[music] It's a disease that affects an
estimated 5.5 million women and men in the
United States, however only about 1
million patients are properly diagnosed
and treated.
Interstitial cystitis bladder
pain syndrome is defined as an unpleasant discomfort or
sensation related to the bladder and
associated with lower urinary tract
symptoms including frequency and urgency.
Often times patients lives are
impacted far beyond the physical symptoms.
And we traveled to Northern California
to learn more, take a look.
Today Stacey Coronado
is meeting with her urologist since her
official diagnosis of interstitial
cystitis bladder pain syndrome in 2010,
these appointments have become a part of
her routine.
For her it's a relief to
finally have help eight years ago she
had no idea what was happening.
I would be out hiking with my friend--
we'd take long two our hikes-- and on the
hike I would notice that I was feeling
like I had to go the bathroom and I
thought oh that's really strange because I
just left home and I shouldn't be
feeling that, but you know it would kind
of go away and I didn't think twice about it at
the time until a couple months later
when it was coming back and I was
having, feeling like I needed to go the bathroom
all the time, all the time, all the time
and having constant feeling of
having to urinate.
One time I expressed to my
doctor that I feel like I have an
elephant sitting right here on my
abdomen at all times.
It's just so much
pressure that you never have any relief
from it and it's constant pain.
I would say that I probably went, used
the restroom 20-25 times a day, and
at night five, six times a night waking
up to go the bathroom but not really
having to go to the bathroom so it's very
frustrating.
Sometimes it's burning-- which is really
uncomfortable-- sometimes it's just
strictly pain.
A lot of times for me it's
just constant pressure of having to use
the restroom and no matter how often I
go to I don't have any relief from that
feeling.
We're so good it's been a pretty good
week also so I can't complain.
As a first grade teacher she would have to
leave her classroom repeatedly-- Daily
life was a challenge.
I don't have a job
where I can just walk away and say I
need to use the restroom I'll be right back
to 25 six-year-olds because it just
doesn't work, fortunately the way my classroom
is set up I have open doors with other
teachers so I would be able to open the door
and my colleagues were very supportive
and helpful and I would just run out
and use the restroom fairly close, it
was pretty quick and it didn't help me to
use the restroom I still felt that
constant pressure but I just had to do
what I had to do.
Often times when we'd go somewhere
I would, that's what I would worry about;
can I make I,t how many bathroom stops
are we going to need to get to Davis to
see my kids at college, and where could I
go whenever I went somewhere
it was the first thing I said was
where's the bathroom?
Interstitial cystitis is a poorly understood,
but identifiable disease.
Patients have
specific lesions in the bladder that can
be biopsied can be followed, and bladder
pain syndrome patients have very similar
symptoms but they have normal bladders.
And it turns out that the two conditions
are not the same.
According to Dr.
Payne proper diagnosis of ICBPS comes
with an in-depth consultation, careful
review of patients history, and a
thorough physical exam.
We're trying to
figure out where the pain is coming from
and we think that starts with a good
history, how did the problem start, what
was going on at the time, what are the
things to make the pain better, and worse
and then usually the only routine
testing that we might do on a patient
the first time would be to look at the
urine under the microscope, get a
urinalysis and culture, and possibly
getting a check of how much urine is
left over after they urinate of post void
residual.
We find that that's typically
enough to start treatment, to make a
working diagnosis.
For the bladder pain
syndrome if we think that a patient has
lesions, then of course the key test is
to do a cystoscopy, to look in the
bladder, to see the lesions, to biopsy the
lesions.
That would be fantastic I would love to
to see someone else and get a second
opinion.
When I first received the
diagnosis I was extremely, extremely
uncomfortable and in pain and I was
freaking out basically and crying all
the time.
Crying, crying, crying and at
work I'm crying, at home I'm crying,
everywhere I go I'm crying, because I
didn't know what the future was going to
be for me.
I didn't know if I was going
to ever feel better, ever be able to
enjoy going on a trip with my family,
doing things with my family, just things
like that I was I was worried that I
would never get to do anything enjoyable
again.
When I first met with Dr. Payne I
was really hopeful that I would get some
help, and he was as well like you know
there's so many things we can do and so
many things that are available to try.
Stacy is a frustrating--frustrating
is not the right word, because she's not
frustrating, but her problem is frustrating-- she had bladder
pain syndrome symptoms for a long
time before I started seeing her and we went
through her treatments and several of
the treatments that she had been
given, at least a couple of them
initially, seemed to be helping her and then
overall year-to-year she just kept
getting worse.
We thought were gonna be
able to add treatment, get her completely
free of symptoms, stabilize things and
maybe then in the long run actually take
her off medicine.
We've never been able
to get her a hundred percent free of
symptoms, that's been particularly
frustrating because even though she
functions at a very high level in her
day to day life she's still almost every
day has some symptoms and with her I've
not been able to crack the code on that
one.
Communication is key between both
patient and physician, it's a very real
disease that can create consternation
for all involved.
Aquinox is interested
in ICBPS because of the high unmet
medical need.
There are over five and a
half million women and men in the United
States with ICBPS today yet only a
million of these patients have been
diagnosed and treated.
And while for some
conditions a million might sound like a
lot of patients in this case there are a
few effective treatment options so many
of these patients are left in continued pain, especially
bladder pain.
So while patients may have a number
of options most of the patients
find themselves frustrated, not
finding a regimen that works right for
them, especially to manage the bladder
pain.
Only two of these therapies have been
US FDA approved over 20 years ago.
Thanks to Dr. Payne’s continued treatment
Stacy is making progress.
It's improved
immensely because he's got me on different medications, different
routines, and I'm feeling much, much
better.
I'm not completely well I would say,
but I have improved to where I can
work, I can do anything that I want to
do and not necessarily worry all the
time about how I'm feeling.
My best advice would be
to be your own advocate-- it's a miserable condition to have and
if you can find someone-- the right
person-- to help you, then you can get help.
We see an opportunity to improve ICBPS
awareness, hopefully increase diagnosis,
and if our clinical trial program is
successful, introduce a new and effective
treatment option for patients.
If not, hopefully we've advanced the
science and understanding of ICBPS through
our clinical trial program.
Most important
take home message that it isn’t one entity
and therefore you need to work with
someone that will help you understand
where your problem is coming from, to sect
out your disorder and treat you specifically rather than just
doing an algorithm that they think
applies to everybody that has those
symptoms.
My youngest is graduating from
college in June and I'm looking forward to
being able to travel, go places, do
things with my husband, and knowing that I
am in a good place, I can manage my
ICBPS and my future looks great!
So glad her future looks so bright.
Absolutely!
And here are some websites
that will provide much more information
about ICBPS, the first one; aqx Pharma dot
com, you can also look at IC help dot
org or ICBPS tips.com.
That was a
mouthful!
I know!
And if you didn't get
all that, you can also visit our website at thebalancingact.com
and we will be right back!