink, you know, I think that's
some of the issues is that themedical accommodation isn't like
well, you have carpal tunnel,so you need this type of
keyboard right.
So it's like there isn't thatdirect correlation.
It's like you have to actuallytry and be thoughtful about the
accommodation and that's notalways everybody's strong suit
perhaps in the accommodationsprocess.
Speaker 2 (18:40):
And even with SMLA it's a challenge.
My doctor, my gastro, has beenabsolutely lovely.
He's like you fill out whateveryou need and I will sign it.
But there there's so manyquestions about like, how many
days a month or a year would youanticipate this person being
out?
Well, one year it was sixmonths, you know, and one year I
had three hospitalizations andthen one year nothing.
It's, you know, impossible toestimate that stuff.
(19:00):
But yeah, hr wants that.
Speaker 1 (19:02):
And he's just like I'm going to, I'm going to aim
high and give you the benefit ofthe doubt, and he's like we're
going to do like two work days amonth and then, just just to
give me a little bit of wiggleroom, we are going to be having
an episode, so there's a womanwe had on the show Gosh
(19:27):
no-transcript so I am excitedfor people to be able to listen
to this to talk about, kind ofhear your story of this and then
hear from her about kind ofsome of the things you can ask
for, because certainly doesn'tsound like they handled this the
way it should be handled.
But I'm going to give you thecaveat that I am not an attorney
and so I cannot speak forlegally.
(19:49):
But it sounds like they werekind of not following the rules,
because the rules are that,yeah, you're supposed to be able
to say I have this chronicillness.
You're not even, you don't evenhave to disclose what the
chronic illness is.
You just need to say I have achronic illness that's protected
by the ADA and these are thetypes of accommodations I need.
And you're right, as long asit's not costing your employer
major.
You're asking them to installan elevator and that's going to
(20:15):
cost them $100,000.
It should be acceptedessentially, and especially
after working from home.
Clearly you showed you can doyour job.
That got real weird for so manypeople.
Speaker 2 (20:22):
I really love when people like have that moment
where they're like I have tostart advocating for myself.
That's a really importantmoment in our everybody's
journey and it sounds like youwere very on top of that and
just saying like no, just sayingno, is so hard for us as
patients.
We're just, you know, likeinitially, when you get that
diagnosis, you're like well,okay, and like to fight and ask
more questions and say this iswhat's working for me and this
(20:44):
actually improved my health, andfor them to deny it.
It sounds like you made thebest move for yourself and it
sounds like that wholeexperience kind of helped this
transition to Be Well happen.
Can you tell us a little bitabout how that came to life?
Speaker 3 (20:57):
Yeah.
So the start of Be Wellhappened while I was still at my
employer and I followed theprotocol there.
I had to let our company knowlike I'm starting something on
the side, and I think the onequestion was is it in the
financial space?
Because it was a I worked atfinancial company mutual funds
and they don't want you to be acompetitor.
They obviously don't want youto share information.
(21:17):
So I'm like no, it's retail,it's e-commerce, and they're
basically like I don't care andlike you can have, you're
allowed to do whatever you wantin your spare time have a second
job, whatever.
So I started BUL in well, Iguess it would have happened
after a February-ishhospitalization in 2022.
And that was after one of theGI bugs.
(21:37):
And when I was there in thehospital, I was freezing and I
rang the nurse bell to see if Icould get another blanket.
And when I was there in thehospital, I was freezing and I
rang the nurse bell to see if Icould get another blanket.
And when I rang it, I of coursedidn't expect someone to open
my door in 30 seconds, but itwas becoming over 15 minutes
later and it was kind of likeyou're already in a mental state
when you're in the hospital.
So something like that couldjust make you sad, hit you the
(21:59):
wrong way.
So I'm just like, yeah, I feelbad that I am not upset.
I wouldn't describe it as upset, but just wishing it wasn't
taking so long.
But it's post COVID at thispoint and you know there's like
a nursing shortage and you knowthat there's other people with
bigger problems going on in thehospital.
So it's not not like that.
But at the same time it's likewow, you don't know what I
(22:21):
wanted.
And so what if it was somethingworse?
Or what if by that time went byand I had needed help to go to
the bathroom and I had just wentin the bed, kind of thing.
So it's kind of like thatfrustration of like man, I just
wish there wasn't a nursingshortage.
Man, I wish it didn't take 15minutes for the nurse call bell.
And it was after that that thisidea of having something to wear
(22:41):
that had full sleeves becauseyou know the gowns are a little
bit more short sleeve came tomind.
Well, guess what?
The first thing I didn't thinkto do was to create them.
It was to Google them and belike should I buy one?
So I remember Googling about itand I don't try to pretend that
I was the first one out there.
(23:03):
So I always have this weirdfeeling of if you think of
something and it's a new idea toyou and you never heard about
it before, give yourself creditfor having an idea, like just
because someone else thoughtabout it and it's also out there
in the world, like I don't takethat credit away from myself.
So I had the idea, I Googled it,it existed and I saw two
options at the time.
One option was priced over $200.
(23:25):
And I was like that's not in mybudget.
And then one option wasprobably below 70, but I no
offense to either company.
I thought they were bothhideous and I was like I
wouldn't buy either.
Because one, the sleeves openedall the way up on the one that
was $200.
And they had these very likebold prints inside the sleeve
(23:47):
and I was like that's not mything and they look really weird
when they're flapping open likethat.
And then the other one usedreally chunky white zippers on
what looked like a gray gildedyou know Walmart kind of fabric
when you picture like a cheapsweatshirt, and it's probably
scratchy and not cozy.
So I guess you need a little bitof a backstory to my next
(24:09):
thought.
My next thought is like I cando this better, and the reason I
thought that is because myhusband has been, since I've
known him, like.
He's an entrepreneur, he has anentrepreneur spirit, he also
has a day job in the financespace, but since I've known him,
he's been trying to createproducts and have something take
off, like kind of the idea oflike one day to not work for the
man, one day to have his owncompany.
(24:31):
And his last brand ended uptaking off.
And now it's it's still just Istill call it a small business,
but they were just on Shark Tankand so there, if you've heard
of it, it's called BroGlo SelfTanner for the Boys, and feel
(24:53):
free to check out the websitebecause all the reviews are real
, they are not paid for, and Igo on there once in a while just
to look at them because they'rehilarious.
I can't believe how many guysshare pictures of body parts
that they tan with Brogloactually in their reviews.
So it's very funny.
So, of all things that he'sdone in the past to take off,
broglo took off, and it took offbecause of viral TikToks.
(25:16):
They started in 2020 and theyhad a case where they went viral
.
They sold out of like theirfirst 200, bought 400, sold out
of 400, bought 800 kind of thing, and then they just kept going
from there.
So in my head I was like I coulddo this.
This could be my new day job.
Let me work towards that.
And so in the hospital thenthat February, I sat there and
(25:40):
kind of designed and I was likeFebruary I sat there and kind of
designed and I was like myfirst first thought to it was
very siloed to my experiencesand I was like, all right, I
have this bucket in my car as myemergency bucket to use for the
bathroom.
And it was one of those emptiedout ice cream pails you know
from parties with trash bagslining it.
And I said, well, we got tomake that better, cause I put my
(26:02):
weight on it once and crackedit and like you can't just sit
on it, that rim would hurt toomuch.
So I started designing a bucket, I started looking for
manufacturers.
I was new, I was leaving thereon a restrict, a restrictive
diet again, and I'm alreadyprobably because of Crohn's, I
don't know, but I'm already apicky eater.
So I'm like when you alreadyhave to narrow down your already
(26:22):
narrow list of foods you eat.
I was like let me write, I'mgoing to go to the store from
here, make sure I have thethings I can eat, like white
bread, white rice, eggs,whatever.
And I was like you know, Igoogled some of the IBD type of
journals out there and I feltlike everything at that time
that I was looking at was eitherjust a generic symptom tracker
or some IBD specific ones,didn't get very specific in
(26:46):
certain details, like it didn'task if you had blood in your
stool, it didn't ask if you hadgas or bloating and those types
of symptoms.
So I sat there in the hospitaland designed a new IBD journal
for symptom tracking and I addedyour stool chart, but I also
added the times per day and Iadded the water you're drinking
and your sleep hours and I addedyour school chart.
But I also added the times perday and I added the water you're
drinking and your sleep hoursand I added your mood and I
(27:07):
added the gas, the bloating, theblood and all those things
related to IBD.
But personally, everything Iknow about medical is those are
important to anyone's health.
So in hindsight I wish I didnot call it an IBD journal.
I wish I had called it just thesymptom tracker.
But that was designed in thehospital.
And then I said how I would makeall these IV zip hoodies better
.
I would use a premium fabric.
(27:27):
I wouldn't put a big fat uglylogo on it like that one with
the white zippers.
I wouldn't want white zipperson my sleeve.
Why do I want to call attentionto having extra zippers in
funny places?
So I would make them discreetand color matched and have a
soft fabric and no funky, boldthings inside the sleeves.
And so I sat there, designedthat.
I also said, well, if I'm goingto have like a crone store,
(27:49):
what else would I want?
I'd really like I would want adiscreet pill holder because I
go to work.
I actually had pop top pills inmy desk drawer at work.
I'm like, but it'd be nice tojust have something sit on my
desk, easy access, but not belike, hey, I'm taking pills
every day.
So I designed a more discreetpill holder and I think those
are the main things that Iinitially designed.
(28:10):
And then I I didn't currentlyneed infusions, so it was more
about the hospital stay for me.
But obviously so many autoimmunediseases, cancers.
People are getting infusions, sothat's the very main big reason
people are purchasing them.
For me it wasn't the main bigreason, but for that I thought
it made sense to have like atote bag, because, whether it's
(28:31):
that hospital stay or infusionday, so the totes and the
blankets and I'm like, well,what's gonna make my stuff
special compared to any othertote or blanket that you have?
And it's the quotes that I puton my products.
I feel like that reallyresonate with people and that
you can do hard things oreverything else can wait or find
comfort in the little things,strengthen the journey.
(28:52):
That's where Be Well was born.
Be Well didn't have a name fora little while because I was
like I know I'm going to want mylogo on things, but what logo
is not going to be big and ugly,resonate with people that you
would actually want to wear itsomewhere on your item?
And it came to me because bewell is what my GI doctor says
(29:13):
to me every time we part ways.
He doesn't say goodbye, he saysbe well.
Speaker 2 (29:17):
Now is your GI going to want a percentage of sales
now because of that.
I going to want like apercentage of sales now because
of that.
Speaker 3 (29:25):
It's funny, because when I first told him about it I
thought he it was like a nicegesture, I thought he enjoyed it
.
I also feel like I get thatfeeling from him, like like he's
proud of me proud not daughter,but you know like a proud
proudness there.
So I did have at the timeearlier on in print, like I
(29:45):
called it like a marketing card,just like pictures of the
products, and there's aninfusion center at my GI office
and I was like would you letthese be in the infusion center?
And he did so.
Every time I go there I bring acouple more right.
I have to redesign them, butI've printed some of the old
ones out and brought them everytime I have an appointment.
And so I think he feels proudand that he's happy to see
(30:07):
everything I've done.
And it's nice to have thatsupport because I'm always
worried about him and or any GIdoctor for that fact, because
I've been avoiding therecommendation of biologics for
the longest time.
So I'm worried that one daythey're just going to drop me
and be like well, you don't wantto do what we recommend.
So I feel like I walk a fineline there.
Speaker 1 (30:29):
You started out with sort of these specific products?
Have you evolved your productline based on people's feedback
and people requesting it, or howhave you decided on what to add
to your store?
Speaker 3 (30:38):
Definitely take feedback.
One of the things that I'm soglad I started is I have this
VIP group on Facebook.
It's called Be Well VIPs andthe purpose of the group is to
have an engaged group of people.
Like if you're coming to joinit, like I expect that
participation you know notrequired, but that you want to
be here, you're coming to jointhis group and the purpose of
(31:00):
that group is to have a forumthat I'm not just blasting on
social media but a place to belike what do you guys think of
this?
Or, hey, let's do something fun.
You guys vote on the next colorIvy Zip Hoodie, or people
actually will shout outrecommendations there.
And one of the things that I didwell I should say I'm
implementing going forward isthe feedback from people in that
(31:23):
group said hey, we wish yourIvy crewnecks and your Ivy
multi-access had pockets.
And the multi-access didn'toriginally have pockets because
it was a pullover hoodie and thetwo big arch zippers go down
near like the center zip areaand it's not like you could add
that kangaroo pouch type pocket.
So we worked with themanufacturer and I'm going to do
(31:44):
like invisible kind of side ofpockets on the future multi-axis
designs and crew necks.
That's something that came outof that group.
Sometimes that group will feelreally strongly about something
like I'll put poles out there,and so it's really good to hear
what they want to see next.
Trying to think of an example,if they really push towards a
(32:05):
certain product.
I guess one place that socialmedia whether it was VIP group
or social media in generalhelped guide is going to be
launching in about two months.
I don't have the official nameyet, but I just for now call it
the MRI hoodie, a non-metalhoodie.
So the current hoodies havemetal in the zipper pools and
this hoodie string pools.
(32:25):
Not my need to need one for CATscans and MRIs and imaging
machines, but apparently otherpeople do them enough that they
wish they had it for those withthe IV access.
So we designed something thatis made out of Velcro and no
metal, just plastic on thestring pools, and we'll be
launching that soon.
So that was purely social mediafeedback and yeah, so VIP group
(32:50):
really helps get us to leavesome fun things for them.
Like I could easily pick whichcolor we do next, but it's also
fun letting a group decide, likewhat colors you want want to
see next and one of the thingsthat we'll be launching probably
probably still this spring isour.
The discreet one day pillholders that I talked about was
(33:10):
one of the first products we had.
We've had very pastel, neutralcolors and we're finally going
to add some brights and like.
For me, I like the idea of likea neutral one for like, my desk
at work, but I like the idea ofbrights for, like, if I'm
traveling for a day and just tohave something fun, to like open
your purse and have like abright colored pill holder.
(33:31):
So yeah, I think that's wherewe kind of blend what we're
hearing from comments of peoplebuying versus that VIP group and
social media and help guidewhat we add next.
Speaker 1 (33:42):
That is so fun.
I am curious, like as anentrepreneur, like how do you
start sourcing, like whereyou're going to get your hoodies
, like how do you even startwhen you're starting to like
build a business like this?
When you said you worked infinance, it doesn't seem like
this is something that you, likeyou just sort of you know, knew
where to start looking to startand companies to work with to
build design these, build them,build them, not design them.
(34:04):
You did this design.
Speaker 3 (34:05):
So I think, with my husband's initial knowledge of
having done it multiple times,because he did it with Brogo and
sourcing, and then he's had acouple other things before, like
one of the things that he hadbefore that was glass water
bottles, and so he sourced those, and funny is that I've always
had a design input on all thoseother products, so the design
(34:26):
part comes easy to me.
But honestly, google, like youjust can Google clothing
manufacturers and you can justyou research and say, like if
you're looking for a specificmanufacturer like clothing
apparel, you're gonnaspecifically Google for that,
but not just to find themanufacturer, but you're
Googling the research on whereis the best place to manufacture
(34:48):
these Like for clothing in theUnited States the best place is
probably LA for clothing, andnot that I wouldn't say I can
say this with certainty.
But I think even a lot of thematerials are still not sourced
in the US from making the cloththat you're using.
So there's probably no wayaround getting anything right
(35:11):
now with the currentinfrastructure completely made
in the US.
But I'm sure it's feasible.
It's probably more expensive,probably higher order quantities
to get a price that you need tobe reasonable.
But yeah, it's between hisprevious expertise with doing it
multiple times and then justGoogling and research, because
he never did clothing so andthen it was interviewing
(35:32):
manufacturers, like having phonecalls and emailing them and
asking questions, and it waskind of like who came back that
seemed the most responsive andsomeone that if I'm going to
work with them, that I can getahold of them, and I think that
was what helped us decide onreally who to go with.
Speaker 2 (35:49):
And I love the idea of just like whenever I go to
the hospital, I take my ownclothes.
I refuse to wear a gown, and soIVs are definitely an issue.
Because of this disease, I haveCrohn's you don't have any
control, and so I have somethingthat I have control over.
It's like what I'm going towear, and so like the idea of
the hoodie, making it that mucheasier to stay warm and not have
to depend on those blankets,and like they're lovely when
(36:10):
they come from the warmer, andthat lasts about four minutes,
and then you know, or if I sneakmy heating pad in in my bag,
but then they'll get mad aboutit.
So yes, just that.
Or I've had to go get the ironinfusions and the biologics and
stuff, but yes, to just havesome control over the situation,
whether it's what you'rewearing, and I love that.
It just adds to my arsenal ofwhat I have control over during
the stay.
(36:30):
So prepare for an order.
Speaker 3 (36:33):
Speaking of that, one of the things I've been trying
to design for like over a yearnow and I'm trying to make
myself go to the finish line for2025 is our Be Well version of
a hospital gown.
So I think I have a majority ofwhat I need.
I think it's just been a littlebit scared of pushing out the
first version but it not beingperfect, because there's so many
(36:54):
needs people have in thehospital that I'm not aware of,
so I probably really need to runit by someone that is more
familiar with that.
But like, for example, some ofthe things that I know from my
own experience that I want tochange is not the regular back
opening where you're holding itwalking down the halls, and for
me, I want longer sleeves sothat I can feel more warm.
(37:14):
I obviously do not want ascratchy thin fabric.
I have a prototype.
It's very phase one.
It was the guy trying to designit with Velcro and front
opening, back opening, armsopening with Velcro Didn't love
how the first one turned out.
I think it needs a little bitmore of a tailored look, not to
(37:35):
make you look like you'rewearing a box, you know, and so
I'm working on that and thenneeding to get the pockets right
.
So offline you want to talkabout anything you know about
that.
I'm trying to decide where thepockets need to be, because I
know people have those.
The heart monitors I'm notgoing to pronounce it right the
telemetry boxes, something likethat yeah, telebox, and then
(37:56):
you'll sound super like you'rein the telebox.
So I know people want to carryall these things that I'm not
familiar with and I just need toget pockets right and I know
like you could walk down thehall, maybe you want to have
your cell phone there.
So I want to make sure I gotthe pockets.
I got to try it out first too.
I want to make sure, like youcan lay on Velcro and it not be
like I know the Velcro won't betouching you, but if it makes a
(38:17):
little bit of a bump, is thatgoing to be uncomfortable?
So I'm still in design phasefor those.
Speaker 1 (38:22):
Well, and I'd be curious to what, like the
hospital says about that.
Like, cause I know you knowlike they all of the gowns are
laundered in a certain way andwhatever, whatever and like.
So it's like, would you getpushed back from the hospital?
Stacey, have you gotten pushedback in the hospital for not
wanting to wear the gowns andbringing your own stuff?
Speaker 2 (38:37):
No, Cause I think part of it was my age when I
decided, okay, I have to havesome control in this and I'm
don't want to wear the gowns,like you said, get up.
I'm usually there for anobstruction and they want you to
get up and walk around and yeah, I don't want my bum hanging
out.
And if I'm going to have to getup, you know I always take a
sports bra and usually tank topsso that they do have as much
access as they need.
They know, and I think alsojust with my age, and I'm a
(38:59):
grumpy old nurse and I'm likethis is how it's going to be and
I go in and I wear a sports brabecause there's no metal, so I
can get my CT scan done and likeI can go straight into my room
and then, you know, I can do abed bath on my own and get in.
You know, if they, if they, Iknow how to disconnect my IV.
I'm not an idiot.
But you know, if you let themknow, hey, I'm doing this, I'm
going to get myself cleaned upand I'll get reattached, it's
(39:20):
fine.
But yeah, I've had to wear theteleboxes and stuff, yeah, so
you do have to kind ofaccommodate, for, you know, the
extra stuff.
But yeah, I think the longersleeves is good and like maybe
just a slot to slide your phonein, maybe up here, where you
know it's a little higher, Idon't know.
But I love that idea of havingthe pockets and just, you know,
being able to move around alittle bit without your bum
hanging out.
Speaker 1 (39:40):
And it sounds like.
It sounds like Stacey wouldlike to be part of your VIP club
to be able to help you withthis.
Speaker 2 (39:45):
Frankly, yeah, and like is the thought to like
market it for the hospitals ormarket it to patients to take to
their hospital stays, or both.
Speaker 3 (39:55):
Yeah, I think initially it would be the
patients that know like I'mgoing to go in, I'm going to
have a bowel resection orwhatever it is.
Obviously it's for more than IBD.
So I know I was talking earlierlike it kind of started in that
silo of IBD but then all thepeople and all the autoimmune
diseases came together and I'mlike this is not IBD, this is
autoimmune, this is cancer, thisis chronic illness.
(40:16):
So it quickly morphed from myinitial silo of thinking about
Crohn's store to chronic illnessstore and making life easier
with chronic illness.
So I think it's for anyone thatthinks they know they're going
in for something long-term butat the same time, if, like,
obviously, if you're going infor two days, like why would we
not grab it too, If we have one,and then like, maybe it's in
(40:39):
the future, like we're still sosmall, I operate BeWell out of
my home.
So in the future, if we'retalking wholesale orders and
having any type of contracts inthe future with hospitals, like
sure, like maybe hospitals willbe a customer of the future.
We haven't done that yet, butdefinitely open to it as we grow
.
Speaker 2 (40:59):
And I wonder if, like children's hospitals, would be
super into it where, if you havespecial design, because I have
seen, I know I've seen a coupleof kids that have their own
gowns.
I have seen, I know I've seen acouple kids that have their own
gowns with you know, you knowif you're six and you've been in
the hospital, you know, twice ayear since you were three, then
you know they have their ownstuff.
So that, yeah, but I know thathospitals, children's hospitals,
do really good job ofaccommodating the kids in like
(41:21):
adult hospitals they don't care.
So but yeah, I would pack that,because I pack, just like you
know, the, the shorts with thebuilt in like unders, because
that is one thing I hate in thehospital is just being like out
there.
Speaker 1 (41:33):
You know, yeah, but now I may have a new custom made
gown with special pocket, soyou're working on a hospital
gown.
Are there other things thatyou're like plotting or other
business propositions you have?
Speaker 3 (41:46):
One thing that I was requested to make by a patient
is they have like a port pillow,a little pillow that sits on
their seatbelt and so that theirseatbelt doesn't rub their port
, and they're like, just likeyou did with the IVs of putty,
like you can make this betterand like obvious thing.
Number one again was like thefabric choice.
(42:08):
And this is a male using thispillow with like flowers and
bows, and I was like, yes, I cando that better.
And then I said, is there anyother problems functionally with
it?
And he's like, well, honestly,it's starting to fray my
seatbelt.
So he thinks it's becausethere's Velcro that holds it on
the seatbelt and the Velcro isjust plain Velcro and if you can
(42:30):
picture the feeling of Velcrowhen it's not sewn on fabric,
it's kind of sharp, has sharpedges.
So I think that's what could befraying the seatbelt, because
you get in your car, you'repulling it down to your port and
get out of your car You'repulling it up when the seatbelt
goes up.
So I said I should be able tofind a way to cover the edges of
Velcro by sewing fabric aroundthe actual Velcro that's around
(42:53):
it.
And then I also think thatmaybe if I have two straps
instead of one, that it's goingto share.
That like resistance a littlebit.
And then obviously a moreneutral fabric, like the first
thing that came to mind is likeblended in with your car, just
like my zippers don't callattention to it.
So I was like suede or likefaux leathers that are black,
tan, cream, gray, whatever, likecar interior colors or
(43:14):
something.
So I'm going to probably gothrough a prototype on that.
I just went through design anduse the feedback from that VIP
group on proceeding with.
It is the one thing I hate afterhospital stays and blood draws
and IVs is when they put tape onmy skin and my hairs and I
(43:34):
swear to God, sometimes rippingthat off hurts more than the IV
itself.
And I was like, okay, how can Ido that better?
Like, if I'm going to improvesomething, how do I do the tape
or the bandaid better?
And I was thinking like if Ijust had something that you can
wrap that puts a little pressureand blocks blood from getting
on your shirt, that's all I needto do.
(43:54):
So I just designed like it'sjust the band of terry cloth
fabric, so like think towelabsorbent material, a hundred
percent cotton, so no polyestersfor anything to be allergic to,
and then it has Velcro built inand then you can just now I
don't think it's the easiestthing to use single handed, but
there's someone that's takingyour IV out, there's someone
(44:16):
that's, you know, going to putthat tape on you, so you just
hand it to them instead and say,Can you use this instead of a
tape?
And they just wrap the bandaround that area, apply the
pressure by just how much theytighten the band and yeah.
So something very minor.
I'm going to probably startbeing able to launch those
(44:36):
probably this summer, and I'mjust starting in one color to
start.
They'll be black just to hideanything and just see what
people think about it.
And if people have feedback,then I can improve upon it for,
like the next order.
And then I mean it's not a bigdesign change, but we got
feedback from people on wantinga pullover option, that is, a
(44:57):
hoodie pullover Cause.
Right now we have our Ivy ziphoodies with the center zip and
we have crew necks, but theykind of wanted the hoodie
pullover with no centers.
I think it was like the youngercrowd that kind of wanted that
option and we're looking to doit in like a fabric that's very
comforting and between oursweatshirt Ivy's at putting
(45:18):
material not as thick as Sherpa,but like almost fuzzy like
Sherpa.
So we found some options thatwill make it different, besides
just being another pullover.
That's some of the things thatwe're thinking about right now,
besides just adding new colorsto current products.
Speaker 1 (45:35):
I love that.
Yeah, I think what people don'trealize too is like when you
get infusions, the medicine isat room temperature, not at body
temperature, and so that's notsomething people put together of
that.
Like you know, because it's atroom temperature, it's going to
feel cold once it's in you,because it's not your body
temperature, so you get coldbecause of it, and I don't think
people understand that.
(45:55):
You know, I certainly didn't.
Speaker 2 (45:57):
If you have one nugget of advice for the IBD
community, what would you liketo share?
Speaker 3 (46:03):
I would say prep for your symptoms, like, take what
you need with you.
And I'm going to go back to mecreating the urgency bucket.
Before I created the urgencybucket, before I had the ice
cream pail in my car, I hadpanic attacks in the car about
not making it to the bathroomwhen I needed one and my hands
got sweaty.
I was holding it as much as Icould.
(46:24):
One time I was in a limo withpeople when this happened and
had to have the limo getsomewhere for me to go and I was
panicking and I'm like, oh myGod, I'm going to go in my pants
with other people in this car.
I think at that point it wasprobably post finding out I had
Crohn's.
But there was not anassociation to why I was having
this like attack at this time.
And if I would have prepared,if I would have gotten those
(46:46):
anxiety meds from the doctor, ifI would have brought a change
of pants or underwear or hadtoilet paper or wipes in the car
or with me, I would haveprobably had less likely to have
a panic attack if I wasprepared for situations.
So for me I probably overpacknow.
Now I have an urgency bucket inevery car.
I don't travel even 10 minutesto the grocery store without it,
(47:08):
and so that's my very IBDspecific advice.
But like a higher level pieceof advice would be just you're
your greatest advocate.
Like from my story, I wasprobably gaslit for the first.
How many 15 years of my life to.
You have constipation, you havegas, but no one else is going
to show up for you.
Like you have to say no tosomething you're not comfortable
(47:30):
with.
You have to ask questions, youhave to ask why.
So just be your greatestadvocate, because it's not going
to be anybody else.
Speaker 1 (47:37):
That is all very, very good advice for sure,
amanda.
It has been such a pleasuregetting to hear your story and
hearing about the evolution ofBe Well, and if people are
interested in finding you, thelink is going to be in the show
notes, so I definitely want tolet people know you can go down
to the show notes and find BeWell, thank you.
Thank you so much for joiningus, amanda, thank you, stacey,
for being my co-host and fillingin for Robin, and thank you
(48:00):
everybody else for listening.
So cheers, guys, thank you.
Speaker 3 (48:07):
Hi, this is Amanda.
If you enjoyed this episode,please rate, review, subscribe
and share it with your friends.
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