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Faces of Crohn’s
A look back at past Crohn’s Advocates!
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Volume 7B, 2015
Connect. Educate. Empower.
®
2. Dear Readers,
It’s hard to believe that six years have passed since we started Crohn’sAdvocate®
, and there’s been
much progress to help ease the burden of Crohn’s for those who have it over that time.
In this issue, you’ll hear from some voices that are familiar to Crohn’sAdvocate®
readers. We caught
up with some people we’ve featured in past issues to see what they’re up to now and what’s changed
since we last heard from them. You’ll also hear from new voices and learn about new information for
the Crohn’s community, including a patient-centered network that is being built by the Crohn’s & Colitis
Foundation of America.
All of this ultimately helps show the faces of Crohn’s, as well as the surrounding support system that
continues to build. In our last issue, we focused on support systems, including healthcare providers, but
for as many areas that we covered, one of our readers mentioned that we forgot a critical part of that
support system – the pharmacists. As this reader notes, it is so important for patients to have a strong
relationship with their pharmacists so they can help monitor their treatment path. We would like to thank
this reader for bringing this to our attention.
And that brings us to something that is important to us. We need YOU! In fact, our next issue will be
our first-ever issue solely formed from reader responses. We are looking forward to hearing from
you – about your journey with Crohn’s disease, the tips that you’d want others to know and more.
Please email us at crohns.advocate@ucb.com or visit the Crohn’s and Me Facebook page
(www.facebook.com/CrohnsAndMe) to learn more.
As always, we love hearing from you.
Be Well,
The Crohn’sAdvocate Editorial Board
Submit your Crohn’s experience for a chance to be included in the magazine’s
first-ever reader feedback issue! We want to hear from you about your:
Positive personal experiences with Crohn’s disease
Helpful tips for those with Crohn’s
Inspiration to keep motivated
Email us at crohns.advocate@ucb.com or visit our Facebook page
www.facebook.com/CrohnsAndMe to learn more. Don’t forget to include your name,
email address, and phone number, so we may contact you if you’re selected.
Please note: Content submitted by contributors or included from interviews, such as specific disease characteristics, symptoms and
food preferences, is specific to those individual contributors or interviewees. Because Crohn’s disease is highly individualized, there
will be differences for each person. Talk to your doctor to see what’s best for you.
Want to continue to
receive helpful information
on Crohn’s disease
and Crohn’sAdvocate®
magazine? Sign up at
www.crohnsandme.com.
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YOU!
By sending us your submission, you agree to giving UCB and its business partners full rights and permission to edit, copyright,
reproduce, own, publish, and use all components of your submission for any commercial or educational use in any media
format, including use in all versions of “Crohn’s & Me” and “Crohn’sAdvocate” publications. You also agree to giving UCB and
its business partners full rights and permission to use and release your personal health related information included in your
submission, including your name, age, diagnosis, and personal story of living with your disease.
Furthermore, by sending us your submission, you represent you are over the age of eighteen (18) years, and agree to be contacted
by UCB and/or its business partners for additional details and/or clarification. You also agree to release and discharge UCB and its
business partners from any and all claims, actions and demands arising out of or in connection with your submission, including,
but not limited to, any and all claims for defamation, libel, slander, invasion of right to privacy, invasion of right of publicity, and
copyright infringement.
What’s missing from Crohn’sAdvocate®
magazine?
0 2 Crohn’sAdvocate®
Volume 7B, 2015
Letter from the Editorial Board
3. ®
TABLE OF CONTENTS
10the faces of Crohn’s
5
4
A look back on past Crohn’s
Advocates who have made and
continue to make a positive impact
on the Crohn’s community.
4
Feature
The Stall Wall featuring comedian Ben Morrison
Crohn’s 101
Educating patients on important basics of Crohn’s disease
The Crohn’s Connection
Athlete Vanessa Kabash shares her
experiences living with Crohn’s
0 3Crohn’sAdvocate®
Volume 7B, 2015
4. O
ver the last four years of writing for Crohn’sAdvocate®
, I have
seen the awareness and subsequent treatment of Crohn’s disease
skyrocket. When I first started with this magazine, awareness
on any sort of national level was scant at best. Now, Crohn’s disease
and the treatment of it are becoming more mainstream. I see this in
no small part because of this publication.
I can attest to this because, as a comedian, people reach out to me. I
have had the pleasure of meeting countless patients, advocates, and
medical professionals who have randomly emailed me because they
were in a doctor’s office somewhere, waiting for some uncomfortable
procedure, and saw that there was a magazine all about them. As a
writer, I have been able to address this affliction from almost every
possible angle, and, I hope, bring a spotlight to those of us who suffer
in silence no more. Through the sheer diversity of people affected I only
see one common theme: good people with a bad disease.
So if you’re reading this, it’s your duty to help us continue this mission.
You’ve been affected by Crohn’s disease in some way, and I am
personally asking you to never shut up about it. I’ve always said this is
a disease of the mind as much as it is of the intestine. And let’s face
it; the only way to combat ignorance is with open and honest dialogue.
Because until the day arrives that we see the cure for Crohn’s disease,
it’s our job to take the question mark out of this horrible disease. n
It Never
Hurts to
Laugh
It’s Working.
By Ben Morrison
For more exclusive video
footage of Ben, download
our iPad®
edition at
crohnsandme.com
Crohn’s disease celebrity and comedian Ben Morrison (Last Comic Driving,
Punk’d) provides a first-person narrative featuring humorous stories and
anecdotes about living with Crohn’s from a patient perspective
Creating a Patient-Empowered Network
Are you a patient looking for an easy way to make a big difference? Become
a part of the research process by enrolling in Crohn’s & Colitis Foundation of
America (CCFA) Partners – a research network that is changing what it means
to be a patient. The CCFA has collaborated with the University of North Carolina
School of Medicine to create a research partnership between patients and the
scientific community. By simply filling out a survey twice a year, patients can
make an important contribution to research and in return, access information
and tools to track, better understand and manage their disease, while also
helping to shape the research agenda by proposing and voting on research
topics. This patient-centered research portal is the first of its kind in the field.
Visit ccfapartners.org to sign up today!
crohn’s
1010 4 Crohn’sAdvocate®
Volume 7B, 2015
The Stall Wall
5. The Crohn’s Connection
I just focus
on my goals
instead of just
the disease.
Athlete Vanessa Kabash
shares her story...
G
rowing up, Vanessa
Kabash wasn’t much
of an athlete.
“I definitely wasn’t the most coordinated
person,” she says, recalling her attempts at being
physically active as a child. “Gym class was not
my favorite part of the school day.”
But all of that began to change for the now-38-
year-old New Jersey native as she got older. “I
guess it started with cross country and track in
high school, and I continued to run through
college and graduate school,” she says. “I started
to appreciate how I felt while I was running and it
pushed me to do more.”
Charged with her newfound love of sports and
all things active, Vanessa enrolled in Taekwondo
classes—eventually earning her black belt—and
in Aikido, another form of martial arts. She
loved the goal-oriented nature of martial arts.
There were always new skills to learn and
challenges to conquer, and as someone who
appreciated identifying and pursuing goals, this
greatly appealed to her. “Aikido is also about
finding your center and blending with the energy
of those around you,” Vanessa says. “And I find
these to be helpful guiding principles for life
when adapting to any challenge or change.”
At the same time, something else began to change
in Vanessa as well. As she entered her first
year of teaching in 1999, the random stomach
pains and gastrointestinal difficulties she first
experienced in college became more difficult for
her to ignore.
“In college, my issues were all attributed to stress
or just living the college lifestyle,” she says. “But
once I began teaching, all of those nagging health
worries in the back of my mind became a reality.
They were just too severe and happening too
often.” The constant bathroom runs and pain
management were making teaching problematic.
There were other difficulties too. Soon after
being diagnosed with kidney stones, the
pain Vanessa managed greatly impacted her
performance on the mat at aikido practice.
“There was so much pain that eventually I had
to stop. I wasn’t sure if it was from the [kidney]
stones or from just being flipped around too
much, but the pain was unbearable.”
Vanessa didn’t receive her official Crohn’s
diagnosis until January 2010. “I didn’t fully
understand the seriousness of what I was hearing
– that it was a disease that I would have for the rest
of my life – but I was so glad to have an answer to
what I was experiencing. After the years of pain
and kidney stones and questions, once all the
puzzle pieces finally fit together, I was relieved.”
But throughout all of the pain, the misdiagnoses
and looming “what–ifs” she managed daily,
sports and physical activity were always a
constant and incredible source of inspiration
and strength, and a great way to stay strong
and healthy while she learned how to manage
her diagnoses. She began to find new ways to
push herself through the pain and day-to-day
uncertainty. After talking with her doctor, she
resumed running, going for long distances
outside, and eventually incorporated biking and
swimming into her weekly routine. This paved
the way for 5ks, 10ks, and anything else that
could help her test her limits—both physically
and as a Crohnie. In the summer of 2009, she
completed her first triathlon. An Olympic
distance triathlon at Lake George soon followed
in 2010. “I always loved a good challenge,” she
says, “I just kept looking ahead to the next
distance I could take on.”
In the fall of 2014, Vanessa completed her
greatest endurance test to date – her first
Ironman Triathlon in Chattanooga, Tennessee.
“It was the greatest feeling I’ve ever had,” she says,
recounting crossing the finish line.
While crossing the finish line comes with
inherent and obvious challenges (whether
managing Crohn’s disease or not), at times her
disease has made training difficult, especially
when it came to meeting necessary caloric
requirements for her routine, and often-intense
Continued on page 9
Check out Vanessa’s
go-to training playlist &
additional video footage
on the iPad version
Please consult your doctor before starting or changing any exercise routine.
0 5Crohn’sAdvocate®
Volume 7B, 2015
6. There are over 100 apps for either Apple or Android that
can help you locate a bathroom throughout the U.S.
Apps like BathroomMap, Airpnp and Bathroom Buddy can
help alleviate the anxiety of finding a bathroom while travelling in
a new environment! Each app contains different features, such
as a comprehensive list of toilet locations, reviews on cleanliness
and comfort and even a built-in game for entertainment! Added
bonus: most of these apps are free!
DidYouKnow?
training schedule. Knowing she had to take
in a certain amount of fuel to sustain rigorous
training regimens, ensuring the right diet to
avoid vitamin deficiency and getting enough
calories to help keep the weight on was no
easy task. Finding the right diet combination
can be tricky for anyone in training – having
the added twist of a Crohn’s diagnosis made it
more complicated.
Recalling training for the Ironman, Vanessa
remarks, “I was managing a flare-up and it was
so tough to keep up with the calorie demands. I
have memories of choking down chicken dinners
just to stay fueled for my workouts.”
Relying heavily on her blender, Vanessa made
shakes, or “calorie bombs,” loaded with almond
milk, bananas, protein powder and peanut butter
to get her through. And she learned little tricks
on race day, such as having tolerable snacks on
hand and learning ahead of time the kinds of
foods that work for her body and what it was
experiencing on any particular day. “Anyone
going through intense training can and likely
will get sick to their stomach,” she says. “I just
focus on my goals instead of just the disease.”
Whether training for her next endurance
obstacle or involved in day-to-day life, Vanessa
has also learned the best way to manage her
Crohn’s diagnosis is to just be on top of it. “Not
ignoring my symptoms was key for me,” she
says. “I found the more I put off what I knew
was coming, the worse it was for me.” Now,
with the help of her physician, she has a process
for acknowledging the onset of a flare-up—
including adjusting her treatment, routine
exercise, dietary modifications that include
limiting fiber, and a trip to her gastroenterologist
(along with a standard yearly checkup, including
colonoscopies every five years).
She is also very open about her disease, even
with her students. As an eighth grade language
arts teacher, Vanessa realizes she has the unique
ability to reach young people directly and
educate them about what having Crohn’s disease
means for those managing it every day. And
she knows that many of her students are dealing
with similar struggles—whether due to stress
or more complicated issues—and strives to be a
resource for them. She also wants them to see
her pushing herself, despite the disease, and
invites her students to track her progress online
on race days. “It’s nice to show them that they
don’t have to feel limited by anything,” she says.
“My students are part of my journey and I want to
teach by example and show them that I’m rising
to the challenge.”
Teaching and sports aside, Vanessa derives
strength from doing other things she loves. She
has a very supportive family and enjoys spending
time with them as often as she can. She also
enjoys playing the piano—something she has
done since she was a child. She also enjoys
cooking, and, being from New Jersey, heads to
the shore whenever possible.
At the end of the day, whether she’s pushing
through her latest training regimen, working
with her students, or managing the ongoing
challenges her diagnosis can bring, it’s all
about perseverance for Vanessa. “I realized
that living with Crohn’s, like a triathlon, is an
endurance event in which you learn to expect
the unexpected, develop the ability to persist
through pain, nausea, and exhaustion, listen to
your body to prevent or address problems, and
conquer a challenge one mile at a time,” she
says. “My life is all about managing challenges.
There’s uncertainty in everything we do.
Having a plan, adjusting, moving forward and
knowing I can do it – those are the things I
choose to focus on.” n
Continued from page 5
0 6 Crohn’sAdvocate®
Volume 7B, 2015
Letter from the Editorial Board The Crohn’s Connection
Be sure to
download the
iPad version of
Crohn’sAdvocate®
Magazine
www.CrohnsAdvocate.com
7. Check out behind-the-scenes footage
of all our featured advocates by
downloading our iPad®
edition at
crohnsandme.com
Crohn’sAdvocate®
Volume 7B, 20157
Feature
8. Faces
Crohn’s
of
the
Reflecting on Six Years
of Crohn’s Advocates
C
rohn’s Advocates. Though separated
by generations, they’re bound by their
passion for the cause and their drive
to take action. They don’t sit on laurels
of past accomplishments; rather, they seek new
paths forward to broaden and deepen their
commitment to help others with Crohn’s disease
find their individual voice, break free of the
stigma surrounding their condition and assert
their right to be defined by their lives, not
their condition.
Crohn’sAdvocate magazine recently spoke with
five people we’ve spotlighted during the past six
years to catch up on their continued involvement
in supporting the needs of the Crohn’s disease
community. Their common refrain: If you have
an inflammatory bowel disease, you’re not alone.
In fact, you have a strong, supportive community
to draw on. But the way the disease affects you
is unique, so creating your own path to manage
your Crohn’s is important.
Whether it’s creating legislation, improving
disease awareness education, strengthening
support systems or gathering patients together,
the Crohn’s Advocates we spoke with have
helped blaze a trail for those just starting their
journey with Crohn’s disease.
Crohn’sAdvocate®
Volume 7B, 2015 8
Feature
9. Feature
Driving Legislative Action
Although only 25 years old, Ally Bain has been a leading
national advocate for people with Crohn’s and other
similar medical conditions for more than a decade. Her
willingness, at age 14, to share her story with Illinois
lawmakers was instrumental in getting the nation’s
first Restroom Access Act enacted in 2005. Since then, 15
other states have passed similar laws – the latest being
Delaware in August 2014 with action pending in two
additional states (Indiana and Virginia).
Although Ally has remained on the forefront of
advocating for such Access Acts, she’s also been busy as
a second-year law student at Northwestern University
School of Law in Chicago. “I’ve grown even more aware of
my passions and know that I want to use my law degree
to further my interest in securing civil rights for people
with disabilities.”
“Vulnerable communities share certain traits,” she notes,
adding that they often lack the ability to be heard. “I
want to help give them a voice,” she emphasized.
While Ally says she’s encouraged and appreciative that so
many states have taken action to enact Restroom Access
Acts, she underscores that passage and enforcement of
the law are very different. “Enforcement is a bit trickier,”
she says. “There needs to be a stronger education
initiative with Chambers of Commerce and others to
let stores know that this law is in place and to let people
who need this law know it is available.” She adds that it’s
a challenge that she’s happy to take on along with other
Crohn’s disease advocates.
“Everyone has his or her own way of coping with the
illness and the lifestyle that comes with it,” Ally notes.
Step one, she says, is seeking quality medical care and a
strong support system. “People need to know they’re not
alone. We’re all in this together,” Ally says. “While their
voice can be strong alone, it is stronger with others.”
Broadening
Educational Efforts
“I don’t want people to become their disease and lose
sight of who they are,” says Andrea Meyer, who, along
with Megan Starshak, co-founded The Great Bowel
Movement online community in 2010 to encourage
people to talk more openly about inflammatory bowel
disease. Both women met as college-age counselors at
CCFA’s Camp Oasis, but they wanted to do more to foster
conversation and to provide day-to-day support.
Since the two women were first featured in
Crohn’sAdvocate in 2013, they’ve bolstered the resources
available to inform those conversations. The Great Bowel
Movement’s blogging team now includes a nutritionist,
a doctor and a mental health specialist. “We saw a lot of
questions that got repeated in social media, and while
anyone can have a voice in social media,” Megan notes,
“it is not always reliable information. You don’t want to
give people the wrong information. We need to keep
rationality in the conversation.”
But keeping the conversation rational can be difficult.
People are often eager to help others and too quick to
provide advice and solutions, Andrea says.
“They are doing it from a place of wanting to help, but
literally everyone is different. It’s not a cookie cutter
disease,” Andrea notes. “I wish people would help other
patients through their own journey rather than trying to
force their journey on other people.”
Still, both Megan and Andrea are grateful that the
conversations about Crohn’s disease are happening, even
if they’re not always 100 percent accurate. “It’s not such a
taboo topic anymore,” Andrea says.
To extend the reach of those conversations and respond
to community wants, Megan and Andrea have now taken
a significant next step in the life of The Great Bowel
Movement: in-person events and additional offline
resources and programs. “An in-person event is where
I made my first connection with others like me,” says
Andrea. There’s something about an event or in-person
support group, she adds, that one can’t get through an
online forum. “There’s something very therapeutic about
being physically in the same space with someone who
can say, ‘I get it.’” As Megan notes: “If you’re able to meet
someone else and they can say, ‘I’ve had that happen to
People need to know
they’re not alone. We’re all
in this together.
9 Crohn’sAdvocate®
Volume 7B, 2015
10. Feature
me as well,’ it makes you feel like
you’re not strange.”
But that strangeness can still rear
its head in the workplace and at
schools. “The corporate environment
isn’t always welcoming,” Andrea says,
even though she underscores that
her employer has been wonderful.
“When I first started here, I was very
open that I had this disease and that
I would have bad days and good days.
Everyone knew it.”
But, she acknowledges, employer
education about IBD is a hot topic
and major unmet need, and The
Great Bowel Movement, after
taking into account the importance
of patient privacy, works to get
information to school nurses,
counselors and teachers. “That way
they are more likely to take the
students seriously, and not have an
opportunity to wonder if they are
making something up,” Andrea says.
Regardless of whether the
conversations take place online
or in-person, both Megan and
Andrea emphasize the importance
of having a conversation. “Nothing
else happens unless the conversation
begins,” Andrea says. And for now,
they’re both focused on building
momentum with The Great Bowel
Movement even as they hold down
full-time jobs.
“The hope is that we create an
awareness-army of people at all
different points along their journey
with this disease,” Andrea says. She
adds that she wants everyone to feel
equipped to handle their disease
and to be comfortable talking about
it. “One woman at a recent event told
me she’d never spoken to anyone
except her doctor and her husband
about her disease,” Andrea adds.
“That blew my mind. She is a perfect
example of our target audience. That
is where it all starts – having that
first conversation.”
Building Family
and Community
Supports
Despite serving as an active Crohn’s
advocate and educator in Georgia for
years, nothing had prepared Theresa
Holzknecht for being the parent of an
IBD patient. She took the news of her
son’s IBD diagnosis hard, worrying
that he would have to lead a similar
life as hers.
But her friends, family and Crohn’s
community support system
reminded her to look at the situation
differently. “When I started telling
people,” she says, “I had so many
positive responses suggesting what a
blessing it is that my son has a mom
like me who knows what to look for
and how to help him.”
Theresa’s eldest son, Jackson, offered
his mother comfort when she told
him about the diagnosis of Charley,
Crohn’sAdvocate®
Volume 7B, 2015 1 0
11. his younger brother. She spoke openly to them about how it felt growing up
with Crohn’s since she was diagnosed in 1994 and that she still felt guilty
when she couldn’t do things for the family because of the disease. “But
you can’t help it,” her oldest son told her. “That really made an impact,”
Theresa recalls. “Help what you can; for what you can’t help, you need
to let it go.”
Still, to help smooth that path for her son, Theresa, a former
school art teacher, spent time at Charley’s school to educate
staff about what’s going on with him, saying, “They’re
very supportive.”
But as Theresa knows all too well, such support is
frequently not available to those with inflammatory
bowel diseases. “The harsh reality is that so many
people think they are alone and that nobody
understands,” she says. “Nobody really wants to talk
about it because a lot of it is unpleasant. But talking about
the emotional part of IBD alone can help you find that
people have a lot in common.”
As much as people have in common, however, Theresa is also
quick to point out that “the way this disease affects you may
be different from the way it affects me. It’s not a one-size-fits-
all response.”
And she encourages people to speak up about their disease, even
with employers, and the particular way that it affects them. “Tell your
employer: ‘We all have issues, and some of mine are hidden, but I need to
tell you about them. It will make me work harder because I’ve had to work
harder my whole life. I am a good worker; I don’t want you to mistake my
physical pain for laziness.’”
In short, Theresa says, be up front. “Sharing information about my disease makes
me feel more empowered. Don’t be ashamed.”
Fueling the Patient Revolution
At its heart, what drives 52-year-old Crohn’s advocate, healthcare multimedia
journalist and blogger Michael Weiss is a desire to share information. “It doesn’t
matter whether one person reads the blog or a million read it,” he says. “I believe
it’s my responsibility and my purpose in life to help people with this disease to get
treated with respect and dignity.”
Crohn’s can really
throw you for a loop…
and that’s OK!
As with many chronic illnesses, Crohn’s disease
doesn’t just take a physical toll. It can affect us
emotionally as well. The unpredictability of
flare-ups, changes in body image, or
needing to miss activities can lead to
a full gamut of emotions.
The hope is that we create an
awareness-army of people at all
different levels in their journey
with this disease.
1 1 Crohn’sAdvocate®
Volume 7B, 2015
Feature
12. States Expanding Immediate Access to Restrooms
Since Illinois became the first state to enact a Restroom Access Act in 2005, 15 other states have
followed suit. The legislation, frequently referred to as Ally’s Law after Ally Bain, is a state-by-state
decision. Federal action on a national measure has stalled. The state legislation generally requires
retail establishments with employee toilet facilities to allow customers to use those facilities if
the customer suffers from an inflammatory bowel disease or other medical condition requiring
immediate access to a toilet. States having enacted a Restroom Access Law include:
• Colorado
• Connecticut
• Delaware
• Illinois
• Kentucky
• Maine
• Maryland
• Massachusetts
• Michigan
• Minnesota
• Ohio
• Oregon
• Tennessee
• Texas
• Washington
• Wisconsin
There’s no question it is always important to check with
your doctor before taking advice found on the Internet.
But, Michael notes he’s part of a grassroots movement
powered by technology. “It’s like a patient revolution,
offering the opportunity to make us much better
educated and empowered. I really believe it could
change healthcare.”
And that revolution is picking up steam. “Since 2012,
people are much more candid on social media,” he
says. “They’re willing to go online and share their most
intimate details.” For him, the impact of that change
is “a proliferation of healthcare social media such that
patients can go to their doctor armed with the knowledge
and experience of thousands of similar patients, and that
has transformed the doctor-patient relationship into
more of a respectful collaboration.”
Michael is not new to sharing details of his 30-year
battle with Crohn’s – he wrote a book in 2001 on the
topic and later started a website. And he’s not hesitant
about pushing harder and more publicly for medical
professionals and the healthcare community to do more
to help those with inflammatory bowel diseases.
Michael sees himself providing an educated patient
perspective on Crohn’s and IBD, and he says he’s eager
for patients to do more to help the medical and research
community. “When people see someone else had this
symptom and it can be treated, they’re more apt to
share information. And researchers need the patient
information, the patient records.” He says many patients
know more about their specific case of the disease than
do their doctors who must treat a possibly infinite
number of variations of the same IBD.
Michael also wants patients to use their experience to
help others. To that end, in February 2013, he launched
the “Crohn’s disease Warrior Patrol” whose mission is to
match Crohn’s patient warriors with local hospitalized or
new patients. By doing so, Michael says he wants current
warriors to provide hospitalized patients with “comfort,
experience, personal stories, a hug, a smile, a laugh and
an overall cheerful hospital or Skype/telephone visit to
let them know we are in the fight TOGETHER.”
Together, using social media and in-person engagements,
Michael says it’s time to move the conversation beyond
being “a bathroom disease.” As he points out, “Part of
the challenge is that we need to expand awareness of
the emotional, physical, and social impact of this
disease on individuals in their home, at work and in
their communities.” n
Crohn’sAdvocate®
Volume 7B, 2015 1 2
Feature