Courage To Cope
Living with Crohn's disease and ulcerative colitis.
RUT HAN BRODSKY
Special to the Jewish News
Jr
dures.
The book wasn't Sklar's idea. "A col-
league of mine was asked to write the
book, but referred the publish-
ing house to me. My friend
knew I was living the disease,
intensely studying the research,
and considered myself an expert
on both from a patient's per-
spective.
"It took me 21/2 months to write the
book. I had collected all the informa-
tion and as a board member of the
Michigan Chapter of the Crohn's and
ill Sklar of Huntington
Woods works hard at
balancing her life: She's
a wife, a mother, a
daughter and daughter-in-law.
She is also a writer who has to
meet deadlines and she serves as a vol-
unteer.
None of this sounds extraordinary,
except that Sklar has Crohn's disease
(CD) -and ulcerative colitis (UC).
"Living with any
chronic illness forces
individuals to change
their perception of
what is 'normal,'"
Sklar wrote in a new
book. "With CD and
UC, there is no dif-
ference. You probably
scout out the bath-
room locations in any
place before you take
your coat off now,
whereas before you
never did. You may
become more familiar
with medical terms
1, A RE t it aperr
and functions of your
Walks 'if:)11Thcou),
intestines whereas
Evez).‘ching You, Nfe - v.i.
to Learn and DL
before you wouldn't
give a hoot. You have ,
Crohn's Disease
changed, and there-
and
Ulcerative Colitis
fore your priorities
have changed as
.:ji.11 Skl;kr
well."
Her book, The First
Year: Crohn's .Disease
and Ulcerative Colitis. fill Sklar worked on her book from her Huntington
An Essential Guide for Woods home. She's appearing Sunday at the Book Fair's
the Newly Diagnosed,
Local Authors Fair.
was published this
summer (Marlowe
and Company, New York; $15.95).
Colitis Foundation of America, I
CD and UC are the two main dis-
knew lots of people to interview. I am
eases commonly referred to as inflam-
grateful that I had the opportunity to
matory bowel disease (IBD). Sklar
write this book," she says, "knowing it
was officially diagnosed with the dis-
will help others who have the dis-
ease."
ease in 1989, although she demon-
strated minor symptoms at age 5 and
The major characteristic of both
more serious symptoms while in high
ulcerative colitis and Crohn's is
school and college.
inflamed tissue in the intestine. The
Over the last 13 years, Sklar has
symptoms are diarrhea, abdominal
been hospitalized numerous times and pain, fever, cramps and pain, joint
underwent two major surgical proce-
pain and weight loss. When severe,
IBD undermines health and can be
hand, at least not easily."
life-threatening.
Ulcerated colitis differs from
No one knows what causes Crohn's
Crohn's in that it affects only the
disease, and treating its symptoms can colon. The inflammation is maximal
be challenging. Some people living
in the rectum and extends up the
with the disease may have mild symp- colon in a continuous manner with-
toms or long periods of remission
out any skipped areas of normal intes-
between flare-ups. An active phase can tine. The inflammation makes the
cause deep sores or such thickening of colon empty frequently, causing diar-
the intestinal wall that it creates a
rhea. Ulcers form where the inflam-
blockage and requires surgery.
mation has killed colon-lining cells.
Sklar's father-in-law, Dr. Manny
Crohn's, on the other hand, can
Sklar of Franklin, says, "It is ironic
affect any area of the gastrointestinal
that I've spent most of my life teach-
tract, including the small intestine,
ing about this disease." Dr. Sklar is a
and areas of normal intestine can be
long-time gastroenterologist. "Now I
between areas of diseased intestine.
have a daughter-in-law who suffers
According to the Crohn's and
from the disease. Yet I have learned
Colitis Foundation of America
much from Jill. She has applied her
(CCFA), there are up to .1 million
skill as a medical journalist and dealt
Americans with either ulcerative coli-
with this disease in such a .brave..man-
tis or Crohn's disease. Most cases of
ner. Her book is an authoritative
ulcerative colitis begin before age 30,
description of these diseases and of
although the disease can occur at any
value to physicians and patients."
age. There is also a greater incidence
Dr. Sklar wrote .a foreword to the
of ulcerative colitis in Jews than non-
book, which takes patients and their
Jews.
families through the first year of treat-
Treatment for ulcerative colitis
ment after diagnosis. Information on
depends on the seriousness of the dis-
medication and research, tips on cop- . ease.
ing and getting health insurance are
"Most people are treated with med-
given individual chapters.
ication," says Dr. Alan Cutler, gas-
"To get through this disease, you
troenterologist and chairman of the
need to be able to rely on the help,
Medical Advisory Committee of the
expertise and advice of health care
Michigan Chapter of CCFA. "People
professionals, such as your primary
experience ulcerative colitis different-
care physician, your gastroenterolo-
ly, so treatment is adjusted for each
gist, your colorectal surgeon and your
person.
nutritionist or registered dietitian,"
"In severe cases, a patient may need
writes Jill Sklar. "These individuals
surgery to remove the diseased colon.
will either sink or save you, which is
In some cases, people have remissions,
why it is so critically important for
when the symptoms go away for a few
you to carefully choose those individ-
months or years," Dr. Cutler says.
uals to be a part of your health care
"However, most patients' symptoms
team.
eventually return."
Each chapter is broken down into
Pain is part of IBD. During major
living and learning sections. The liv-
episodes, it's the kind of pain that
ing portion is based on Sklar's experi-
keeps you up at night.
ences and won't be found in any med-
"This journey through tests and
ical textbook.
procedures, medicines, and perhaps
"I never hesitate to tell people about surgeries likely has tried you physical-
my CD," Sklar writes. "I don't intro-
ly, mentally, and emotionally," writes
dike myself and then corner a new
Sklar. "In so many ways, you are not
friend with gory details of CD, but I
the same person you were the minute
don't hide it either. Usually, it comes
before your diagnosis.
up because I have had a fever or some
"This isn't necessarily an entirely
other symptom that has made me a
bad thing. It is through adversity that
tad less mobile and I have to explain
we grow and move forward."
that what I have is not contagious."
Sklar has followed her own advice.
In the second half of the book, she
She continues to serve as the vice
describes in more detail some of the
president of the CCFA Michigan
issues. She also confronts concerns
Chapter and is the community leader
not usually open for discussion:
for the Crohn's disease board on
"Let it be stressed that, for the most iVillage.corn.
part, individuals with CD and UC
She also has a new assignment: to
lead normal, healthy sex lives. But let
co-author a cookbook with low-fat
it also be said that sex, fertility and
recipes and an accompanying hand-
diarrhea do not always go hand in
book on acid reflux (heartburn).
.
❑
11 / 8
2002
101