I remember the very real moment of the before
diagnosis, the after diagnosis, and the acceptance
of diagnosis. So once I had gained weight again
and I was able to, you know, participate in my
hobbies that I loved, hang out with my friends.
Then I really started to love myostomy. I was
like, hey, I had been so sick for so long and
I had tolerated and accepted this kind of, you
know, symptomatic on and off pain. And now I'm
actually able to enjoy life more with myostomy.
This is Alicia, who got diagnosed with ulcerative
colitis at age 14 in Philadelphia, Pennsylvania.
She's the acting president of Girls With Guts,
an organization... that helps solve IBD problems
for women. Today, on the Colitis Unfiltered podcast,
Alicia is going to talk to me about her own IBD
journey and why awareness and advocacy is so
important in the space of inflammatory bowel
disease. My name is Frank Tabering, and Alicia,
welcome to the show. Thank you so much for having
me. I'm really excited to chat. So you don't
just live with IBD, you basically live and breathe.
IBD because you have your own, you know, colitis
journey, of course, but you're super active in
terms of advocacy, awareness with an amazing
organization called Girls for Guts. We'll get
to that in a moment. But first, I want to go
all the way back to the Alicia at 14 years old.
And let's start at the beginning, your first
symptoms. Tell me a little bit about how ulcerative
colitis started to manifest for you and then
also how it ultimately led to your diagnosis.
Absolutely. So I was symptomatic from birth.
I had some bleeding in infancy. And so my parents
were bringing me back and forth to the doctors
to try and figure out what was that about. So
they were trying different formulas. Eventually,
that kind of stopped. You know, I was calling
home from grade school with stomach aches every
single day. And, you know, the doctors were ruling
it out off as anxiety. She just doesn't want
to be at school. Meanwhile, I loved school. School
was like my safe haven. So I loved being there.
But yeah, I had stomach aches really early on,
a lot of issues with bleeding and constipation.
And it was kind of pushed aside for a really
long time. And ultimately, I wasn't diagnosed
until I was 14. And it was very abrupt and very
scary because the symptoms came on tenfold. I
mean, I, you know, at some point I was crawling
to the bathroom because I was so severely dehydrated
from all the diarrhea. And my primary doctor
said, said that I had a case of giardia. So I
was being treated for that with antibiotics.
And ultimately, surprise, it was actually IBD.
So yeah, my journey, you know, it kind of ebbed
and flowed. I had symptoms as a kid and then
was diagnosed as a teen. And yeah, when the symptoms
hit, I mean, within a couple of weeks, I was
hospitalized. And then, you know, they ran the
gambit of tests. It was all very scary. And then,
yeah, when the doctor came in and said, hey,
you have something called ulcerative colitis.
You know, at 14, I was like, is that cancer?
Am I going to die? I had no idea. It was traumatizing,
honestly. You mentioned crawling to the bathroom.
That sort of just hits me like a brick because
that, you know, it's a flashback 13 years ago.
I was in the exact same position and so many
days literally just crawling because that was
the only way to get from the couch to the bathroom,
right? To the toilet. So yeah, I can relate to
that one. So 14 is a very young age to be hit
with IBD. Tell me how you mentally but also physically
navigated the disease post -diagnosis once you
kind of knew what you had and what inflammatory
bowel disease was like. When I was diagnosed,
I went from diagnosis to very severe, you know,
I was having surgery within six months. I lost
my colon ultimately within six months due to
toxic megacolon, because by the time I was diagnosed
and being untreated for so long, it was so severe.
I mean, that was a blessing and a curse at the
same time. One, I was being given this lifelong
altering illness. But on the other hand, there
was, you know, an explanation for the symptoms
that I had been dealing with my entire life.
And there was treatment. And so, you know, It
was really a lot to manage physically. I was,
you know, home on TPN for about six months. I
had to start high school late. I did homeschooling
for the first six months of my diagnosis. And
yeah, I think for me physically, it was just
trying to get from the severity that it had been
to adjusting to that new normal and adjusting
to an ostomy. Back when I was 14, I did not want
to have an ostomy. I was like, what are the next
steps to get this thing off of my body? It really
impacted my, you know, my body image. I didn't
even want to go outside. I was afraid of it leaking
all the time and the smell and changing it. want
to look at the stoma. And I think so physically,
I think, you know, it was just day to day living
day to day and trying to navigate that mentally.
My dad was really, you know, really ahead of
the curve in terms of finding support for me.
He actually found a kid's forum online called
Dragon Pack IBD, which had a kid's forum. And
I connected with someone named Katie, who I'm
still in touch with today, 20 years later, who
also had IBD and an ostomy. And I. think having
someone to talk to at that age really empowered
me and allowed me to keep going because I at
least had someone else to commiserate with. So
I think she was a really good anchor during my
initial diagnosis. We always talk about support
being so important, but then when you're 14,
you know, your entire life, your world is completely
different from that of sort of an adult having
to deal with IBD. And finding somebody to connect
with, I mean, that was, I'm sure, honestly, that
was transformative for you and helped you as
opposed to potentially not having that source
of support and help. Now, you talked about a
new normal. You talked about not wanting a surgery
and who does. How did you eventually come to
accept this new normal and accept, you know,
living without a colon to... connect with your
body again to i guess fall in love with yourself
again how did you manage to reach that point
I remember the very real moment of the before
diagnosis, the after diagnosis, and the acceptance
of diagnosis. So once I had gained weight again
and I was able to, you know, participate in my
hobbies that I loved, hang out with my friends,
then I really started to love my ostomy. I was
like, hey, I had been so sick for so long and
I had tolerated and accepted this kind of, you
know, symptomatic on and off pain. And now I'm
actually able to enjoy life more with my ostomy.
And I had some great, very supportive friends
when I did start high school. I think that really
helped as well. They were very curious about
it. So each of those tiny nuggets of support
really built in some confidence for me and ultimately
helped bridge that gap from the initial trauma
of it all to that full acceptance of the ostomy.
And so fast forward to today, let's talk about
how you're feeling. Because for many many IBD
warriors surgery is not necessarily the end it's
not the cure right how is it looking for you
today what's your life like do you have any challenges
you know anything that you still wrestle with
yeah I mean so my journey has definitely ebbed
and flowed so I was originally diagnosed with
UC, and that first ostomy teleported me into
the J -Pouch series where I had so many chronic
issues with rectovaginal fistula. So I was having
back -to -back surgery, you know, during school
breaks to try and alleviate that, and ultimately
was re -diagnosed with Crohn's disease right
after I graduated college, which allowed me to
get onto treatment. So from my diagnosis to,
you know, 23 years old, I had been untreated,
allowing my disease. disease to sort of continue
to ravage my body. And after I was re -diagnosed
and that process of grieving again, a new diagnosis
and ultimately meaning there was no cure, I,
you know, started a biologic and felt after about
six months so much better. And yeah, so, I mean,
ultimately, I would say that my diagnosis. changed
the trajectory of my life, but in a good way.
It allowed me to become more empathetic, more
compassionate, more in touch with my surroundings
and the people around me, more aware of everything
around me as well, and the ability to enjoy the
small things. I didn't realize how much I missed
being outside and having the freedom to walk
around without thinking about a bathroom until
I ultimately had my permanent ostomy surgery.
So I think full circle from the ostomy that I
hated to this permanent ostomy that I love, it
has been quite a journey. And before we actually
move on to what you're doing today, so we have
the people with IBD who are rushed to the hospital.
And I don't know, you know, they wake up the
next day, their colon is gone. Then we have the
category of people who know that they'll have
to have surgery. They actually have time to prepare
physically, but also mentally. You said that
it was a very short period of six months, basically,
from your diagnosis to when you had your first
surgery. Tell me a little bit about, especially
as such a young adult, how did you manage that
mentally, you know, that path to surgery? And
especially before it happened, did you have time
to prepare for it, to sort of imagine what your
life would be like? Or was it rather abrupt and
you didn't really have any space to get ready
mentally for what was coming post -surgery? When
I was initially diagnosed, I was hospitalized
for two months just to try and get some weight
on. I had dropped about 60 pounds, which for
me, I... That impacted my ability to walk, my
muscles, everything. So I was ultimately hospitalized,
put on bowel rest, TPN, just to try and help
heal some of the internal damage that had been
done. And when they went to do a scope to see
if the bowel rest was helping. I woke up with
an ostomy. So I had zero time to mentally prepare.
It was basically worst case scenario. I woke
up a few days later after, you know, a medically
induced coma. They told me that my colon perforated
during the scope and you have an ostomy. My surgeon,
you know, she tried to be positive and she was
like, well, the good news is, you know. We have
the option of the J pouch down the line. Right
now, we're focused on getting you well again.
But I still, with the abruptness of it all, I
really struggled to get over some of those hurdles
that I think having more time to prepare would
have helped with. So all you've been through,
like for many of us, it led you to where you
are today. And not only from a health standpoint,
but also, you know, how you spend your time and,
you know. your advocacy, your awareness. You
are acting president of an organization called
Girls for Guts. And for someone hearing about
Girls with Guts for the first time, give me a
pitch. What is this? Girls with Guts is my absolute
heart and soul. It is an organization that changed
my life. And what I would say is that it's a
community. It's a safe place to land for people
who are newly diagnosed, maybe have been diagnosed
for several years, but don't have that support.
It's sister to sister, you know, sisterhood,
bonding. It's building people up. It's preparing
people for those surgeries ahead of time, talking
about our disease in a candid way so that, you
know, we can reduce some of the stigmas. And
ultimately, yeah, it's community. It's a movement.
What made you pick advocacy instead of maybe
just focusing on your recovery or on your own
personal IB journey? How did you get into being
so active? I always say that advocacy actually
picked me. I went to Syracuse for film and I
loved storytelling. I loved writing. I loved
creating, you know, small documentaries and things
on important matters. And for one of my classes,
we had a project that was tell the class something
they might not know about you just by looking
at you from the outside. And I said, huh, do
I share something, you know? you know, basic,
or do I tell everyone that I currently have an
ostomy and I have this chronic condition? And
I said, let me be bold. Let me create this project
around, you know, my ostomy. And so the whole
video like sort of painted the picture of my
diagnosis journey. And then at the end, I did
like a reveal of my ostomy. And that little clip.
Got a standing ovation in my class. They wanted
to see it again. I had people coming up to me
after that were like, my dad has Crohn's disease.
My sister has Crohn's disease. I've never seen
someone, you know, someone's ostomy. How are
you so confident in showing that off? And again,
it was it was hearing those stories that really
propelled me towards the thinking like. oh, this
kind of storytelling matters. Sharing your own
story really matters. And you can make an impact
by doing that. Absolutely. Absolutely. And eventually
it led you to Girls With Guts. So you kind of
told me a bit about what it is. Now, what specific
problems does this organization solve for women
with IBD? Some of the biggest hurdles and problems
that we try to solve are those body image and
societal, you know, dysmorphic things that people
place on women specifically. You have surgery,
you know, your body's covered in scars. There's
a lot of vulnerability in sharing that with other
people and, you know, feeling like yourself and
your skin again. We also focus on intimacy, motherhood,
sexuality, you know, navigating life transitions
and aging with IBD. which, you know, a lot of
people, we are the aging generation with IBD.
So trying to talk about those things that are
really important to our community. And tell me
a little bit about how this works with Girls
With Guts. Are you nationwide? And you don't
have to give me specific numbers, but still,
I'm curious to see what sort of a range you have
and how many people basically you help out and
support. And how does this translate, this concept
of Girls With Guts into action, really? Yeah,
so we have a very active private forum of about
10 ,000. And then from our social media pages
span between 21 ,000 to 24 ,000, depending where.
And so the way that we turn our mission into
action is through education, medically reviewed
information and education that we can share with
our community. Because sometimes understanding
that medical jargon is very hard for the lay
patient. So we want people to feel like they
are empowered with the tools. questions to ask
their doctors, especially as it relates to women's
issues. We also have a variety of other programming.
We have, you know, in -person retreats. We invite
60 to 70 women annually to join us at a different
location just to create that access across the
nationally. We do have some friends in Europe
as well and some Canadian friends that do travel
in to come to our retreats, which is really awesome.
And then, yeah, we have, you know, other programs.
One program our butt basket program. So we send
out these post -op care packs and infusion kits
to our community members who might need that
extra support during those. And yeah, we ultimately,
we try to bridge the gaps through in -person
programming and virtual programming as well.
So we could bring our community together. That's
really amazing. So for anybody who's listening
or is interested in sort of looking into this,
this is Girls With Guts. You have a strong online
presence, obviously, and the link is going to
be in the show notes as well. So Alicia, what
does a day look like for you as president of
Girls With Guts? So a day for me, I mean, it's
not just emails. It's a lot of strategy, you
know, community building, prepping and planning
out our retreats, our programming. It's checking
in on different volunteers, our board members,
making sure that we are all still unified in
the mission of the organization, talking to other
advocate friends, picking their brains on ways
we can collaborate and things like that. And
then, yeah, it's connecting with our partners,
our sponsors, you know, maintaining those relationships.
And with all that going on, do you actually still
have the time to really talk to the people that
are seeking help from you and your organization?
So that's one thing that I refuse to let go of
because that is just a personal piece for me
that I... I feel so strongly, you know, tied
to our mission and it affects me personally.
And so if, you know, we're at a retreat and there's
someone who just had ostomy surgery and needs
someone to talk to, I will sit down with them,
connect with them, share my tips and tricks.
Or if that's answering, you know, somebody's
post in the forum where they're seeking support,
I do try. And, you know, as much as my other
board members would like me to step back a little
bit so that I could focus on some of the other
things that we need to do. I still really like
to be as close to the community as possible.
I totally understand. And I think that's the
heart of the whole thing anyway, right? And you
cannot just step away from the heart of the whole
organization and its purpose. Now, how has Girls
With Guts evolved since you've taken on this
role? And looking ahead also, what's your vision
for this organization? When I started with the
organization back in 2013, I actually started
as the director of multimedia, so I was responsible
for getting our social media off the ground.
I remember when I had to get our Facebook page
set up as a business and it was like, you need
at least 100 likes to make it like an official
Facebook page. Not to age myself, but back in
the day when it was, you know, everything was
sort of newer and fresh. And I also did our retreat
recaps as well. But so we started with our first
retreat had 30 attendees. And that has tremendously
blown up to the, you know, the way that we actually
have two retreats now to support 100 women a
year. So we've expanded in that way. We've expanded
on social media and our educational outreach.
And we've also, you know. expanded in some of
our educational components as well so trying
to stay up to date with you know what's going
on how can we bring that to our community and
yeah it's it's been A shocking amount of growth,
not only with our organization, but with the
IBD community and advocacy space at large. One
thing that I'm very passionate about, and a lot
of organizations are already doing this well,
but for teen girls specifically, I would love
for us to eventually get into the teen programming
space, doing teen and caregiver retreats to build
up some of that empowerment that I learned early
on and gained early on and being able to give
that to the next generation. That's the direction
that you want Girls for Guts to take into, right?
I mean, I love that we support 18 and up women
with IBD and their ostomies for any reason. I
think there are some programming things that
we're bringing in in the next year to continue
to support that. But I do see us eventually getting
into that teen programming gap to help between
the teen to the adult transition. I think there's
still a big gap there, and I would love to be
able to figure out how to bridge that. And that
makes perfect sense because you personally have
a lot of experience in that specific category
and age range, right? So yeah, that makes complete
sense. So this all sounds amazing. This all sounds
positive, but there's no job without challenges.
And I'm just curious to see what your main challenges
are, especially running such an organization
in this particular space. I mean, obviously,
one of the biggest challenges for nonprofits
is funding. I feel like that's a constant hurdle
that we are trying to get over annually. And
it's also trying to find the balance and not
taking on. all of the emotional weight of the
stories so that we can remain a strong foundation
for our community. I think it can become very
easy to try and, you know, solve each individual
person's problem that's coming to us. But we
want to make sure that we are really, you know,
sustainable and can be around for a long time
to serve as that piece of support. Really, really
great. I want to take a very quick deep dive
into some of the issues that you help women with
in regards to IBD. So you mentioned body image,
you mentioned intimacy, you mentioned relationships.
So let's talk about these three very briefly.
How do you think surgeries, ostomies, scars impact
how women see themselves? Knowing my own personal
journey, there's a lot of grief that comes with,
you know, feeling like you're losing autonomy
of your body as it's changing with, you know,
surgical scars, weight loss, different things
like that. So I feel like that grief is very
real and it kind of ebbs and flows. One day you
may be feeling very confident in your body. One
day you might be wearing a pair of jeans that
don't quite fit over your ostomy and that, you
know, the wave of grief comes back again. I think
in our society. body image is just a huge disfigurement
to our community. And then when you layer chronic
illness and the fluctuations with that on top
of it, it can be really hard to navigate if you
don't have a sense of support that can help you
really lean in through that. So obviously, at
least over the last years, I could not say decade,
but at least the last years, the presence of
IBD IBD community advocacy awareness, especially
on social media, has really exploded, which is
really fantastic. And I still think to this day
that there are times where mental health is one
of those issues that are sort of kept a little
bit on the side or not talked about enough. Another
one that I kind of rarely see is intimacy. So
how often do you actually see women struggling
with intimacy and relationships because of the
IBD journey that they're going through? Oh my
gosh. I think I see a question in our private
forum probably every other day about this. It's
starting with dating. How do I tell someone?
When do I tell someone that I have this disease?
It's will I have an accident during sex? Will
my ostomy bag come off? Are there things that
I can wear to feel better in my skin? It's all
of those pieces and all of those layers and trying
to find a new way to have a relationship. with
your body, we hear it constantly. Still, you
know, things have really shifted over the years,
but, you know, intimacy and relationships, it's
a big one. It's still a very big one. It really
is. And if I go back 13 years in the year that
I was diagnosed, when I was... Still flaring,
actually. And I used to go on dates. The very
first one I went, I basically spilled everything
on the first date. And I don't think it went
very well because I think it was information
overload. So just very bluntly, when do I tell
someone about my IBD? I think it varies. I think
it varies on your comfortability level. In the
beginning of my journey, I would wait for, you
know, a few dates, see if things were really
going to take off. And then I would sort of slip
it in there like, hey, by the way, I have this
thing. You don't have to worry about it right
now. I'm in remission. But these things could
happen to when I started dating my girlfriend
in the last couple of years. I had all of the
information about myself. very publicly on my
social channels. So she could see it. It was
out there. There was no hiding it. And so I think
that that really helped to bridge the gap in
that conversation, you know, and she did her
own research. She was really incredible in that
way. And she wanted to see my ostomy and see
me do a bag change and very supportive. And I
think it really depends on your comfort level
and, you know, the way the readiness, the. in
sharing. I don't think there's anything wrong
with waiting. And I don't think there's anything
wrong with sharing it on the first date. If you're
just trying to rip the bandaid off, you know,
it takes some practice sometimes. Exactly. If
you're a risk taker, hey, just, you know, blow
it all out and put all the fish on the table,
right? Great. Now... How do you think IBD intersects
with things like, you know, dating, marriage,
and then also particularly wanting children?
And I mentioned the children part because just
today on TikTok or all places, somebody sent
me a message and said, hey, you know, a pregnancy
and ulcerative colitis, is that safe? What does
that look like? I think that, you know, obviously
there's a lot of changing data with pregnancy
and IBD. What medicines can you be on? Does surgery
impact that? And I think it's having that conversation
with your doctor. I think that's the best place
to start because your care team can really come
up with a personalized plan for you depending
on where you are in your journey. I have many
a friend who has had a very successful pregnancy
with IBD being on their medications and safely,
you know, having children. And then I know, you
know, a gambit of us who have had issues with
fertility. And I think it really is personal.
And ultimately, your care team is the best. place
to start with that. Shifting back to you, you've
had your IBD journey. You've had this girls with
guts journey. Now you've spoken to, I'm assuming
just hundreds and hundreds of people, you know,
dealing with IBD, mental health, physical challenges.
And I always say that IBD, like any other, you
know, serious disease. It changes you as a person
or it shapes you as a person as well. In your
case, you were 14 when you were diagnosed and
you already had symptoms before that. So in what
way has inflammatory bowel disease shaped the
Alicia that you are today? Like I said, I'm a
big storyteller. Got a typewriter when I was
like eight years old and I immediately was on
that thing writing stories. And so I think, one,
again, it has given me empathy and compassion
for all kinds of illnesses. I feel like I know
how to level with people who are really struggling.
It doesn't have to be IBD. And then that storytelling
element. I feel like I, having lived through
this, have a... very, you know, different lens
on life that other people might not have. And
I would say it's given me a unique perspective
on living because each day is not guaranteed
to be the same. I like to really skim Reddit
communities because on Reddit, you know, you
have actually a lot of activity, ostomy, subreddits,
colitis subreddits, Crohn's subreddits, and lots
of times. So that's sort of the starting point
for people who have just been diagnosed, right?
And then just today I saw a post for somebody
who said, you know, my life is over, question
mark, or I just got diagnosed, now what? If for
somebody who just got told that they have colitis
or Crohn's, somebody who's overwhelmed a bit,
what would your first words of advice be? It
would be that you are not alone. There are hundreds
of thousands of us out here. There are niche
communities for each person. And it's okay to
grieve. It's okay to grieve. It's a lot to process.
You know, it does change your life in a variety
of ways. And then the last piece of advice I
would give is to find one person that you can
talk to candidly about the disease. That takes
off a huge burden and mental load for you. And
I think ultimately for me, having had Katie back
in the day, that changed the trajectory of my
entire journey without having had that connection.
I'm not sure that I would feel as empowered or
as confident or able to talk about my experience
as I would have otherwise. So then what's one
thing that you wish every person with IBD understood
earlier? For me personally, I think one thing
that I wish I understood earlier is that IBD
is lifelong, so you have to learn how to befriend
it. Because when I was diagnosed, my priority
was how do I get rid of it? How do I hide it?
How do I minimize it? How do I get rid of this?
What can I take that just erases it from my life?
And then I quickly realized, no, it was here
to stay, and it's better to befriend it, figure
out what works for you, figure out the adjustments
that you need to make. It's better to find ways
to work with it than just pretend that it doesn't
exist. I think that that will impact your mental
health. That will make you feel more isolated
as well. And yeah, I think for me, befriending
it was ultimately, you know, what made the most
sense and has been the best for my journey. So
looking into the future, do you think that we'll
see an IBD cure in our lifetime? I would love
to say yes, I really would. And so many things
have changed in the last 20 years, but I'm not
sure. I mean, I will say I hope so. Fingers crossed.
But if nothing else, the support has changed.
The medication landscape has changed. I think
that there is a great chance and a better chance
of success and remission for patients that are
newly diagnosed now with the treatments and support
that's out there. So fingers crossed that we
do have a treatment in our lifetime. But if not,
I think, you know, being diagnosed now versus
20 years ago, you're in a much better place.
And even if it might take a little bit longer
to get to that point, like you just mentioned,
though, the support, the community, basically
Wilkhart has really grown and Girls With Guts
is certainly doing its part. You are certainly
doing its part. So keep doing that. I think you're
not just helping people. I'm pretty convinced
that you're actually changing a lot of people's
lives as well. And that's really great. So Alicia,
thank you so much for speaking to me today and
for also sharing. your world, your journey, and
what you do with Girls With Guts. I wish you
nothing but the best moving forward. And like
I just mentioned, keep doing what you're doing,
because even if you just help one person, that's
a massive success already. Yeah, thank you so
much for having me. It's been a pleasure. Thanks.
That's it for today's episode of Colitis Unfiltered.
I'm Frank Klabring, and if this hit home or hit
your gut, do us a favor, subscribe to the show,
And follow us at Kaleidos Unfiltered on YouTube,
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We'll see you soon for more inspiring stories
from the bathroom floor.