to a group of inflammatory conditions of the digestive tract, including Crohn’s disease and ulcerative colitis. Individuals
with IBD, along with their families and caregivers, can face stressful challenges
and stigma about the condition. Yet many people find comfort when they are able
to connect with others who have shared similar experiences.
|Randi Sigal and Pam Levy.|
That’s why Randi
Sigal and Pam Levy started IBD Connect,
a network of volunteers that offers
support and encouragement to those who have personally experienced IBD. Here, we ask Sigal and Levy about the
Q: What exactly is
A: IBD Connect is
a volunteer support network for patients, families and caregivers who are affected
by IBD. The reason we started this
service is because we both have personal and family experiences with these
diseases. While we received excellent
care, we felt there was a void in support for patients who were going through
the same struggles and traumas that we had experienced. We wanted to fill this void by offering
person-to-person interactions that diminish fear, provide helpful information,
and restore hope while demonstrating the ability to live a fulfilling life.
We saw our first patient in September 2012, and have seen more than 250 patients since then. So,we’re encouraged that we’re helping meet
the growing need for support.
Q: Was the stigma about IBD a factor in creating this network?
definitely. Certain diseases are openly talked about, but with IBD there is
unfortunately often a stigma attached. People often aren’t comfortable talking about their disease. This can lead to isolation, which can be
debilitating and depressing. IBD Connect
encourages people to be more comfortable and open.
While there are support groups available, we felt that
talking to patients one-on-one has a unique and special power. We wanted to spread the message that IBD does
not have to define who you are – what you do with it remains in your
Q: How does the support system
A: We chose to
focus on the inpatient population since they are more vulnerable. These patients can include those recently
undergoing surgery, experiencing a flare of their disease or newly
This means visiting patients and families while they’re at
the hospital, and letting them verbalize how they feel, what they’re going
through, and venting their frustrations. We also provide resources and education so they don’t have to figure out
next steps by trial and error. We also continue to be available to patients
even after they’ve left the hospital.
Q: Who are the
volunteers in the network?
A: All of the
volunteers in our network have IBD themselves or someone in their families has
IBD. This enables the patient to feel
more comfortable talking about their experience. We’re currently working on expanding a database of
volunteers so we can match patients and volunteers that have similar
experiences, such as being the same gender and age.
Q: What were your
personal experiences with IBD?
A: Sigal: My sister-in-law was diagnosed with Crohn’s
disease 30 years ago, and my twin sons were diagnosed one month apart in
January and February of 2009. Then, in
October of 2009, my son’s small bowel perforated and he had to have emergency
surgery. This life-threatening experience
was very traumatic. Our hospital
experience led to the creation of our network.
We wanted to help others facing the experience as well as the transition
home – the idea of going home on our own was very frightening, and we weren’t
sure what resources were available. I
then approached my dear friend Pam, and the partnership came together.
Levy: It is also
a family disease for me as my father had and my sister currently has ulcerative
colitis. It was something I grew up with
and adapted to from an early age. When
we first approached Dr. Miguel Regueiro and the IBD team with the idea, we said
we would feel successful even if we helped just one person.
volunteers primarily see patients at UPMC Presbyterian and UPMC Montefiore. To
learn more, call 412-864-1784 or email IBD.email@example.com. Volunteers are available to make hospital
visits or speak with patients, families or caregivers over the phone.
Labels: colitis, Crohn's, inflammatory bowel disease