Latest / Crohn's & Colitis Unfiltered / The long way to diagnosis and recovery: Sarah's ostomy marathon

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The long way to diagnosis and recovery: Sarah's ostomy marathon · Crohn's & Colitis Unfiltered

0:02
It's given me a lot of perspective on life and
0:06
I think also like resilience just in like my
0:11
daily life things because nothing I go through
0:16
feels as bad as what IBD has put me through.
0:20
So I just feel like I'm able to get through those
0:23
things because I've already been through worse.
0:26
This is Sarah. who after eight long years of
0:29
suffering, finally got diagnosed with ulcerative
0:31
colitis at age 23 in Washington, D .C. Sarah
0:35
started dabbling in treatments, but the damage
0:38
to her colon was already done. And in 2024, she
0:41
woke up with an ostomy. Today, on the Colitis
0:44
Unfiltered podcast, Sarah tells us all about
0:47
her IBD journey, complications, surgery, and
0:50
taking her life back. My name is Frank Tabering,
0:53
and Sarah, welcome to the show. Hi, thank you
0:56
so much for having me today. And thank you for
0:59
taking the time to speak to me specifically about
1:02
your IBD journey. Let's just go straight into
1:05
it and right to the beginning. Let's start with
1:08
symptoms. What was it that, you know, happened
1:12
to you where you noticed that something was wrong,
1:15
something was off, something that prompted you
1:17
to go out and seek some medical care? very first
1:26
symptom because it was very sudden and very severe.
1:32
So I was about 15 and all of a sudden I became
1:40
really nauseous and I had thrown up like 15 times
1:43
in a day. So I went to the hospital. And was
1:47
having really horrible stomach pains. And I was
1:51
hospitalized for, I think, about three days.
1:54
And nothing came of it. They just said, oh, your
1:58
stomach hurt. Maybe you had a food infection.
2:02
And then... After that, I started having recurring
2:06
symptoms where I was having frequent bowel movements,
2:08
a lot of stomach pain, and it would come and
2:12
go. For me, for some reason, I always had flare
2:14
-ups between February and August every single
2:17
year. No doctor can explain why, but in the winter,
2:21
I was always fine, and in the summer, I would
2:23
have horrible flare -ups. And because of that,
2:26
I think no one would diagnose me with ulcerative
2:29
colitis. because ulcerative colitis usually doesn't
2:32
follow in seasonal pattern but it was never food
2:37
allergies for me and so through the years it
2:41
just kept getting worse and my symptoms would
2:44
worsen and I was in so much pain I would lose
2:47
a ton of weight when I was in my flare -ups and
2:51
that was always just really difficult for me
2:53
because I always wanted to be active and I couldn't
2:56
be active when I lose all this weight and I couldn't
2:58
eat and I was throwing up and having so many
3:00
bowel movements. So I'd go to doctors and I remember
3:04
they would tell me, oh, you just have an eating
3:06
disorder. And I didn't have an eating disorder,
3:08
but because I became really thin and I would
3:11
say I was having difficulty eating and I'm like
3:13
throwing up after eating, I had several GIs telling
3:16
me, oh, it's probably just an eating disorder.
3:19
Over the years, I had many colonoscopies when
3:23
I was in a flare and they would say that there
3:27
was mild ulceration, but it's probably just IBS.
3:31
I don't know why they would think it's just IBS
3:34
if I had ulcers. So at about 16, I basically
3:40
self -diagnosed myself with ulcerative colitis
3:43
because I just knew. Based on my symptoms and
3:46
research, I knew and I kept asking doctors to
3:49
look into it. And I kept getting the eating disorder
3:53
answer or it's just IBS. So, and then in 2021,
4:01
I went to law school in Washington, D .C. And
4:04
my second year into law school, I got appendicitis.
4:10
And when they took out the appendix and the pathology
4:14
report came back that I had a tumor in my appendix
4:17
that caused the appendicitis. So in order to
4:22
rule out that there was no cancer anywhere else
4:25
in my intestinal tract, I had another colonoscopy.
4:29
And during that colonoscopy, they diagnosed me
4:32
with ulcerative colitis, which they said there's
4:35
no more tumors, which is really exciting, but
4:38
that I did have ulcerative colitis. And that
4:41
was such a relief to hear because I knew for
4:46
so long. And I was having these horrible symptoms.
4:49
And I was so excited because now I could finally
4:51
get treatment. And I didn't know, I guess, what
4:57
ulcerative colitis could consist of other than
5:00
I was scared that I needed to manage it so I
5:04
didn't get colon cancer. But other than that,
5:07
I didn't know what it would consist of other
5:10
than needing to go to the bathroom many times
5:12
a day. Wow. A long journey before you were diagnosed.
5:18
And if I did my math right, that means that between
5:21
age 15 and age 23, you never received an official
5:26
colitis diagnosis. Am I right? Yes, and no treatment
5:30
at all. Well, that's insane. I mean, I recently
5:35
talked to somebody who made a very good point
5:37
in saying that not every GI is specializing in
5:41
IBD, right? Because, I mean, we have this...
5:43
idea of a gastroenterologist just being knowledgeable
5:47
enough to pick up on a colitis or Crohn's diagnosis
5:51
just by doing colonoscopies. So what you're saying
5:53
is that you've had several colonoscopies before
5:56
actually having another colonoscopy that gave
6:00
you the official diagnosis, right? Yes. Wow.
6:04
So you said that you sort of self -diagnosed
6:09
earlier on, which basically means that you've
6:13
certainly came in contact with the term ulcerative
6:16
colitis but when at 23 when at 23 your doctor
6:21
at that time officially handed you the diagnosis
6:24
what went through your mind because obviously
6:29
i think ulcerative colitis was not a completely
6:31
strange term to you so were you were you more
6:36
on the calmer side were you surprised like how
6:39
did you process that mentally I remember just
6:42
feeling a lot of relief that I had a name and
6:49
like a label for what I was going through because
6:52
it had been so many years of like really suffering
6:58
with these GI issues and trying so hard to find
7:02
an answer. So it kind of just felt like I was
7:05
able to, like the puzzle was finally put together.
7:10
like, just diagnosing yourself with an autoimmune
7:14
disease does not get you treatment, and I kind
7:17
of sometimes just didn't believe myself because
7:20
it would go away, and I didn't understand, like,
7:23
flare -ups that sometimes you are perfectly fine,
7:26
and then other times you're gonna shit your pants
7:29
on the way to the supermarket. So, like, I, whenever
7:35
I would, like, improve. I just like no longer
7:39
believed myself that I was sick. So getting that
7:42
diagnosis was just such a relief. And I remember
7:47
just being really excited that I was going to
7:49
be able to be treated. Absolutely. Okay, so diagnosis,
7:55
well, official diagnosis at age 23. Now take
8:00
us through the journey from there to where you
8:04
are today. That was a crazy journey. I think
8:12
it was January 2023 I was diagnosed, and then
8:20
by July 2025 I had an ostomy. So January 2023
8:27
I was put on a round of prednisone, which...
8:32
I loved because I had lost so much weight and
8:35
then I was able to eat like three pizzas in one
8:37
go. So I was like, oh, I'm going to be able to
8:39
like regain all this weight. And it was awesome.
8:43
And then I was put on mesalamine, the oral mesalamine.
8:49
So it's like the six giant pills a day. And I
8:53
had taken the mesalamine for maybe like six months.
8:58
And then I didn't realize how bad ulcerative
9:02
colitis could get, and I thought, well, I've
9:06
lived with it for this long, and I don't feel
9:08
like taking six huge pills a day. So I stopped
9:12
taking the mesalamine, which probably was not
9:14
the best decision, but I just, I didn't know
9:18
how bad it could be. And then through law school,
9:23
I think the stress just really exacerbated my
9:27
IBD, and then I So I was like in a non flare
9:32
up. I was using the bathroom probably 12 times
9:35
a day. So I'd be leaving classes coming back.
9:39
I'd probably leave each three hour class like
9:42
four times to go have a bowel movement. So that
9:47
was pretty difficult. And just through law school,
9:53
which was during my diagnosis, I just kept. deteriorating
9:58
but kind of like fighting that so that I try
10:00
to fix it with like my diet and I went on like
10:05
an anti -inflammatory diet and I tried the low
10:09
FODMAP diet and now I'm really working but then
10:15
I went into like the season where I had less
10:20
flare -ups and I started to improve a bit and
10:23
I remember my very last flare I had started around
10:29
Christmas. I had this milkshake and I remember
10:31
the milkshake just like I had the worst stomach
10:35
cramps from it. And I remember just like literally
10:38
crying on the toilet. It was so painful and horrible.
10:42
And then it never went back to normal. So then,
10:46
I mean, I think I ended up like pooping in my
10:52
pants. four times in several months when I was
10:56
out in public, which was horrible. And then I
11:00
was about to graduate law school and I was in
11:04
the worst flare up of my life. It was so painful
11:10
that I became like bedridden. And right before
11:16
graduation, I was like, I need to get through
11:19
graduation. Like, can I please have steroids?
11:21
So I got steroids that day and I started a prednisone.
11:24
So then actually the night I graduated, we went
11:28
and had this like amazing pasta dinner and I
11:30
came home and I was in so much pain that I was
11:33
like screaming and crying on my couch and in
11:36
the bathroom. So eventually I went to the hospital
11:41
because I couldn't take it anymore. Like I couldn't
11:44
eat, I couldn't drink. So that was the first
11:48
of my admissions and that was over in may um
11:53
and so i was there for a week and they started
11:56
me on remicade and so i was on remicade and iv
12:02
steroids and i started to improve so they sent
12:06
me home and then within two days i was in a ton
12:10
of pain arrived at the er like screaming and
12:14
like begging for pain medicine because I was
12:17
in so much pain so then I was admitted again
12:21
and they did an endoscopy and a colonoscopy and
12:25
then the next day I was already discharged because
12:29
I improved pretty quick that time so then I was
12:34
within a week, readmitted again, but at a different
12:37
hospital where my GI had privileges. So I thought,
12:41
maybe I'll try here because I really trust my
12:43
GI. And if his team's able to treat me, maybe
12:47
it'll be a better outcome. So within the first
12:53
two days that I was admitted there, the GI told
12:58
me that I needed to talk to the surgeon, which
13:01
was absolutely terrifying. I didn't, know what
13:05
surgery for ulcerative colitis would even be.
13:08
I was on a ton of steroids and then they did
13:13
another colonoscopy and my intestine looked terrifying
13:18
looking. Like it was so ulcerated and so far
13:23
away from what a normal colon looks like. It
13:27
looked like it was like, it was just bright red
13:29
with like a spider webs looking all through it.
13:33
It was terrifying, like Wagyu beef, basically.
13:38
It's not supposed to look like that. He told
13:45
me it was time to talk to the surgeon. She actually
13:50
gave me a really positive perspective on what
13:54
life with an ileostomy would be, about how I
13:58
would be able to do anything. My life could look
14:02
exactly the same as it does now. And obviously
14:05
some people have difficulty with the surgery
14:09
and their bodies don't react well. And you're
14:12
going to have just a range of like side effects.
14:16
And so she told me all about those. And I don't
14:20
think I spoke at all that entire first meeting
14:25
with her because I knew if I spoke, I was going
14:27
to start crying. I was just... I just, I couldn't
14:31
speak because I didn't want to cry in front of
14:34
someone I just met. And it was just so much and
14:38
so difficult. But I was admitted for 12 days,
14:42
that admission. And she came, I think, eight
14:46
or nine of those days. And we would meet almost
14:49
every day and talk about my questions about the
14:53
surgery. That was extremely helpful. I was able
14:58
to like build this really wonderful bond with
15:01
the colorectal surgeon. But I ended up leaving
15:05
the hospital that time because once again, I
15:08
improved. And so I was like, wow, it was amazing
15:12
meeting this doctor, but I hope I never see her
15:14
again. And then within two days, I had... it's
15:22
like 104 fever I couldn't stand with like without
15:26
almost fainting and the pain was so bad I remember
15:30
I called my mom and said that we need to get
15:34
in contact with the surgeon because I wanted
15:36
to rip out my colon myself so because I was I
15:42
couldn't even drink water and my heart rate was
15:44
so high and had a fever so I went back to the
15:48
hospital under the advisement of my GI and he
15:51
said there's no other options. We need to get
15:55
you back to the hospital and you need to have
15:58
surgery. So then I went back to the hospital
16:01
and I was too unstable to operate on immediately.
16:05
So I got a PICC line with the TPN nutrition and
16:11
I was on that for a few days to help me like
16:14
regain some strength since I hadn't ate pretty
16:18
much in weeks because Every time I'd talk to
16:21
the doctor and I was hospitalized, they'd put
16:24
me on NPO. So I probably only ate a few times
16:28
within a month. So I was back in the hospital
16:31
and we're like planning on a surgery date and
16:34
just getting all my vitals under control. And
16:38
then finally on July 5th, 2024, I got my ostomy.
16:45
And I remember I was very excited because I'd
16:50
I just remember I was going to wake up and be
16:53
pain -free, which is not exactly what happens
16:55
after abdominal surgery, but you don't have ulcerative
16:59
colitis pain. So there's, you know, win some,
17:02
lose some there. Wow. So you prefaced your answer
17:06
by saying it was quite the journey. So yeah,
17:08
it definitely sounded like quite the journey.
17:11
We always say, let's not dwell on the past, you
17:14
know, life moves on. let's accept the past as
17:18
it is but as humans we we cannot help but sometimes
17:21
being pulled back by regrets right or or nostalgia
17:24
in this case you know i i want to focus more
17:27
on regrets and you looking back now do you think
17:32
that potentially today you could still have a
17:34
colon or relatively healthy colon had you not
17:38
stopped medication on your own accord i thought
17:41
about that a lot when right before surgery and
17:47
the months after surgery. And I'm not sure. I
17:54
think it is definitely possible I wouldn't have
18:00
needed an ostomy because maybe I could have stayed
18:03
in remission and my colon gotten healthier because
18:07
I know that does happen for many people that
18:09
they're able to manage well with medications.
18:14
I thought about that a lot and then I realized,
18:19
well, I can't really go back. And I hated, I
18:24
think what made me feel better is I hated the
18:26
pills and managing an ostomy is easier than managing
18:31
those pills was, at least my ostomy. So I think
18:36
that's how it made me feel a little bit better
18:38
since I can't go back is realizing I'd rather
18:41
change a bag than... Take six giant pills. I
18:45
think for me, I no longer feel regret. I definitely
18:48
felt a lot of regret in the beginning because
18:51
I think, at least for me, the news of meeting
18:58
an ostomy and then relearning how to do life
19:03
in the beginning was very difficult, just mentally.
19:07
It's a huge life change. Your body completely
19:11
changes. It's not the body you've always been
19:14
seeing. A stoma looks a little scary at first
19:17
until you're used to it because your brain's
19:20
not used to being able to see an intestine. So
19:24
that's a terrifying thing to see. So I think
19:28
with all those things, I did feel a lot of regret
19:30
because I wanted my body to be how it was before.
19:37
I think after a while, I just really grown to
19:40
love my ostomy and my life with my ostomy. And
19:43
I've never in my life been this healthy. I'm
19:49
able to be so active because I don't have the
19:52
fatigue from ulcerative colitis. I'm never worried
19:55
that I'm going to like poop my pants while doing
19:58
something. I'm not in pain ever. It's insane
20:03
to have gone. over a year, like a year and a
20:06
half almost now without any intestinal pain,
20:10
that is just mind blowing for me. I haven't experienced
20:13
that since I can't remember much of how my stomach
20:17
felt before 15. So I just, what I do remember
20:21
is the many hours I sat on the toilet and in
20:24
pain. So I think just now focusing more on my
20:29
life with my ostomy helps a lot. And so I no
20:37
longer feel regret. But I definitely did in the
20:40
beginning when I was just working through all
20:43
the feelings with getting an ostomy. Sure. Absolutely.
20:47
Absolutely. So you've grown as a person and you've
20:50
grown to accept your fate in a sense. You touched
20:54
on it. So we're right at the present now. You're
20:58
living with an ostomy. There's a misconception
21:00
sometimes that having surgery is a cure, right?
21:05
And a lot of people with ostomies, they still
21:07
occasionally experience symptoms. I mean, sometimes
21:10
more with Crohn's than with colitis potentially.
21:12
Tell us now, how are you feeling today? Do you
21:15
have any challenges in terms of just purely medically?
21:18
Because I mean, living with a stomach can present
21:20
its own little challenges here and there. But
21:22
so just medically, physically, what's your life
21:25
like right now post -surgery? So medically, I
21:30
do not have any problems currently. Right after
21:34
surgery, I did have a lot of complications, which
21:38
we can, we can touch on that next. But present
21:42
tense, I don't have any, any issues. I mean,
21:48
I have no recurrence of my ulcerative colitis.
21:54
I have no other The extra intestinal manifestations,
22:00
I haven't personally dealt with any of those.
22:03
For me, it's just given me a lot of physical
22:08
strength and stamina. So, like, tomorrow I'm
22:11
actually running a 10 -mile race. I wasn't able
22:14
to run before getting an ostomy, and now I can
22:19
run for 10 miles straight, which is really exciting
22:22
for me. And other things, I'm able to hike long
22:28
distances and do things that are very physically
22:33
challenging without it being extremely taxing
22:37
on my body. Before I got my ostomy, if I was
22:41
even like had prolonged stress, like for even
22:46
an exam, I would get like flu -like symptoms.
22:50
And I used to call it like fake sick. So anytime
22:53
I was stressed, I would get fake sick. And I
22:56
haven't gotten fake sick in over a year. So I
23:01
think, at least for me personally, it's only
23:05
brought like positive physical health. So I'm
23:13
correct to assess then that. having a surgery
23:18
and living with an ostomy gave you your life
23:20
back, right? Yeah. Yeah, it gave me a life I
23:24
didn't know I could have. And so obviously the
23:29
idea here is to break down the stigmas of fear
23:32
surrounding surgeries. A lot of people who have
23:35
not had surgeries yet, right, but may not have
23:38
a choice moving forward. You did say you had
23:41
some complications, and I want to talk to you
23:45
about those because, you know, I think it's part
23:47
of the journey. And again, this is not to scare
23:49
other people, but it doesn't mean that it happens
23:51
to everybody either, right? But yeah, take us
23:54
a little bit through then how your journey evolved
23:57
right after surgery, before you arrive at the
24:00
present day where you actually feel really great.
24:02
So I, right after surgery, I think within a week,
24:08
I hadn't been discharged yet because I got an
24:12
ileus, which is basically where part of your
24:17
intestine is paralyzed. The gut motility stops.
24:20
And so you're more prone to a blockage. So some
24:24
food I had ate wasn't able to pass because my
24:28
intestines were not moving. So I ended up with
24:32
a blockage. And... They tried to irrigate it
24:38
through the stoma. So they would stick like a
24:41
catheter into the stoma, which doesn't hurt at
24:45
all. There's like some slight pressure as if
24:47
someone's pressing on your stomach, but it's
24:50
not painful. And they would put water into it
24:55
and then pull the water back out to try to pull
24:59
the blockage. That was able to relieve some of
25:04
the pressure for me. I would get that done like
25:06
twice a day, but it was not clearing the blockage
25:11
at all. And then I think it was about seven days
25:17
post -surgery, I spiked a fever and my heart
25:23
rate was extremely high. I think it was like
25:27
while I was trying to sleep, it was at 150. which
25:30
it should not be at 150 when you're at complete
25:32
rest. So one of the nurses called a rapid code
25:37
and that was quite terrifying because there was
25:41
like 30 people in my room in the span of a minute
25:44
all of a sudden. And then I think I got a CT
25:51
scan that showed my bowel had perforated. where
25:55
the blockage was, which is what caused the heart
25:59
rate and fever. So the next day I had a resection
26:04
of that part of my intestine, which luckily it
26:08
was a part of my intestine closest to my stoma.
26:11
So they didn't have to reconnect any bowel. They
26:15
ended up just, I don't know how to describe it,
26:18
but I guess pulling the stoma out with that part
26:21
of the intestine and then making a new stoma.
26:24
So then after that, I was doing really well.
26:27
I think a week or two after that, I went home.
26:33
And then within 24 hours, I spiked a really high
26:40
heart rate again and had, I think, 103 fever.
26:45
And that was really confusing because I had been
26:48
doing really well for days. But all of a sudden...
26:52
I was not good. And then I had to take an ambulance
26:57
to the hospital because I couldn't stand up.
27:00
If I tried to stand, I felt like I was going
27:02
to faint. And I think I would have if I tried
27:06
to stand for too long. So I didn't feel safe,
27:09
my family taking me to the hospital. So we took
27:13
an ambulance. And due to my symptoms, they said
27:17
I had severe sepsis, which I'm still not sure
27:21
if they ruled that out or not because my chart
27:25
is all over the place. So I potentially had severe
27:29
sepsis and due to my symptoms and the CT scan
27:37
that had said suddenly all of my intestines were
27:42
inflamed. that the CT technician thought I had
27:50
Crohn's and I've never had a history of Crohn's,
27:52
but because everything that was left was inflamed,
27:56
my surgeon said we needed to immediately go into
28:00
surgery to just see what's going on. So the original
28:05
plan was to just pop a camera in there and see
28:09
what's going on. And so it was going to be just
28:12
a laparoscopic exploratory surgery, but they
28:17
couldn't fit the camera in my abdomen because
28:20
the pressure was so high that I ended up with
28:25
a full laparotomy, which is like, now it's like
28:29
a six inch scar, not maybe longer, but they opened
28:33
me up. And as soon as I was open, they said my
28:37
heart rate started to decrease. And based on
28:40
those symptoms, it looked like abdominal compartment
28:43
syndrome caused by post -colectomy panenteritis.
28:48
And they found no cause. There was no cause whatsoever
28:59
for this inflammation, even though they checked
29:02
all of my intestines. So they ended up leaving
29:06
me open. And put me on a ventilator in the ICU
29:10
for a few days so that my abdomen could decompress.
29:15
And then I had two more surgeries to slowly close
29:19
up my abdomen after. So my second complication,
29:24
I guess, was just a lot of inflammation and pressure
29:28
that had built up in my abdomen. And they don't
29:31
know why. There's only been a few cases of this.
29:35
Although it was really scary and I think it sounds
29:38
really scary for someone going into surgery,
29:42
this is not something that happens often whatsoever.
29:46
It was very rare and very confusing even for
29:50
the doctors. But luckily they, you know, were
29:56
able to figure out how to treat it. And other
30:00
than needing to be on a ventilator for a few
30:02
days, which I was awake and that was not fun.
30:05
In the end, it ended up being okay. And I'm very
30:11
thankful for the doctors I had. You paid quite
30:15
a hefty price to get to where you are today,
30:19
obviously, based on just listening to you. So
30:22
now I'm really interested in hearing you explain
30:26
to me how you stayed sane mentally throughout
30:30
those surgeries, hospital stays. the complications
30:34
and not just staying sane mentally, but how did
30:38
you manage to hold on to hope that you would
30:41
get better, that, you know, you would actually
30:43
pull through and, well, walk again, right? Like,
30:48
how did you deal with this? Where did you get
30:50
the strength from? So in my surgeries before
30:53
the final set of them were, I needed to be on
30:57
a ventilator in the ICU. I had a lot of hope.
31:02
And I just like, it never crossed my mind that
31:08
I wouldn't be okay. And I think I was just so
31:10
excited for what my new life was going to be.
31:14
And there's a lot of free time when you're sitting
31:18
in the hospital. And so I kind of just planned
31:21
out activities I was going to do when I was better.
31:24
I mean, I had planned like I wanted to dye my
31:26
hair even, like little things, like go to a park
31:29
with my friends. spend time with my dog again
31:32
because I couldn't see my dog when I was in the
31:34
hospital. So I just kept making plans for after,
31:39
even though I ended up having to cancel all of
31:41
those plans because I didn't realize how long
31:43
it would take to recover from surgery. But it
31:46
did help me a lot to continue to make all of
31:49
these plans. But even during that time, it was
31:53
still really hard because No matter how often
31:57
your family and friends visit you, you're so
32:00
isolated because you're stuck in the hospital.
32:04
And it's so hard to just be stuck and have basically
32:14
nothing to do until someone comes and visits
32:17
you again. And so that would really get to me
32:20
and all of the days kind of run together. And
32:23
somehow they eventually start going very quickly.
32:27
So I woke up, ate breakfast, and then it somehow
32:30
felt like it's already 4 p .m. And I'm like,
32:33
well, I haven't gotten to do anything today.
32:35
But you can't do anything. So when it's three
32:39
months of that, it really gets into your head.
32:42
But then... After the last three surgeries and
32:47
after I had been on a ventilator, I honestly
32:52
did lose all of the strength I had to continue
32:56
fighting. It was really scary for me to be on
33:01
a ventilator. And after I was taken off, I was
33:04
actually hallucinating for a few days. So anytime
33:08
I closed my eyes, I... would like start to see
33:12
like figures like even if I blinked for too long
33:15
so then I stopped sleeping until they were able
33:19
to give me like sedatives so then being like
33:22
sleep deprived and like in a ton of pain I just
33:26
kind of like lost all the strength and I was
33:31
like crying all the time I was I was honestly
33:34
really struggling so I think I remember like
33:37
thinking back to then All my friends were texting
33:40
me that I'm so strong. And I just remember thinking,
33:46
but, like, I'm not. Like, at that point, it felt
33:49
like my doctors were really strong. Like, they
33:51
were the ones fighting. I was just there. And
33:55
they kept fighting for me. So I am very thankful
34:02
for... Also my family and friends who continued
34:06
to check on me and support me during that time
34:09
because it felt like it was my medical team and
34:13
my support system who were the ones who were
34:15
strong and who were fighting for me when I no
34:18
longer could. And yet you did in your own way
34:21
because I always say those around us, they...
34:25
Help us with the strength, but you yourself,
34:27
your mental capacity, your body, you're certainly
34:32
contributing, right? Yeah. Now, symptoms at 15,
34:37
diagnosis at 23, surgery, ostomy today. You were
34:42
very young, so you went through all of this while
34:45
you're growing up to a crucial stage in your
34:47
life, right? Teenage years and then becoming
34:49
an adult. Looking back. at this quite extensive,
34:55
quite hard journey, how has your IBD changed
35:00
you as a person, you think? It's given me a lot
35:04
of perspective on life. And I think also like
35:10
resilience, just in like my daily life things,
35:14
because nothing I go through feels as bad as
35:19
what... IBD has put me through so I just feel
35:22
like I'm able to get through those things because
35:25
I've already been through worse and I think it's
35:29
also on the funny side it's giving me a great
35:31
sense of humor I think it's like just really
35:35
been able allowed well that's not allowed me
35:39
but made me be very comfortable with myself because
35:43
the choices were either be very uncomfortable
35:45
with myself or to be extremely comfortable with
35:51
myself. And my brain ended up choosing the latter.
35:56
So I am the friend who everyone comes to to talk
36:01
about their poop. So my friends who do not have
36:05
IBD, don't have any kind of stomach problems,
36:09
they will tell me about when they've had a weird
36:11
poop, when their stomach hurts, just about poop
36:15
in general. So I just make people feel very comfortable
36:19
about it. And so I get the extremely TMI conversations
36:24
with my friends. And I think I do appreciate
36:29
that it's made people feel comfortable with vulnerable
36:33
topics with me. But I guess on the negative side,
36:37
it has, for like many years, it made body image
36:42
very difficult. Because... I always wanted to
36:48
be like strong in the gym and to like gain weight.
36:52
And then every time I would have a flare up,
36:56
I'd lose all of the strength and I would get
36:59
really thin. And for some reason, my brain decided
37:07
to think that when I lost weight, I was no longer
37:10
lovable. So then it just felt... Like I was in
37:15
this cycle of like trying so hard to like feel
37:22
like my body was like physically like pretty
37:29
enough for to be lovable. But then my body would
37:33
betray me and I would lose all that weight and
37:38
then no longer feel lovable again. And then I'd
37:40
feel like I would need to hide. And I think there's
37:44
like, you know, obviously there is so much of,
37:50
you know, people want to lose weight and like
37:54
being thin isn't seen as a bad thing. But then
37:56
I think when you're sickly thin, it's a little
37:59
bit different. And I was always looking sickly
38:03
thin where I have friends who Well, not friends,
38:09
but people in school who tell me to eat a burger
38:11
and my little brother as a joke would call me
38:13
like Skeletor, which I love him and that's fine.
38:16
I think just little siblings bully you, but stuff
38:20
like that. And then I remember I would have like
38:23
previous boyfriends when I was younger who would
38:25
tell me I should just like gain weight and like
38:27
have curves like the other girls. But then I
38:29
would get sick and lose all of my weight and
38:33
then I couldn't. So I was really mad at my body.
38:38
for a long time because I felt like it was keeping
38:41
me from being lovable. On your Instagram feed,
38:46
you once made a post, I think not too long ago,
38:49
where you described a few statements. And if
38:56
you're okay with it, I'm going to read you about
38:57
four of these. And I would like to get a very
39:00
brief perspective because it's one thing for
39:03
us to write something, but then I think it's
39:05
a different thing of... hearing basically what
39:07
we once wrote, right? Coming back to us when
39:10
somebody else read it. So I'm going to read each
39:12
one, but we're going to do it one by one. And
39:14
you just give me sort of like your quick short
39:16
insight into what you feel and how you feel about
39:19
those today. All right? Okay. The first one you
39:24
wrote, having a leostomy doesn't stop me from
39:27
anything. And I feel like that one is still...
39:35
true for me. I can't think of any time after
39:42
I recovered from surgery, because recovering
39:44
from surgery is something completely on its own,
39:47
but there hasn't been anything it's stopped me
39:52
from doing. I'm actually able to do so much more
39:57
than I was able to before. I mean, with activities,
40:03
with work, making new friends, intimacy, there's
40:08
been nothing it's stopped me personally from
40:11
being able to do. That's great. The second one,
40:15
you talked about it at great length. And I think
40:18
what you said is great. So I'm going to read
40:20
it, but no need to comment. We can skip because
40:22
you mentioned it. I'm still lovable. You definitely
40:25
talked about that one. So let's get to the next
40:27
one. I am not the sick friend. I wrote that one
40:32
because before surgery, I was so scared of being
40:39
the sick friend. I didn't want, when I was at
40:44
a gathering of people, to be the person that
40:51
they were like, oh, we can't do things because
40:54
of Sarah. Or like, Sarah is a problem. Because
40:59
she's disabled, which is a horrible way of thinking.
41:02
But I was scared. I was, I can't control the
41:05
way people think. And this is the way some people
41:08
do think. So I was so scared that people weren't
41:12
going to want to be around me because I was going
41:14
to be the sick friend. And I realized before
41:21
surgery that one, I already was the sick friend.
41:28
I mean, I was always needing to use the bathroom.
41:30
I was always sick because of IBD, even if it
41:33
was like fake sick. And so I always had to cancel
41:38
plans because I wasn't feeling good. So my therapist
41:42
was the one who told me, but Sarah, you already
41:45
are the sick friend. And that call out kind of
41:49
made me feel a little better because I realized
41:52
everyone in my life does still love me, even
41:58
though I have always canceled plans. I've always
42:03
needed accommodations for our hangouts or to
42:05
find the nearest bathroom. Like, our activities
42:09
would be suddenly stopped because we need to
42:13
emergently find a restroom or, like, I need to
42:16
go to the restroom in someone's front lawn, which
42:18
has happened multiple times. So, even though
42:23
all of... that has happened. I've never lost
42:26
a friend from it. And it's, for me, it's only
42:31
created funny stories with my friends or like
42:33
bonded us. So I think realizing like, even though
42:39
I was the sick friend, it didn't change the way
42:44
people loved me. And so I think that statement
42:48
is that Even if I am the sick friend, no one
42:56
sees me as the sick friend. Like that's not my
42:59
identity to my friends. I am just their friend.
43:04
Last one, you wrote, my body is not ruined. I
43:10
was also really worried about that one before
43:12
surgery. I, as someone who before surgery was
43:18
in a really toxic cycle with my body and never
43:21
happy with my body. I just thought that this
43:27
was going to make me so ugly and it was going
43:30
to ruin my body and I was never going to look
43:33
pretty again. And then I will, before surgery,
43:42
I was also talking to my therapist about it and
43:44
we were talking about how all of the different
43:48
things in life. how your body will change. So
43:51
as I get older and have different experiences,
43:54
have kids, get injured at some point, my body
43:58
is going to constantly be changing. And that
44:04
doesn't mean it's becoming ruined. And I think
44:09
now when I look at my body, I don't view it negatively
44:15
ever. I... I like my laparotomy scar. Now I think
44:21
it looks cool because now when I'm in the gym,
44:24
I don't have abs, but I have a really cool scar
44:28
when I'm in a sports bra. And I think that looks
44:32
cool. And now when I look at my bag or I have
44:36
the top of my bag out when I'm wearing certain
44:39
pants, I don't ever look in the mirror and think,
44:44
oh, my body's ruined now. kind of view it almost
44:50
like an accessory like to me i think it makes
44:53
my body look cool and it's different and but
44:57
not in a bad way so most of these statements
45:03
all these statements still feel true to you now
45:06
which is really really great i think what you
45:09
just said about your body and your ostomy and
45:13
what it looks like today. I think that's a really
45:15
positive and a hopeful message. And of course,
45:18
we want to always end on a hopeful note. But
45:20
before we end, before we actually also look into
45:22
the future, I want to travel back in time with
45:25
you one last time. And I want you to tell me,
45:29
and you can pick either one, either pick diagnosis
45:33
day, the official diagnosis when you were 23,
45:36
or you can pick the 15 -year -old you when the
45:40
symptoms started. So pick one of the two and
45:42
then tell me if you could speak to yourself at
45:46
15 or at 23, what would you say? I think I'd
45:52
pick the 15 year old me. And I would want to
45:58
tell her that she's going to go through a lot,
46:02
but she's also going to learn a lot through it.
46:05
And even though there's going to be a lot of
46:07
ups and downs. It's really going to be a journey
46:13
and there's so much that's going to come from
46:19
it. So everything she will go through has a purpose
46:24
and will help her become the best version of
46:29
herself that she'll reach later on. Sound advice.
46:32
I like the way you put that. So now that we've
46:36
looked in the past one more time, let's look
46:37
into the future. This is a tough one to answer,
46:41
but everybody sort of has at least a feeling
46:43
about this one. And that's why I like to keep
46:45
asking it. And that is, do you think we will
46:49
see a cure to IBD in our lifetime? I don't. There
46:55
are so many different causes of IBD, it seems.
47:00
And I think maybe we'll be able to cure some
47:06
of them by figuring out what the root of it is.
47:09
But I don't think there'll ever be a one -size
47:12
-fits -all cure. So I'm honestly not sure. I
47:18
have a feeling that no, only because IBD is so
47:24
different for so many people and can be caused
47:28
by so many things. But I do think like with research,
47:32
maybe some of the reasons that IBD... comes about
47:38
maybe they'll be able to find a cure for those
47:40
that's a good way to put it so sarah your story
47:46
is definitely one of resilience but also a very
47:50
deep introspection so i want to thank you so
47:53
much for taking the time today to share your
47:55
journey a lot of inspiration to find in there
47:58
and i'm very happy that you are at a stage now
48:02
where you were able to reclaim your life and
48:05
I wish you nothing but the best moving forward.
48:07
And thank you again for being with us today.
48:10
Thank you. And thank you for letting me talk
48:13
shit with you. That's it for today's episode
48:15
of Colitis Unfiltered. I'm Frank Klebring. And
48:19
if this hit home or hit your gut, do us a favor.
48:22
Subscribe to the show and follow us at Colitis
48:25
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48:31
inspiring stories from the bathroom floor.