Latest / Crohn's & Colitis Unfiltered / Childhood Crohn’s, ostomy and nursing: Leah’s long way back

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Childhood Crohn’s, ostomy and nursing: Leah’s long way back · Crohn's & Colitis Unfiltered

0:00
I believe that having an ostomy for IBD patients
0:04
does help more than getting an ostomy for different
0:08
conditions. It gives your bowel a break from
0:12
where the inflammation is. It's a lot of transitioning
0:17
and practice required with getting an ostomy,
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but it is totally okay to do anything that you
0:25
were doing before. after surgery with an ostomy.
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There's nothing that I can't do that I do now
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that I didn't do before I had an ostomy. This
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is Leah, who got diagnosed with Crohn's disease
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at age nine in Swansea, Illinois. Leah's IBD
0:41
experience is one of transformation, from dealing
0:44
with vicious symptoms as a child to navigating
0:46
multiple surgeries and eventually seeking a career
0:49
as an ostomy nurse who guides her patients to
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the very journey she herself has and is living.
0:55
Leah proves that an existence reshaped by Crohn's
0:58
can be full, meaningful, and joyful. This is
1:03
Talking S***, presented by Colitis Unfiltered.
1:05
My name is Frank Tabing, and Leah, welcome to
1:09
the show. Hi, thank you for having me. Well,
1:12
it's a pleasure. So we briefly talked about your
1:15
journey, but what I always like to start these
1:18
by going into the past, right? Moving on to the
1:22
present and then into the future. So let's start
1:25
with the past and tell us about your diagnosis.
1:29
Tell us how it happened and maybe start with
1:32
the first symptoms. Whatever happened that you
1:35
noticed that there was something wrong and how
1:37
those symptoms then launched to the diagnosis
1:40
and the rest of your journey. So I was diagnosed
1:43
when I was nine. I actually had a bout of food
1:47
poisoning prior to my diagnosis. I feel like
1:50
kind of kick -started some things. I think it
1:52
sent my immune system into overdrive. And then
1:56
after that, I was having symptoms of fatigue,
1:58
bloody diarrhea, just overall just weight loss,
2:03
not feeling well. I became very pale. I was brought
2:08
to the hospital in actually St. Louis Children's.
2:12
That was actually in Missouri, but we were very
2:14
close to it. And I was so afraid of the doctors.
2:18
So they did one test and I was like, I'm never
2:21
going back. My parents were very nervous to bring
2:24
me back to the hospital because I made such a
2:25
fuss of it. of it. And then since we didn't follow
2:29
up, my dad was in the military at the time and
2:31
we were actually stationed in the Netherlands.
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So we left to go to the Netherlands and due to
2:36
the stress of being in a new country, new food,
2:38
new environment, my condition went into overdrive
2:41
again and I started having my first player. We
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had a lot of... doctor visits in the Netherlands
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because I was so tired that I just kind of gave
2:49
up on going back to the hospital. And that's
2:52
where I started seeing Dutch doctors that put
2:55
me on Remicade infusions. And then I was still
2:59
having some symptoms and needed to do like bowel
3:04
preps and stuff. So that's when I got my first
3:06
NG tube as well. The Remicade worked for about
3:09
five weeks and then My next dose was less and
3:13
less. I was having still the same symptoms. So
3:15
we actually went to London at the time to talk
3:18
to other doctors, get a second opinion. And they
3:21
were the first ones that brought up surgery as
3:23
a potential intervention in the future. My parents
3:26
got nervous. We ended up flying back to the States
3:28
for a third opinion from military doctors. And
3:32
in that process, I underwent treatment for two
3:35
weeks, had IVs, had NG2, couldn't eat, I was
3:38
having endoscopies, colonoscopies. And that eventually
3:42
led to like a definitive Crohn's diagnosis. And
3:46
my eighth grade year in middle school, I actually
3:50
ended up getting my first ostomy due to some
3:53
of the medication not working. And I went through
3:57
high school, college, and eventually led to having
4:00
my large intestine removed when I was 18 after
4:04
several medications. And I've actually been great
4:06
ever since. So this is great. You're feeling
4:09
amazing. That's what we want, right? But it's
4:13
definitely been a journey for you. So you touched
4:16
on a lot of things that I would love to follow
4:18
up with, but going back to the diagnosis, and
4:20
I guess in your case, you had sort of almost
4:23
several diagnoses, right? Going back to maybe
4:27
the one that stuck in your head the most or that
4:30
maybe moved you emotionally the most, how did...
4:35
Did the doctor break the news to you? And also
4:37
sort of what went through your mind, not really
4:40
knowing much about the condition that you had,
4:42
right? Yeah, I think being that young, it's really
4:46
hard to wrap your mind around a diagnosis like
4:49
that, especially since, you know, going to the
4:52
bathroom is such a private part of our lives.
4:55
I hated all the medical procedures that I had
4:57
to go through, but it was kind of a dramatic
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and emotional experience of... this is what's
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presented to me this is what's happening to me
5:06
I kind of have to just do what I need to do I
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kind of let my parents figure out a lot of it
5:11
but it was really just I was hurting I would
5:15
tell my parents the doctors would tell them what
5:17
to do I would go in for testing and I would kind
5:19
of sit with it and I absolutely did not love
5:22
it when I was that age but it was something that
5:24
I was like okay well It's either this or I feel
5:28
bad. So it was a lot to take in, but it was something
5:31
that I was like, okay, like this is, I kind of
5:33
just accepted as like, this is what life is.
5:36
This is what it's going to have to be. So a lot
5:38
of different emotions. Looking back now, would
5:42
you potentially argue that it was maybe better
5:45
for you to be at such a young age because you
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didn't have that knowledge, right? Or you had
5:50
your parents more as guides and really helping
5:53
you out? Oh, absolutely. I tell people all the
5:57
time that I am so fortunate that I got diagnosed
5:59
at a young age, especially now I see kids that
6:03
get diagnosis that bounce back really easily.
6:07
Kids are way more. And they're way more moldable
6:11
to be able to go with the flow at that time because
6:14
the parents do handle a lot of that stuff. So,
6:17
yes, I would agree that being diagnosed at such
6:20
a young age and also getting an ostomy at such
6:22
a young age was definitely a blessing. And this
6:26
leads to my next question. Surgery at a young
6:27
age, ostomy at a young age. How did you navigate
6:30
those moments, those years, the teens, right?
6:35
Such a crucial point. And yet there you are.
6:39
looking basically a little bit different, feeling
6:41
a little bit different than others. What was
6:43
that period like for you, especially also during
6:46
those crucial teenage years? I was a loner for
6:49
most of those years. I tried my best to be social
6:52
and I wanted so badly to be normal. But there
6:56
was times where I just gave in to how my body
6:58
was feeling and I would stay home. I missed a
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lot of dances and school. I missed a lot of like
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hanging out with my friends. it just took so
7:07
much out of me that I was like, I just, I can't.
7:09
And I don't want to show up and not be present.
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Even now, like if I'm not feeling well, I will
7:14
cancel before I go out and try to bring the mood
7:16
down. But yeah, during my flares, it was, I just,
7:21
I wanted to be alone. I was a very suffer in
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silence kind of person and I had to just ride
7:25
it out. There was nothing, you know, it's your
7:28
body. There's nothing really that you can do.
7:30
So it was just laying low until I felt better.
7:34
And your friends, Again, because of this young
7:37
age, were they able to understand what you were
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going through? Were they able to sort of cope
7:43
with knowing that you, their friend, is experiencing
7:45
this? Or was there also a certain distance because
7:49
of what you were experiencing? I definitely think
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there was some people who were kind of like,
7:54
okay, she's just doing whatever. But at the time
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when I had my... most severe flare and I left
8:01
the Netherlands there was a lot of people who
8:03
knew that I was sick and they they cared for
8:05
me they they sent a lot of like kind of goodbye
8:08
messages and saying like hey you know I hope
8:10
you feel better in the states and then when I
8:12
move back to the states there was a lot of people
8:14
that are like what's going on with her because
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I wasn't super open about it at the time so I
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think it was 50 50 those people who were close
8:21
to me I had like one or two friends that I'd
8:23
be like this is what's going on and then others
8:26
would kind of know something was going on but
8:28
otherwise They would continue with their lives
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as you would. So it was hard to accept that adjustment
8:37
and know that not everyone's going to be able
8:41
to stay with the pace that I'm at. So it was
8:44
an adjustment in every period. So you mentioned
8:47
not being very open about it at that time. Obviously,
8:50
as humans, we get older, we get wiser. What changed
8:55
in you that you started opening up about it more?
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Was it a specific period in your teens? Was it
9:01
a little bit later? Was it an event? Was it just
9:03
getting older, pulling in more experience in
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life? What was it that helped you transition
9:11
from being kind of closed off to being so much
9:13
more open about it today? It was definitely when
9:16
I got my first ostomy when I was 13. When after
9:19
I got my first ostomy, I felt so much better.
9:23
I shot up in growth. My nutrition got better.
9:26
I got color back to my face. And since an ostomy,
9:30
it can be very private, but since it was so open
9:34
and it was something that made me feel so much
9:37
better. I was like, okay, well, this is on my
9:40
stomach. It's going to be seen at some point.
9:42
Like I feel so much better. Like I can do so
9:44
many things. I joined my middle school and high
9:46
school dance team. And just from there, I was
9:49
kind of like, well, I feel better. I'm glad I
9:51
have this. So if anyone wants to know about it,
9:54
like that'd be cool because maybe someone else
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is going through the same thing that I'm going
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through and surgery is very daunting. So I was
10:01
just, I started being very open about it when
10:02
I started feeling better after my first ostomy
10:04
surgery. Great, yeah. And that happens to you
10:07
at such a young age, so it's actually pretty
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inspiring that, you know, at age 13, you not
10:13
only have to go through the whole process, the
10:15
surgery, the recovery, living with it, but then
10:17
it sort of helps you to, I guess, actually maybe
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mature even faster than most people or other
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people, right, around the same age. So that's
10:27
great. At least that's a good positive thing
10:30
that came out of that. You had the first surgery
10:34
pretty early. One thing that always comes up
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when I talk to people that are maybe newly diagnosed
10:39
or that have been sort of on medications that
10:43
are not necessarily biologics, they always have
10:45
this worry about, oh, what if the medication
10:46
doesn't work? Yes, but there is a lot of options.
10:48
So you mentioned you were on Remicade earlier,
10:51
but it really sort of failed after weeks, you
10:54
said. Were you on other treatments? Did the doctors
10:57
not want to put you on other treatments? Did
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you feel like they were not proactive enough?
11:01
Or did they just tell you, listen, oh, Remicade,
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it failed after five weeks. So there's no bother
11:06
even trying anything else. Like how, what happened
11:09
with your treatments or other treatment options?
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I think it's a little different for me at the
11:13
time because I was living in the Netherlands
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and I think the language barrier. And the fear
11:18
of this new diagnosis was hard on my parents.
11:20
So that's why we got so many different opinions.
11:23
Remicade at the time was the first line drug
11:25
for IBD, to my knowledge. And we did, I mean,
11:30
we did try it a couple times after that. But
11:31
even after our re -infusion, I never got better.
11:35
So when we came back to the States, well, actually,
11:37
when they first mentioned surgery back in London.
11:40
My parents freaked out. Every parent would freak
11:42
out if their child had to get surgery. But we
11:44
went back to the States and they put me on an
11:47
NPO diet, nothing to eat, and let me be on bowel
11:51
rest. And then they're like, okay, well, there's
11:53
certain things that we can do because surgery
11:55
is, again, sometimes a last resort. So they ended
12:00
up putting me on Humira injections. I was on
12:03
methotrexate injections. I was on different pills
12:06
prior to the Netherlands as well. I wasn't on
12:11
them for long. And then even after my first surgery,
12:15
I was on several injections after that. So I
12:17
did try several different medications. But again,
12:22
the bliss of being ignorant as a child, I kind
12:26
of was like, okay, I'll do this. Okay, I'll do
12:28
this. Whatever my parents were like, okay, well,
12:30
we need to try this. I was trying whichever,
12:32
but it wasn't until... later on that i've been
12:36
on the same drug but yes i did trial many medications
12:40
but i guess the fear wasn't there yet of like
12:43
oh this doesn't work because i was running through
12:45
so many things that i was kind of like okay i've
12:48
accepted that this is such a big transition that
12:51
i'm just kind of have to go through trial and
12:53
error so that was a period where i'm assuming
12:56
you you were flaring and your symptoms were pretty
13:00
bad or got to the worst possible stage that you
13:04
were in. Now, you said you were more of a loner,
13:07
an introvert, and I think that may have helped
13:10
you deal better with sort of the isolation, right,
13:13
surrounding the symptoms of this disease. I always
13:16
say this helped me as well. I was actually comfortable
13:19
being alone. But nonetheless, again, you were
13:24
younger. So how did you, in what ways did you
13:27
deal with this isolation? Or did it not bother
13:30
you at all? I think with this condition, I mean,
13:36
I wasn't always I wasn't a quiet child. I wasn't
13:39
always reserved. But I did enjoy my alone time
13:42
when I was sick because I didn't have to explain
13:45
it to anybody. I didn't have to do anything requiring
13:49
exertion. I got really into art. I painted a
13:52
lot. I did a lot of drawings. I really turned
13:55
to artwork because that is such a solo thing
13:57
that you can do. There was singing and dancing
14:02
videos that I would do in my room alone and have
14:05
it post them on social media embarrassingly.
14:08
But I enjoyed those times away because I could
14:11
I could put how much effort I wanted into it,
14:15
but still have some kind of interaction. I could
14:18
show people my art. I could show people the dancing
14:21
and singing videos. But when I wanted my alone
14:24
time, you know, I could post it. I could show
14:26
people and then I could be like, OK. I'm not
14:28
doing anything else. But I think it definitely,
14:31
having a chronic illness has stunted me socially
14:36
and emotionally back then. And it was hard to
14:39
keep up with people my age. So I did turn to
14:42
artwork and singing and dancing on my own. But
14:46
eventually, once I started feeling better, I
14:48
was able to catch up and kind of do more physical
14:50
things like joining my dance team, but taking
14:52
it at my own pace. Obviously, people, adults
14:55
knew that I had a condition at that time. So
14:58
I was kind of just do whatever I needed to do
15:01
to feel better. So you basically were spending
15:04
that little energy that you had on yourself and
15:07
yourself only, right? Which is what I would say.
15:12
the selfishness that we need when we are flaring
15:15
or we're in a bad condition. So what's interesting
15:20
about your story is that you passed through many
15:24
physician's offices, specialist appointments.
15:28
And I always say that for somebody with active
15:31
disease, or even when you're in remission, that
15:34
sort of a connection or relationship with a gastroenterologist,
15:37
especially, is extremely important to have somebody
15:40
who's proactive. Is this something that you actually
15:43
ever experienced, seeing all these different
15:45
doctors? Or did you at one point have a doctor
15:47
that you could stick with, right, and build that
15:51
kind of a relationship with? Or not really? I,
15:55
after the Netherlands, when I was brought back
15:58
to the States, we did go to Walter Reed Medical
16:01
Center that is near me now. And the pediatric
16:05
gastroenterologist that took me on at the time,
16:07
he was a fellow. So in his last year before he
16:10
was in attending, he really took a strong hold
16:14
of my case. And we, I mean, I. How often that
16:19
I saw him and how difficult my case was when
16:22
I was presented to him. We grew such a connection.
16:27
I was very resistant against him because I was
16:31
a child. But even now, I still have a strong
16:35
connection with him. He was a pediatric gastroenterologist,
16:38
so it was difficult when I did have to transition
16:41
to adulthood and no longer have him as a doctor.
16:46
I'm not going to lie, it has been kind of difficult
16:48
as an adult to establish a connection with a
16:50
gastroenterologist at this age. I think that
16:54
I have found one that has been communicative,
16:56
but I definitely don't see them as often as I
16:59
did my pediatric gastroenterologist. And I think
17:03
that's just how I'm learning. That's how things
17:05
work. But I do think it is important to at least
17:08
have yearly checkups with your GI. And if you
17:11
can establish that rapport. I think it will take
17:14
more from the patient on that part, especially
17:16
as an adult. But it is good to have someone that
17:19
knows your case, especially if it is something
17:22
that you've dealt with for a long time and have
17:25
gone through several medications. So great. I
17:28
think that was a pretty good summary about what
17:30
you went through. Let's transition to today.
17:35
Earlier, you mentioned you're feeling great,
17:38
but I would love for you to delve a little bit
17:41
deeper on this. Tell me today. How are you feeling?
17:44
I'm feeling good. You know, there's still that
17:48
deep -seated fear of, you know, one day I might
17:52
not feel good. I am currently on one medication
17:54
that has been helping me for a couple of years.
17:57
And back to your original questions earlier,
17:59
there is a fear that it will stop working. And
18:03
I still hopefully have so much life to live that
18:05
there are different complications that can come
18:08
up. But right now, how I'm feeling day to day
18:11
is amazing. I couldn't have asked for a better
18:14
turnout, but I'm hoping to continue that. You
18:19
touched on something very briefly there, and
18:20
I would like to go a little bit deeper there
18:21
as well, because there's certain misconceptions
18:24
around ostomies as well that are like, hey, once
18:26
you have surgery, you're cured. You don't have
18:29
an intestine anymore. There's nothing to worry
18:31
about. But that's not always the case. So you
18:35
mentioned your medication. Can you quickly...
18:37
Take us through why you are on that medication.
18:40
What is that medication? And then at the same
18:42
time, also talk about what your current challenges,
18:45
if any, you have living with an ostomy. So after
18:50
I had a total colectomy when I was 18, and that's
18:54
mainly because my disease was in that portion
18:57
of my intestine at the time. So we thought if
19:01
we got rid of the colon at the time that my disease
19:05
would. kind of mellow out. Unfortunately, that
19:09
did not happen. Since I do have Crohn's disease,
19:11
it can happen anywhere from the mouth to the
19:12
anus. So I did develop disease in different parts
19:16
of my digestive tract that was left. So I did
19:20
have to go back on medication after my total
19:22
colectomy. I'm currently on Humira injections.
19:25
I think it's adalimumab is the actual term. I'm
19:29
on injections every other week. They have been
19:32
working for the diseased parts of my bowel that's
19:36
left. And I've been on it since 2018, I believe.
19:41
I've heard that people have been on it for years.
19:44
I've also heard that it has not been a drug of
19:46
choice for other IBD patients. And then personally
19:50
for me, a different story, having an ostomy.
19:52
I do believe that having an ostomy has helped
19:56
my condition immensely, but I do have IBD friends
20:00
that don't have ostomies and they still have.
20:02
an incredible life. They still feel great as
20:04
well. I was just that lucky that I got an ostomy.
20:08
But the challenges I think nowadays for having
20:12
an ostomy is my disease process is more focused
20:16
on having an ostomy because they can be you know,
20:20
a little more difficult to handle on top of already
20:22
having a chronic illness. So I think my day -to
20:25
-day actually focuses more on my ostomy care
20:27
rather than my IBD because my IBD is kept at
20:31
bay luckily right now by my humor injections.
20:34
So if somebody is potentially facing surgery,
20:37
potentially facing ostomy, and they're scared,
20:40
they're worried, what would you tell that person?
20:45
I would tell them that it's going to be okay.
20:50
I believe that having an ostomy for IBD patients
20:53
does help more than getting an ostomy for different
20:57
conditions. It gives your bowel a break from
21:02
where the inflammation is. I don't think that
21:06
it's a sole intervention. I do think in my case,
21:09
I did have to go back on medication, but it is
21:12
a day -to -day thing. It's a lot of There's transitioning
21:17
and practice required with getting an ostomy,
21:20
but it is totally okay to do anything that you
21:25
were doing before after surgery with an ostomy.
21:29
There's nothing that I can't do that I do now
21:31
that I didn't do before I had an ostomy. So it
21:35
doesn't limit you at all. It is an adjustment,
21:38
but it does not limit you. That's great. So you
21:42
just mentioned what... sort of impact this has
21:45
on your life. Now I would like to know what sort
21:49
of impact this has had on you. In other words,
21:52
what you went through with the Crohn's, with
21:55
the surgeries, the ostomy. How has this changed
21:59
you as a person over the years? I definitely
22:04
think this condition has made me humble. I've
22:09
definitely been humbled to the fact that life
22:11
can change very easily and I can be in pain one
22:14
day and not pain in the other. I think I've become
22:17
very empathetic with those who are going through
22:20
the same thing, especially having to go through
22:23
multiple medications and then ended up needing
22:25
a surgery. I'm still greedy and needy how normal
22:31
people would be in some light, but I do take
22:33
those moments and see a different side of things
22:36
because I know that Life is not always black
22:39
and white. There's going to be some areas where
22:41
you're not going to be able to give your all
22:42
every day. And that may not pertain to just IBD
22:46
patients. That's generally how everyone is day
22:49
to day, that there's something that someone else
22:51
is going through that you have no idea. They're
22:54
having silent battles of their own. So I definitely
22:57
think that gave me perspective having this condition
23:00
that no one's normal. Everybody has something
23:05
that. is going to knock them down sometimes.
23:09
And I think that we need to accept people for
23:12
who they are and what they can give with a grain
23:15
of salt and know that, you know, no one has control
23:17
over what happens to them, you know? So I think
23:23
it's just giving me a different perspective overall.
23:26
I always refer to, or in my case, my IBD as a
23:30
blessing and a curse. Based on what you just
23:34
said, thinking back, How do you relate to that?
23:38
Well, I could not agree with you more for the
23:41
same reason. For obvious physical conditions,
23:46
it's a curse. But for the emotional and social
23:49
aspect of it, it is a blessing. I think being
23:55
humbled is not necessarily a negative thing.
23:59
I think that it is. helpful to, especially in
24:02
my line of work right now, to be able to relate
24:05
and not know any struggles in life. I think knowing
24:10
the struggles and being able to go through some
24:13
of the hardships has molded me into the person
24:17
that I'm proud of today. I don't think that if
24:21
I didn't go through any hardships or struggles
24:23
with this condition, I could be a completely
24:25
different person. And I like the person who I
24:29
am today. So I'm thankful for the experiences
24:32
that I have, regardless of what I went through
24:36
to get there, if that makes sense. Oh, absolutely.
24:39
It really, really does. And you touched on it.
24:42
You touched on what you're doing today because
24:44
it's very heavily involved with sort of the ostomy
24:47
world. But before we get to that. In your answer
24:51
now, you mentioned the social aspect really quickly.
24:53
So I do want to go back into the past one more
24:55
time, just because I'm interested to see how
24:57
you navigated this. With what you went through,
25:00
again, through this crucial period of teenage
25:03
years, when most people, you know, they go dancing
25:08
to clubs. I mean, you did it in your room. Great.
25:11
You know, they date, you know, they have sort
25:14
of, they go through that natural stage of adolescence
25:17
and moving into adulthood. You had a surgery
25:20
at 18. So how has this affected this aspect of
25:30
growing up, like relationships, body image, right?
25:34
In what ways has this impacted you? And how did
25:37
you live those moments at those different ages?
25:42
Yeah. Well, from a very young age, when my condition
25:47
was at its worst, I was pooping my pants. Like
25:51
outright, I was going, I was, I could not hold
25:54
it. My condition was so bad that it was just,
25:56
I was running to the bathroom all the time. So
25:58
body image wise, there is definitely things that
26:01
I had to think about before going anywhere. Like,
26:04
OK, well, maybe I shouldn't eat that. Or is this
26:06
going to affect me? Where's the nearest bathroom?
26:09
I think that was such a major part of my life
26:12
that I had some social anxiety of like, if I
26:16
were to poop my pants, where can I run to first?
26:20
Like, what clothing should I bring? And then
26:22
later on, when I got my first ostomate was. oh,
26:26
like, are people going to be able to notice it
26:27
through my clothes? Am I going to be able to
26:30
sit down crisscross? Or, like, general day -to
26:35
-day stuff, like, that you don't second guess,
26:39
I guess. I was thinking about, like, how are
26:42
people going to view me? And even today, I'm
26:45
still, how are people going to view me? But I
26:48
think it came with time and exception that okay,
26:52
maybe people don't notice my ostomy. People don't
26:55
notice my stomach gurgling. People don't notice
26:57
how often I'm going to the bathroom. And if they
27:00
did, it was kind of like, well, I don't know.
27:03
I've dealt with it for this long. People go to
27:06
the bathroom. I kind of just accepted like everybody's
27:08
poop stinks. Everybody goes to the bathroom.
27:10
I just go a little bit more. And then I guess
27:13
romantic relationship wise, I was very private
27:16
initially. It wasn't until later in life that
27:19
I did share. more of that stuff because I feel
27:22
like in relationships, that is one of the harder
27:25
things to talk about is intimacy and toileting.
27:30
But over time, again, with the other things,
27:33
I kind of just adjusted to it is what it is.
27:38
Everyone pooped and pees. Everyone goes to the
27:41
bathroom. People wear different clothing. It
27:44
doesn't mean that you're you know, less than,
27:47
more than, anything like that. So it took a lot
27:50
of exception on my part to be comfortable with,
27:54
one, my condition and how my body image was,
27:58
but it did take time and it did take a lot of
28:01
reassurance as well, even today. Reassurance
28:04
is great for me, but having those people that
28:07
do reassure you in your life and acceptance that,
28:10
like, It is what it is. It definitely helped
28:14
me get through most relationships in my life.
28:19
So just listening to this again, yes, absolutely.
28:22
This is not necessarily dinner talk, but, and
28:26
you said poop, which was, you know, very, very
28:28
nice, but it's okay. This is a podcast so we
28:30
can use explicit language. It's true. Everyone
28:32
shits. Everyone shits. And that's just the lesson
28:35
here, you know? I mean, again, no need to talk
28:37
about it all the time, but it's completely fine
28:39
because everybody can relate to it. So it's okay.
28:43
So I don't want to, with my next question, I
28:45
don't want to spoil it. So I'm going to let you
28:47
answer it because not only do you live with an
28:50
ostomy, but you really carried this through into
28:53
your professional life. Tell us what you do today,
28:56
what that entails. And most importantly, I would
28:58
love to know how did you get into that field?
29:01
What made you want to do this? Well, I am a certified
29:05
ostomy nurse and I have been for... In this role
29:10
about a year now, working as an ostomy nurse.
29:14
Prior to this, actually, I was a GI nurse working
29:16
in endoscopy. So both sides of the condition.
29:21
I think it's not hard to conclude that my condition
29:24
and my ostomy led me to want to work with patients
29:27
that have these conditions. I think it's very
29:30
fulfilling and rewarding to come in contact with
29:34
other people that are like me. Again, that's
29:36
the reassurance part. enjoy seeing patients that
29:40
have kind of gone through what I've gone through
29:42
but I ever since I actually had my first GI nurse
29:47
in the hospital I've been like that's what I
29:51
want to do like I want to be her and she was
29:53
this little Filipino lady who worked in a big
29:55
military hospital and she was so blunt um and
30:00
at times I did not like her for that but it definitely
30:04
shaped me into what I wanted to do. So I got
30:08
my bachelor's in nursing. I made a plan. I was
30:12
like, I'm going to do this by this time at this
30:15
date. I knew I wanted to be in the GI field,
30:18
but since I had an ostomy, I was leaning more
30:21
towards ostomy patients who don't necessarily
30:24
always get an ostomy for IBD reasons. I worked
30:28
as a nurse for one year. I actually went into
30:30
endoscopy and worked there for two years. Absolutely
30:33
loved it. Loved the procedural part of it. And
30:36
then went back to school to get my certifications
30:39
for wound, ostomy, and continence nursing. And
30:43
then I ended up getting a job at my hospital
30:46
working with inpatients from neonates to geriatric
30:50
population who have ostomies for... A plethora
30:55
of reasons, but it's been very rewarding and
30:58
very fulfilling. And so right now in your current
31:01
position, take us through a day in the life of
31:06
Leah. What is it that you do? What are your responsibilities?
31:11
So as an ostominer, I do have like a list of
31:16
patients. Believe it or not, there are at least...
31:21
two patients getting an ostomy a day. So we will
31:24
have ostomy patients that are straight out of
31:27
the OR, day one post -op, who we have to go and
31:32
say, hey, this is your life now. This is how
31:36
you live with an ostomy. And so we see patients
31:39
from post -op day one up until they're discharged,
31:42
and we teach them the basics of ostomy care,
31:44
how to live day to day, how to change their bag,
31:49
how to empty their bag, how to adjust their diet
31:53
and hydration around having an ostomy. And we
31:56
see them up until discharge. And then unfortunately,
31:58
I don't get to see the post -op, but there are
32:01
patients every day that I see or I see in the
32:06
future that come back and they're like, yeah,
32:08
I'm dealing with it just fine. It ended up being
32:11
no big deal. There's definitely patients that
32:14
don't handle it that way. And it is very hard.
32:16
I did have one particular patient that was did
32:21
not have an ostomy for IBD reasons, but nevertheless
32:23
was a huge change in their life. And I think
32:27
the connotation around ostomies is so negative,
32:31
usually, that it is an even bigger adjustment
32:35
when you have that already that mindset to having
32:38
an ostomy. But he made such an incredible turnaround
32:41
on being able to help people accept this as part
32:46
of their life and their day to day and say, hey,
32:49
like, it's you can take a break. Like, this is
32:53
a lot of information. This is a lot that you're
32:55
going through. You have other things to worry
32:58
about. But we're for this hour, we're going to
33:01
focus on this. And then continue your day to
33:04
day. So it's really just a lot of emotional support
33:07
as well as physical and like educational support.
33:11
That's really great. And in connection to that
33:13
earlier, I asked Leah, the patient, to sort of
33:16
offer some words of advice to people that might
33:19
face an ostomy, right? Or that, you know, just
33:21
had surgery. I'll ask you this again, but slightly
33:26
different now as Leah, the professional. When
33:29
you see people with ostomies, there's leaks sometimes,
33:32
there's skin irritations, rashes, frustrations
33:36
that pop up left and right. And sometimes I think
33:41
it really affects people from a mental point
33:43
of view as well. What words of encouragement
33:45
do you have for people sort of navigating daily
33:49
struggles with ostomies? That's it's a it's a
33:53
big feat for sure, because everyone's different.
33:56
Everyone handles things differently. I kind of
33:59
do it the personal way of things. I don't openly
34:04
share about my ostomy unless it's appropriate.
34:07
Like at least I if I know that they're mentally
34:09
there to accept that information, I will tell
34:12
them. But I tell them without telling them. I
34:16
know that this is a lot. I know that you're dealing
34:19
with a lot of things and a lot of things are
34:21
happening, complications that you weren't expecting
34:24
coming with an ostomy. But there are ways to
34:28
mitigate these things. There are ways to treat
34:30
these things. And if the patients are in the
34:35
hospital long enough, we can teach them a lot
34:36
of things. But basic ostomy care those first
34:39
few days after surgery. is just knowing how to
34:42
protect their skin, knowing how to prevent leaks
34:45
and knowing how to keep a pouch on. It is very
34:48
fast, but I would let patients know that there's
34:51
so many resources out there, IBD population or
34:54
just ostomy population. So many people, including
34:58
myself, like do different things that are out
35:01
of the norm, but that work for them. So professionally,
35:05
I say it's a lot. I know, take a breath. I acknowledge
35:10
that it is a big thing and is a big adjustment
35:13
in your life to accept. But this is your life
35:18
now. And we do have to focus on what is going
35:20
on right now. So it's kind of like a tough love
35:23
thing. Like, I get that this is a lot for you.
35:26
But this is what we got to do. And the sooner
35:29
that they accept it, the better. It does take
35:32
longer than others. But it is just kind of a,
35:35
you're going to be okay. that this is how life
35:38
is going to be right now. And sometimes people
35:40
don't have ostomies permanently. Some get them
35:42
reversed. So we don't try to bring that up because
35:45
that might be false hope. But if we can, we kind
35:49
of shed a little bit of light on the future.
35:52
So you're spending your days in and out basically
35:57
offering guidance to patients. However, there's
36:01
a whole population out there that is not... necessarily
36:04
physically affected by ostomies or by IBD however
36:07
they are supporting someone with IBD or an ostomy
36:11
they're in love with somebody who has an ostomy
36:13
or IBD what kind of advice do you have for friends
36:18
for family members for partners supporting someone
36:22
with IBD or someone with an ostomy there was
36:27
a very good article that my mom sent me very
36:29
while back when I was like teenage years, that
36:33
covers how to love someone with Crohn's disease.
36:36
So specifically my condition, but IBD in general.
36:40
And a lot of the article touched on a lot of
36:44
people will suffer in silence. There's a lot
36:46
of things that they will want to do for themselves.
36:48
And although they may look like they're struggling
36:51
doing it, sometimes, as we've talked before,
36:54
it is a comfort. for that alone time to figure
36:58
things out for yourself so i think if you love
37:01
someone in your life or caring for someone in
37:03
your life with an ostomy or ibd it's going to
37:07
be hard but you have to give them space to accept
37:11
and to work through the condition because it
37:14
is something that is happening to them so you
37:16
have to give them grace with what they're going
37:19
through whether it's a new diagnosis or a new
37:22
ostomy it is such a big adjustment period that
37:27
I know a lot of people I even have a best friend
37:31
that's very like what do you need what you know
37:32
like what can I do and I'm like let me just sit
37:36
with this for a second uh I had a situation the
37:39
other day my bag leaked at my friend's house
37:41
right before we were going out and it has not
37:43
leaked in a very long time it's just like what
37:46
can I do do you need to change it like do you
37:47
have supplies blah blah and I was like let's
37:50
slow down here. Like, let me accept the fact
37:52
that my bag leaked after years. Like, I'm still
37:56
trying to grasp, like, how did it leak? Or sometimes
38:00
if my stomach hurts from my condition, sometimes
38:02
I'm like, why is it hurting? And someone's like,
38:05
well, what does it feel like? What are you doing?
38:07
Like, what did you eat? Blah, blah, blah. And
38:08
I'm like, give me some time. Give me some space
38:11
because it is so overwhelming when some people
38:14
try to overhelp that you just need some time.
38:18
My one piece of advice would be give people a
38:21
grace period and accept that there's some things
38:24
that they need to just do themselves to feel
38:27
physically and mentally okay. Yeah, that's right.
38:32
Give them some space. Give them some time. Maybe
38:34
feel free to educate yourself, but make sure
38:38
you use that. newfound knowledge carefully as
38:42
well, right? You don't want to crush somebody
38:44
with like facts and figures and yeah, so that's
38:48
very good. So we spoke about you speaking to
38:51
a lot of other people, but if you could go back
38:54
to the nine -year -old self, potentially even
38:58
on the day that you were diagnosed or, you know,
39:01
you received the news that there's something
39:03
fundamentally wrong, what would you tell yourself?
39:08
Hmm. I don't know if my nine year old self would
39:10
listen to me. It could be the 13 one year old,
39:14
you know? I think it would be nice if I sat with
39:21
myself in like a quiet place. And I think it's
39:26
hard to hear that everything will be okay. But
39:30
knowing that, I mean, because my future self
39:34
knows now that I'm okay. But understand that,
39:38
like, again, this is a lot that you're going
39:40
through. I know that you're in pain and I know
39:43
you're questioning, like, why is this happening
39:44
to you? And it's unfortunate that it did. But
39:48
I would tell her to be strong and to take it
39:53
with a grain of salt, to endure what I can and
39:56
make sure that I set limits with people who are
39:59
either trying to tell me things or trying to
40:01
make me do things. I have a choice when it comes
40:03
to. medications, procedures, stuff like that.
40:08
You don't have to tell people about your condition.
40:11
You don't have to feel like you have to be 100
40:15
% all the time. If you're not feeling well, communicate
40:19
at least that, that you're not feeling well.
40:24
It's just not a good day for you. And don't let
40:26
people push you. And don't let people tell you
40:30
what is and what isn't. You know your body. You
40:33
know yourself. It's you who have to live with
40:38
yourself at the end of the day. So accept what
40:40
you can. If you can't, just communicate that.
40:43
I would definitely tell her to communicate better
40:45
than how I was when I was younger. And just take
40:49
it day by day. Each day is going to be different.
40:52
But they're knowing now. I didn't know at the
40:55
time. There's a lot of other people going through
40:57
the same thing. So, you know, lean on your peers.
41:00
Lean on your family. And just take time for yourself
41:04
and just accept kind of what is and that maybe
41:08
things will look up someday. Sometimes the sort
41:12
of simple reassurance is all the reassurance
41:16
that humans need. So I think that's great. So
41:20
my final question for you is about the future.
41:26
And even though I always say this, it's very
41:28
difficult to answer. At least all we want to
41:31
have is hope, right? So do you believe that in
41:34
our lifetime we will find a cure for IBD? I think
41:40
there won't be a cure for one condition. I think
41:45
that it's going to take probably more than our
41:47
lifetime to figure out something for everyone's
41:49
condition. But I do think we are. making positive
41:53
strides, huge strides in the IBD world. I do
41:56
think that people who have the milder conditions
41:59
that are manageable, I think if we catch it early
42:05
on, I do think that people can, there will be
42:09
a cure for those people. I do think that IBD
42:11
is a spectrum, it ranges. So yes and no. I think
42:16
for some people, we definitely can have a cure
42:18
and mitigate their early stages. More complicated
42:21
situations, I think, will be a little more lifetime.
42:26
That's still enough hope for me. So I'll take
42:28
it, you know, and then we'll see how it goes.
42:29
And, you know, I agree with you. I think you're
42:32
absolutely right. And then, of course, you know,
42:34
on the other part, let's hope that science will
42:37
advance quickly enough to... to help the more
42:41
serious conditions as well. Well, Leah, thank
42:45
you so much. This was really great. I love the
42:47
fact that you're so open about it. I really enjoy
42:50
your story of going from a nine -year -old who's
42:54
basically being told that she has this certain
42:56
condition to somebody who actually works in that
43:00
same field later on. So that's really, really
43:02
inspiring. So keep doing that. Keep helping people
43:05
and keep on singing and dancing, even if it's
43:07
just in your room, you know. with yourself. I
43:09
think that is the right spirit to have when we're
43:11
faced with such adversity. So thank you so much
43:14
again for being on the show today. It was really
43:15
a pleasure to talk to you and I wish you nothing
43:17
but the best, you know, moving forward. Thank
43:20
you so much for having me. I've enjoyed this.
43:23
That's it for today's episode of Talking S***
43:25
presented by Colitis Unfiltered. I'm Frank Tabering
43:29
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43:32
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43:42
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