WEBVTT

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I know you have part time

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trying to make a decision because
of the unknown, right? Mm-hmm.

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And nobody will tell you
what’s going to happen

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unless you have connection
with the guy upstairs.

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Umm… And you have to have it… you have to have the
feeling and your gut which I mean, you don’t have.

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I have it. Okay, so you have
to go by your gut feeling.

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The problem with having something
called inflammatory bowel disease

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is the word bowel. Because people
don’t wanna talk about that

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and if it’s going to take someone putting
themselves out there to make that difference

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I want that to be me. Where I am now

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is never in a million years where I thought I would
be with as far as my disease has progressed.

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And when I look back there are some things
I probably would have done differently,

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but more than anything I would have appreciated
where I was at that point what (inaudible)

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I didn’t realize what point I could have
gone to. So my options right now are saying

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if my bowel can absorb at all, my other
option is getting the small bowel transplant.

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Dana was born healthy.

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She was 8 lbs, 6 oz and a very healthy baby. The
first three years were normal, life was normal,

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life was good. Oh, the first time I knew
there was something wrong with Dana

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was she had very high fevers
and a lot of pain, vomiting.

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Umm… We didn’t know what was going on but
she was obviously in a lot of distress.

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Dana was not feeling well for a long time

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of course she was a very young child and
really couldn’t express herself well.

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It took the diagnosis for Crohn’s. Uh… It
took us a little while to figure that out

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because with the pain and the fevers pain uh…
you know, pain in the right quadrant means

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usually appendicitis so off
we went to the hospital.

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She had an appendectomy umm… and shortly
thereafter the fevers and the pain

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were still there and so now
we had to go on a search.

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We made the rounds to a lot of different
hospitals, a lot of different doctors.

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Umm… It’s… it’s terrible feeling for a parent when you
know your child is suffering you don’t know what it is

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and you’re helpless to do anything.
Well, you know, I remember hearing our

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umm… pediatrician say to us

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when we were going to the hospital trying to figure it out ‘Oh! God
let’s pray its not Crohn’s. I didn’t know what Crohn’s even was

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umm… I do now.

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[music]

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How do you define Crohn’s disease?

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Don’t give me the… the anywhere from
the esophagus to the anus definition,

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but a little more in depth than the…

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Scientific or more broad…
Kinda layman’s terms,

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but… but more than just like one-sentence. The
way I summarize it is a chronic condition

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that causes inflammation in the intestine and can
affect inflammation anywhere from mouth to anus

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in the intestinal tract. And
because of that inflammation many…

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many symptoms and complications can
develop chief of which are belly pain,

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diarrhea, weight loss. Other complications as
well including fistulas which are communications

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between organs or organs and the skin,
blockages they can develop abscesses

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or pockets of (inaudible) and
develop complications with these.

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Twenty years ago probably our knowledge or
thought process about what caused the disease

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was that it was an immune-based disease something was going
wrong with the immune system leading to the inflammation

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that then develops into Crohn’s
disease and ulcerative colitis.

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And what I’d say over the 20 years since then is we’ve
learned that it’s much more complicated than that.

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This is not just an immune based disease but there are
many other factors that come into play including genetic,

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so having a genetic
predisposition to the disease,

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the role of the human microbiome, the bacteria that live
normally within our intestine and how they interact

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with the intestinal and
the… the intestinal cells

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and the immune system to lead to the development
of Crohn’s disease and ulcerative colitis

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as well as an increasing recognition but
maybe not as good about understanding,

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but about environmental factors,
things that we eat or ingest or inhale

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including smoking and what role they play
in the development of… of these diseases.

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Stoma is the part of your intestine

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when you have an ostomy bag that is
actually at the surface of the skin,

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so what they do is they
take the intestine inside

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to the surface of the skin push
it through and they fold it back

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so that what you’re technically looking at is the inside of your
insights… your looking at the inside portion of your intestines

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and they fold it over and stitch that down

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and that’s what the stoma is, the inside part of
your intestine that you actually physically see

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and that where stuff comes out of and empties
into the bag. So the purpose of the stoma

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is to allow some part of
your bowel or intestines

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to rest completely and heal without
anything passing through them

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uh… and your body to still, you know,
get nutrition and such either through

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what you do have or in my case IVs,

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while you’re giving that part of your
intestine to rest. So I have a jejunostomy,

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which is located in my jejunum which is really…
really high up in the intestinal tract.

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I think I have about eight centimeters of intestine before
everything comes out which is nothing in the scheme of things.

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So can you explain to
me what exactly is TPN?

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TPN stands for total parenteral nutrition

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and it’s a way of giving you
all the nutrition you need.

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By means other than your GI tract in this case it’s by intravenous
means. But it’s essentially giving you your basic food groups,

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your calories, dextrose or sugar calories,

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lipid calories the white
material in your bag now

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as well as amino acids those are

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the three major nutrient sources.
Then in addition all the vitamins

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that we know that you need, all the
minerals that we know you need,

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all the trace elements things like copper, zinc,
manganese, selenium and things like that,

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that have been shown to be necessary to
make sure the patients stay in good health.

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So how… how many hours is
a typical TPN infusion?

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I know mine is sometimes 12
or sometimes 14 depending on,

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you know, the volume of the bag. It
really depends on a couple of things.

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One is the volume of the bag and two is the
patient’s ability to handle the load of nutrients

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and the load of fluid volume
that’s being infused.

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So this bag when they first hangout it was
hugely for almost my volume is 4,500 milliliters

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and I think it weighs almost what
a… a liter is almost a pound,

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so around almost five pound?
Yeah, liter is a kilogram

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or a couple pounds yeah. So
leads me to my next question

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of how do I not explode? While
the fluid going into you

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uh… comes out of you and the fluid
going into you is the fluid you need

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to maintain adequate hydration of your
tissues. The question also can be framed in

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if you don’t get that fluid what will happen
and what will happen is you become dehydrated,

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your tissues will become dehydrated,
your all kinds of bad things happen

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with dehydration including uh… impaired
kidney function among other things.

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Some people think that the TPN
goes through the intestinal tract

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and they correlate the TPN intake
with what comes out of their GI tract

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that’s one misconception that people have,

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but it goes through your vascular
system and goes throughout your body,

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but not into the lumen of your intestinal
tract. So I can still be hungry

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even though I’ve just had a TPN infusion? Most
people uh… will still be hungry on the TPN

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and still have to satisfy
some oral requirements

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to put food in their mouth or liquid in their mouth.
So when I once told my dad that I was hungry and I…

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I wasn’t able to drive yet and I asked him

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if we could go get something to eat
and he looked at me and he’s like

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’I’m busy, just go hook up to your TPN.’ He
was wrong? Yeah, he was wrong because… Wrong!

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Eating and meal time is a very important
part of everybody’s life and people on TPN

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most of them enjoy being
with family around mealtime,

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some of them don’t but most of them do.
And a lot of people on TPN are cooks

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and they cook for their family uh… and that’s again
an important part of normal living a normal life.

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And the important part of
TPN is to try to maintain

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as normal lifestyle as possible.

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[music]

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Dr. Barron and I kinda have been
doing this journey together

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because when he first came to town I think it
was around the time that he started treating me

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which was when I was four. It’s very
rare that a child is diagnosed so young.

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So I was always kind of intense case of it,

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but I couldn’t have asked for a
better guide and all of this.

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What would… How would you
describe my type of Crohn’s?

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Umm… I would say severe. Umm… I
would say umm… complex, complicated

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because of all of the different procedures,
surgeries and things that you’ve had and…

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and all of the results of
that which, is you know,

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dependence on fluids intravenously and
nutrition intravenously and, you know,

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kind of chronic care and complications
associated with all of those things.

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Am I one of the more severe that you’ve
seen or the (inaudible)? Yes, absolutely.

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Do both? Umm… I would say you are
one of the most severe I’ve seen.

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Dr. Baron is probably

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one of the most important people in my life

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and mostly the reason that I’m here because I
wouldn’t have been able to go to Cleveland

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or get any of the care that I needed. Had he not already
been in the picture because I wouldn’t be here?

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I remember a particular incident where I was really…
really sick. I was in the hospital, I was 18

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and I got antibiotic resistant Staph infection
that I caught from being in the hospital.

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And you did four emergency blood
transfusions. And I was… I was very sick.

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Umm… I had a couple of doctors say to me that they
didn’t think that I was going to pull through.

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But one of the… the… the scarier
times as when I had MRSA… Mm-hmm.

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You wanna talk a little bit about kind
of what that involved and why, you know,

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it’s Crohn’s in itself may not be a fatal disease but
the complications such as something like that can be

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and are serious and why that then
becomes a much bigger problem.

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There were specialists from all over.
Right. So you had MRSA

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(Methicillin-resistant
Staphylococcus aureus)

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which is sort of a scourge of hospitalization
umm… which is normally a skin bacteria

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but you had a central line, so a
catheter directly into a vein

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that goes to your heart, right? So you
all it takes is a few bacteria to,

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you know, to generate an infection that travels
through your entire body and in your particular case,

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not only did you have a bacterial infection in your
blood which we call bacteremia, but it’s settled.

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Some of the bacteria settled on the valves of your heart
and you ended up with what’s called the endocarditic

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which can be fatal because these little
bacteria, these little clumps of bacteria

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are like a little emboli, we call them
can break off and go to your brain,

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they can cause, you know, horrible infection
and they can be very hard to treat.

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Sometimes to the point of meeting actually
heart surgery to get rid of these things,

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you know, develop a little pus balls in your… in your heart,
fortunately, you know, with several week course of antibiotics,

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you were able to kick that and get rid
of it, but it was a little touch and go.

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And I remember during that
same hospitalization that

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umm… we couldn’t have a central line for a period of time so
there we tried to give you some of your medication orally

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and including anticoagulants
to try and prevent blood clots

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because you were developing clots in your veins
because of all these deep… deep vein IVs you had.

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And you ended up starting to bleed
from your stoma I remember,

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a pretty significantly to the point of you
needing transfusion of a couple of units and…

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and so it was a very scary time. I
think he kicked me out of his practice

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when I was 22, it was fairly recently.

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You never going to be rid of me completely. Well, no,
you know, obviously not, you’re back here, right?

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Hi, Dana, good job.

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Good job, Dana. (inaudible).
Okay, they come on. (inaudible).

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Oh, she can get up on herself, look at her.
Dust yourself off.

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And there you go. Come on.
As a kid growing up,

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you know, it’s funny because I knew I was… I was
different. I mean, obviously I was absent from school

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a lot more than other kids
and dealt with things that,

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you know, other kids don’t have to deal with
steroids, and medications and hospitalizations.

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Steroids were unnecessary evil and for most
of my childhood I was on them constantly.

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It was the only thing that could keep my (inaudible)
from flaring, but I hated the way they made me feel

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and I was very self-conscious about my chubby cheeks.
But I… I was thinking about this the other day

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that it wasn’t until probably junior high

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that it dawned on me that
I was the \"sick kid.\"

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Umm… I never felt like I was a sick kid.
I never figured that’s… that’s me,

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but I remember I was in some
sort of social group or…

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or doing something some extracurricular activity where
there’s a girl with an illness and I’m like \"Oh, you know,

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that so-and-so she’s… she’s sick \" and I’m
like \" Oh, my God! Hey, that’s me in…

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in my school and in my class and Oh!
I’m that girl like

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\"Oh, wow! Hey, I never really thought
I’m… I’m the sick kid.\" So I didn’t feel,

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I didn’t identify with that until
later which I’m… I’m grateful for

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because it never was a part of, you
know, the formative years of my life

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of really becoming who I was. I never was like \"Okay,
I’m the… I’m the sick girl so I can’t speak up,

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I can’t, you know, remain suppressed.
I’m loud, I’m a noxious,

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I’m, you know, just who I am anyway and
then as I figured it out after all that

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I’m like \"Oh, hey, that… that is me…
Okay, all right whatever not a big deal.

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I’ve never treated Dana umm… in
growing up like she was a sick kid

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and just the other day she… she thanked me for that. She said
‘You know, I never really thought of myself as the sick kid

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until I got to high school and I realized,

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you know, I’m just missing a lot of school
and I was missing a lot of social things

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and I realized I’m the sick kid.’ But she
thanked me for not treating her differently.

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And I… I tried to give her as much
normalization as I could with the situation.

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You know, umm… not always easy,
but it was funny because,

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you know, when… when Dana would do something
where there was going to be a consequence

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umm… I would ground her and she would say

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\"That’s okay, I’m… I’m sick. I don’t feel
well anyway. I’m not going anywhere.\"

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And I would say \"Okay, when you feel better, you’re
grounded.\" And I would postpone the ground… the grounding,

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but I would do it. Umm… So
it’s hard to parent a child

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with an illness, it’s really hard.

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My mom had an interesting job raising
me and, you know, figuring out

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\"Okay, are you biasing me that you don’t feel well or do
you really not feel well and are you not going to school.\"

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Because I am… I am a normal kid of course, you
know, if I really didn’t want to take that test

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\"Hey, I don’t feel well.\" You know, my stomach or/and, you know,
what the stress of it probably did bring on a stomachache so,

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you know, how much of that is… is, you
know, kind of exaggerated I don’t know.

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We’ve had some terrible experiences
with teachers in school

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who didn’t understand the nature of
Dana’s illness, didn’t understand that…

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that she could be sick throughout the day and
have to use the bathroom for hours at a time

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and they would, you know, say \"No… no, you can’t get
up to use the bathroom again, you just used it.\"

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She went through a very difficult times,
she couldn’t finish her senior year

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because she had missed some time. She was
hospitalized and school would not allow her

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to be tutored to graduate.

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So, you know, socially
it’s… it’s been difficult

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because growing up, you know, if you’re
not there and I was absent a lot,

00:18:55.000 --> 00:18:59.999
you know, you kind of get forgotten,
not purposely in any way,

00:19:00.000 --> 00:19:04.999
shape or form. Umm… But
if you’re not around and,

00:19:05.000 --> 00:19:09.999
you know, you’re not seen every day like everyone
else at school, you’re not as socially in it

00:19:10.000 --> 00:19:14.999
as you would like to be which, you know, it’s a very…
the hardest thing about having chronic illness

00:19:15.000 --> 00:19:19.999
is how isolating they are and
especially as a girl and, you know,

00:19:20.000 --> 00:19:24.999
growing up girls are extremely social.

00:19:25.000 --> 00:19:29.999
Umm… I… I kinda was like that… that floater
girl who was kinda friends with everyone

00:19:30.000 --> 00:19:34.999
but didn’t really belong to a specific
group. Umm… There were times in my life

00:19:35.000 --> 00:19:39.999
that I had best friends that were
extremely understanding that

00:19:40.000 --> 00:19:44.999
umm… you know, I was very close with who knew
everything they would keep me updated with, you know,

00:19:45.000 --> 00:19:49.999
what was kinda going on at
school and stuff like that.

00:19:50.000 --> 00:19:54.999
Umm… But a lot of the time I have difficulty relating
to kids my age because I was going through stuff

00:19:55.000 --> 00:19:59.999
that was so serious and so much more

00:20:00.000 --> 00:20:04.999
heavy and then, you know, okay,
you know, prom is going on,

00:20:05.000 --> 00:20:09.999
everyone’s figuring out what color dress they want
to wear and I’m being told I have an infection

00:20:10.000 --> 00:20:14.999
that could kill me and they don’t know what
to do and they can’t treat me with, you know,

00:20:15.000 --> 00:20:19.999
certain blood thinners because I’m bleeding out.
And you know, my friend would call me and be like

00:20:20.000 --> 00:20:24.999
\"Okay, this is what prom and blah… blah… blah and I’m like\" Look, I love
you and I appreciate that you’re keeping the informed and everything,

00:20:25.000 --> 00:20:29.999
but I can’t (inaudible)\" because
they have so much stuff going on

00:20:30.000 --> 00:20:34.999
so much more severe so and that’s
even further isolating too.

00:20:35.000 --> 00:20:39.999
Yeah, I had often said to Dana, I’m
sorry that you don’t have the luxury

00:20:40.000 --> 00:20:44.999
of being a lazy teenager or
a free thinking teenager.

00:20:45.000 --> 00:20:49.999
Umm… You have other things

00:20:50.000 --> 00:20:54.999
that you’ve got to be mindful of, you
know, she just didn’t have the luxury

00:20:55.000 --> 00:20:59.999
of being frivolous of or even
the carefree attitude of yeah,

00:21:00.000 --> 00:21:04.999
you know, what am I gonna wear today or what
color dress do I want to wear to the dance.

00:21:05.000 --> 00:21:09.999
Those were not in Dana’s foremost thinking.

00:21:10.000 --> 00:21:14.999
When I went to college I fell
in with some amazing kids

00:21:15.000 --> 00:21:19.999
that have been there for me and are just incredible
and it was kind of a new experience for me

00:21:20.000 --> 00:21:24.999
to have to explain in an older age
what I’m going through and my disease

00:21:25.000 --> 00:21:29.999
because I was growing up I went to a private
school and everyone kinda knew each other and I…

00:21:30.000 --> 00:21:34.999
and we’re just kinda knew from the time that we were little, so I
really didn’t have to explain it much getting older To people,

00:21:35.000 --> 00:21:39.999
you know, what it was and how to deal
with it. And so when I went to college

00:21:40.000 --> 00:21:44.999
that was my first experience of doing that and the response that
I got I was so nervous to like explain to me and friends like

00:21:45.000 --> 00:21:49.999
\"Yeah, I have an ostomy bag,
and this is what it does,

00:21:50.000 --> 00:21:54.999
and this is what it is and this is
what I deal with because of it.

00:21:55.000 --> 00:21:59.999
Umm… You know, because they want to explain something
like that. And I was just blown away by their response.

00:22:00.000 --> 00:22:04.999
And most of my friends are guys at this point and…
and this is how I’ve always been guys have been,

00:22:05.000 --> 00:22:09.999
you know, kind of my closest friends. But, you
know, where I expected them to just be like

00:22:10.000 --> 00:22:14.999
\"Oh, okay, you know, and just kinda, you know, take
it in.\" I didn’t expect really anyone to be like

00:22:15.000 --> 00:22:19.999
\"Okay, I don’t want to hang out with, you know, that the
people I really like that.\" What I didn’t expect is like

00:22:20.000 --> 00:22:24.999
one of my guy friends was like \"Oh, okay, well, you have to teach me
about it.\" \"Me teach you? What… why do I have to teach you about it

00:22:25.000 --> 00:22:29.999
and he’s like \"Well, I got if you’re not
feeling well and I have to change it for you

00:22:30.000 --> 00:22:34.999
or empty it for you or take care
of it for you and I’m like\"

00:22:35.000 --> 00:22:39.999
My mom does that (inaudible) that like I would never ask that
(inaudible) he was like \"Well, but what I want to be able to do for you

00:22:40.000 --> 00:22:44.999
if I need to\" and I’m like \"Okay, like you
have no idea how happy you just made me\"

00:22:45.000 --> 00:22:49.999
and like, you know, how sweet that is because
like I don’t know if I could even picture myself

00:22:50.000 --> 00:22:54.999
doing that for someone else so, you know,

00:22:55.000 --> 00:22:59.999
I was really like blown away
by the response that I got.

00:23:00.000 --> 00:23:04.999
She is able to maintain
some of her friendships

00:23:05.000 --> 00:23:09.999
but she chooses to do so kind of at a distance
because she’s not always able to engage

00:23:10.000 --> 00:23:14.999
and so she… she does keep…

00:23:15.000 --> 00:23:19.999
keep in touch by texting or
talking on the phone or Facebook.

00:23:20.000 --> 00:23:24.999
Umm… She also doesn’t
want to burden others.

00:23:25.000 --> 00:23:29.999
And so she feels that
her disease could be a…

00:23:30.000 --> 00:23:34.999
a burden to others, so she pulls back a little
bit. I think social media has helped a great deal.

00:23:35.000 --> 00:23:39.999
Dana belongs to a few organizations
umm… that she finds great…

00:23:40.000 --> 00:23:44.999
great support from, great information.
She even post some things

00:23:45.000 --> 00:23:49.999
that help other people. And so there is
something to being able to find a community

00:23:50.000 --> 00:23:54.999
that you can fit in with. The most valuable
things that I’ve learned in managing myself

00:23:55.000 --> 00:23:59.999
has been from other patients,
not textbooks, not doctors.

00:24:00.000 --> 00:24:04.999
I depend on websites and
a lot of social media

00:24:05.000 --> 00:24:09.999
to get this information. You know, if I’m
having an issue and I’m having a problem,

00:24:10.000 --> 00:24:14.999
I throw it out there to my online community.
Here I am talking to a group of people

00:24:15.000 --> 00:24:19.999
who know exactly what I go through. Who deal with
the same things every day? I don’t have to explain

00:24:20.000 --> 00:24:24.999
the issue too and they… just they get it.

00:24:25.000 --> 00:24:29.999
Hey, Dana, what you gonna do?
Okay, like (inaudible).

00:24:30.000 --> 00:24:38.000
[music]

00:24:40.000 --> 00:24:44.999
All right, wow!

00:24:45.000 --> 00:24:53.000
[music]

00:25:00.000 --> 00:25:04.999
A great (inaudible).

00:25:05.000 --> 00:25:13.000
[music]

00:25:25.000 --> 00:25:30.000
[music]

00:25:50.000 --> 00:25:54.999
No one ever really dies from Crohn’s.
But its complications are there.

00:25:55.000 --> 00:25:59.999
In the last like five or six years alone

00:26:00.000 --> 00:26:04.999
I think I’m equal about time
spent out of hospitals,

00:26:05.000 --> 00:26:09.999
time spent in hospital. (inaudible).
(inaudible). Hi. Hi.

00:26:10.000 --> 00:26:14.999
Natasha (inaudible) gonna go into
office (inaudible) the registration.

00:26:15.000 --> 00:26:19.999
Okay. It can be a number of things
that I have to come here for.

00:26:20.000 --> 00:26:24.999
Umm… If it’s a surgery related issue, I
have these developments called fistulas

00:26:25.000 --> 00:26:29.999
where I get these little tracks
that form from my intestine

00:26:30.000 --> 00:26:34.999
to other organs or to the surface of the
skin, and they can be really dangerous.

00:26:35.000 --> 00:26:39.999
Umm… And those are… those are more serious
because you deal with like getting a septic and…

00:26:40.000 --> 00:26:44.999
and that’s definitely
like a surgical issue.

00:26:45.000 --> 00:26:49.999
Umm… So that would be I would come and have to
have something surgical and recover from them

00:26:50.000 --> 00:26:54.999
umm… that’s a whole different aspect then like when I have
to come for to regulate electrolytes or TPN involved things

00:26:55.000 --> 00:26:59.999
and that’s just a matter of
staying and getting it done.

00:27:00.000 --> 00:27:04.999
The Cleveland Clinic has become
Dana’s home away from home.

00:27:05.000 --> 00:27:09.999
Dana’s last day in Cleveland was three months.
She came home and ended up in the hospital

00:27:10.000 --> 00:27:14.999
at home after a few days for a couple weeks

00:27:15.000 --> 00:27:19.999
and then had to go back to Cleveland. My name is Dr.
(inaudible) . Hi! One of the colorectal surgery residents

00:27:20.000 --> 00:27:24.999
for the (inaudible). Let’s see what
brings you in. I’m sorry. I feel for you.

00:27:25.000 --> 00:27:29.999
Umm… I’ve been having
TPN and kidney issues.

00:27:30.000 --> 00:27:34.999
I’m lucky enough to be (inaudible)
patient and so (inaudible).

00:27:35.000 --> 00:27:39.999
So that’s pretty much how I ended up here.
Okay. So, you’re on TPN apparently.

00:27:40.000 --> 00:27:44.999
Do you take anything in per mouth? Mm-hmm.
Yeah. Yeah, but nothing gets absorbed.

00:27:45.000 --> 00:27:49.999
But I eat and drink. Yeah.

00:27:50.000 --> 00:27:54.999
Followed by like Steiger, normally. Yeah.

00:27:55.000 --> 00:27:59.999
Yeah. Home TPN….

00:28:00.000 --> 00:28:04.999
Anything else that we haven’t
talked about that I should know?

00:28:05.000 --> 00:28:09.999
Oh, you can tell him my stoma has gone back in
again but that’s a common thing. It’s not a big…

00:28:10.000 --> 00:28:14.999
that happens and retracts it? Yea,
but it makes it hard to pouch.

00:28:15.000 --> 00:28:19.999
Yeah, I bet. Is it still… Looks like
pink ad still having good output?

00:28:20.000 --> 00:28:24.999
Um, yes and no.

00:28:25.000 --> 00:28:29.999
The output has decreased a little bit but it’s like more…
It’s pink but it’s like pretty much flush with the skin.

00:28:30.000 --> 00:28:34.999
And you were seen by our
intestinal rehabilitation program.

00:28:35.000 --> 00:28:39.999
Yeah. What did they say last time?
What about the transplant?

00:28:40.000 --> 00:28:44.999
We started doing transplant workup

00:28:45.000 --> 00:28:49.999
but I kind of put it on pause… because I’m
not sure if I want to do that yet or not.

00:28:50.000 --> 00:28:58.000
[music]

00:29:05.000 --> 00:29:09.999
[non-English narration]

00:29:10.000 --> 00:29:14.999
Feeling better. So I’m a colorectal
surgeon. I did a specialization…

00:29:15.000 --> 00:29:19.999
sub-specialization in colorectal
surgery where I focus on diseases

00:29:20.000 --> 00:29:24.999
related to colon, rectum and small bowel.

00:29:25.000 --> 00:29:29.999
Unfortunately, when one is
diagnostic to Crohn’s disease

00:29:30.000 --> 00:29:34.999
75% to 90% of the time still he
or she will require a surgery.

00:29:35.000 --> 00:29:39.999
So I remember when I first came to you.

00:29:40.000 --> 00:29:44.999
I was really sick. I had many surgeries prior
that. I was just getting worse and worse

00:29:45.000 --> 00:29:49.999
and just surgery after surgery
(inaudible) removing bowel

00:29:50.000 --> 00:29:54.999
and I remember you said to me \"I can help you, but it’s going to
take a couple of years.\" And at that point I was so frustrated

00:29:55.000 --> 00:29:59.999
and so tired of being in hospitals\" that I was
just like I… I don’t know if that’s something that

00:30:00.000 --> 00:30:04.999
I can take and… and you explained
it to me more than you said

00:30:05.000 --> 00:30:09.999
umm… you know, you give me some
time and it’s gonna take some steps

00:30:10.000 --> 00:30:14.999
but we can do this and this is
the best way to do it right.

00:30:15.000 --> 00:30:19.999
I remember really being blown
away by the… the human aspect

00:30:20.000 --> 00:30:24.999
umm… that you had because most
surgeons that I hadn’t encountered

00:30:25.000 --> 00:30:29.999
don’t really have bedside manner and… and
don’t really treat you like a person

00:30:30.000 --> 00:30:34.999
and I remember after meeting you I felt
like you had a vested interest in,

00:30:35.000 --> 00:30:39.999
you know, I wasn’t just a number

00:30:40.000 --> 00:30:44.999
and I remember even saying that to you.
I… I really had no words to…

00:30:45.000 --> 00:30:49.999
to describe how it made me feel and so
that built that trust in you for me.

00:30:50.000 --> 00:30:54.999
How do you teach that to

00:30:55.000 --> 00:30:59.999
umm… other surgeons, you know,
to have that human aspect?

00:31:00.000 --> 00:31:04.999
First of all I thank you for
your words, but, you know, the…

00:31:05.000 --> 00:31:09.999
this interview is about you not me.

00:31:10.000 --> 00:31:14.999
You are a resilient, an incredible person
that what you went through in your life

00:31:15.000 --> 00:31:19.999
and to be able to stand up
uh… with that character

00:31:20.000 --> 00:31:24.999
is beyond that anybody can understand,
so I salute you for that.

00:31:25.000 --> 00:31:29.999
What is it that you say to me every day before you leave? I always
(inaudible) \"Did you hug your colorectal surgeon today. Come in.

00:31:30.000 --> 00:31:34.999
Yeah. Thank you. Give me a hug.

00:31:35.000 --> 00:31:39.999
Thank you. All right. You’re welcome.
You did awesome.

00:31:40.000 --> 00:31:48.000
[music]

00:31:50.000 --> 00:31:54.999
I don’t know the longest
hospital days I’ve had exactly,

00:31:55.000 --> 00:31:59.999
but it’s been at least a couple of months.

00:32:00.000 --> 00:32:04.999
That first really began when I started
to have to have surgeries and

00:32:05.000 --> 00:32:09.999
umm… that was when I was 16.
I had a couple before that

00:32:10.000 --> 00:32:14.999
when I had an… that infection that was really…
really bad that I almost didn’t survive.

00:32:15.000 --> 00:32:19.999
So they really didn’t start
getting really lengthy

00:32:20.000 --> 00:32:24.999
until my surgery started.
So I get to kinda learn

00:32:25.000 --> 00:32:29.999
how to live in a hospital. I
equated it to go away to school

00:32:30.000 --> 00:32:34.999
because I was like a dorm. You know, except you
don’t have people waiting (inaudible) in the dorm,

00:32:35.000 --> 00:32:39.999
so I kinda (inaudible) that way like ‘Hey,
you (inaudible) do all the bad stuff for me

00:32:40.000 --> 00:32:44.999
and (inaudible) sit here and watch
TV all day, but you do get bored.

00:32:45.000 --> 00:32:49.999
Oh, yeah, Dana walks around here whether
she’s in her brown robe and flip

00:32:50.000 --> 00:32:54.999
or she’s gotten dressed that day. Umm…
She walks around with her (inaudible)

00:32:55.000 --> 00:32:59.999
and people know who she is. This is Susan.

00:33:00.000 --> 00:33:04.999
Your daughter is amazing. Thank you…
(inaudible) every day and she’s always smiling

00:33:05.000 --> 00:33:09.999
and give me a hug and… She kinda looks out for me. Oh, thank
you so much. (inaudible) sound for me away from home.

00:33:10.000 --> 00:33:18.000
[music]

00:33:20.000 --> 00:33:24.999
Crohn’s has affected our relationship.

00:33:25.000 --> 00:33:29.999
We have a great relationship.
Dana and I are very close.

00:33:30.000 --> 00:33:34.999
We don’t always agree specifically Dana’s
care, some of the choices she’s made.

00:33:35.000 --> 00:33:39.999
And it’s been… it’s been an issue for us.

00:33:40.000 --> 00:33:44.999
Less… less now that she’s older and
more responsible for… for herself. But…

00:33:45.000 --> 00:33:49.999
Most responsible. But her decisions
impact everyone and so umm… if…

00:33:50.000 --> 00:33:54.999
So everyone should be able
to tell me how to live.

00:33:55.000 --> 00:33:59.999
No… no, this is your life and this is your… your
disease and you get to make those decisions…

00:34:00.000 --> 00:34:04.999
Did you got that on camera, right? We have… What
I’m saying is that… We have a record of that.

00:34:05.000 --> 00:34:09.999
When Dana decides to go rogue
umm… there’s a price to pay

00:34:10.000 --> 00:34:14.999
and the family is brought into that because if data
is not feeling well and Dana wakes up and not…

00:34:15.000 --> 00:34:19.999
can’t breathe then we gotta call an ambulance
and, you know, it’s… it’s kinda stressful and…

00:34:20.000 --> 00:34:24.999
But it’s not like that happens always

00:34:25.000 --> 00:34:29.999
because I’m going \"rogue.\" Not always, but I’m just
saying the part… Often not. The part that you play…

00:34:30.000 --> 00:34:34.999
You’re not helping this compliance…
She’s too honest with me.

00:34:35.000 --> 00:34:39.999
I’m not honest enough with her.
That’s accurate.

00:34:40.000 --> 00:34:44.999
I’m very open and honest. And we mean to
very different things when we say that.

00:34:45.000 --> 00:34:49.999
She means that I’m not truthful enough with
her. I mean, that I hold back when I shouldn’t

00:34:50.000 --> 00:34:54.999
and that she doesn’t and she
means that she’s authentic.

00:34:55.000 --> 00:34:59.999
No, I mean, I believe in having
open honest relationships

00:35:00.000 --> 00:35:04.999
and why not so… That’s code
for I get to be critical

00:35:05.000 --> 00:35:09.999
and tell you everything I think and you don’t get
to tell me any of that and it’s a double standard.

00:35:10.000 --> 00:35:14.999
I have no answers… So when
she says I want this is like

00:35:15.000 --> 00:35:19.999
\"Oh, so you.\" She shall say like \"Oh,
(inaudible) you want a service relationship,

00:35:20.000 --> 00:35:24.999
it used to be no and now the answer’s yes.
I do want a service relationship.

00:35:25.000 --> 00:35:29.999
Okay, thanks for the honesty. You’re
welcome. That’s great… that’s great.

00:35:30.000 --> 00:35:34.999
You never stopping apparent. She’ll… she’ll look at me
sometimes when I’ll say something to her and she’ll say

00:35:35.000 --> 00:35:39.999
\"Mom, you know, I don’t need you to tell me what to
do.\" And I said \"You’re right and I’m still your mother

00:35:40.000 --> 00:35:44.999
and I’ll always be your
mother, so I care I’m sorry.\"

00:35:45.000 --> 00:35:49.999
So I was born into the family to
have a disease that involved shit.

00:35:50.000 --> 00:35:54.999
And when I say that I’m… I’m talking
about my grandparents and my uncles

00:35:55.000 --> 00:35:59.999
and my cousins, and we are very

00:36:00.000 --> 00:36:04.999
flatulent family and so… I
can’t believe you said that.

00:36:05.000 --> 00:36:09.999
It actually works really well.
Dana has a… a… a wicked

00:36:10.000 --> 00:36:14.999
but in a great way sense of humor and
the two of us can laugh about nothing.

00:36:15.000 --> 00:36:19.999
I think it’s a great way to go through
life. You know, laughing I love to laugh,

00:36:20.000 --> 00:36:24.999
it’s one of my favorite things. I love
to bring on laughter from other people,

00:36:25.000 --> 00:36:29.999
especially with something like a hardship
like this disease. But, you know,

00:36:30.000 --> 00:36:34.999
and there’s nothing really funny
about Crohn’s disease except that,

00:36:35.000 --> 00:36:39.999
you know, we do have a lot
of potty humor in the house.

00:36:40.000 --> 00:36:44.999
You know, we talk about butts and shit and
poop and there’s some funny stuff there.

00:36:45.000 --> 00:36:49.999
I can make her laugh with one word. She can make me laugh
pretty much with a one-word. I can make cry with one word,

00:36:50.000 --> 00:36:54.999
same thing we’re very much alike which is great
and can create problems at the same time.

00:36:55.000 --> 00:36:59.999
But we laugh a lot, we laugh every day and laughter is how
we get through… So how we get along that’s how we get by.

00:37:00.000 --> 00:37:04.999
It is how we get through this.

00:37:05.000 --> 00:37:09.999
See I am still with my family
even though we’re far… far apart.

00:37:10.000 --> 00:37:14.999
Actually they’re crazy and
I rather not be with them…

00:37:15.000 --> 00:37:19.999
We have used humor in our family
to umm… to be able to communicate,

00:37:20.000 --> 00:37:24.999
to try to sometimes take the sting out of things, this
is a situation where Dana has an acute sense of humor.

00:37:25.000 --> 00:37:29.999
Uh… There’s a lot of issues
that involve her illness

00:37:30.000 --> 00:37:34.999
that kinda take you down a
path that sometimes it’s…

00:37:35.000 --> 00:37:39.999
it’s pretty funny. Dana is the first one to
be able to laugh at that and I think that…

00:37:40.000 --> 00:37:44.999
that kind of ease is some of the
difficulty for her and… and everybody.

00:37:45.000 --> 00:37:49.999
We used to joke about if someone ever tried to like
attack or rob me that I could shoot shit at them.

00:37:50.000 --> 00:37:54.999
It’s a superpower, ostomy girl.

00:37:55.000 --> 00:37:59.999
I can shoot shit in a single
score, anytime, anywhere.

00:38:00.000 --> 00:38:04.999
Acid shit too, not just regular poop,
acidic poop. It’s better than maize

00:38:05.000 --> 00:38:09.999
and it’s constantly on me so, you know, I don’t have
to worry about carrying any sort of the watch out

00:38:10.000 --> 00:38:14.999
you attacked the wrong
little girl, dude. Oh, no.

00:38:15.000 --> 00:38:19.999
Yeah, my mind goes there. It has (inaudible)
it’s funny. I could be a cartoon.

00:38:20.000 --> 00:38:24.999
[music]

00:38:25.000 --> 00:38:29.999
Help! Help!

00:38:30.000 --> 00:38:34.999
There is no one to help you.

00:38:35.000 --> 00:38:39.999
Oh, no, you don’t, not today Evil Crohn’s.

00:38:40.000 --> 00:38:44.999
Ostomy girl not even you can stop me.

00:38:45.000 --> 00:38:49.999
That’s what you think.

00:38:50.000 --> 00:38:54.999
Now what a (inaudible) we got you down.

00:38:55.000 --> 00:38:59.999
You think so uh…! How about
a super dose of toxic shit.

00:39:00.000 --> 00:39:04.999
Take this you wild creatures.

00:39:05.000 --> 00:39:09.999
No! (inaudible).

00:39:10.000 --> 00:39:14.999
You are done Crohn’s. Eat shit and die.

00:39:15.000 --> 00:39:20.000
[music]

00:39:30.000 --> 00:39:34.999
I came over to the hotel a week ago,

00:39:35.000 --> 00:39:39.999
I mean, a transition
period and that means that

00:39:40.000 --> 00:39:44.999
I have no idea what is on the other side.
It’s the beginning of many transition periods

00:39:45.000 --> 00:39:49.999
because even when I get back to Vegas
that’s still transition period.

00:39:50.000 --> 00:39:54.999
The idea of coming over to the hotel
before I go home is home is far.

00:39:55.000 --> 00:39:59.999
Home is at least a three and a half-hour
plane ride if I need to come back

00:40:00.000 --> 00:40:04.999
and sometimes the circumstances
are a little iffy for that.

00:40:05.000 --> 00:40:09.999
Umm… So the idea of coming over to the
hotel is to make sure that I’m okay.

00:40:10.000 --> 00:40:14.999
That I’m stable without being in the hospital before
going home so I don’t need to and come right back.

00:40:15.000 --> 00:40:19.999
And that I couldn’t handle,

00:40:20.000 --> 00:40:24.999
you know, everything that I need to be able to handle,
hooking up to my TPN, doing all that on my own like I do.

00:40:25.000 --> 00:40:29.999
Most people with Crohn’s even though
they have absorption issues are stable.

00:40:30.000 --> 00:40:34.999
You know, they can still be really… really
sick and having diarrhea and thrown out,

00:40:35.000 --> 00:40:39.999
but they’re stable. They may get a little dehydrated,
may go to the emergency room occasionally for that,

00:40:40.000 --> 00:40:44.999
umm… but you’re not dealing with
electrolyte losses that are critical.

00:40:45.000 --> 00:40:49.999
And you’re sticking with your diet?

00:40:50.000 --> 00:40:54.999
Sticking with the diet,
two liters with sugar.

00:40:55.000 --> 00:40:59.999
The two liters and the extra IV fluids?
Yes, on Tuesdays and Fridays. With…

00:41:00.000 --> 00:41:04.999
Umm… When you get to the point that I
do where it’s called short gut syndrome

00:41:05.000 --> 00:41:09.999
where you don’t have enough bowel
to properly absorb anything.

00:41:10.000 --> 00:41:14.999
Umm… Most people even when short
bowel absorb some things.

00:41:15.000 --> 00:41:19.999
I am kinda on the other end that I don’t… I’m not absorbing pretty
much anything. Then you get into issues of the electrolytes

00:41:20.000 --> 00:41:24.999
because you are depending on everything
being supplemented through IV medication

00:41:25.000 --> 00:41:29.999
and you’re not able to monitor that 24/7.

00:41:30.000 --> 00:41:34.999
I mean, because you’re not getting your labs
taken 24/7, so you don’t know your levels 24/7.

00:41:35.000 --> 00:41:39.999
You know, they can give you… they give you
a formula for a week and you use that

00:41:40.000 --> 00:41:44.999
and then they readjust it the next
week based on your labs for that week.

00:41:45.000 --> 00:41:49.999
Umm… But I’m not able to constantly check it, so, you know,
if I want to check my levels I have to go get my blood drawn.

00:41:50.000 --> 00:41:54.999
It’s not like the diabetic test that I can
just prick, you know, my finger and say

00:41:55.000 --> 00:41:59.999
\"Oh, okay, my potassium is like this
I need to do this.\" There you go.

00:42:00.000 --> 00:42:04.999
Sometimes I have to prove
myself like when there’s

00:42:05.000 --> 00:42:09.999
umm… they call it just being compliant as I hate that word
compliant, but it’s in the medical field all the time.

00:42:10.000 --> 00:42:14.999
(inaudible) doing what I need to be doing which is probably
(inaudible) my TPN during that drinking two liters,

00:42:15.000 --> 00:42:19.999
you know, not eating or drinking,
these are suppose to stuff like that.

00:42:20.000 --> 00:42:24.999
Compliance I was thinking
about this the other day

00:42:25.000 --> 00:42:29.999
I think it’s probably doctors biggest
challenge is the patient’s compliance.

00:42:30.000 --> 00:42:34.999
Because we’re all human beings and we all want to
live our lives that we want to live our lives.

00:42:35.000 --> 00:42:39.999
And sometimes if you’re told uh… we don’t want you to do this
or you can’t do this or if you do this, this will happen.

00:42:40.000 --> 00:42:44.999
I think what happens is a
patient starts to feel,

00:42:45.000 --> 00:42:49.999
I know, Dana has started to feel like
she doesn’t have choices anymore.

00:42:50.000 --> 00:42:54.999
And the things that she really enjoys and she
gets pleasure from even if it’s drinking a Coke

00:42:55.000 --> 00:42:59.999
uh… she no longer can do. And so I
think that she can start to feel like,

00:43:00.000 --> 00:43:04.999
you know, this isn’t fun
what am I doing in my life.

00:43:05.000 --> 00:43:09.999
I already can’t do this… I can’t do this… I
can’t do this and now I can’t even drink a Coke

00:43:10.000 --> 00:43:14.999
and so sometimes I think she’ll reach
for the Coke just to say screw it.

00:43:15.000 --> 00:43:19.999
Let me have at least a few minutes of enjoyment because
I don’t know what tomorrow is. So that kind of thinking

00:43:20.000 --> 00:43:24.999
can be a problem, you know, and so
that’s why compliance is super…

00:43:25.000 --> 00:43:29.999
super important. It’s living
beyond the moment, you know,

00:43:30.000 --> 00:43:34.999
and I think Dana has done very well with it,
it’s been a challenge for her, a big challenge.

00:43:35.000 --> 00:43:39.999
There have been many times where
I’ve been completely picture perfect

00:43:40.000 --> 00:43:44.999
and still wind up with
messed-up levels in the ER.

00:43:45.000 --> 00:43:49.999
So in my opinion of it because my life
has changed so much in things like that

00:43:50.000 --> 00:43:54.999
I believe everything in moderation kind of
thing. So am I picture perfect all the time?

00:43:55.000 --> 00:43:59.999
No. What they want it that way? Absolutely,
but I ended up there kinda by the way.

00:44:00.000 --> 00:44:04.999
So I will allow myself

00:44:05.000 --> 00:44:09.999
some enjoyment and so on.

00:44:10.000 --> 00:44:14.999
So here is just some of the amounts of
stuff I have to have with me all the time.

00:44:15.000 --> 00:44:19.999
She travels she’s got supplies everywhere she goes
to. I mean, when you drive in her car sometimes

00:44:20.000 --> 00:44:24.999
I’ll get in the car with her, she’s got uh… a
hanger with a bag of sailing hanging in the IV tube

00:44:25.000 --> 00:44:29.999
like little medic mobile. She is drive
in and she’s hooked up to it sometimes.

00:44:30.000 --> 00:44:34.999
But, you know, you can’t
keep a good girl down

00:44:35.000 --> 00:44:39.999
so Dana’s out and doing what she can do.
Which I love her spirit…

00:44:40.000 --> 00:44:45.000
I love her spirit. It’s
what keeps her going.

00:44:50.000 --> 00:44:54.999
The thing about a chronic illness that people don’t realize
is you never get a vacation from it. you never get a break,

00:44:55.000 --> 00:44:59.999
you live with this 24/7 every minute, every second,
every day like right now my stomach hurts.

00:45:00.000 --> 00:45:04.999
(inaudible) I show it? No. Am I aware
of it? As (inaudible) absolutely.

00:45:05.000 --> 00:45:09.999
So it’s something that’s always with you.

00:45:10.000 --> 00:45:14.999
So around that even though you have other thoughts and things throughout
the day, it’s kind of just this looming what am I going to do about this.

00:45:15.000 --> 00:45:19.999
If I decide to stay on the IV nutrition

00:45:20.000 --> 00:45:24.999
and just keep going with that as far as

00:45:25.000 --> 00:45:29.999
if my gut doesn’t change with absorbing anymore if
everything were to stay the same as it is right now,

00:45:30.000 --> 00:45:34.999
this would be something I
struggle with every day.

00:45:35.000 --> 00:45:39.999
And it literally is, it’s not only every
day, it’s literally hour to hour.

00:45:40.000 --> 00:45:44.999
I’ve had days where my levels can be fine and drop within two hours
so point where I’m in the emergency room and it’s at acute levels

00:45:45.000 --> 00:45:49.999
umm… which is… it’s not just like \"Oh,
your level is down and that’s bad.\"

00:45:50.000 --> 00:45:54.999
It’s \"Oh, your level is down,
you can have a stroke.\"

00:45:55.000 --> 00:45:59.999
\"Oh, your level is down you can have a seizure.\" \"Oh, your
level is down you’re about to go into cardiac arrest.\"

00:46:00.000 --> 00:46:04.999
So my options right now are seeing
if my bowel can absorb at all

00:46:05.000 --> 00:46:09.999
giving it a couple of months to… to make that
decision trying a new drug that may enhance that

00:46:10.000 --> 00:46:14.999
umm… and seeing what that kind
of quality of life is for me.

00:46:15.000 --> 00:46:19.999
There are a lot of people who can deal with that
umm… of course every situation is different.

00:46:20.000 --> 00:46:24.999
My other option is getting
the small bowel transplant,

00:46:25.000 --> 00:46:29.999
which they transplant an intestine and,

00:46:30.000 --> 00:46:34.999
you know, all goes well, you’re able
to absorb again through an intestine

00:46:35.000 --> 00:46:39.999
that’s not your own. It settling for me that
there’s an aspect that like I could have a normal…

00:46:40.000 --> 00:46:44.999
somewhat normal life again with that

00:46:45.000 --> 00:46:49.999
umm… instead of just feeling kinda cheated
like \"Okay, all my interest has gone.

00:46:50.000 --> 00:46:54.999
That’s it like I’m there’s no, you know, I can’t
(inaudible) grow it or I can’t come back like

00:46:55.000 --> 00:46:59.999
that’s it, game over. This is how it’s
going to be for the rest of my life.

00:47:00.000 --> 00:47:04.999
So I’m glad that it’s an option umm… but
becoming a transplant patient is a game changer,

00:47:05.000 --> 00:47:09.999
a major game-changer. Umm… I’m pretty sure

00:47:10.000 --> 00:47:14.999
my parents are kinda on the same
page as I am. I am not sure,

00:47:15.000 --> 00:47:19.999
but I’m learning to let go

00:47:20.000 --> 00:47:24.999
and trust Dana that Dana will know
if it’s right for her or not.

00:47:25.000 --> 00:47:29.999
I can’t tell her to do it. There was a time
I thought \"Oh, yeah, this will be great

00:47:30.000 --> 00:47:34.999
and maybe I should help her with this
decision,\" but even Dr. Remizi said to me

00:47:35.000 --> 00:47:39.999
this has to be strictly Dana’s choice.
She’s gotta be all in

00:47:40.000 --> 00:47:44.999
because it’s a huge… huge commitment.

00:47:45.000 --> 00:47:49.999
Patients like you that could live
on TPN, but their quality of life

00:47:50.000 --> 00:47:54.999
is just is very poor, spending
most of your time in the hospital

00:47:55.000 --> 00:47:59.999
and the question now would you live on…
on home parenteral nutrition or TPN

00:48:00.000 --> 00:48:04.999
or you go for a transplant
is a very tough decision.

00:48:05.000 --> 00:48:09.999
Time is gonna come for somebody like you when your run
of the (inaudible) we called the clots in your system

00:48:10.000 --> 00:48:14.999
or your liver start failing,

00:48:15.000 --> 00:48:19.999
I mean, you definitely like all of the patients on home
parenteral nutrition or has Crohn’s disease for a while then the…

00:48:20.000 --> 00:48:24.999
the liver suffer tremendously and
therefore we do a liver biopsy and you…

00:48:25.000 --> 00:48:29.999
you will see there is some scar tissue in your liver
and that progress and then your liver would fail

00:48:30.000 --> 00:48:34.999
at that time either you die or you go for a
transplant, and when you go for a transplant,

00:48:35.000 --> 00:48:39.999
it’s a more complicated procedure you’re going to
need a liver and the intestine and pancreas together,

00:48:40.000 --> 00:48:44.999
your recovery will be slower

00:48:45.000 --> 00:48:49.999
and God forbid if you… if
you reject to the organs

00:48:50.000 --> 00:48:54.999
and we need to retransplant you, you know,
then you have to be retransplanted,

00:48:55.000 --> 00:48:59.999
we cannot take the organs out and… and…
and you cannot survive without the liver.

00:49:00.000 --> 00:49:04.999
But if you take intestine alone,
before you develop liver failure,

00:49:05.000 --> 00:49:09.999
number one, you recover quicker.
Number two if the God forbid,

00:49:10.000 --> 00:49:14.999
the intestine reject and we
cannot control their rejection

00:49:15.000 --> 00:49:19.999
which is about less than 10% of the… of the patient now
with all the powerful anti-rejection medication we have.

00:49:20.000 --> 00:49:24.999
We can always take the intestine
back put you back on TPN.

00:49:25.000 --> 00:49:29.999
I’m afraid of getting worse and
having to live in a hospital,

00:49:30.000 --> 00:49:34.999
you know, if the… if I go through very
bad rejection… I can assure you that

00:49:35.000 --> 00:49:39.999
your quality of life will
never get worse than this.

00:49:40.000 --> 00:49:44.999
You’re live but you really don’t have a life. No, that’s true. It’s
about quality of life… You’re live, but you don’t have a life.

00:49:45.000 --> 00:49:49.999
And we take things for granted

00:49:50.000 --> 00:49:54.999
and now you forget what is normal life is?
Yeah. So that’s why you didn’t have

00:49:55.000 --> 00:49:59.999
the desire you’re afraid, you’re scared
because you forgot what’s normal life is.

00:50:00.000 --> 00:50:04.999
Well, I don’t think I ever really experienced
normal life. Right. I’ve always been sick.

00:50:05.000 --> 00:50:09.999
Every time I talk to you, you make
me think for like weeks afterwards

00:50:10.000 --> 00:50:14.999
just I replay the conversation
I’m like blown away by it. I… I…

00:50:15.000 --> 00:50:19.999
Okay, here the word, surrender,
you have to surrender.

00:50:20.000 --> 00:50:24.999
Uh… You have the faith I know,
you have the trust in me

00:50:25.000 --> 00:50:29.999
and I think you have the
will to get better,

00:50:30.000 --> 00:50:34.999
but all of these has to
be placed on a plate

00:50:35.000 --> 00:50:39.999
and don’t think about it again, surrender.
And whatever the outcome is going to be,

00:50:40.000 --> 00:50:44.999
either we will be successful
and happy and if we’re not,

00:50:45.000 --> 00:50:49.999
we will try to make the best out of it.

00:50:50.000 --> 00:50:54.999
Umm… I’m just afraid for you
and other patients like you

00:50:55.000 --> 00:50:59.999
who’s suffering from the disease process
and the decision-making process

00:51:00.000 --> 00:51:04.999
it’s even worse as we said it’s amazing how
a human being can trust another human being

00:51:05.000 --> 00:51:09.999
on his or her life. Once you surrender,

00:51:10.000 --> 00:51:14.999
you enjoy the ride and let me take care of
it that’s what I tell all the patients.

00:51:15.000 --> 00:51:19.999
I could die before you and somebody
else that having a normal life

00:51:20.000 --> 00:51:24.999
could die before both of
us, but what counts is

00:51:25.000 --> 00:51:29.999
if this is a way of life you want
to live, \"Now! This is a present.\"

00:51:30.000 --> 00:51:34.999
This is an absolute present use to it and you think
that’s there’s nothing else I can do about it.

00:51:35.000 --> 00:51:39.999
There is no success in
life without taking a risk

00:51:40.000 --> 00:51:44.999
and if you’re not willing to take the risk
then you’re gonna put yourself in a corner

00:51:45.000 --> 00:51:49.999
and then you will find yourself in a situation
that you’re going to lose your life

00:51:50.000 --> 00:51:54.999
and there’s nobody will
be able to help you.

00:51:55.000 --> 00:51:59.999
Oh, my God! This thing is awesome. It has…
it has stethoscope. Are you filming? Yeah.

00:52:00.000 --> 00:52:04.999
Okay, this is the snowman that we
just found randomly outside here

00:52:05.000 --> 00:52:09.999
whoever made this has my utmost admiration
because (inaudible) Cleveland Clinic gown,

00:52:10.000 --> 00:52:14.999
it has a fake stethoscope,

00:52:15.000 --> 00:52:19.999
tomato buttons, glove
hands and tubing arms,

00:52:20.000 --> 00:52:24.999
surgical mask because he’s
gonna do my next surgery.

00:52:25.000 --> 00:52:29.999
This is amazing and it’s actually
not too cold out here right now,

00:52:30.000 --> 00:52:34.999
but my hands are getting a
little frozen dealing with snow.

00:52:35.000 --> 00:52:39.999
All right, we’ll go back inside now. But it’s not
terrible everyone else’s chicken and student (inaudible).

00:52:40.000 --> 00:52:48.000
[music]

00:52:55.000 --> 00:52:59.999
It probably will be decided tomorrow based on…
Wait… wait… wait what? Who makes that decision?

00:53:00.000 --> 00:53:04.999
You. Right. Based on… And (inaudible) with
saying what? Based on her labs. What did I say?

00:53:05.000 --> 00:53:09.999
She said… she said my labs
were a little off today.

00:53:10.000 --> 00:53:14.999
It could have been a bad or yesterday it could have
been a bad lab draw. They’re gonna redraw tomorrow.

00:53:15.000 --> 00:53:19.999
If… if they’re still off then I’m
probably not going to come home,

00:53:20.000 --> 00:53:24.999
which was a very mature decision
and probably a wise one so…

00:53:25.000 --> 00:53:29.999
What else did I say? That you love me. No.

00:53:30.000 --> 00:53:34.999
Oh! I don’t know what else did you say? I
just said \"If they’re okay. I’m coming.\"

00:53:35.000 --> 00:53:39.999
Oh, if they’re okay, I’m coming home, that’s what
she said. Although Dana has a very strong will

00:53:40.000 --> 00:53:44.999
and strong personality which
I think has helped her

00:53:45.000 --> 00:53:49.999
and gotten her this far

00:53:50.000 --> 00:53:54.999
umm… I was able to have some influence with her, but now,
you know, I don’t know how much influence I have anymore.

00:53:55.000 --> 00:53:59.999
And I think probably some
of our biggest challenges

00:54:00.000 --> 00:54:04.999
have been my view

00:54:05.000 --> 00:54:09.999
of how she’s doing something as
opposed to what she’s doing.

00:54:10.000 --> 00:54:14.999
We’ve been through a lot together, you
know, it’s very hard to watch your child,

00:54:15.000 --> 00:54:19.999
you know, suffer and deal with
what Dana’s had to deal it,

00:54:20.000 --> 00:54:24.999
it’s hard on Dana, it’s
hard for me to watch,

00:54:25.000 --> 00:54:29.999
it’s hard for me to feel as a
mom, you know, I can’t fix it.

00:54:30.000 --> 00:54:34.999
Dana’s an inspiration, you know,

00:54:35.000 --> 00:54:39.999
as shitty things can be for her sometimes
the fact that she has a sense of humor

00:54:40.000 --> 00:54:44.999
that she has and she’s able to get up the next day
and laugh and crack jokes, that to me is what…

00:54:45.000 --> 00:54:49.999
what is all about, is how you go through
whatever you’re given and make the best of it.

00:54:50.000 --> 00:54:54.999
Dana helps people all the time. But you
are even more like (inaudible) than I am.

00:54:55.000 --> 00:54:59.999
Oh, you’re Ms. Pollyanna. I’m not
Pollyanna. But in a good way like

00:55:00.000 --> 00:55:04.999
\"I’ll give like there’ll be a crappy
situation and dad and I will like…

00:55:05.000 --> 00:55:09.999
That happens too. That’s gonna be edited out so quickly
you gonna (inaudible). Maybe we should leave it in.

00:55:10.000 --> 00:55:14.999
That could be (inaudible). (inaudible) thing.
It gurgles at particularly quiet moments,

00:55:15.000 --> 00:55:19.999
it sounds like a fart, it’s not.
That was more gurgely,

00:55:20.000 --> 00:55:24.999
sometimes it does sound farty. Usually I
have to blame issue I don’t have any on.

00:55:25.000 --> 00:55:29.999
What were you saying that your dad… I
don’t know I’m dumb stuck right now.

00:55:30.000 --> 00:55:34.999
I… I think life is about…

00:55:35.000 --> 00:55:39.999
You also like to have your intestine
working against you in every way possible.

00:55:40.000 --> 00:55:44.999
It’s not working against us, it working
for you right… That was not for me.

00:55:45.000 --> 00:55:49.999
I’m going to embarrass (inaudible). Though
(inaudible) something that was supposed to do,

00:55:50.000 --> 00:55:54.999
body knows what it’s supposed to do.
(inaudible) nobody cares. It’s fine.

00:55:55.000 --> 00:55:59.999
You’ve never had the experience of not having
control over your butt muscle. No, I haven’t.

00:56:00.000 --> 00:56:04.999
You have no idea. I do not have any idea.

00:56:05.000 --> 00:56:09.999
You are absolutely right. You can still go by
that whole (inaudible) \"Oh, I don’t fart ever.\"

00:56:10.000 --> 00:56:14.999
[sil.]

00:56:15.000 --> 00:56:19.999
You can’t. That’s not technically fart.

00:56:20.000 --> 00:56:24.999
When you are walking around are you worried about
making noises? Of course. Does that driving nuts?

00:56:25.000 --> 00:56:29.999
Do you know (inaudible). No, not so well.
It’s a little awkward.

00:56:30.000 --> 00:56:34.999
There were times I think you pulled
the bag socially for that reason.

00:56:35.000 --> 00:56:39.999
You didn’t want to be around your friends, around
people. You didn’t want, you know… Not for noises

00:56:40.000 --> 00:56:44.999
that was from actual leaking crap.
Well, noise is slash leaking crap.

00:56:45.000 --> 00:56:49.999
No, they’re very different. Leaking crap
is much more embarrassing than noises.

00:56:50.000 --> 00:56:54.999
Noise is you could sometimes go hungry
or \"Oh, sorry that was my shoe\"

00:56:55.000 --> 00:56:59.999
or if you cough really loud you can cover
it. Sometimes that makes it louder though

00:57:00.000 --> 00:57:04.999
or I can… if can go like this sometimes
it muffled, noise is manageable.

00:57:05.000 --> 00:57:09.999
Leaking crap not. I get it… I get it.

00:57:10.000 --> 00:57:14.999
No, you don’t. You just compared noises and leaking crap to
one another. No, I just I understand there’s a difference.

00:57:15.000 --> 00:57:19.999
Have you leaked crap in
front of your friends?

00:57:20.000 --> 00:57:24.999
I can’t say I am. Okay, well,
then you don’t get it.

00:57:25.000 --> 00:57:29.999
Would you pooh back socially if you really
can crap? I probably would. Yes, absolutely.

00:57:30.000 --> 00:57:34.999
Smelly, leaky crap. I… I didn’t say
there was anything wrong with that.

00:57:35.000 --> 00:57:39.999
I just said \"I think you’ve pulled back a little because
of that.\" What did you I think (inaudible) pooh back

00:57:40.000 --> 00:57:44.999
when it’s smelly leaking crap? Okay.

00:57:45.000 --> 00:57:49.999
I don’t even want to be around myself.
(inaudible).

00:57:50.000 --> 00:57:54.999
Oh, see this is why she… she’s
creates (inaudible) humor.

00:57:55.000 --> 00:57:59.999
It’s true.

00:58:00.000 --> 00:58:04.999
You’re nose is running. (inaudible) mess. It’s running.
Of course it is. Everything is running right now.

00:58:05.000 --> 00:58:09.999
I’m the only person I can
poop while talking to you,

00:58:10.000 --> 00:58:14.999
so (inaudible) composer from what.

00:58:15.000 --> 00:58:23.000
[sil.]

00:58:25.000 --> 00:58:29.999
My biggest fear is not dying in all this,

00:58:30.000 --> 00:58:34.999
quite honestly that would be horrible
umm… because I… I do like life

00:58:35.000 --> 00:58:39.999
umm… and more than that even as I would
be really hard to my family (inaudible)

00:58:40.000 --> 00:58:44.999
I can do that to. My fear
is medically getting worse

00:58:45.000 --> 00:58:49.999
because if I were to get worse I would
definitely be stuck in a hospital,

00:58:50.000 --> 00:58:54.999
probably living in a hospital well, that’s
not life, that’s not quality of life,

00:58:55.000 --> 00:58:59.999
that’s not something I want to do. We talk about
dying, you know, I remember Dana’s first surgery

00:59:00.000 --> 00:59:04.999
uh… she was 16, she was getting her ostomy,

00:59:05.000 --> 00:59:09.999
but just before she was getting enrolled
in, she called the family over,

00:59:10.000 --> 00:59:14.999
my dad, my mom, her dad and me, and
she gave each one of us a letter.

00:59:15.000 --> 00:59:19.999
You know, and it was the letter
of \"If I don’t make it.\"

00:59:20.000 --> 00:59:24.999
And she got rolled in and (inaudible)
we all sat and opened our letters.

00:59:25.000 --> 00:59:29.999
[sil.]

00:59:30.000 --> 00:59:34.999
And of course she’s made it

00:59:35.000 --> 00:59:39.999
time and time again.

00:59:40.000 --> 00:59:44.999
Umm… Countless surgeries,
countless procedures.

00:59:45.000 --> 00:59:49.999
(inaudible).

00:59:50.000 --> 00:59:54.999
So a lot of faith… a lot of faith. My faith has
gotten stronger and stronger in this process.

00:59:55.000 --> 00:59:59.999
I mean, there’s been a lot
of gifts with this illness

01:00:00.000 --> 01:00:04.999
that we probably wouldn’t have if we
didn’t go through this experience,

01:00:05.000 --> 01:00:09.999
it’s crazy as that sounds. It sounds crazy.

01:00:10.000 --> 01:00:14.999
I don’t feel like that as much.

01:00:15.000 --> 01:00:19.999
I wish I did.

01:00:20.000 --> 01:00:24.999
I’m a little more science minded
though too. I must get that from dad.

01:00:25.000 --> 01:00:29.999
She has a enough faith for the both of us.

01:00:30.000 --> 01:00:34.999
So that’s good. I believe in a
bigger picture and a bigger meaning.

01:00:35.000 --> 01:00:39.999
I just don’t understand why
suffering has to be a part of that.

01:00:40.000 --> 01:00:44.999
That’s where mine dwindles.

01:00:45.000 --> 01:00:50.000
[sil.]

01:01:10.000 --> 01:01:14.999
We are very interested in helping raise money
for research. In fact, our doctor at the clinic

01:01:15.000 --> 01:01:19.999
he’s is doing a huge project with
research which we are helping him do

01:01:20.000 --> 01:01:24.999
uh… with an event we’re having here for him.
Uh… I would like to see more awareness.

01:01:25.000 --> 01:01:29.999
People need to be talking about this. People need
to know about this, it’s that hidden disease.

01:01:30.000 --> 01:01:34.999
There’s a famous quote by Edmund Burke

01:01:35.000 --> 01:01:39.999
that I love which I applied to
many areas of my life that says

01:01:40.000 --> 01:01:44.999
\"The only thing necessary for evil to
triumph is when good men do nothing.\"

01:01:45.000 --> 01:01:49.999
I always remind myself of that
because when I’m feeling frustrated

01:01:50.000 --> 01:01:54.999
or feeling like even the littlest
thing isn’t making a difference,

01:01:55.000 --> 01:01:59.999
it reminds me that it dies and the
problem with having something called

01:02:00.000 --> 01:02:04.999
inflammatory bowel disease
is the word bowel

01:02:05.000 --> 01:02:09.999
because people don’t want to talk
about that, totally understandable.

01:02:10.000 --> 01:02:14.999
But it’s become necessary because
without talking about it

01:02:15.000 --> 01:02:19.999
then no research can be done and no cares can be found and
nothing happens and we stay where we stood for the longest time

01:02:20.000 --> 01:02:24.999
which has got to change. I
think Dana has a message,

01:02:25.000 --> 01:02:29.999
you know, I think Dana has something to say

01:02:30.000 --> 01:02:34.999
and I think Dana is here
to make a difference

01:02:35.000 --> 01:02:39.999
which is why we have the fundraisers. We want
to make an impact, we want to help others,

01:02:40.000 --> 01:02:44.999
we want to make a difference in the world, make it a
better place as corny as it sounds it’s really the truth.

01:02:45.000 --> 01:02:50.000
[music]

01:02:55.000 --> 01:03:03.000
[music]

01:03:20.000 --> 01:03:24.999
[music]

01:03:25.000 --> 01:03:29.999
So we’re here because Dana’s stoma has…
has retracted and it’s very painful,

01:03:30.000 --> 01:03:34.999
it’s pulling and it needs to be revised.

01:03:35.000 --> 01:03:39.999
So what we’re hoping for is that the
doctor can go through the site and fix it.

01:03:40.000 --> 01:03:44.999
If he can’t, he’s going to have to open
her mid line which is a bigger surgery.

01:03:45.000 --> 01:03:49.999
Umm… We’re hoping for the lesser invasive surgery
of course. And she has been in a lot of pain.

01:03:50.000 --> 01:03:54.999
So this will help the… the
pain from the stoma anyway.

01:03:55.000 --> 01:03:59.999
The last what would you say? A couple
of months. A couple of months, yeah.

01:04:00.000 --> 01:04:04.999
It’s been horrible for her and she’s done everything
she can just be out of the hospital for pain.

01:04:05.000 --> 01:04:09.999
Yeah, she has been trying to maintain without pain medicines.
Yeah, that we’re… you’re very relieved that we’re here

01:04:10.000 --> 01:04:14.999
because just getting her here was, you know, there
were a couple of visits in between to the ER

01:04:15.000 --> 01:04:19.999
where Dana needed pain meds, she did get admitted but
she needed to something it was so unbearable for her.

01:04:20.000 --> 01:04:24.999
So we’re just relived to be here and
of course under Dr. Remizi’s care.

01:04:25.000 --> 01:04:29.999
[music]

01:04:30.000 --> 01:04:34.999
And I didn’t expect to be back so
soon but my stoma had other plans.

01:04:35.000 --> 01:04:39.999
And it’s slowly trying to kill me,

01:04:40.000 --> 01:04:44.999
by burning and inverting and being painful
so that’s why I’m here so I can get

01:04:45.000 --> 01:04:49.999
pulled out tomorrow because
it went inside and tiding.

01:04:50.000 --> 01:04:54.999
Tomorrow hopefully he can do it through the
site where it is and it’s not a big deal

01:04:55.000 --> 01:04:59.999
umm… but if it needs to he has to open
me up and then it becomes a major deal.

01:05:00.000 --> 01:05:04.999
Because it’s kinda close to my
ribs, I’m not a very big person

01:05:05.000 --> 01:05:09.999
to begin with so stuff is
kinda on top of each other.

01:05:10.000 --> 01:05:14.999
We… we separated early on when
Dana was seven months old.

01:05:15.000 --> 01:05:19.999
But umm… when Dana got sick,

01:05:20.000 --> 01:05:24.999
we have been friends from the beginning
and we realized early on that

01:05:25.000 --> 01:05:29.999
Dana needs us as her parents and
there’s no time for the bullshit.

01:05:30.000 --> 01:05:34.999
And we really are here for Dana
and we care about each other.

01:05:35.000 --> 01:05:39.999
You know, we’re… we’re good friends, umm… but
we want to be here for Dana, however we can be.

01:05:40.000 --> 01:05:44.999
And I think that she appreciates that.

01:05:45.000 --> 01:05:53.000
[music]

01:06:50.000 --> 01:06:58.000
[sil.]

01:07:05.000 --> 01:07:09.999
Okay, How are you doing Dana?

01:07:10.000 --> 01:07:14.999
Okay. All right, we got the all three
members here. What’s your first name?

01:07:15.000 --> 01:07:19.999
The doctors always do a huddle. They all get
together and they talk about what they’re doing.

01:07:20.000 --> 01:07:24.999
You saw Dr. Remizi asked Dana her name,
everything. They asked her name and birth date

01:07:25.000 --> 01:07:29.999
all over the place to make sure they have the right person
and they wanna make sure the patient knows what’s going on

01:07:30.000 --> 01:07:34.999
that’s always good that everyone’s on
the same page. So I like the huddle.

01:07:35.000 --> 01:07:39.999
Okay, so today we will be
doing a (inaudible) revision.

01:07:40.000 --> 01:07:44.999
Uh… I have the whole intentions to
keep it (inaudible) small chance,

01:07:45.000 --> 01:07:49.999
we have to go to middle okay, midline

01:07:50.000 --> 01:07:54.999
and then we gonna give her two
(inaudible) of ceftriaxone

01:07:55.000 --> 01:07:59.999
and (inaudible). Do you
have any questions there?

01:08:00.000 --> 01:08:04.999
Godspeed, all right. Any
questions (inaudible).

01:08:05.000 --> 01:08:09.999
It is normal life for Dana in and out
of the hospital and out of surgeries,

01:08:10.000 --> 01:08:14.999
but each time it doesn’t get easier. It’s still a
surgery and she still gets a little freaked out,

01:08:15.000 --> 01:08:19.999
but she does very well but
it’s not unusual for her.

01:08:20.000 --> 01:08:28.000
[music]

01:08:30.000 --> 01:08:34.999
Surgery has begun 08:30.
(inaudible) 08:30. 08:30.

01:08:35.000 --> 01:08:43.000
[music]

01:08:50.000 --> 01:08:54.999
Umm… I just got a text

01:08:55.000 --> 01:08:59.999
that they’re finishing up in surgery, doctor will contact
you afterward, which means that the surgery was quick.

01:09:00.000 --> 01:09:04.999
So it’s nine o’clock we started at 08:30

01:09:05.000 --> 01:09:09.999
umm… I’m very… very grateful.

01:09:10.000 --> 01:09:14.999
(inaudible) wait in here. Sure. Dr.
Remizi will in (inaudible).

01:09:15.000 --> 01:09:19.999
Okay, great, thank you.
Well, everything went well.

01:09:20.000 --> 01:09:24.999
I think you worried about. I was
able to do just at the edge.

01:09:25.000 --> 01:09:29.999
So umm… the location of it is not
that great the stoma itself, okay.

01:09:30.000 --> 01:09:34.999
And knowing the complexity of the situation

01:09:35.000 --> 01:09:39.999
and knowing the fact that

01:09:40.000 --> 01:09:44.999
she literally want me to do
too much today as, you know,

01:09:45.000 --> 01:09:49.999
and the critical part was to the…
the retraction of the stoma.

01:09:50.000 --> 01:09:54.999
So I was able to pull that up and brought
it out like a inch to inch and a half,

01:09:55.000 --> 01:09:59.999
tagged it to the surrounding tissues

01:10:00.000 --> 01:10:04.999
and just reversed it like
you open that inside out,

01:10:05.000 --> 01:10:09.999
so like this way it’s going
to stick up pretty good

01:10:10.000 --> 01:10:14.999
and that should eliminate the problems
that she was having. Well, thank you.

01:10:15.000 --> 01:10:19.999
You’re welcome. God bless you. Excellent
news. (inaudible) it my pleasure. Thank you.

01:10:20.000 --> 01:10:24.999
You may hug too. Papa, two papas’ hugs.
All right. Thank you.

01:10:25.000 --> 01:10:29.999
All right, take care guys. I’ll see you guys (inaudible)
the same floor she’s gonna go to the recovery.

01:10:30.000 --> 01:10:34.999
Yeah. That may be little tough time. Yeah.

01:10:35.000 --> 01:10:39.999
So don’t be alarmed. Okay. With
the pain (inaudible) okay.

01:10:40.000 --> 01:10:44.999
Okay. Thank you. Okay, bye-bye. Bye-bye.
Its good news… its good news.

01:10:45.000 --> 01:10:49.999
Isn’t he amazing? He’s amazing.
That’s right.

01:10:50.000 --> 01:10:54.999
Amazing! Okay, thank you.

01:10:55.000 --> 01:10:59.999
Things actually end up going a lot better

01:11:00.000 --> 01:11:04.999
than expected which is very good,

01:11:05.000 --> 01:11:09.999
not always the case. Umm… And I
can tell as soon as I woke up

01:11:10.000 --> 01:11:14.999
that it was the easy one because I
was in an horrific amount of pain

01:11:15.000 --> 01:11:19.999
and the first thing my hand did was fell around I’m like
\"Oh, okay, no stitches. It doesn’t hurt when I press there.\"

01:11:20.000 --> 01:11:24.999
So that was good. So what has happened
was I have some internal hernias

01:11:25.000 --> 01:11:29.999
just from the enormous amount of
bowel surgeries that I’ve had

01:11:30.000 --> 01:11:34.999
and with one of them it caused the
portion of the bowel where the stoma is

01:11:35.000 --> 01:11:39.999
to kind of invert so it kinda went inside itself and
it’s supposed to sit out on the top of the skin about

01:11:40.000 --> 01:11:44.999
an inch or so and, you know,
pretty little bud they call it

01:11:45.000 --> 01:11:49.999
and so when… when things come out of it

01:11:50.000 --> 01:11:54.999
umm… it’s not touching your
skin and it just flows out.

01:11:55.000 --> 01:11:59.999
Now what happened to me when it became inverted like that
is not only was it impossible to put the patch on it

01:12:00.000 --> 01:12:04.999
because there was nothing to
really put the pouch around,

01:12:05.000 --> 01:12:09.999
umm… but that when it would stretch, it would be painful,
your nerve endings in your intestines only feel stretching,

01:12:10.000 --> 01:12:14.999
and so if that area is narrowed
from it being inverted,

01:12:15.000 --> 01:12:19.999
it stretches to have to push things
out and that was excruciating.

01:12:20.000 --> 01:12:24.999
So my pain will hopefully be much different
it should already and it already is and

01:12:25.000 --> 01:12:29.999
umm… you know, hopefully that
won’t happen anytime again.

01:12:30.000 --> 01:12:34.999
So I have other things that I want to try before deciding
if I really umm… I’m up for that transplant or not.

01:12:35.000 --> 01:12:39.999
Umm… There are some other avenues and pass
that I want to explore a little better

01:12:40.000 --> 01:12:44.999
umm… just so that I have peace of mind in knowing
that I have done whatever was humanly possible

01:12:45.000 --> 01:12:49.999
in my control before making
such a huge decision like that.

01:12:50.000 --> 01:12:54.999
And in order to make that decision
it’s one that I have to be okay with

01:12:55.000 --> 01:12:59.999
and I think that’s what that will
take as me really feeling that

01:13:00.000 --> 01:13:04.999
and resonating with uh… I did everything I
could and this is where they said so now

01:13:05.000 --> 01:13:09.999
what do I want to do. So I’m gonna go home

01:13:10.000 --> 01:13:14.999
umm… I’m see how much I can start to absorb

01:13:15.000 --> 01:13:19.999
and kinda fiddle around with that a little bit
just try weaning off of some TPN of course with,

01:13:20.000 --> 01:13:24.999
you know, the doctors help and there’s a new drug
that I’m going to be trying which helps with that

01:13:25.000 --> 01:13:29.999
which I hadn’t tried up until now
because it can cause an obstruction

01:13:30.000 --> 01:13:34.999
and with my passage already being narrowed
by the stoma inverting, it needed to be,

01:13:35.000 --> 01:13:39.999
you know, optimal position as possible
and I don’t want to create a problem,

01:13:40.000 --> 01:13:44.999
so I will be able to try that see if that
can work. Umm… It takes a lot of time,

01:13:45.000 --> 01:13:49.999
you know, everything takes time
so I just plan to enjoy that time

01:13:50.000 --> 01:13:54.999
being home in nice weather
and the sun and my own house

01:13:55.000 --> 01:13:59.999
with my dog and not here

01:14:00.000 --> 01:14:05.000
in the hospital bed and cold.

01:14:30.000 --> 01:14:34.999
I’m back here because my electrolytes
decided to not be cooperative

01:14:35.000 --> 01:14:39.999
and kinda go haywire, and where I
was couldn’t really figure it out

01:14:40.000 --> 01:14:44.999
very well. I was almost a month
before I had to some back.

01:14:45.000 --> 01:14:49.999
So at home they had to replace my G-tube

01:14:50.000 --> 01:14:54.999
which is this tube essentially
that’s in my stomach

01:14:55.000 --> 01:14:59.999
that keeps me from throwing up

01:15:00.000 --> 01:15:04.999
uh… because it allows my stomach to… to (inaudible) and
kinda empty a little bit separate than the ostomy.

01:15:05.000 --> 01:15:09.999
Umm… So they need to replace that
because when I had, I had a hole in it

01:15:10.000 --> 01:15:14.999
and that was fun. Umm… And then yesterday

01:15:15.000 --> 01:15:19.999
I got my catheter replaced that’s in my
chest and is usually always pretty painful

01:15:20.000 --> 01:15:24.999
so right now I’m training
to deal with that,

01:15:25.000 --> 01:15:29.999
not very successfully
because it really kills,

01:15:30.000 --> 01:15:34.999
it’s a lot of burning, and sharp and
painful. They… they give you sedation,

01:15:35.000 --> 01:15:39.999
but it’s kinda the after part that’s the worst,
so it’s kind of a bloody mess right now.

01:15:40.000 --> 01:15:44.999
I also wanted to come back because I’m
getting very tired of being sick and tired…

01:15:45.000 --> 01:15:49.999
sick and tired… sick and
tired and wanted to discuss

01:15:50.000 --> 01:15:54.999
umm… the transplant option a lot more.

01:15:55.000 --> 01:15:59.999
She knows you’re coming.
She didn’t sleep in pain.

01:16:00.000 --> 01:16:04.999
So I tell you what’s my gut feeling is

01:16:05.000 --> 01:16:09.999
I would definitely if you’re my daughter I’ll go for
it. That’s my gut feeling I told you this many…

01:16:10.000 --> 01:16:14.999
many times because you
have really no options.

01:16:15.000 --> 01:16:19.999
Wait until things, you know, end in… you end in the
intensive care unit or you develop liver failure.

01:16:20.000 --> 01:16:24.999
Uh… you have problem with the line, you have a problem
with your stomach which hopefully will be fixed,

01:16:25.000 --> 01:16:29.999
we’ll give you the new intestine.
Uh… It’s… it’s very tough decision

01:16:30.000 --> 01:16:34.999
that you should have a calculated risk.
But you have to be ready first,

01:16:35.000 --> 01:16:39.999
are you ready? Do you think so is not good
enough for me? Oh, I’m tired of this.

01:16:40.000 --> 01:16:44.999
I’m tired of being in and out of the hospital
all the time, I’m tired of depending on TPN,

01:16:45.000 --> 01:16:49.999
I’m tired on not knowing if my electrolytes
are stable and not feeling well

01:16:50.000 --> 01:16:54.999
and I’m just tired of… You have to be ready for
as I said this about a year-and-a-half ago

01:16:55.000 --> 01:16:59.999
when I first met you. I know… I know.
You… you have to be ready.

01:17:00.000 --> 01:17:04.999
Uh… Because it is very
important than any lab tests

01:17:05.000 --> 01:17:09.999
and then any studies that we’re going to
do on you, you have to be mentally ready,

01:17:10.000 --> 01:17:14.999
your heart and your soul has to be in it

01:17:15.000 --> 01:17:19.999
because it’s a fight we both has to win.
Right. What I told you three things

01:17:20.000 --> 01:17:24.999
faith, trust and will.

01:17:25.000 --> 01:17:29.999
Faith, your life and death has
nothing to do with you and me.

01:17:30.000 --> 01:17:34.999
And then you have to have a trust and the people going to
take care of you and that is a major sticky point right now

01:17:35.000 --> 01:17:39.999
because of everything you have, you know,

01:17:40.000 --> 01:17:44.999
you have a something going in your head
24/7 what you went through all the years,

01:17:45.000 --> 01:17:49.999
it just stopping you from having a trust.

01:17:50.000 --> 01:17:54.999
You have to break the cycle. I told you
this before you have to break the cycle.

01:17:55.000 --> 01:17:59.999
The breaking of a cycle is did
Kareem and the team handle it

01:18:00.000 --> 01:18:04.999
and I need to enjoy the right. You
want me to examine your belly,

01:18:05.000 --> 01:18:09.999
I haven’t seen for belly for a year or more than a year and a half.
Sure if you want to. If you’re gonna go for transplant well,

01:18:10.000 --> 01:18:14.999
if not I don’t wanna waste my time.

01:18:15.000 --> 01:18:19.999
Yeah. Well, when talking to doctor
it kinda made me realize that

01:18:20.000 --> 01:18:24.999
there’s not so much a choice anymore because it’s… it’s
gonna get to a point where there really isn’t a choice

01:18:25.000 --> 01:18:29.999
and once it gets to that point

01:18:30.000 --> 01:18:34.999
uh… it can be quite dangerous
and eventually well,

01:18:35.000 --> 01:18:39.999
(inaudible) you know, how long then by then
it is kinda too late to really have a…

01:18:40.000 --> 01:18:44.999
have a good outcome. I
think I’m worn out enough

01:18:45.000 --> 01:18:49.999
that I’m done doing this enough

01:18:50.000 --> 01:18:54.999
to go ahead and do that.
I’m just I’m tired,

01:18:55.000 --> 01:18:59.999
drained and… and looking at some old pictures and
stuff I realize I’ve been doing this a lot longer

01:19:00.000 --> 01:19:04.999
than I ever pictured.

01:19:05.000 --> 01:19:09.999
I mean, I don’t want that to continue

01:19:10.000 --> 01:19:14.999
so changing time definition of insanity
is do same thing over and over again

01:19:15.000 --> 01:19:19.999
and expect a different result (inaudible)

01:19:20.000 --> 01:19:25.000
I’m a little bit insane, but not this much.

01:19:35.000 --> 01:19:40.000
[music]

01:19:55.000 --> 01:19:59.999
I’ve always looked at Dana as my daughter
and not just defined her by her illness

01:20:00.000 --> 01:20:04.999
and I think it lot of times that’s
what happens to the patients

01:20:05.000 --> 01:20:09.999
they become their disease. And they
forget there’s a person inside

01:20:10.000 --> 01:20:14.999
and the illness kinda takes over.

01:20:15.000 --> 01:20:19.999
So living with a chronic illness
when someone says to you

01:20:20.000 --> 01:20:24.999
\"Oh, well, you don’t look sick.\"
They mean it as a compliment.

01:20:25.000 --> 01:20:29.999
We all know that they mean this as a compliment. Don’t
ever say this to someone with a chronic illness

01:20:30.000 --> 01:20:34.999
because it wholly to them
discounts the way that they feel

01:20:35.000 --> 01:20:39.999
and everything that they go through.

01:20:40.000 --> 01:20:44.999
My final question are you an organ donor?

01:20:45.000 --> 01:20:49.999
Absolutely. Yeah, I wanna see it.

01:20:50.000 --> 01:20:54.999
Can we show it to the camera too. Absolutely.
Cool. Everybody should be an organ donor.

01:20:55.000 --> 01:20:59.999
It’s a gift of life and I can
imagine when you donate your organs

01:21:00.000 --> 01:21:04.999
how many lives you gonna save. It’s
not like you’re using them anymore.

01:21:05.000 --> 01:21:13.000
[music]

01:22:00.000 --> 01:22:04.999
There are many faces of Crohn’s
disease, many butts of them too.

01:22:05.000 --> 01:22:13.000
[music]

01:22:15.000 --> 01:22:19.999
I mean, there’s a certain amount of
embarrassment right with this disease. Yeah.

01:22:20.000 --> 01:22:24.999
Not anymore. See you don’t
need a colon to be,

01:22:25.000 --> 01:22:29.999
you know, creative. And by the way
what… what do we gonna call this.

01:22:30.000 --> 01:22:34.999
Semicolon. (inaudible) you have to say.
Semicolon Productions.

01:22:35.000 --> 01:22:39.999
I’m not using yours.

01:22:40.000 --> 01:22:45.000
[sil.]