Latest / Crohn's & Colitis Unfiltered / Ulcerative colitis, surgery and humor: Janelle’s decision to let go

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Ulcerative colitis, surgery and humor: Janelle’s decision to let go · Crohn's & Colitis Unfiltered

0:02
As I've gotten older, I've matured as well. When
0:07
I was in my 20s and I had ulcerative colitis,
0:09
I thought, why me? Why do I have to deal with
0:12
this? But now it's like, oh, wow, I was given
0:15
that because now I can help someone else. And
0:19
I feel I have more empathy. I have more compassion
0:24
towards others. If I didn't have this, would
0:28
I be that kind of person? I don't know, but it
0:31
has made me, in hindsight, I feel like a better
0:36
person in the end. This is Janelle, who got diagnosed
0:40
with ulcerative colitis at age 25 in Milwaukee,
0:43
Wisconsin. For years, Janelle navigated flares
0:46
and remission until the day her body stopped
0:49
fighting back. Janelle eventually opted for surgery,
0:52
which gave her her life back. Today, she opens
0:55
up about how she handled the emotional rollercoaster.
0:58
and how humor got her through the worst. This
1:01
is Talking S***, presented by Colitis Unfiltered.
1:04
My name is Frank Tabering, and on this podcast,
1:07
we talk all things IBD. So Janelle, ulcerative
1:11
colitis, age 25. Let's go back to the beginning,
1:15
to where it all started, even before the diagnosis.
1:18
Tell me a little bit about your first symptoms.
1:21
And also when you noticed that something was
1:24
just off, something was wrong, something prompted
1:27
you to seek medical help. Yes. So around the
1:30
age of 23, two years before my diagnosis, I started
1:35
seeing some really weird things coming in when
1:40
I would defecate. It was like white pieces of
1:46
something. I just didn't know what it was. I
1:49
thought it was really weird. And I thought, okay,
1:51
well, maybe I'm lactose intolerant. You know,
1:55
I was having some problems with my dairy. So
1:58
I cut out all lactose. Still was having issues.
2:02
Still was seeing this white discharge coming
2:05
out in my bowel movements. Fast forward a year,
2:10
I now started seeing blood coming out of with
2:15
my feces. And it kind of scared me. I went to
2:20
go see my doctor. She referred me to a gastroenterologist.
2:24
When I called them, they told me that I wouldn't
2:27
be able to come in for six months because I was
2:31
a new patient. And I said, I don't think I have
2:33
six months. Because at that point, I thought
2:37
I was having cancer. Who bleeds from their rectum?
2:42
I'm 25 years old. I don't know much. I told them
2:46
I don't think I have that long. And I told the
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person who I was talking to my symptoms. And
2:52
she said, you either have Crohn's or colitis.
2:55
She assigned me an emergency colonoscopy. So
2:59
I had to do the prep that day. Let my work know,
3:04
like, I'm going to be out tomorrow. I have a
3:07
procedure tomorrow. When I woke up, I was still
3:12
really drowsy. And the doctor said, yes, you
3:16
have ulcerative colitis. And I just looked at
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him like, I don't know. He's speaking another
3:22
language to me. I don't know what he's talking
3:24
about. They put me on medication. I went on Azacol
3:27
right away. Did I see improvements? No. I wasn't
3:33
bleeding. I wasn't getting the mucus discharge.
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That's what they ended up finding, that white.
3:40
that white substance that was coming out, that
3:42
discharge, it was mucus because my body was trying
3:46
to heal itself and heal the wounds. My white
3:50
cells would just attack it. There were times
3:53
I went in remission. I have some very embarrassing
3:56
moments. I'm trying to even get to work sometimes
4:00
and you'd have an accident. But the best thing
4:03
I can tell people is have an emergency kit with
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you all the time. Here in America, we drive a
4:10
lot instead of using public transportation. So
4:13
in my car, I would have a bin that included like
4:19
a flour container, like something that you would
4:21
hold like flour or sugar in. And I would put
4:24
a doggy bag in it and then use that and put that
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underneath my bum. And it would collect in the
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dog bag. And I could just throw out the doggy
4:38
bag. I also brought like extra clothes, toilet
4:42
paper, you know, wet wipes, like actual wipes.
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So if any feces gets on your hand, you could
4:48
clean it up. This is what I dealt with for nearly
4:52
20 years. And I got to the point where one of
5:00
my colonoscopies, they said that I had ulcers
5:04
now all the way. Colitis starts in your rectum.
5:09
So that's where mine definitely began. And it
5:13
started going up. But it stayed like that for
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years. It stayed like that for like 10, 15 years.
5:20
And then all of a sudden, one day, my body was
5:23
like, I'm not going to fight this anymore. I'm
5:25
done. And it just, all the ulcers went all the
5:29
way. They weren't able to see in the colonoscopy
5:33
if It was actually going into the small intestine.
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They said they wouldn't know unless the surgeon
5:39
looked at it. Everybody I met with was like,
5:43
you don't want to get rid of your colon. You
5:45
want to keep it. And I said, you know what? I've
5:48
suffered so much and in so much pain that I don't
5:54
want it anymore. I researched. I met with other
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people who had an ostomy bag. And I was like,
6:01
they have their life back. I think I could do
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this. So I told the surgeon, I was very clear
6:08
with him. I want this. I want this ileostomy
6:11
bag and I want it to be permanent. And he was
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like, no, no, you might want a J pouch. Well,
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when I researched the J pouch, all they do is
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they take their small intestine and they sew
6:24
it into the rectum. Well, there I'd have my rectum
6:27
still, which has ulcerative colitis in it. I
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was like, I'm good. And the muscles are gone
6:33
back there. Like I would just go constantly.
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So it was, no, that was not, I said no to the
6:43
J pouch. And I told him, I was like, please remove
6:46
my rectum. It's of no use. And he said, no, no,
6:50
we may keep it. It'll heal on its own. And I
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said, no, it won't. I know my body. I know ulcerative
6:55
colitis. It doesn't heal on its own. And even
6:57
if I have that little. the little bit of rectum
7:00
left, it's going to be a problem. So I had my
7:05
surgery, I woke up. And this, get this, this
7:09
is really funny story. As I get up out of my
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surgery, my surgeon had told me I was so tiny
7:16
and small at that time. He was like, I wasn't,
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he wasn't sure if he was going to be able to
7:20
go in laparoscopically into tiny little incisions,
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or if he was going to have to cut my stomach
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all the way down. So when I got up, out of it.
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I was like, open up my gown, open up my gown.
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I want to see, you know, how it looks. And my
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husband is standing next to me in the hospital
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bed and we're opening this up and I see little
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incisions. And I was like, oh my gosh, he actually
7:45
did little incisions. But you have a clear bag
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and the clear bag is showing black, red, just
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horrible, right? My husband is standing there
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and he sees this and he faints. And I'm like,
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I'm supposed to be treated by the nurses right
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now. And now they're taking care of my husband.
8:09
So, you know, there's little funny things that
8:12
happen along this journey. But I wouldn't change
8:16
anything because it's made me who I am today.
8:22
It's made me strong. It's made me be an advocate
8:25
for myself. And now that I have my ostomy bag,
8:29
I'm back to being myself, actually better than
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I was before. I'm never doubling over in pain.
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I'm never looking every time I enter a store
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or someplace I go, where's the bathroom? Where's
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the bathroom? Because you always had to plan.
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You never knew when. the flare would happen.
8:51
So now I can just actually relax and enjoy my
8:55
life and enjoy going to places without having
8:58
to run for the bathroom. And it's great because
9:01
I can travel and I don't have to stop as much
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to, you know, have a bowel movement because it's
9:08
just happening all the time. Wow. So yeah, that's,
9:12
so thank you for that summary. There's a lot
9:14
to dissect here. So I'm going to go back a little
9:18
bit because there's something interesting that
9:19
you said. You were diagnosed, you were put on
9:23
azacol for a while, and then you said there's
9:25
a period of almost 20 years, right? During those
9:28
20 years... Did you stay on just as a call? How
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did you manage? Were you constantly flaring?
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Were you sporadically flaring? How bad were the
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flares? Because 20 years is a long period, you
9:41
know, before getting to the point to say, oh,
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well, now all of a sudden, like, I cannot take
9:46
it anymore. So maybe talk a little bit about
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those managing the disease for 20 years and what
9:52
that was like for you. Come to think of it, most
9:54
of the time it's been a blur. Thank God for that,
9:57
right? For the most part, I did stay on Azacol.
10:01
They did move me to some other types of medications,
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not remembering some of the names, but they would
10:09
make me feel really sick where I felt like I
10:12
had the flu. So we wouldn't stay on those. I
10:16
would just stay on the Azacol. There were times
10:19
that I would flare up more because we found out
10:23
that I also had irritable bowel syndrome. With
10:26
that, any stressors, anything like that, it's
10:29
going to aggravate it as well. So there were
10:32
times that I would also go on cordial steroids,
10:36
like a prednisone or budesonide. I ballooned
10:40
up really bad within my face. I was constantly
10:44
irritable. wanting food all the time. But I looked
10:48
into a lot of holistic things of changing my
10:51
diet, cutting out seed oils, cutting out carbohydrates,
10:55
cutting out sugar. Sugar causes a lot of inflammation
10:59
in your body. So does seed oils. So learning
11:03
that along my journey, it's really difficult
11:06
in the US to get around these things. So I've
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ended up having to learn how to cook my own food.
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So diet definitely helped. I did a lot of meditations
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as well to help calm my stress that I had in
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my life. And just working with those medications.
11:28
And there's times that I actually had remission
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for three years, had no symptoms. I was having
11:33
normal bowel movements. Those were the most amazing
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times. But the other times when I'd flare up,
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it would get pretty bad. Obviously, when you
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have periods of remission, you think, okay, right,
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the disease is under control. And yeah, you might
11:47
flare up every now and then. But as you got closer
11:49
to a period of it getting worse and worse, so
11:55
much so that you chose surgery, was there never
11:58
a time that your doctors, your GI mentioned biologics
12:03
to try and save the day? So that was offered
12:08
to me. In the middle of my journey. But at that
12:14
time, it was... Remicade and Humira? Remicade,
12:20
yeah. Yeah, exactly. The two early ones. The
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two as early ones. And I needed to go on like
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a trial basis. They weren't just like giving
12:29
it out back then. And that was around like the
12:34
2010s. Then like... As I was getting closer to
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the end of my journey of removing it towards
12:42
the surgery, then I started seeing more biologics
12:46
coming out. And at that time, they were offering
12:50
them, but I said, I just, I feel like my, I felt
12:53
like my colon was at its end of life, that I
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should have had those earlier in my journey.
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You know, now I was at the point where it's like,
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it's irreversible. Because it was so much, the
13:08
whole colon was so damaged with ulcers. Did the
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choice to not go the biological road then, did
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that rest mostly on you? Or like, did the doctor
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say, hey, maybe let's try them? And you just
13:20
said, listen, I know my body, no thank you. And
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also, if that was the case, or even if it wasn't
13:25
the case, if you're looking back, do you ever
13:28
regret not trying them out? I just... didn't
13:32
get the opportunity in my journey. So at the
13:35
beginning, it was Humira, Remicade, and I was
13:38
seriously looking into those because I was put
13:40
into the trial, but they never called me to try
13:44
it. So it wasn't just prescribed. I don't understand
13:49
why, like how other people got it prescribed,
13:51
but my doctor wouldn't prescribe it. And then
13:55
again, later in my journey, they offered it again.
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But then that was when I said, no, I don't think
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that that's going to work either. Just because
14:06
I was getting fed up being a guinea pig with
14:08
medications not working. Sure. Yeah, of course.
14:13
At one point it's very discouraging. So you sort
14:15
of lose the trust in science if it really doesn't
14:19
work anymore. Now, obviously you making the decision
14:24
to have your intestines removed. That meant that
14:29
you were at a stage where you just couldn't take
14:31
it anymore, right? Yes. So obviously your condition
14:34
must have severely degraded. How did you deal
14:39
with that mentally? First of all, you know...
14:43
It getting worse all of a sudden after having
14:45
years of remission and a couple of flares, but
14:47
obviously at one point it really started to go
14:49
bad. How did you deal with that mentally, seeing
14:52
your body basically continuing to turn against
14:54
you to the point that you're the one who has
14:57
to make a decision and say, you know, I want
14:58
this thing out of me? That mental health journey
15:01
was very tough. I will not lie about that. There
15:05
were times that I've wanted to take my own life
15:08
just because I was sick of tired of dealing with
15:11
the pain. dealing with medications that didn't
15:15
work, dealing with doctors who just didn't understand
15:19
it as much as you would think they would. Towards
15:23
the end of my journey, I think I got better about
15:27
it because I was like, this is my life. This
15:29
is what I've been dealt with. These are the cards
15:31
I've been dealt, right? How can I make the best
15:35
of these moments? That's when I started standing
15:38
up for myself more and becoming more of an advocate
15:42
for myself and really researching things. I mean,
15:46
now the internet is blown up with so much information
15:51
that I was able to do a lot of research on my
15:56
own, especially social media helped me as well
15:59
with people sharing their stories and going,
16:02
hey, I'm dealing with the same thing. That helped
16:06
me along going, hey, I'm not alone on this. And
16:10
I started connecting with people to help get
16:13
me through it. Because when you're around your
16:16
own family and friends, if they don't have it,
16:19
they don't understand. They may be empathetic,
16:22
but they don't fully grasp the day in, day out
16:26
of what you actually deal with. And so when you
16:31
actually talk to someone that actually has dealt
16:33
with it, It feels like, oh my gosh, I'm home.
16:40
I have someone now that gets it. You know, you're
16:43
not alone. For sure. It's interesting that you
16:46
say this because you would expect that family
16:51
and close friends are really your main support
16:54
system. And of course, they can be in many ways
16:56
as you struggle with IBD. But I feel the same
17:02
way. It's like... For us, it's pretty obvious
17:05
what's going on. IBD is referred to as an invisible
17:08
illness for a reason. But then, you know, especially
17:11
close family members or even partners, you know,
17:13
they do see us suffer to a certain extent, right?
17:16
Whether it's fatigue, whether it's like just
17:17
hiding out in the bathroom or just wanting to
17:20
sort of isolate ourselves and dealing with the
17:22
pain in silence. But in your case... Did you
17:26
try to explain this to your close family members
17:29
or to your partner or husband? I don't know if
17:32
that was a husband at that point. And how did
17:35
you try to communicate? How did you try to explain
17:37
it? Because a lot of people seem to struggle
17:38
to like sort of find the right way to share what
17:43
we're going through with loved ones. Yeah. And
17:45
this is a funny story I'll share with you because
17:49
I felt like no matter what I said, it wouldn't.
17:54
come to like it didn't hold with people like
17:58
they didn't really understand or the grasp the
18:01
the the pain I'm more of a person who I think
18:06
rather than talk about it I'll have to show it
18:08
right so do I need to prove this to you fine
18:14
I will put myself in pain to prove to you that
18:17
I have this problem so my mother -in -law decided
18:23
She's going to make a chili, and she used six
18:26
different beans in it. I can't have that much
18:30
fiber, as I was explaining before. So I told
18:34
her, I can't eat your chili. She's like, oh,
18:36
it'll be fine, Janelle. You can have this. It'll
18:39
be fine. I said, you know what? You're right.
18:41
It will be fine, knowing it wouldn't, right?
18:45
But I was like, I'm at the point now where I
18:48
just want to prove to her that it's not. Within
18:51
an hour after eating, the chili was good, by
18:55
the way. But within an hour, I was running to
18:59
the bathroom. I was actually crying a little
19:02
bit in pain. And my mother -in -law came to me
19:07
and said, I am so sorry. I now understand what
19:11
you're going through. They don't get that until
19:14
they actually physically see it. And that's hard.
19:18
But I'm that kind of strong -willed mind person
19:22
who's like, all right, fine, let's just go do
19:24
this. I'll prove it to you. You gave them a front
19:29
row seat. I sure did. And they smelled it too.
19:36
So, I mean, let me say that's probably a quite
19:40
unconventional way of explaining what you're
19:44
going through. Right. But this is interesting
19:47
because I can tell that you have your own particular
19:51
sense of humor, right? Yes. And clearly, you
19:54
know, we use our sense of humor when we feel
19:58
good, but sometimes, you know, our sense of humor
19:59
then also helps us through some of the times
20:01
when we feel bad. Now, going back to the surgery.
20:06
you had the story, you know, that you joked about
20:09
like, hey, you know, your husband was the one
20:11
fainting and, you know, nurses took care of him
20:13
and stuff. So did you apply this mental approach,
20:19
like this sort of sense of humor as well, preparing
20:22
for surgery, going through surgery, or were you
20:26
scared? Were you not scared? Oh, gosh, all of
20:30
those, all of those, yes. Humor is one of the
20:33
things that has gotten me through all of this.
20:35
The poop jokes just get me through that because
20:39
there's a lot that you can just joke about. I
20:42
mean, even your podcast is like, let's just talk
20:44
about shit, right? I mean, this is what we deal
20:46
with, right? So was I scared? Absolutely. You
20:52
have a 50 -50 shot of making it or not making
20:55
it. But I felt comfortable knowing that I was
20:58
in good hands. things were to not go right, well,
21:03
then that was my time. When I woke up, I mean,
21:06
we were just laughing, you know, a lot, especially
21:09
when it came to my husband. And I actually had
21:12
to calm myself from laughing because, because
21:15
I, because it was painful. You know, I just had
21:17
all this, like, I've just been stabbed with tons
21:21
of stuff going on in my abdomen. And, you know,
21:25
so, and And as I went on my journey after the
21:30
surgery, you know, they come in, they want you
21:32
to walk right away to like get your blood flowing.
21:35
It makes you heal faster. I was out there every
21:40
day, three times a day, walking the halls. And
21:43
I had a nurse with me and I was like, I would
21:46
tell her, I'm like, I want to go again for a
21:47
walk. And she's like, wow, you're really pushing
21:49
yourself. And I said, no, it's because I want
21:51
to heal. I want to get better. I want to start
21:54
my life. And we would. make jokes as we would
21:58
walk. I'm not saying I was walking really fast,
22:02
but my surgeon came in and he told me, Janelle,
22:09
you are one of my stellar patients that I've
22:11
ever had. He's like, you're out there walking.
22:14
You take everything I tell you, you do it. And
22:17
I said, yeah, this is my body. This is my health.
22:19
If I don't do this, I don't want to, I don't.
22:23
I will be miserable just laying in a bed all
22:25
day becoming a vegetable. And going back to that
22:28
surgery, he didn't take out my rectum, my first
22:31
surgery when he did the ileostomy. So as I had
22:36
mentioned, you know, I have colitis. It starts
22:38
in your rectum. Guess what? I had issues. Six
22:42
months after my ileostomy, I started having a
22:47
lot of water. and mucus. I had two inches back
22:51
there, two inches. And I was having the muscle
22:56
spasms, you know, like you have to go. You know
22:59
how painful that is when you're still trying
23:01
to recover from surgery? So I actually had to
23:04
go back to the surgeon and I told him, I was
23:07
like, I told you to take out my rectum. And he
23:10
was like, yes, you were right. So after that
23:15
surgery, when I woke up, you know, now I don't
23:19
have a rectum. I don't fart. I, you know, I don't
23:24
have to worry about anything back there. It's
23:26
so wonderful. So I have to joke around. And so
23:32
my surgeon comes in and he's like, how you doing?
23:35
How you feeling today? And I was like, I have
23:37
to really ask you a serious question. Does this
23:41
mean I can't do anal beads anymore? He's just
23:47
sit there with a straight face because he's got
23:49
to be professional. And he goes, no, Janelle,
23:52
you don't have a butthole anymore. And I was
23:55
like, I'm just trying to make him laugh, you
23:58
know, because I'm trying to get through this
24:00
with making jokes. You know, there's times that
24:06
I would joke around with people at work that
24:08
I got a new office desk. chair for my my job
24:12
and I was like it's so great because there's
24:14
no farts on it you know I don't fart anymore
24:17
and then I'll tell him oh but then my husband's
24:22
down on it and then he farted on it now it's
24:24
ruined but you have to make jokes about some
24:28
of these things because it gets you through it
24:30
before I would be sitting on the toilet for hours
24:35
just hoping something would pass because it felt
24:38
like I either dealt with diarrhea or constipation
24:41
with colitis. It was always, every day was different
24:45
with colitis. I never knew what I was getting.
24:48
Now it's just, I can live my life again. You
24:52
know, yes, it might be an inconvenience at first
24:55
that you always have to empty this bag, but Your
24:58
life could be so much more worse if you didn't
25:01
have that. If you had a digestive disease that
25:04
caused you to go to the bathroom constantly with
25:06
a lot of pain, it caused you fatigue, it takes
25:11
away your malnutrition of your food at times,
25:14
you're dealing with anemia, just so many different
25:18
things that you're dealing with when you have
25:19
ulcerative colitis that you don't have to deal
25:22
with when you have an ostomy anymore. Absolutely.
25:25
You're absolutely right. And I'm really happy
25:29
to hear that humor served you well and that you
25:32
bring humor into your advocacy as well and your
25:36
awareness. So keep doing that because it's a
25:39
strength and not everybody has the strength to
25:41
relate on something like humor to get them through
25:44
an ordeal like this one. You touched as we segue
25:49
into the present and slowly inch towards the
25:52
closing and look into the future as well. You
25:54
mentioned it yourself. You talked about how you
25:56
are today. Seems to be going relatively well.
25:59
I can deduct for sure that you have your life
26:02
back. But just very bluntly, do you consider
26:06
yourself cured? I've asked that to my doctor,
26:08
actually, because now that I have no colon or
26:11
rectum, I don't have colitis. However, it is
26:16
an autoimmune disease. Because I had colitis
26:20
for over 10 years, once you have an autoimmune
26:24
disease for over 10 years, you start getting
26:26
other autoimmune diseases. So yes, my colitis
26:31
journey is over, but it's not over as far as
26:35
autoimmune diseases. I now have other autoimmune
26:37
diseases that I deal with. How are you dealing
26:40
with those? Let's say if we want to compare.
26:45
I'm assuming you're still better off than you
26:47
were before. Oh, absolutely. How are you feeling
26:50
just on a general basis than today? Yeah, so
26:53
as I've gotten older, I've matured as well. When
26:57
I was in my 20s and I had ulcerative colitis,
26:59
I thought, why me? Why do I have to deal with
27:02
this? But now it's like, oh, wow, I was given
27:06
that because now I can help someone else. And
27:10
I feel... I have more empathy. I have more compassion
27:14
towards others. If I didn't have this, would
27:18
I be that kind of person? I don't know. But it
27:22
has made me, in hindsight, I feel like a better
27:27
person in the end. Because I never wanted to
27:34
be a helpful person before, and now I want to
27:36
be helpful. Because I had those people who helped
27:39
me on my journey. I want to help someone else
27:42
on their journey now. And it's going to be a
27:45
bumpy road. I'm not going to lie. But speak up
27:51
for yourself. Be an advocate for yourself. Because
27:53
the only one who knows your body the best is
27:56
you. And if you don't like what your doctor is
28:00
saying, see another doctor if you can. Because
28:03
you can get different opinions from different
28:06
doctors. Well, you just answered about... three
28:10
questions in one answer, which is really great.
28:13
You know what that means? I can go straight to
28:14
my next one. Yes, yes. But thank you for sharing
28:17
that. Yes, absolutely. I was going to ask you
28:18
how it changed you as a person. You certainly
28:20
addressed that. And I always do like to ask,
28:22
you know, what kind of advice or word of advice
28:24
you have for people who are going through something
28:26
similar. Something else that I think a lot of
28:29
people struggle with, especially when it comes
28:31
to surgery, living with an ostomy, is body image.
28:37
How has colitis and also your surgery affected
28:41
your body image? Yeah, there were times I've
28:46
always felt dirty. You know, when you poop your
28:48
pants as an adult and you're like, oh, my God,
28:52
I'm a toddler and I have to take care of this.
28:56
You start to degrade yourself like, oh, man,
29:00
like my whole pants are ruined. I was always
29:06
thinner, so I felt like I was okay with the way
29:11
I looked, but I always felt that I was too thin.
29:14
So when I would actually put on a little weight,
29:16
I would get really, really excited. And I was
29:19
like, I'm finally being healthy. I'm finally
29:20
being healthy. I remember dancing around sometimes
29:23
like that when I put on two pounds. But as my
29:26
journey now, having an ostomy, I think I'm even
29:33
sexier now. Because I don't have anything holding
29:37
me back. And I have this cool little bag on my
29:40
belly that nobody else has. It's kind of like
29:43
another accessory that no one sees. You know,
29:48
I love to accessorize with glasses and fun, cool
29:52
things. But at the same time, I look at it as
29:55
like, this is my lifesaver. I think I look sexy
30:00
having a little ostomy bag. And, you know, not
30:04
using the clear one, obviously. But my husband
30:07
doesn't see it when we're together. He doesn't
30:12
say anything to me like, oh, that's disgusting.
30:17
Or, you know, he doesn't see it. He's like, I
30:20
see you. He doesn't faint anymore. No, no, he
30:24
doesn't faint. No. Oh, yeah. But, you know, he's
30:30
gotten used to it. And our intimacy has not changed
30:34
at all because of that. Because he loves me.
30:37
And when you're out there, if you're single and
30:39
you have an ostomy and you're feeling insecure
30:42
about yourself, you will find somebody who's
30:45
not going to find that that's gross or disgusting.
30:48
They're going to love you. And they're just going
30:51
to go, oh, well, that's just something that's
30:53
a part of you. You know, that's, it's like as
30:56
if we didn't have a leg, you know, you'd have
30:58
to have a prosthesis. So you just have to, there
31:02
are people who don't look at that as a problem.
31:07
They just don't. Yeah, it's all about your own
31:10
mind and keeping yourself strong -willed. I found
31:15
that easier later on in my life as I've matured.
31:19
And also, I should mention that I also did seek
31:22
a lot of therapy throughout this journey as well.
31:25
Very important. Very important and something
31:27
that I feel is often bypassed almost, especially
31:32
with IBD. I mean, I was lucky enough that my
31:35
specialist in the US when I was out in LA also
31:38
offered me to go see a therapist, actually a
31:41
therapist specializing in digestive diseases.
31:45
Think about that, a specialist, you know, a therapist,
31:48
especially in IBD. That's fantastic to have people
31:51
like this. Again, you know, I mean, it's one
31:53
thing to be seen by a therapist and work with
31:55
your therapist to work to whatever you're dealing
31:57
with. But again, to have somebody really focusing
32:00
on IBD and everything that's associated with
32:03
it, all these insecurities, the fears, the embarrassment,
32:05
it's important. And I think we don't stress this
32:09
enough that, you know, even though you might
32:11
be wanting to isolate yourself in the beginning,
32:15
Even though you might be embarrassed, therapy
32:17
can go a long ways. I mean, I can certainly speak
32:21
to that. You can speak to that, I'm sure, because
32:23
the way you're paying to me, you're open. You're
32:26
not embarrassed at all. So don't forget about
32:30
that aspect as well when it comes to the mental
32:33
health. You will deal with embarrassing moments.
32:37
dealing with ulcerative colitis or even Crohn's,
32:39
I'm sure. I can only tell you from my experience,
32:43
but there were one time that I lived in Atlanta,
32:47
Georgia for a while and the commute was horrendous.
32:51
There would be times I'd be in the car for up
32:54
to two hours just trying to get through traffic.
32:57
There was one time that I really had to go and
33:00
I wasn't near a bathroom. And I got to my place
33:04
of business and I parked in the parking structure
33:06
and I knew I would never make it to the bathroom.
33:10
I was like, I'm never going to make it. I'm not
33:12
going to make it. So I had brought my lunch in
33:15
a, you know, a grocery bag, you know, that you
33:19
would get. And I had a bunch of napkins in my
33:24
car console. just because of spills or whatever.
33:28
I always love to have napkins around. Well, I
33:30
ended up using those to defecate on and then
33:34
ended up carrying my lunch into work because
33:37
I had to dump all of that into the grocery bag.
33:39
I mean, these are those moments that you're like
33:42
so embarrassed about, but I'm like, did anyone
33:45
notice? No, there was nobody around, you know,
33:48
and I just threw it in the garbage. And I went
33:52
on about my day. And it's just like you would
33:55
be super embarrassed. And there's times that
33:58
I've I've had feces on the back of my pants and
34:02
someone's noticed and they're like, did you sit
34:04
in chocolate? No, I didn't. You know, so those
34:09
are those embarrassing moments. But when you
34:11
actually share with people like, oh, I actually
34:14
have a problem, you know, they they even if they
34:18
don't understand, they usually were. Like, oh,
34:22
OK, you know, like I probably shouldn't have
34:26
said anything or, you know, I didn't want to
34:29
make them feel bad, you know. But yeah, it's
34:31
those moments that you have to. look back at
34:34
the time it's embarrassing and yeah your face
34:37
is going to get red and you're going to be embarrassed
34:39
and you hope nobody sees you but at the end when
34:42
you look back you're like man I got through that
34:44
moment and I did it really with my head held
34:47
high right as much as it can be when you're dealing
34:50
with poop Yeah, so absolutely. I think sometimes
34:54
going through embarrassing experiences will help
34:58
us mature, will help us then eventually to kind
35:01
of get rid of that embarrassment and accept what
35:04
we're dealing with because we don't really have,
35:05
like you said, a choice, right? Right. So I always
35:11
like to end on a positive note. And I think your
35:13
story that you just mentioned and the outcome
35:15
of at least, you know, is definitely optimistic,
35:18
right? And filled with hope. I have a final question
35:22
for you. And that one is, if you could go back
35:27
in time, back to that 25 -year -old self, what
35:33
would you tell that person? And I know that you
35:37
probably would, whatever you would say, you would
35:39
probably say it with humor, having gotten to
35:42
know you a little bit. But what would be your
35:45
message to yourself at age 25? I think the first
35:49
thing I would do is hug myself and tell myself
35:52
everything's going to be okay and that I'm going
35:54
to get through it and it's going to make me become
35:57
stronger and that the journey is going to be
36:00
a bit bumpy and a bit shitty, actually. Literally.
36:10
But, you know. I would warn myself about some
36:16
of the things that I'm going to deal with so
36:17
that I don't fall into those mental lows that
36:22
I did get at the beginning. And sometimes throughout
36:25
the journey where I felt like suicide might be
36:28
better. And I'm glad that I never went through
36:30
with that because I did contact Suicide Hotline
36:34
and they did get me through it. So all of the
36:37
people that you talk to there are volunteers.
36:40
So they... are the most wonderful volunteers
36:44
I'd ever met. Just getting you through your struggle
36:48
and trying to understand what you're going through
36:51
and making you feel like you're a person. Because
36:54
that's where I didn't feel like throughout this
36:57
journey. Sometimes I was like, what is happening
36:59
to me? I don't feel like a person. But at the
37:02
end of this whole thing is I wouldn't change
37:06
anything about anything because it's... what
37:11
i knew like if i were diagnosed now i would probably
37:15
treat it a lot differently because of all the
37:17
knowledge that's out there but i didn't know
37:19
a lot of that stuff back then i got a lot of
37:21
books but they only tell you so much um they
37:24
don't tell you i don't talk to you about the
37:26
mental health part of all of this as well and
37:30
um dealing with relationships as well and how
37:35
to explain this to people so that they understand
37:38
and not make you feel like you're Because they
37:41
don't see it, they may think you're a hypochondriac.
37:44
And that's not the case. And that's why, you
37:48
know, I shared earlier that sometimes you just
37:50
have to prove it to people if that's what it
37:53
takes. But I don't recommend that. Don't recommend
37:56
that. No, no. And yet you did prove it. I did,
38:01
yes. Exactly. And the most important thing is
38:03
that you actually got through it, right? You
38:06
found your way. And you found yourself, you got
38:10
your life back. And I think that's what matters
38:13
most. And if you achieve that with the help of
38:19
humor, then so be it, right? More power to you.
38:23
So Janelle, don't lose that humor. For sure,
38:27
because I think it's very inspiring. First of
38:30
all, it helped you and I think it's helping other
38:31
people as well. I want to thank you so much for
38:35
taking the time to open up about your story today.
38:38
Very inspiring. And I'm going to leave you with
38:42
nothing but the best. I hope that you... Continue
38:46
to manage whatever sort of other autoimmune diseases
38:49
you're struggling with and that's going well.
38:51
And wishing nothing but the best for the future.
38:54
Thanks, Frank. And thanks so much for having
38:56
me and hope that my journey can help someone
38:58
else through theirs. That's it for today's episode
39:02
of Talking S***, presented by Colitis Unfiltered.
39:06
I'm Frank Tabering. And if this hit home or hit
39:09
your gut, do us a favor. Subscribe to the show.
39:12
And follow us at Kaleidos Unfiltered on YouTube,
39:15
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39:19
We'll see you soon for more inspiring stories
39:21
from the bathroom floor.