Latest / Crohn's & Colitis Unfiltered / Crohn’s, an ostomy and acceptance: Dana’s life beyond surgery

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Crohn’s, an ostomy and acceptance: Dana’s life beyond surgery · Crohn's & Colitis Unfiltered

0:00
I've become much more in tune with my body overall.
0:04
Like, oh, this pain that I'm feeling, what could
0:07
it be? Could it be my Crohn's? Could it be this?
0:10
Could it be that? Like, you realize, you learn
0:12
how your body works. You learn what affects it.
0:15
You learn different feelings and different things
0:17
that help. And I think that's really important,
0:20
too. You know, with the rise of just diseases
0:23
in general, it's good to just be in tune with
0:26
your body and to know what's going on. This is
0:30
Dana, who got diagnosed with Crohn's disease
0:33
at age 15 in Chicago, Illinois. Dana struggled
0:36
with IBD for over 10 years before her doctors
0:40
recommended she have surgery. Now living with
0:43
a stoma, Dana has taken back control of her life.
0:46
Today on the Colitis Unfiltered podcast, Dana
0:50
shares her journey of Crohn's through teenage
0:53
years into young adulthood and how surgery improved
0:56
her condition. My name is Frank Tabering. And
0:59
Dana, welcome to the show. Thank you so much
1:02
for having me. I really appreciate it. So Dana,
1:04
we're going to talk about Crohn's disease today.
1:06
We're going to talk about IBD in general, but
1:08
specifically your journey. And your journey,
1:11
your IBD journey, starts with symptoms. Pretty
1:14
much for everyone, it's the same game, right?
1:17
So tell me a little bit about how Crohn's started
1:21
to manifest in you. What were your first symptoms?
1:25
made you realize that something was profoundly
1:27
wrong, that you had to get checked up and then
1:29
eventually led you to your diagnosis at 15 years
1:32
old? Yeah. So I actually had just had a surgery
1:36
to remove my wisdom teeth when I was 15. And
1:39
the common pain relief after that is prescription
1:43
strength NSAIDs. So they're at a very high dose.
1:46
And if you have IBD, you know that NSAIDs can
1:49
often trigger IBD symptoms. So at the time I...
1:53
was not diagnosed didn't have any intestinal
1:55
issues to any extent but i started just having
1:59
a lot of like diarrhea stomach cramping stomach
2:03
pain after this surgery that i had and you know
2:06
at first i thought it was just a stomach bug
2:08
and then it continued for several weeks and then
2:11
about a month later i was having a lot more pain
2:15
i was vomiting i couldn't eat anything We're
2:18
like, okay, something is definitely wrong. So
2:21
that kind of led to seeking out answers, going
2:23
to the doctor, seeing specialists, those sort
2:26
of things. And then I'm assuming you ended up
2:29
at the gastroenterologist's office and you had
2:33
a colonoscopy and that led to your diagnosis?
2:36
Yeah, so I was, by the time I actually saw a
2:39
gastroenterologist, I was so sick that... I did
2:42
need to be admitted to the hospital. My iron
2:44
was severely low. So she obviously had to do
2:47
a colonoscopy to get the diagnosis with the biopsies
2:50
and everything. But she said that since my iron
2:53
was so low, it was dangerous to do the procedure.
2:56
So I had to have a blood transfusion in the hospital,
2:58
get admitted, and have the colonoscopy while
3:01
I was admitted to the hospital. And then the
3:04
words came out of your doctor's mouth, Crohn's
3:07
disease. What? What did that feel like? Had you
3:11
heard of IBD or Crohn's before? Was it just completely
3:14
new to you? And then mentally, how did you navigate
3:18
this news that now you're part of a community
3:23
that has sort of an incurable disease? Yeah,
3:26
so being 15, you know, my parents were very involved
3:29
at the time. I was still a kid. So when I was
3:32
having these symptoms, my mom was doing a lot
3:34
of Internet research and things. And she was
3:37
like, you know, I think you might have this,
3:39
like trying not to alarm me as a young 15 year
3:43
old. So we kind of had it in the back of our
3:45
head that that might be what's going on. And
3:48
then when I did receive the diagnosis, you know,
3:51
you officially need the results of the biopsies
3:53
to get that diagnosis. But when they did the
3:55
scope, they pretty much knew right then and there
3:57
that that's what it was. So in my head as a 15
4:00
year old, I think, oh, OK, I'm going to get this
4:03
medication. It's going to help. I'm going to
4:04
be better. Not knowing the full extent of the
4:09
lifelong disease that IBD truly is. So at the
4:14
time I was optimistic and. I remember going to
4:19
my pediatrician after that and she was less optimistic.
4:24
She was like, you know, be expecting to miss
4:27
a lot of school, to miss out on a lot of activities.
4:30
And that struck me very hard as a teenager. Like,
4:35
what? This is supposed to be the time where I'm
4:37
going out. I'm with my friends. I'm doing sports.
4:39
I'm doing things. I was playing volleyball at
4:41
the time and I had to drop out of that. And so
4:44
it was a big shock once she kind of said that.
4:47
And I realized, oh, this is a little bit more
4:49
serious than I was expecting. So in a sense,
4:52
your pediatrician maybe gave it to you more straight
4:55
than your own parents? I would say yes. You know,
4:59
I think they were trying to, I mean, my parents
5:01
didn't know either. They had never been through
5:04
it. Nobody in my family had IBD or anything.
5:07
So I think they were trying to be optimistic
5:09
as well and also trying not to scare me. But
5:11
yes. The pediatrician ultimately was the one
5:15
who was a little bit more realistic. And I think
5:17
at 15 years old, you're too young to sort of
5:20
appreciate that sort of, you know, bluntness.
5:24
And did that instill in you a fear of what was
5:28
to come? I think so. At the same time, I think
5:33
I'm a very stubborn person. So I think in the
5:36
back of my mind, I was like, all right, yeah,
5:39
they say this, but I'm going to be stronger.
5:41
I'm going to be tougher. I'm going to tough it
5:43
out. You know, I'm not going to let this this
5:45
disease get to me. So I really. You know, I pushed
5:50
through a lot more than maybe I should have at
5:53
times, but... Yeah, yeah, of course. Well, you
5:56
mentioned, you know, your teenage years, you're
5:58
not supposed to deal with these sorts of things,
6:01
but yet you had to. How did it impact your social
6:04
life? You know, how was the relationship with
6:07
your friends? Did they understand? Did they support
6:09
you? Did you isolate yourself? Did you not have
6:12
a... a choice but to isolate yourself because
6:14
of how you were physically feeling. How did you
6:16
navigate those years then, let's say from 15
6:19
years to, you know, 18, 19, 20 with Crohn's disease?
6:24
Yeah, so I remember at the time I did have a
6:26
pretty tight -knit group of friends and they
6:29
were kind of confused at first. Like, what? You're
6:32
going to the hospital. You're getting this disease.
6:36
I think it was a shock to them as well. And I
6:39
remember... This was the summer when I was diagnosed
6:42
and going back to school, there was sort of a
6:45
shift in that kind of distance a little bit.
6:47
You know, I was still struggling every day and
6:49
they were moving on in their lives. And there
6:53
definitely was a little bit of a gap in our friendship
6:57
at that point. And I think with time, you do
7:01
realize, you know, the friends that stick with
7:04
you are the ones that are the true friends and
7:07
the ones that are supposed to be in your life.
7:09
While it's hard, especially as a teenager, you
7:11
don't fully comprehend what's happening. But
7:14
with time, you do learn who's really going to
7:17
be there to support you. Now, we talked a little
7:20
bit about the social aspect of this in these
7:23
young teenage years living with IBD. How did
7:27
your journey evolve in terms of treatments, medications?
7:32
Talk to me a little bit about that from your
7:35
diagnosis. Really until where you are today.
7:40
Yeah. So we started out, you know, the most conservative
7:43
route we could go with the more tame oral medications
7:47
that are out there that they usually prescribe
7:50
first. You know, we had the steroids, we had
7:53
the immune modulators and those kinds of things.
7:57
And they just they weren't even hardly touching
8:01
my symptoms. So we did progress to the more.
8:04
Stronger biologic medications, you know, infliximab
8:08
was my first one that worked very well for several
8:12
years. And then I had actually to have a resection
8:16
surgery because I had stricturing in my colon.
8:20
And then after that, it sort of stopped working.
8:23
Then we had to shift. And I've been through,
8:27
honestly, almost every medication that is out
8:30
there since then. It took a while to really find
8:33
one that. was working. I think I was on four
8:37
more biologics after that. And I finally needed
8:42
to have my ostomy surgery because they just weren't,
8:46
they weren't touching it. I was getting severe
8:48
stricturing, severe inflammation. And then since
8:51
then we have found a medication combo that's
8:54
been working really well. And so the surgery
8:58
you had at what age? I had my ostomy surgery
9:01
at age 26. So that was in 2021. So basically
9:06
for a decade, pretty much it was this kind of
9:09
like, okay, fine. Fliximab works for a couple
9:12
of years, but then it's sort of like back to
9:13
trial and error, suffering through periods of
9:16
feeling better and periods of suffering until
9:20
that moment. Okay. Now a decade, it's quite a
9:22
long time, right? Because 15, that's a crucial
9:25
age. And then you get to your early 20s. Now
9:28
you're 26, you have to have surgery. I understand
9:32
you didn't really have a choice. because you've
9:34
exhausted all possible other options. But how
9:37
did you mentally prepare for surgery? And maybe
9:40
before you answer that, tell me a little bit
9:42
about how your doctor approached the subject
9:45
of surgery and how that impacted your mental
9:49
health, right? When somebody comes to say, okay,
9:51
listen, surgery is the next possible step. You
9:55
know, I was just honestly tired of feeling bad.
10:02
I had gotten married in 2018 and just we just
10:08
struggled ever since we were married. And I was
10:11
just so sick of being sick. And my doctor was
10:14
trying, OK, let's try this medication. Let's
10:16
let's switch it up a little bit and try this
10:18
one. I went to a more specialized hospital and
10:20
they suggested something else and it just wasn't
10:22
working. And so in the back of my mind, I was
10:25
kind of at the point I remember saying to my
10:27
husband one day, I. what if I just have the surgery?
10:31
What if I just do it? It didn't bother him. He
10:35
said, you know, that's your choice to make. And
10:39
so I remember I had a colonoscopy, just a routine
10:42
one that was par for the course with the medications
10:46
I was on. And my doctor said, you know, we can
10:49
try this other medication with your trends. We
10:53
don't know that it's going to work. It's just
10:56
another one that we could try. Or we can go the
10:59
surgery route. And since I had already kind of
11:03
had that thought in the back of my head, I was
11:06
kind of ready. I was I was just I remember just
11:11
looking at her and just saying, yep, I think
11:13
it's time. And so it wasn't a huge shock. And
11:17
I did have a little bit of time to mentally prepare
11:19
to do my research, all of that. And I think that
11:23
overall just made it a lot easier to cope with.
11:27
Yeah, I was just going to ask you what you did
11:30
or what and who you relied on to make that step
11:34
easier. And in doing a little bit of my research,
11:38
you know, I found obviously some posts on your
11:41
Instagram because you're pretty active there,
11:43
at least in terms of your IBD awareness and stuff.
11:45
You're pretty open. And it seemed that, you know,
11:48
your husband was a key player in sort of building
11:51
this main support system, right? So I want to
11:54
ask you. How did your IBD then and your condition
11:57
at the time, especially before the surgery, sort
11:59
of impact your relationship, your marriage? So,
12:04
yeah, I kind of just would spend my days, you
12:06
know, I would go to work, I would come home,
12:08
I would be so wiped out that I just would lay
12:11
on the couch. I couldn't really do anything else.
12:13
On the weekends, that was my time to rest and
12:17
recover and get ready for the next work week.
12:19
So it was a lot of resting, missing out on activities.
12:23
Really, we just we couldn't do a whole lot. I
12:26
remember us taking a trip to Colorado and there
12:30
was one day we were, you know, going to go out
12:33
hiking and mountains. And I just I couldn't.
12:35
I just stayed back. I just slept on the couch
12:38
the whole day. And that was kind of a day wasted.
12:41
And so it just impacted a lot of our not only
12:44
social life, but life at home. You know, I just
12:48
I couldn't really do much. You couldn't do much
12:51
before your surgery. Now, post -surgery, I'm
12:56
sure you can do a lot more. So in what ways do
12:59
you have this quality of life back and how are
13:03
you feeling today, post -surgery now, and the
13:07
treatment that's currently working for you? Yeah,
13:10
so now, I mean, ever since I had my surgery,
13:13
I've had a couple small flares, but we've been
13:15
able to get them under control. So overall, I
13:18
mean, the big thing is I've been able to gain
13:21
weight back and build muscle. And that in itself
13:24
has just allowed me to, you know, be more active
13:26
to get out and do things. I'm not constantly
13:30
running to the bathroom every 10 minutes because
13:33
I have my ostomy. So, you know, I can I can take
13:36
a little bit more time between bathroom trips.
13:39
And that's been a huge game changer because I'm
13:41
not, you know. taking time away to go to the
13:44
bathroom or being anxious about where the next
13:47
facilities are. And I overall, I'm just healthier.
13:53
All of my vitamins, I've been able to absorb
13:56
things. So I just have more energy. And right
13:59
now I'm currently taking Renvoke and Sky Rizzy.
14:04
So we're actually doing a combination therapy
14:07
of two biologics, which is a newer approach.
14:10
They, a lot of people, you know, haven't. done
14:13
that yet but since my disease is so stubborn
14:16
we tried just Runevoke first and that was not
14:20
helping enough so we decided to add in the Sky
14:24
Rizzy which is the Rizin Kizumab and that has
14:27
been helping a lot so ever since then I kind
14:30
of feel like a normal person like I don't have
14:32
symptoms most days so Yeah. So the IBD nerd in
14:37
me now has to ask you about this in more detail
14:39
because it's true. I haven't really heard about
14:40
this combination therapy either. Are you doing
14:43
these by injections, infusions at the same time,
14:45
separate? Like how often? Like take me through
14:47
sort of that regimen that you're currently on.
14:50
Yeah. So the Rinvoke is the, I believe it's Ustekinamide?
14:55
Yeah. I know that in different countries we call
14:59
them the same things. So I just want to make
15:01
sure that you know which one it is. But that
15:03
is oral. So I take that daily orally. And then
15:07
the Sky Rizzy is the Rizankizumab. That is an
15:10
on -body injector. So it's like this little box
15:14
that you put on your skin and then you push a
15:15
button and it goes over five minutes and injects
15:18
the medication. And if that's been working for
15:21
you, I mean, hey, combination or no combination,
15:23
you go with the flow, right? Whatever works,
15:25
if you pile on top, fine, right? We talked about
15:29
your medication. We talked about your treatment.
15:32
So tell me a little bit about what lifestyle
15:35
changes you went through, especially after your
15:38
ostomy. Because let's face it, an ostomy is not
15:40
necessarily a cure, especially if you have Crohn's.
15:43
Like I said, you sometimes experience some flares.
15:46
You have to manage those flares. How do you manage
15:49
them? But also what major lifestyle changes have
15:51
you gone through ever since you've had your surgery?
15:55
Yeah, so one big thing I've done is I dropped
15:58
down my work from full time to part time. I just
16:02
realized that I was so stressed and burnt out
16:07
and that was not ultimately helping my disease.
16:10
That was triggering symptoms, triggering flares.
16:12
And my husband does work, so that's been helpful.
16:15
We can still, you know, be able to support ourselves.
16:18
But I just made that a priority that I needed
16:21
to step. back a little bit and just take more
16:24
time focus on getting enough sleep I'm getting
16:27
enough rest and lowering overall stress and I
16:31
think that that in combination with the ostomy
16:33
has just made a huge difference I also have just
16:36
been trying to overall you know eat better manage
16:40
my you know intake of food not necessarily do
16:44
like diets or things like that but just watching
16:47
what I'm eating so that I can be the best version
16:51
of my healthy self as possible that's great now
16:56
you mentioned you've were able to put weight
17:00
back on weight has to do with your body and and
17:04
body and mind are connected very very closely
17:08
especially in terms of surgery there is very
17:12
often the struggle with body image how did you
17:16
deal with this Especially also waking up from
17:19
a surgery, seeing that your body fundamentally
17:22
changed, you now have a stoma. Tell me a little
17:26
bit about what was that like seeing it the first
17:29
time? Did you struggle with your body? How did
17:31
you accept your body again? What's your journey
17:34
with your own body image over the years? Yeah,
17:38
this is a tricky one because it is kind of bizarre
17:41
having IBD in itself. You know, you go through
17:45
your weight fluctuations, you lose weight, you
17:47
go on steroids, you gain a bunch of weight. And
17:50
then it just it shifts completely. And it's like
17:52
over time, I feel like you don't really know
17:54
where you're supposed to be. It's kind of like,
17:57
am I supposed to be this way or that way? Because
18:00
it keeps changing and I don't really know. And
18:03
then having your ostomy, it's it's a whole new
18:07
shift in the way you look. And my ostomy is permanent,
18:11
so I can never reverse it. And that in itself
18:15
took a while. I think it just takes time. One
18:20
thing that did help me personally is posting
18:24
on social media. And I don't necessarily think
18:28
that I had the confidence initially to do it.
18:31
But it's kind of one of those things that it's
18:34
like fake it until you make it. Like the more
18:37
you do it, the more practice you have with it.
18:39
Over time, your brain starts to convince itself
18:42
that, oh, you know. You can be confident no matter
18:46
what you look like, you're still a beautiful
18:48
person. And this goes for anybody. So I think
18:52
it's just time and practice, really. This is
18:57
a perfect example of how your mindset shifts,
19:02
how your perception of yourself and your body
19:04
shifts. IBD has a profound impact on anybody.
19:10
A surgery has a whole other... layer right of
19:14
impact on on a person you were diagnosed at 15
19:18
surgery at 26 how has IBD I was going to say
19:24
changed you as a person but maybe shaped you
19:27
as a person is is the better word especially
19:30
since you were diagnosed so early and you did
19:33
not have that completely normal sort of journey
19:37
through the teenage years into your young adulthood,
19:39
right? So I'm going to rephrase it and just say,
19:41
how has IBD shaped you as an individual, as a
19:44
human being today, you think? Yeah, so I think
19:48
there are a few different ways that it's really
19:51
overall shaped my life. I mean, like you said,
19:53
I was diagnosed pretty young and I don't necessarily
19:58
know anything different. But at the same time,
20:01
I did go through my younger years very healthy.
20:04
So I think, first of all, I've learned to value
20:08
relationships with people because you do realize
20:12
who the ones are that are going to be supporting
20:15
you, that are going to stick with you, that don't,
20:17
you know, take your disease personally when you
20:20
have to cancel plans or things like that. You
20:23
really do realize who is kind of in your corner.
20:26
Also, I think overall just learning how your
20:31
body works. So I've become much more in tune
20:35
with my body overall. Like, oh, this pain that
20:38
I'm feeling, what could it be? Could it be my
20:41
Crohn's? Could it be this? Could it be that?
20:43
Like you realize you learn how your body works.
20:46
You learn what affects it. You learn different
20:48
feelings and different things that help. And
20:51
I think that's really important, too. You know,
20:53
with the rise of just diseases in general, it's
20:56
good to just be in tune with your body and to
20:59
know what's going on. just to be proactive and
21:03
not to be a hypochondriac and worry about everything,
21:06
but just to know what's going on and to seek
21:10
treatment if it's needed. And then also, I think
21:13
just, you know, learning perseverance, too, that
21:19
life's not always going to be easy. And whether
21:22
you have IBD or not, you're going to have challenges
21:26
and you're going to have health problems and
21:28
you're going to have things throwing your way.
21:29
So learning different ways to cope. through those
21:32
i think is a huge just good life skill in general
21:36
to have and you mentioned you figure out the
21:41
people that are there for you that support you
21:43
and support is very important i feel like when
21:46
i talk to a lot of people with ibd they often
21:49
say that you know friends or even very close
21:51
family members struggle to really understand
21:53
what they're going through struggle to even accept
21:56
it sometimes you've had pretty incredible support
21:59
system, as you told me. So I think you're certainly
22:03
someone who might be able to give some advice
22:06
to people who are supporting someone with IBD.
22:11
What would you tell those people? What would
22:13
you tell friends or family members, spouses of
22:16
people living with IBD who are struggling a little
22:19
bit about how they should best support their
22:23
friends or loved ones when they're struggling
22:25
with active disease? So I would definitely say,
22:29
number one, don't take it personally when your
22:35
loved ones are canceling plans, when they are,
22:38
you know, flaking out on events or going to dinner
22:43
or things like that. Or they are, you know, you're
22:47
at dinner and they're not eating or they're only
22:50
eating certain things. I think that sometimes
22:53
people have the tendency to take that to heart
22:55
and to say, you know, oh, why are they acting
22:59
like this? This is weird. And they take it personally.
23:01
And it's so not supposed to be that way. Like,
23:07
I never want to impose my disease on anyone else.
23:12
But at the same time, I think, you know, talking
23:16
to other people about it and saying, hey, like,
23:19
I'm sorry, this is going to be. what I'm doing,
23:22
I'm going to have to cancel today. Or just so
23:25
you know, in the future, I'm not feeling great,
23:27
so I might have to cancel some plans. I think
23:29
just having open communication is good because
23:33
there is that tendency for people to distance
23:37
themselves. And also, if you are a person who
23:42
has a loved one with IBD, I would say, you know,
23:45
ask them what they might need in the moment.
23:47
Maybe they need... heating pad or they just need
23:51
you to come over and watch movies with them like
23:53
you can still spend time together but maybe it's
23:55
not going to look like what you had originally
23:58
planned. Yeah I think this is one of those things
24:01
that people often forget they think that they
24:02
have to sort of launch themselves into these
24:05
very grand gestures and sometimes simple actions
24:10
are more than enough. i think to support someone
24:13
right i mean that's always and i think that's
24:15
what i'm taking from from from what you would
24:17
give as advice and then i always say um be careful
24:21
that you don't impose things on them that you
24:23
don't push things on them right you know they
24:25
they will come to you when they need help when
24:30
they need some comfort right or just purely just
24:34
some conversation so sit back a little bit as
24:37
well and let them come to you as opposed to just
24:39
feeling that you have this obligation to constantly
24:43
check in on them, right? And that can be sort
24:45
of counterproductive sometimes, right? Shifting
24:48
a little bit to the people who struggle with
24:50
IBD, one of the, well, there's two things that
24:53
I keep seeing online in forums and questions,
24:57
and especially people who are freshly diagnosed.
25:00
And one of them, and I just saw this the other
25:03
day again on a forum, said, I just got diagnosed
25:06
with Crohn's disease. Now what? That's a very
25:11
broad question and there's a million ways to
25:12
answer them. But I would like to ask you that
25:15
question. So if I'm just recently diagnosed and
25:18
I have absolutely no idea where to go, I'm kind
25:20
of freaking out a little bit. I have this sort
25:22
of now what question. What would your advice
25:26
be? I would say definitely do your research.
25:30
You know, start looking up things about the disease.
25:34
I think it's good to be mentally prepared about
25:37
what your future could look like. To an extent,
25:41
I would say maybe avoid some of the online forums
25:46
where people go and they say they talk about
25:49
their worst symptoms they're having or they're,
25:52
you know, they mostly go there to vent about
25:54
things. And so you see the worst of the worst
25:56
there. And that can kind of look like doom and
25:59
gloom because you're saying, oh, no, like, is
26:02
that what my future is going to be like? And
26:03
it's not necessarily the case. There's no, you
26:07
know. guarantee that you're going to end up with
26:09
severe disease versus mild. I think it's good
26:12
to be informed, but also realize that there are
26:15
things out there that really are severe cases
26:18
that you're not necessarily going to experience.
26:22
So just keeping all of that in mind and treading
26:25
lightly as you're doing your research. Yeah,
26:29
I think that's sound advice. As much as there
26:32
is positive informs, there's negative. And the
26:35
same thing with the research, you know, I mean,
26:37
When I was diagnosed, that was in 2013. Obviously,
26:41
you know, the internet had been around for a
26:43
long time. But even just doing my research, and
26:46
maybe I was just too naive and too sick. But
26:49
I stumbled across some things where that kind
26:52
of put a scare in me as well, you know, and then
26:53
later on I learned, you know, okay, you just
26:55
need to take a step back and take everything
26:57
with a grain of salt because I think one of the
26:58
mistakes that I've made is, oh my God, I have
27:01
ulcerative colitis. That means that if I read
27:02
something about someone else's story, the same
27:04
is going to happen to me. And I was not able
27:07
to sort of distinct that, you know, make the
27:09
distinction that one person's ulcerative colitis
27:11
or Crohn's may be very drastically different
27:14
from another person's colitis or Crohn's. So
27:18
that's also something a little extra advising
27:20
to people when we talk about research. But yeah.
27:23
Now, I think it's truth that's pretty widely
27:28
acknowledged that the fear of surgery is present
27:32
in anyone who's diagnosed with IBD, and especially
27:35
if first treatments start to fail. So for someone
27:40
who has that fear, or for someone who's just
27:45
been told that surgery is the next step and the
27:47
only step, What kind of words of advice would
27:51
you give the dose folks? Yeah, so I would say
27:55
that just realizing that surgery isn't an end
28:00
all be all. It can actually greatly improve your
28:04
life in a lot of ways. I mean, my surgery was
28:07
both of my surgeries were due to scar tissue
28:10
mostly. And I mean, there is also inflammation.
28:14
But, you know, these these strictures are literally
28:19
just. tissue that's just blocking things from
28:22
moving. And just getting those out made a huge
28:25
difference in my quality of life, in the way
28:27
that I was feeling. I had less pain. And I think
28:31
that just knowing that surgery isn't the end
28:33
of the world, it can really help you in so many
28:37
ways. And it can even change the course of your
28:40
disease in some ways. Some people have a resection
28:44
and they feel amazing. And if they cut out just
28:47
that little area of inflammation, it doesn't
28:49
necessarily come back or at least for a while.
28:52
So I think just keeping an open mind about it
28:55
while it is scary and while it's a huge, you
29:00
know, undergoing. No surgery is fun or easy and
29:03
there's always recovery time. But just knowing
29:06
that it actually might improve your quality of
29:09
life. And having that in the back of your mind
29:12
can be helpful. Food is another topic, especially
29:15
more with Crohn's disease, that people experience.
29:19
It can be very problematic. Now, even after your
29:22
surgery, what impact does diet have on your well
29:25
-being? And tell me a little bit about how you
29:28
manage that. What do you eat? What can you not
29:31
eat? Where do you have to pay attention? Is it
29:33
constant paying attention? Are you able to sort
29:35
of relax a little bit sometimes as well and treat
29:38
yourself? Tell me a little bit about that reality
29:40
for you at this point. Yeah, so during my whole
29:43
course of my disease, I've tried all different
29:45
diets. I've tried, you know, there's specific
29:48
diets out there for IBD. I've tried them. I've
29:51
gotten minimal success, maybe a little bit. Especially
29:55
after you have ostomy surgery, you do have to
29:57
watch what you're eating. You can't have a lot
30:00
of really fibrous things like there's some raw
30:03
vegetables you have to avoid because they can
30:05
cause blockages. I have an ileostomy, so I don't
30:08
have my colon at all. So you especially have
30:11
to be more cautious about what you're eating
30:12
and make sure you're chewing things up really
30:14
well, making sure you're staying really hydrated,
30:17
drinking a lot of water, a lot of electrolytes,
30:19
things like that. So in that way, you do have
30:23
to kind of. plan ahead and have that in the back
30:26
of your mind. Like, okay, I need to be careful
30:29
when I'm eating this. Does this restaurant have
30:31
options for me that I can, you know, be able
30:34
to eat? I personally do find that I feel better
30:40
and my inflammation is a little bit better when
30:42
I avoid excess sugar and carbs and those kinds
30:47
of things. It's just personally based on me and
30:51
my lab work and things like that. But that doesn't
30:53
necessarily mean that you have to do that. It's
30:56
not like a gold standard or anything for IBD.
30:59
So over time, as you experiment and try things
31:04
and watch your inflammation, you will kind of
31:07
learn what works for you and what doesn't. Do
31:11
you have a very particular... trigger food that
31:14
you really need to absolutely avoid or it will
31:17
cause you just, you know, lots of pain and misery?
31:21
Yeah, I typically get that way when I have dairy.
31:25
So like anything with lactose, I do have to take
31:28
like lactate if I'm going to eat ice cream or
31:30
drink milk or something like that. Otherwise,
31:32
I will feel it a lot. So you don't. completely
31:36
shy away from it then like you know you still
31:39
consume it you just kind of find the balance
31:40
to yeah okay it's tough I know yeah and I do
31:44
you know I still find ways to treat myself sometimes
31:47
like I'll eat things on occasion but yeah I just
31:50
have to find that balance what are some other
31:52
challenges of living daily with an ostomy definitely
31:57
just being cautious about leaks so you know ostomy
32:03
bags leaking is a very common thing, especially
32:07
in people that are new to having meostomy. It
32:12
takes a while to find the bags that work best
32:14
for you, to find the accessories that work best.
32:17
It's a lot of trial and error. And some people
32:20
never really quite find that. And stoma shape
32:26
and size can also greatly affect the way, you
32:30
know, your bags stick, how your output comes
32:32
out. So that can be a huge hurdle for some people
32:37
to find ways to help their bags not leak I've
32:40
been very fortunate that I have found a system
32:43
that works really well for me and I rarely have
32:46
leaks usually it's if I eat something at night
32:48
and I you know that I shouldn't have eaten and
32:50
then overnight I might have you know some issues
32:53
but other than that I've found a good system
32:57
that really works for me but it did take time
32:59
and it takes a lot of trying different things
33:01
and I I think some people, especially people
33:04
that have the surgery as an emergency, they don't
33:09
want to necessarily be, you know, trying different
33:14
things and experimenting. And it's it has nothing
33:17
to do with like how they are. It's just that
33:20
is a lot to cope with. And they're still just
33:23
adjusting mentally and physically. So it does
33:27
it does really take practice, though, just like
33:29
anything else. Let's be very practical here.
33:32
How did you find that solution for you? How did
33:35
you approach this? Where do you start? So yeah,
33:38
that's a great question. When I was in the hospital,
33:41
I had a really great stoma nurse. And she was
33:44
amazing in helping me get samples ordered from
33:48
a lot of the major companies. So she even called
33:51
them, signed up. When I got home, I had them
33:54
waiting on my doorstep. So I had several different
33:57
bag styles, different... brands to try. And you
34:02
kind of learn quickly, oh, this one's not going
34:04
to work for me. This one works pretty well. And
34:07
there are even ones that have come out more recently
34:09
that you, you know, you can request samples from
34:12
the companies and they'll send you them for free
34:14
so you can try them out and see if they work
34:16
for your body. You can also call them and talk
34:18
to their specialists and say, hey, this is the
34:21
issue I'm having. Do you have anything you think
34:24
might work? And they're very good about saying,
34:26
OK, I think this. style or this design might
34:29
work for you we're going to send this and you
34:31
can give it a try and see if it helps so they're
34:34
really great about you know helping you along
34:37
with that so you're not just completely figuring
34:40
it out with no idea what to do so that's a good
34:44
piece of piece of information and for those who
34:45
are maybe a little bit timid or shy you know
34:47
ask for somebody, ask for some help, speak up,
34:50
you know, and there's no shame in it. And like
34:52
you said, you know, the quicker you find the
34:54
perfect way for you, the less challenges you
34:56
might experience with leaks, right? So you have
35:02
been living with this for over a decade. We mentioned
35:05
that before. So you've seen a lot, you've picked
35:08
up a lot, you've learned a lot. For you, what
35:13
are some of the most common misconceptions that
35:16
you've come across? in regards to Crohn's disease?
35:20
I think the one thing that people who have no
35:24
idea about the disease assume it's just a bathroom
35:30
disease, it's just a toileting disease. You're
35:32
just going to the toilet extra and, you know,
35:36
that's pretty much all it is. It's like a prolonged
35:39
stomach bug, which is not the case. We all know
35:43
that that's not the case, but I think that...
35:46
People that aren't informed about it just assume
35:48
that that's what it is. You know, you're having
35:51
accidents. You're not making it to the toilet.
35:53
You're in the bathroom constantly and stuck there.
35:56
And that's really just, there's so much more.
35:59
There's skin issues. There's joint issues. There's
36:02
other organs affected. It's really truly more
36:04
involved than that. And I think a lot of people
36:06
still don't realize that. It's either just like,
36:09
yeah, oh, it's food or toilet. And that's pretty
36:13
much it. And it could not be further. I mean,
36:16
it's definitely that. Sure, absolutely. But like
36:19
you mentioned, there's a lot of other things
36:21
that have implications with this. So as we come
36:26
to the end here, I want to quickly take a step
36:29
back and take a step forward. So let's start
36:31
with taking a step back. If you go back to that
36:34
15 -year -old Dana, knowing what you know now
36:38
after all this time, what would you tell yourself
36:42
on the day that you were diagnosed about what's
36:45
to come, about what you're about to experience?
36:48
I would probably tell myself that, you know,
36:54
things will get better eventually. it might not
36:59
be a linear journey it's not going to be easy
37:03
and it's not just take a medication and you're
37:06
fixed but overall there is usually a light at
37:11
the end of the tunnel it's not going to be a
37:14
straight tunnel and there are going to be relapses
37:17
and flares and things like that but you know
37:20
you're going to have those times where you are
37:23
in remission, your symptoms are under control.
37:26
And so really value those times because they
37:28
can be short, they can be long. You don't really
37:31
ever know how long your disease is going to be
37:34
at bay. So just don't take any good symptom days
37:39
for granted because, you know, they're going
37:43
to be up and down. And looking forward, do you
37:49
think that we will see a cure to IBD in our lifetime?
37:52
You know, I'd like to think so. I don't know
37:56
in our lifetime if that's going to happen, just
37:59
being the realist that I am. There's so much.
38:03
I feel like in a lot of ways, they're just uncovering,
38:06
you know, what true causes might be. And the
38:10
microbiome is so complex. And there are so many
38:13
underlying genetic things that haven't been explored
38:17
and things like that, that, you know, I would
38:20
I would really hope that. somebody makes an amazing
38:23
discovery and that there will be a cure but i
38:26
think that we're moving in the right direction
38:28
i don't know if it's going to be during our lifetime
38:30
but that would be great if it is but realistically
38:33
i'm not sure i i started off um thinking the
38:37
same thing i was i was more positive that like
38:39
okay maybe our lifetime could work but i have
38:42
since shifted a little bit and and even though
38:45
i'm very positive that it will happen i do think
38:47
that maybe it's for you know potentially the
38:49
next generation of people like this, but IBD.
38:52
And, you know, if it happens to them, great,
38:53
good for them, you know. Dana, thank you so much
38:57
for chatting me about your IBD journey today.
39:00
It's really great. And all the knowledge and
39:02
tips and tricks and learnings that you've shared
39:06
with me and also our audience. I wish you nothing
39:09
but the best moving forward. I think you are
39:12
certainly a great example of someone who suffered
39:16
through IBD for a long time. yes, ended up with
39:19
the surgery, but eventually did find a quality
39:21
of life back. So again, you know, part of the
39:24
awareness for me is also to show people who are
39:27
really afraid of surgery that, you know, it is
39:29
not the end of your life. It's not the end of
39:32
the world. And you can really live a very full
39:35
and prosperous life post -surgery. So thanks
39:39
so much for sharing. I wish you nothing but the
39:41
best and you keep that awareness going as well.
39:43
Thank you so much for having me. It's been a
39:45
pleasure. That's it for today's episode of Kaleidos
39:49
Unfiltered. I'm Frank Klebring, and if this hit
39:52
home or hit your gut, do us a favor, subscribe
39:56
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40:02
and Reddit. We'll see you soon for more inspiring
40:05
stories from the bathroom floor.