Latest / Crohn's & Colitis Unfiltered / IBD, an ostomy and a new purpose: Alicia's path to advocacy

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IBD, an ostomy and a new purpose: Alicia's path to advocacy · Crohn's & Colitis Unfiltered

0:01
I remember the very real moment of the before
0:05
diagnosis, the after diagnosis, and the acceptance
0:08
of diagnosis. So once I had gained weight again
0:12
and I was able to, you know, participate in my
0:14
hobbies that I loved, hang out with my friends.
0:17
Then I really started to love myostomy. I was
0:20
like, hey, I had been so sick for so long and
0:23
I had tolerated and accepted this kind of, you
0:27
know, symptomatic on and off pain. And now I'm
0:31
actually able to enjoy life more with myostomy.
0:34
This is Alicia, who got diagnosed with ulcerative
0:37
colitis at age 14 in Philadelphia, Pennsylvania.
0:42
She's the acting president of Girls With Guts,
0:45
an organization... that helps solve IBD problems
0:49
for women. Today, on the Colitis Unfiltered podcast,
0:53
Alicia is going to talk to me about her own IBD
0:56
journey and why awareness and advocacy is so
0:59
important in the space of inflammatory bowel
1:02
disease. My name is Frank Tabering, and Alicia,
1:06
welcome to the show. Thank you so much for having
1:08
me. I'm really excited to chat. So you don't
1:12
just live with IBD, you basically live and breathe.
1:16
IBD because you have your own, you know, colitis
1:20
journey, of course, but you're super active in
1:22
terms of advocacy, awareness with an amazing
1:26
organization called Girls for Guts. We'll get
1:28
to that in a moment. But first, I want to go
1:30
all the way back to the Alicia at 14 years old.
1:34
And let's start at the beginning, your first
1:37
symptoms. Tell me a little bit about how ulcerative
1:40
colitis started to manifest for you and then
1:43
also how it ultimately led to your diagnosis.
1:46
Absolutely. So I was symptomatic from birth.
1:50
I had some bleeding in infancy. And so my parents
1:53
were bringing me back and forth to the doctors
1:54
to try and figure out what was that about. So
1:57
they were trying different formulas. Eventually,
1:59
that kind of stopped. You know, I was calling
2:02
home from grade school with stomach aches every
2:05
single day. And, you know, the doctors were ruling
2:08
it out off as anxiety. She just doesn't want
2:11
to be at school. Meanwhile, I loved school. School
2:13
was like my safe haven. So I loved being there.
2:16
But yeah, I had stomach aches really early on,
2:18
a lot of issues with bleeding and constipation.
2:21
And it was kind of pushed aside for a really
2:23
long time. And ultimately, I wasn't diagnosed
2:25
until I was 14. And it was very abrupt and very
2:28
scary because the symptoms came on tenfold. I
2:32
mean, I, you know, at some point I was crawling
2:35
to the bathroom because I was so severely dehydrated
2:38
from all the diarrhea. And my primary doctor
2:42
said, said that I had a case of giardia. So I
2:45
was being treated for that with antibiotics.
2:48
And ultimately, surprise, it was actually IBD.
2:52
So yeah, my journey, you know, it kind of ebbed
2:55
and flowed. I had symptoms as a kid and then
2:57
was diagnosed as a teen. And yeah, when the symptoms
3:00
hit, I mean, within a couple of weeks, I was
3:03
hospitalized. And then, you know, they ran the
3:06
gambit of tests. It was all very scary. And then,
3:09
yeah, when the doctor came in and said, hey,
3:11
you have something called ulcerative colitis.
3:14
You know, at 14, I was like, is that cancer?
3:17
Am I going to die? I had no idea. It was traumatizing,
3:20
honestly. You mentioned crawling to the bathroom.
3:23
That sort of just hits me like a brick because
3:26
that, you know, it's a flashback 13 years ago.
3:29
I was in the exact same position and so many
3:32
days literally just crawling because that was
3:34
the only way to get from the couch to the bathroom,
3:37
right? To the toilet. So yeah, I can relate to
3:39
that one. So 14 is a very young age to be hit
3:44
with IBD. Tell me how you mentally but also physically
3:49
navigated the disease post -diagnosis once you
3:53
kind of knew what you had and what inflammatory
3:57
bowel disease was like. When I was diagnosed,
3:59
I went from diagnosis to very severe, you know,
4:03
I was having surgery within six months. I lost
4:05
my colon ultimately within six months due to
4:07
toxic megacolon, because by the time I was diagnosed
4:10
and being untreated for so long, it was so severe.
4:12
I mean, that was a blessing and a curse at the
4:15
same time. One, I was being given this lifelong
4:17
altering illness. But on the other hand, there
4:20
was, you know, an explanation for the symptoms
4:23
that I had been dealing with my entire life.
4:25
And there was treatment. And so, you know, It
4:28
was really a lot to manage physically. I was,
4:31
you know, home on TPN for about six months. I
4:34
had to start high school late. I did homeschooling
4:36
for the first six months of my diagnosis. And
4:39
yeah, I think for me physically, it was just
4:41
trying to get from the severity that it had been
4:44
to adjusting to that new normal and adjusting
4:47
to an ostomy. Back when I was 14, I did not want
4:51
to have an ostomy. I was like, what are the next
4:53
steps to get this thing off of my body? It really
4:56
impacted my, you know, my body image. I didn't
4:59
even want to go outside. I was afraid of it leaking
5:01
all the time and the smell and changing it. want
5:05
to look at the stoma. And I think so physically,
5:07
I think, you know, it was just day to day living
5:10
day to day and trying to navigate that mentally.
5:13
My dad was really, you know, really ahead of
5:16
the curve in terms of finding support for me.
5:19
He actually found a kid's forum online called
5:23
Dragon Pack IBD, which had a kid's forum. And
5:26
I connected with someone named Katie, who I'm
5:28
still in touch with today, 20 years later, who
5:31
also had IBD and an ostomy. And I. think having
5:35
someone to talk to at that age really empowered
5:38
me and allowed me to keep going because I at
5:41
least had someone else to commiserate with. So
5:44
I think she was a really good anchor during my
5:47
initial diagnosis. We always talk about support
5:50
being so important, but then when you're 14,
5:52
you know, your entire life, your world is completely
5:54
different from that of sort of an adult having
5:57
to deal with IBD. And finding somebody to connect
6:00
with, I mean, that was, I'm sure, honestly, that
6:03
was transformative for you and helped you as
6:06
opposed to potentially not having that source
6:08
of support and help. Now, you talked about a
6:13
new normal. You talked about not wanting a surgery
6:17
and who does. How did you eventually come to
6:20
accept this new normal and accept, you know,
6:24
living without a colon to... connect with your
6:28
body again to i guess fall in love with yourself
6:31
again how did you manage to reach that point
6:34
I remember the very real moment of the before
6:37
diagnosis, the after diagnosis, and the acceptance
6:41
of diagnosis. So once I had gained weight again
6:44
and I was able to, you know, participate in my
6:47
hobbies that I loved, hang out with my friends,
6:49
then I really started to love my ostomy. I was
6:52
like, hey, I had been so sick for so long and
6:56
I had tolerated and accepted this kind of, you
6:59
know, symptomatic on and off pain. And now I'm
7:03
actually able to enjoy life more with my ostomy.
7:06
And I had some great, very supportive friends
7:09
when I did start high school. I think that really
7:11
helped as well. They were very curious about
7:13
it. So each of those tiny nuggets of support
7:16
really built in some confidence for me and ultimately
7:20
helped bridge that gap from the initial trauma
7:23
of it all to that full acceptance of the ostomy.
7:28
And so fast forward to today, let's talk about
7:32
how you're feeling. Because for many many IBD
7:34
warriors surgery is not necessarily the end it's
7:37
not the cure right how is it looking for you
7:40
today what's your life like do you have any challenges
7:44
you know anything that you still wrestle with
7:46
yeah I mean so my journey has definitely ebbed
7:51
and flowed so I was originally diagnosed with
7:54
UC, and that first ostomy teleported me into
7:57
the J -Pouch series where I had so many chronic
8:01
issues with rectovaginal fistula. So I was having
8:03
back -to -back surgery, you know, during school
8:06
breaks to try and alleviate that, and ultimately
8:09
was re -diagnosed with Crohn's disease right
8:12
after I graduated college, which allowed me to
8:14
get onto treatment. So from my diagnosis to,
8:17
you know, 23 years old, I had been untreated,
8:21
allowing my disease. disease to sort of continue
8:23
to ravage my body. And after I was re -diagnosed
8:26
and that process of grieving again, a new diagnosis
8:29
and ultimately meaning there was no cure, I,
8:33
you know, started a biologic and felt after about
8:36
six months so much better. And yeah, so, I mean,
8:40
ultimately, I would say that my diagnosis. changed
8:46
the trajectory of my life, but in a good way.
8:49
It allowed me to become more empathetic, more
8:52
compassionate, more in touch with my surroundings
8:55
and the people around me, more aware of everything
8:58
around me as well, and the ability to enjoy the
9:02
small things. I didn't realize how much I missed
9:05
being outside and having the freedom to walk
9:08
around without thinking about a bathroom until
9:10
I ultimately had my permanent ostomy surgery.
9:14
So I think full circle from the ostomy that I
9:18
hated to this permanent ostomy that I love, it
9:21
has been quite a journey. And before we actually
9:24
move on to what you're doing today, so we have
9:29
the people with IBD who are rushed to the hospital.
9:33
And I don't know, you know, they wake up the
9:35
next day, their colon is gone. Then we have the
9:37
category of people who know that they'll have
9:39
to have surgery. They actually have time to prepare
9:41
physically, but also mentally. You said that
9:44
it was a very short period of six months, basically,
9:47
from your diagnosis to when you had your first
9:48
surgery. Tell me a little bit about, especially
9:51
as such a young adult, how did you manage that
9:55
mentally, you know, that path to surgery? And
9:59
especially before it happened, did you have time
10:02
to prepare for it, to sort of imagine what your
10:05
life would be like? Or was it rather abrupt and
10:09
you didn't really have any space to get ready
10:13
mentally for what was coming post -surgery? When
10:17
I was initially diagnosed, I was hospitalized
10:19
for two months just to try and get some weight
10:22
on. I had dropped about 60 pounds, which for
10:24
me, I... That impacted my ability to walk, my
10:27
muscles, everything. So I was ultimately hospitalized,
10:30
put on bowel rest, TPN, just to try and help
10:35
heal some of the internal damage that had been
10:39
done. And when they went to do a scope to see
10:41
if the bowel rest was helping. I woke up with
10:45
an ostomy. So I had zero time to mentally prepare.
10:50
It was basically worst case scenario. I woke
10:52
up a few days later after, you know, a medically
10:54
induced coma. They told me that my colon perforated
10:57
during the scope and you have an ostomy. My surgeon,
11:01
you know, she tried to be positive and she was
11:03
like, well, the good news is, you know. We have
11:06
the option of the J pouch down the line. Right
11:09
now, we're focused on getting you well again.
11:12
But I still, with the abruptness of it all, I
11:14
really struggled to get over some of those hurdles
11:18
that I think having more time to prepare would
11:20
have helped with. So all you've been through,
11:23
like for many of us, it led you to where you
11:27
are today. And not only from a health standpoint,
11:31
but also, you know, how you spend your time and,
11:35
you know. your advocacy, your awareness. You
11:38
are acting president of an organization called
11:41
Girls for Guts. And for someone hearing about
11:44
Girls with Guts for the first time, give me a
11:48
pitch. What is this? Girls with Guts is my absolute
11:51
heart and soul. It is an organization that changed
11:54
my life. And what I would say is that it's a
11:57
community. It's a safe place to land for people
12:00
who are newly diagnosed, maybe have been diagnosed
12:03
for several years, but don't have that support.
12:06
It's sister to sister, you know, sisterhood,
12:08
bonding. It's building people up. It's preparing
12:11
people for those surgeries ahead of time, talking
12:15
about our disease in a candid way so that, you
12:17
know, we can reduce some of the stigmas. And
12:20
ultimately, yeah, it's community. It's a movement.
12:23
What made you pick advocacy instead of maybe
12:27
just focusing on your recovery or on your own
12:32
personal IB journey? How did you get into being
12:35
so active? I always say that advocacy actually
12:38
picked me. I went to Syracuse for film and I
12:44
loved storytelling. I loved writing. I loved
12:47
creating, you know, small documentaries and things
12:51
on important matters. And for one of my classes,
12:53
we had a project that was tell the class something
12:56
they might not know about you just by looking
12:59
at you from the outside. And I said, huh, do
13:02
I share something, you know? you know, basic,
13:06
or do I tell everyone that I currently have an
13:08
ostomy and I have this chronic condition? And
13:11
I said, let me be bold. Let me create this project
13:15
around, you know, my ostomy. And so the whole
13:18
video like sort of painted the picture of my
13:21
diagnosis journey. And then at the end, I did
13:23
like a reveal of my ostomy. And that little clip.
13:28
Got a standing ovation in my class. They wanted
13:31
to see it again. I had people coming up to me
13:33
after that were like, my dad has Crohn's disease.
13:36
My sister has Crohn's disease. I've never seen
13:39
someone, you know, someone's ostomy. How are
13:42
you so confident in showing that off? And again,
13:46
it was it was hearing those stories that really
13:48
propelled me towards the thinking like. oh, this
13:52
kind of storytelling matters. Sharing your own
13:55
story really matters. And you can make an impact
13:59
by doing that. Absolutely. Absolutely. And eventually
14:02
it led you to Girls With Guts. So you kind of
14:06
told me a bit about what it is. Now, what specific
14:11
problems does this organization solve for women
14:15
with IBD? Some of the biggest hurdles and problems
14:19
that we try to solve are those body image and
14:22
societal, you know, dysmorphic things that people
14:26
place on women specifically. You have surgery,
14:29
you know, your body's covered in scars. There's
14:32
a lot of vulnerability in sharing that with other
14:35
people and, you know, feeling like yourself and
14:38
your skin again. We also focus on intimacy, motherhood,
14:41
sexuality, you know, navigating life transitions
14:44
and aging with IBD. which, you know, a lot of
14:47
people, we are the aging generation with IBD.
14:50
So trying to talk about those things that are
14:53
really important to our community. And tell me
14:56
a little bit about how this works with Girls
14:58
With Guts. Are you nationwide? And you don't
15:02
have to give me specific numbers, but still,
15:04
I'm curious to see what sort of a range you have
15:08
and how many people basically you help out and
15:12
support. And how does this translate, this concept
15:16
of Girls With Guts into action, really? Yeah,
15:19
so we have a very active private forum of about
15:22
10 ,000. And then from our social media pages
15:26
span between 21 ,000 to 24 ,000, depending where.
15:29
And so the way that we turn our mission into
15:33
action is through education, medically reviewed
15:36
information and education that we can share with
15:38
our community. Because sometimes understanding
15:40
that medical jargon is very hard for the lay
15:44
patient. So we want people to feel like they
15:47
are empowered with the tools. questions to ask
15:49
their doctors, especially as it relates to women's
15:52
issues. We also have a variety of other programming.
15:55
We have, you know, in -person retreats. We invite
15:58
60 to 70 women annually to join us at a different
16:02
location just to create that access across the
16:05
nationally. We do have some friends in Europe
16:08
as well and some Canadian friends that do travel
16:10
in to come to our retreats, which is really awesome.
16:13
And then, yeah, we have, you know, other programs.
16:16
One program our butt basket program. So we send
16:19
out these post -op care packs and infusion kits
16:22
to our community members who might need that
16:25
extra support during those. And yeah, we ultimately,
16:28
we try to bridge the gaps through in -person
16:31
programming and virtual programming as well.
16:33
So we could bring our community together. That's
16:35
really amazing. So for anybody who's listening
16:37
or is interested in sort of looking into this,
16:39
this is Girls With Guts. You have a strong online
16:41
presence, obviously, and the link is going to
16:43
be in the show notes as well. So Alicia, what
16:45
does a day look like for you as president of
16:49
Girls With Guts? So a day for me, I mean, it's
16:53
not just emails. It's a lot of strategy, you
16:56
know, community building, prepping and planning
16:58
out our retreats, our programming. It's checking
17:01
in on different volunteers, our board members,
17:03
making sure that we are all still unified in
17:06
the mission of the organization, talking to other
17:09
advocate friends, picking their brains on ways
17:12
we can collaborate and things like that. And
17:14
then, yeah, it's connecting with our partners,
17:16
our sponsors, you know, maintaining those relationships.
17:20
And with all that going on, do you actually still
17:22
have the time to really talk to the people that
17:26
are seeking help from you and your organization?
17:30
So that's one thing that I refuse to let go of
17:33
because that is just a personal piece for me
17:36
that I... I feel so strongly, you know, tied
17:39
to our mission and it affects me personally.
17:41
And so if, you know, we're at a retreat and there's
17:44
someone who just had ostomy surgery and needs
17:47
someone to talk to, I will sit down with them,
17:50
connect with them, share my tips and tricks.
17:52
Or if that's answering, you know, somebody's
17:54
post in the forum where they're seeking support,
17:56
I do try. And, you know, as much as my other
18:00
board members would like me to step back a little
18:02
bit so that I could focus on some of the other
18:05
things that we need to do. I still really like
18:07
to be as close to the community as possible.
18:10
I totally understand. And I think that's the
18:14
heart of the whole thing anyway, right? And you
18:17
cannot just step away from the heart of the whole
18:18
organization and its purpose. Now, how has Girls
18:23
With Guts evolved since you've taken on this
18:26
role? And looking ahead also, what's your vision
18:29
for this organization? When I started with the
18:31
organization back in 2013, I actually started
18:34
as the director of multimedia, so I was responsible
18:37
for getting our social media off the ground.
18:39
I remember when I had to get our Facebook page
18:41
set up as a business and it was like, you need
18:43
at least 100 likes to make it like an official
18:46
Facebook page. Not to age myself, but back in
18:50
the day when it was, you know, everything was
18:52
sort of newer and fresh. And I also did our retreat
18:55
recaps as well. But so we started with our first
18:59
retreat had 30 attendees. And that has tremendously
19:02
blown up to the, you know, the way that we actually
19:06
have two retreats now to support 100 women a
19:09
year. So we've expanded in that way. We've expanded
19:12
on social media and our educational outreach.
19:15
And we've also, you know. expanded in some of
19:18
our educational components as well so trying
19:21
to stay up to date with you know what's going
19:23
on how can we bring that to our community and
19:26
yeah it's it's been A shocking amount of growth,
19:31
not only with our organization, but with the
19:33
IBD community and advocacy space at large. One
19:37
thing that I'm very passionate about, and a lot
19:39
of organizations are already doing this well,
19:41
but for teen girls specifically, I would love
19:43
for us to eventually get into the teen programming
19:46
space, doing teen and caregiver retreats to build
19:51
up some of that empowerment that I learned early
19:53
on and gained early on and being able to give
19:56
that to the next generation. That's the direction
19:59
that you want Girls for Guts to take into, right?
20:03
I mean, I love that we support 18 and up women
20:06
with IBD and their ostomies for any reason. I
20:09
think there are some programming things that
20:11
we're bringing in in the next year to continue
20:13
to support that. But I do see us eventually getting
20:17
into that teen programming gap to help between
20:20
the teen to the adult transition. I think there's
20:24
still a big gap there, and I would love to be
20:26
able to figure out how to bridge that. And that
20:28
makes perfect sense because you personally have
20:29
a lot of experience in that specific category
20:32
and age range, right? So yeah, that makes complete
20:34
sense. So this all sounds amazing. This all sounds
20:37
positive, but there's no job without challenges.
20:40
And I'm just curious to see what your main challenges
20:46
are, especially running such an organization
20:49
in this particular space. I mean, obviously,
20:53
one of the biggest challenges for nonprofits
20:55
is funding. I feel like that's a constant hurdle
20:58
that we are trying to get over annually. And
21:02
it's also trying to find the balance and not
21:05
taking on. all of the emotional weight of the
21:08
stories so that we can remain a strong foundation
21:12
for our community. I think it can become very
21:15
easy to try and, you know, solve each individual
21:19
person's problem that's coming to us. But we
21:22
want to make sure that we are really, you know,
21:23
sustainable and can be around for a long time
21:26
to serve as that piece of support. Really, really
21:30
great. I want to take a very quick deep dive
21:34
into some of the issues that you help women with
21:38
in regards to IBD. So you mentioned body image,
21:41
you mentioned intimacy, you mentioned relationships.
21:44
So let's talk about these three very briefly.
21:47
How do you think surgeries, ostomies, scars impact
21:52
how women see themselves? Knowing my own personal
21:56
journey, there's a lot of grief that comes with,
21:59
you know, feeling like you're losing autonomy
22:01
of your body as it's changing with, you know,
22:04
surgical scars, weight loss, different things
22:07
like that. So I feel like that grief is very
22:10
real and it kind of ebbs and flows. One day you
22:13
may be feeling very confident in your body. One
22:16
day you might be wearing a pair of jeans that
22:18
don't quite fit over your ostomy and that, you
22:20
know, the wave of grief comes back again. I think
22:23
in our society. body image is just a huge disfigurement
22:27
to our community. And then when you layer chronic
22:30
illness and the fluctuations with that on top
22:32
of it, it can be really hard to navigate if you
22:35
don't have a sense of support that can help you
22:38
really lean in through that. So obviously, at
22:44
least over the last years, I could not say decade,
22:47
but at least the last years, the presence of
22:50
IBD IBD community advocacy awareness, especially
22:54
on social media, has really exploded, which is
22:57
really fantastic. And I still think to this day
23:00
that there are times where mental health is one
23:04
of those issues that are sort of kept a little
23:06
bit on the side or not talked about enough. Another
23:08
one that I kind of rarely see is intimacy. So
23:12
how often do you actually see women struggling
23:16
with intimacy and relationships because of the
23:19
IBD journey that they're going through? Oh my
23:21
gosh. I think I see a question in our private
23:24
forum probably every other day about this. It's
23:28
starting with dating. How do I tell someone?
23:30
When do I tell someone that I have this disease?
23:33
It's will I have an accident during sex? Will
23:37
my ostomy bag come off? Are there things that
23:41
I can wear to feel better in my skin? It's all
23:45
of those pieces and all of those layers and trying
23:49
to find a new way to have a relationship. with
23:52
your body, we hear it constantly. Still, you
23:56
know, things have really shifted over the years,
23:58
but, you know, intimacy and relationships, it's
24:02
a big one. It's still a very big one. It really
24:04
is. And if I go back 13 years in the year that
24:07
I was diagnosed, when I was... Still flaring,
24:10
actually. And I used to go on dates. The very
24:14
first one I went, I basically spilled everything
24:16
on the first date. And I don't think it went
24:18
very well because I think it was information
24:20
overload. So just very bluntly, when do I tell
24:25
someone about my IBD? I think it varies. I think
24:29
it varies on your comfortability level. In the
24:32
beginning of my journey, I would wait for, you
24:34
know, a few dates, see if things were really
24:36
going to take off. And then I would sort of slip
24:38
it in there like, hey, by the way, I have this
24:40
thing. You don't have to worry about it right
24:42
now. I'm in remission. But these things could
24:45
happen to when I started dating my girlfriend
24:48
in the last couple of years. I had all of the
24:52
information about myself. very publicly on my
24:54
social channels. So she could see it. It was
24:57
out there. There was no hiding it. And so I think
25:00
that that really helped to bridge the gap in
25:03
that conversation, you know, and she did her
25:05
own research. She was really incredible in that
25:08
way. And she wanted to see my ostomy and see
25:11
me do a bag change and very supportive. And I
25:13
think it really depends on your comfort level
25:17
and, you know, the way the readiness, the. in
25:21
sharing. I don't think there's anything wrong
25:22
with waiting. And I don't think there's anything
25:24
wrong with sharing it on the first date. If you're
25:27
just trying to rip the bandaid off, you know,
25:29
it takes some practice sometimes. Exactly. If
25:32
you're a risk taker, hey, just, you know, blow
25:33
it all out and put all the fish on the table,
25:36
right? Great. Now... How do you think IBD intersects
25:43
with things like, you know, dating, marriage,
25:46
and then also particularly wanting children?
25:47
And I mentioned the children part because just
25:50
today on TikTok or all places, somebody sent
25:53
me a message and said, hey, you know, a pregnancy
25:56
and ulcerative colitis, is that safe? What does
25:59
that look like? I think that, you know, obviously
26:01
there's a lot of changing data with pregnancy
26:04
and IBD. What medicines can you be on? Does surgery
26:07
impact that? And I think it's having that conversation
26:11
with your doctor. I think that's the best place
26:13
to start because your care team can really come
26:15
up with a personalized plan for you depending
26:18
on where you are in your journey. I have many
26:21
a friend who has had a very successful pregnancy
26:23
with IBD being on their medications and safely,
26:26
you know, having children. And then I know, you
26:29
know, a gambit of us who have had issues with
26:32
fertility. And I think it really is personal.
26:35
And ultimately, your care team is the best. place
26:38
to start with that. Shifting back to you, you've
26:42
had your IBD journey. You've had this girls with
26:46
guts journey. Now you've spoken to, I'm assuming
26:49
just hundreds and hundreds of people, you know,
26:51
dealing with IBD, mental health, physical challenges.
26:57
And I always say that IBD, like any other, you
27:01
know, serious disease. It changes you as a person
27:04
or it shapes you as a person as well. In your
27:06
case, you were 14 when you were diagnosed and
27:09
you already had symptoms before that. So in what
27:12
way has inflammatory bowel disease shaped the
27:17
Alicia that you are today? Like I said, I'm a
27:21
big storyteller. Got a typewriter when I was
27:24
like eight years old and I immediately was on
27:26
that thing writing stories. And so I think, one,
27:29
again, it has given me empathy and compassion
27:32
for all kinds of illnesses. I feel like I know
27:36
how to level with people who are really struggling.
27:39
It doesn't have to be IBD. And then that storytelling
27:42
element. I feel like I, having lived through
27:46
this, have a... very, you know, different lens
27:48
on life that other people might not have. And
27:52
I would say it's given me a unique perspective
27:54
on living because each day is not guaranteed
27:58
to be the same. I like to really skim Reddit
28:03
communities because on Reddit, you know, you
28:05
have actually a lot of activity, ostomy, subreddits,
28:09
colitis subreddits, Crohn's subreddits, and lots
28:14
of times. So that's sort of the starting point
28:17
for people who have just been diagnosed, right?
28:19
And then just today I saw a post for somebody
28:21
who said, you know, my life is over, question
28:25
mark, or I just got diagnosed, now what? If for
28:31
somebody who just got told that they have colitis
28:35
or Crohn's, somebody who's overwhelmed a bit,
28:38
what would your first words of advice be? It
28:41
would be that you are not alone. There are hundreds
28:44
of thousands of us out here. There are niche
28:47
communities for each person. And it's okay to
28:50
grieve. It's okay to grieve. It's a lot to process.
28:54
You know, it does change your life in a variety
28:57
of ways. And then the last piece of advice I
28:59
would give is to find one person that you can
29:02
talk to candidly about the disease. That takes
29:05
off a huge burden and mental load for you. And
29:09
I think ultimately for me, having had Katie back
29:11
in the day, that changed the trajectory of my
29:14
entire journey without having had that connection.
29:18
I'm not sure that I would feel as empowered or
29:21
as confident or able to talk about my experience
29:24
as I would have otherwise. So then what's one
29:27
thing that you wish every person with IBD understood
29:31
earlier? For me personally, I think one thing
29:34
that I wish I understood earlier is that IBD
29:37
is lifelong, so you have to learn how to befriend
29:39
it. Because when I was diagnosed, my priority
29:41
was how do I get rid of it? How do I hide it?
29:44
How do I minimize it? How do I get rid of this?
29:47
What can I take that just erases it from my life?
29:50
And then I quickly realized, no, it was here
29:52
to stay, and it's better to befriend it, figure
29:55
out what works for you, figure out the adjustments
29:58
that you need to make. It's better to find ways
30:05
to work with it than just pretend that it doesn't
30:07
exist. I think that that will impact your mental
30:09
health. That will make you feel more isolated
30:11
as well. And yeah, I think for me, befriending
30:15
it was ultimately, you know, what made the most
30:18
sense and has been the best for my journey. So
30:21
looking into the future, do you think that we'll
30:24
see an IBD cure in our lifetime? I would love
30:28
to say yes, I really would. And so many things
30:30
have changed in the last 20 years, but I'm not
30:34
sure. I mean, I will say I hope so. Fingers crossed.
30:38
But if nothing else, the support has changed.
30:41
The medication landscape has changed. I think
30:43
that there is a great chance and a better chance
30:46
of success and remission for patients that are
30:49
newly diagnosed now with the treatments and support
30:52
that's out there. So fingers crossed that we
30:55
do have a treatment in our lifetime. But if not,
30:57
I think, you know, being diagnosed now versus
30:59
20 years ago, you're in a much better place.
31:01
And even if it might take a little bit longer
31:03
to get to that point, like you just mentioned,
31:05
though, the support, the community, basically
31:08
Wilkhart has really grown and Girls With Guts
31:11
is certainly doing its part. You are certainly
31:13
doing its part. So keep doing that. I think you're
31:17
not just helping people. I'm pretty convinced
31:20
that you're actually changing a lot of people's
31:23
lives as well. And that's really great. So Alicia,
31:26
thank you so much for speaking to me today and
31:28
for also sharing. your world, your journey, and
31:32
what you do with Girls With Guts. I wish you
31:34
nothing but the best moving forward. And like
31:37
I just mentioned, keep doing what you're doing,
31:39
because even if you just help one person, that's
31:42
a massive success already. Yeah, thank you so
31:46
much for having me. It's been a pleasure. Thanks.
31:49
That's it for today's episode of Colitis Unfiltered.
31:52
I'm Frank Klabring, and if this hit home or hit
31:55
your gut, do us a favor, subscribe to the show,
31:59
And follow us at Kaleidos Unfiltered on YouTube,
32:02
Substack, Instagram, Threads, TikTok, and Reddit.
32:05
We'll see you soon for more inspiring stories
32:07
from the bathroom floor.