Me and My Bladder,

My Bladder and Me
Mary Ellen Altieri
hat on earth
made you go
into this type
of nnrsing?"
The question is always the same.
It most often comes during uro-
dynamic testing when my head is
practically between the patient's
legs trying to determine if she
leaks when she "bears down." I
usually laugh and tell them how
much I enjoy my job and that I
find urology fascinating. The
truth is, I did not choose urology
nursing; it chose me!
I
History
My bladder has been running
my life off and on since I was 10
years old. It led me to nursing, to
my husband (we worked in the
same hospital), and eventually to
the world of female urology.
When I was 10, my mother
saw me leaving the bathroom
with a grimace on my face and a
wobble in my step. When she
asked me what was wrong, I
replied. "Nothing. I just peed,
and it hasn't stopped hurting
yet." It never occurred to me that
the act of urination was not sup-
posed to hurt. Off we went to the
pediatrician, the first step in my
urologic journey.
In 1969, a cystoscopy re-
vealed a "kink" in my urethra. My
parents were told that the cysto-
scope had rectified the problem,
and I should have no further
problems with urination. It was
Mary Ellen Altieri, LPN, is a Urology
Procedure Nurse and Biofeedback
Technician, Suffolk Urology Associates,
Bay Shore, NY.
This article is intended to "put a face" on the disease interstitial cys-
titis (IC). It is a personal case study based on the experiences of the
author. Being misdiagnosed and dismissed for years, her story is typ-
ical of the IC patient's struggle. If one IC patient is recognized and
treated in a timely fashion, then those years of being misunderstood
would have counted for something.
during this brief hospital stay
that I developed an innoc:ent
"same-sex crush" on the sweet
and beautiful nurse who tucked
me in the night before my proce-
dure. She gave me her undivided
attention, and at that moment, I
knew what I wanted to be when I
grew up.
Several "bladder infections"
and antibiotic treatments later
(without the benefit of a culture
and sensitivities), I was labeled
as having "chronic cystitis." One
doctor, after learning that I was
the middle child of five, told my
parents that I was not getting
enough attention at home. All I
knew was it hurt "down there."
Between the ages of 13 and
16,1 experienced a blissful remis-
sion in my lower urinary tract
symptoms of burning and pain.
Those were "the good old days."
At age 17, the night before my
senior prom, acute pelvic pain
occurred, but I was not urinating
blood. I frantically called a neigh-
bor, a nurse who advised me to
strain my urine with a gauze pad.
"You may have a kidney stone"
she said. A kidney stone? I was
terrified. In the emergency room
an hour later, I was diagnosed
with a severe bladder infection. A
urologic followup was recom-
mended, and I was warned not to
drink any alcohol.
I did not feel up to getting out
of bed the next day, but it was my
senior prom. I went to the dance,
tried to have fun, and several
times went to the ladies' room to
cry on the toilet. My date did not
have a clue, for I was hiding my
pain. How would I explain to an
18-year-old who I had only been
dating a few months, my bladder
was on fire, and it felt as though I
was passing double-edged razors
instead of urine?
After awhile, I became a real
professional at hiding my pain. It
seemed to upset everyone around
me. Nothing that anyone in the
medical community or in my fam-
ily had done helped me cope with
the pain I was feeling. Misery had
become my normal state. I almost
constantly suffered witli pelvic
pain and burning urination.
During that time in my life, if
someone asked me if I was all
right, I would mumble an excuse
about a headache or cramps
because those are symptoms peo-
ple can accept. I was labeled as a
malingerer, and no one believed
my problem was real. Before my
diagnosis, I had seen a total of 11
doctors: internists, gynecologists,
and urologists in my quest for
answers and relief.
In 1980, I was finally diag-
nosed with interstitial cystitis
(IC). My symptoms had evolved
UROLOGIC NURSING / April 2003 / Volume 23 Number 2
113
into low back pain, suprapubic
pain, frequency, urgency, and
urinating only a few painful
drops at a time. My symptoms
were validated, but little was
available for treatment.
Treatment
Supportive. Little was known
about IC at all 22 years ago. I was
told to drink a lot of water and
perhaps see a psychologist to
help deal with anxiety. The anxi-
ety was the result of the constant
pain I was enduring. Counseling
was most helpful, because it was
positive reinforcement of my
condition and my reaction to it.
The therapist believed that tbe
physical symptoms came before
the anxiety.
In 1986, attempting to learn
as much as I could about IC and
symptom management, I discov-
ered a book that changed my life.
Reading You Don't Have to Live
with Cystitis, by Dr. Larrian
Cillespie (1986) was an epiphany
for me. There were several case
studies of women who went
through exactly what I was going
through, including years of being
misdiagnosed and dismissed as
being anxious. The address of the
Interstitial Cystitis Association
(ICA) was listed in the back of the
book. I joined this patient advo-
cate organization immediately.
In 1993, after years of know-
ing what was wrong but having
difficulty managing the symp-
toms, I began to feel isolated
again. I thought, "I can't be the
only person in this area who feels
this way, could I?" I contacted
the ICA to ask if there was a sup-
port group in my area. There was
none. At that time, it was thought
that as many as 250,000 women
suffered with IC in the United
States. I asked for a list of
patients registered with the ICA
living in m.y area to see if they
would be interested in starting a
group. One month later, "IC
Support on the Horizon," a peer
support group, was born.
Our group is sponsored by a
local hospital and meets month-
ly. Now, 9 years later, there are
350 names in the database, and
the average attendance at month-
ly meetings is 20 to 25 patients
with IC and family members.
Support group attendees have
made lasting friendships and
meaningful bonds with others
who share their symptoms and
understand the struggle of living
with IC.
One of my favorite support
group stories is the one about two
women who became friends after
a few meetings, and then discov-
ered that they lived only four
houses apart. They started com-
ing to the meetings together and
now they spend holidays togeth-
er. They have become "bladder
buddies" in every sense of the
word. They are also "PIPs" or
"Partners in Pain." This is a ver-
bal agreement between support
group members wbo may call
each other, any time of day or
night, if they are experiencing a
flare in symptoms. This enables
the patient to have someone
other than family to talk to and
help them organize their self-care
plan. Sometimes, leaning on a
f'amily member in times of symp-
tom flares may complicate the
relationship. It is not easy being
the spouse of an IC patient (just
ask my husband). It is very frus-
trating to see youi loved one in
pain, feeling helpless, and being
unable to help her feel better. A
pain partner may share helpful
ideas, the kinds of things that one
can't think of when pain is
clouding her mind.
Medications. Pain manage-
ment for long-term chronic illness
is still poorly understood and is in
need of more research. Thanks to
doctors like Dan Brookoff, an
oncologist and pain specialist from
Memphis Methodist Hospital,
things are beginning to change.
Research thus far has shown that
patients in control of their own
analgesic medication use much
less than those who depend on a
health care professional (Forrest,
Smethurst, & Kienitz, 1970; Jaffe,
Gilman, Coodman, Rail, & Murad,
1985; Rainov & Buchser, 2002).
Patient-controlled analgesia has
become mainstream practice for
the seriously ill patient, but how
do we deal with the long-term
chronic pain patient? Patients
with IC are not gravely ill. They
are chronically ill and often in
severe, debilitating pain. There
were times that I was in so much
pain, I don't know how I got
through the day. As I often tell my
clients, it is amazing just how
much your body can tolerate
when you have no other choice!
Interstitial cystitis for the
most part is not a degenerative
disease. So how shall the crip-
pling pelvic pain be managed?
Imagine living with a severe uri-
nary tract infection all day, every
day of your life. Imagine giving
up your social life, your romantic
life, and your quality family time
because you are only minimally
comfortable curled in a fetal
position with a heating pad. Do
you think you would feel
depressed? Might you cry in the
middle of explaining your symp-
toms to your urologist? This is
affectionately known as the "Kiss
of Death" in IC support circle
group circles. If the doctor does
some preliminary tests that come
out negative and gives you this
"good news," then sees you cry,
he/she may assume your prob-
lems are "above the neck" rather
than below the belly. Heaven for-
bid you bring in an article on IC
and ask the doctor if he/she
thinks this is what you have.
Now the doctor thinks you are
"shopping for a disease." I con-
sider myself a savvy shopper. I
am pretty sure I would pick out
something more glamorous than
"peeing razor blades."
Clinical Implications
Fortunately, ! have finally
reached a point where my symp-
toms are, for the most part, man-
aged. With a healthy balance of
medication, lifestyle changes,
diet modification, and relaxation
techniques, I now only have a
"BBD" (bad bladder day) occa-
sionally. I used to only have a
good day occasionally. Infor-
mation about IC has empowered
me to take care of my bladder, my
lower back, and my urethral
pain. Having friends in the sup-
port group to share ideas and no
longer feeling isolated has played
continued on page 110
114 UROLOGIC NURSING / April 2003 / Volume 23 Number 2
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Case Study
continued from page 114
a big part in this success. Having
a Partner in Pain for one-on-one
support, receiving information
from the ICA, knowing that
research is being funded for a
cure, and staying positive are all
ingredients of this recipe for suc-
cess.
We, as the urologic commu-
nity, must recognize the symp-
toms of IC, use the fact that most
diagnostic tests will be negative
as a clue to the IC diagnosis, and
most importantly, believe what
patients tell us.
Conclusion
The quality of life issues
faced by patients with IC are sig-
nificant. Although there is no
cure, there are many tools avail-
able to assist patients with IC in
managing the symptoms they
experience. We must do our best
to empower patients with IC and
connect them with the resources
available to help them find their
own "recipe for success." ffl
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110
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