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IBD Connect: A Support Network For Those Suffering from Inflammatory Bowel Disease

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Inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis, can have significant psychological impacts on those with the disease. Often times there is a stigma attached with IBD making it uncomfortable to talk about the disease.

Many people find comfort when they are able to connect with others who have had similar experiences.  IBD Connect is a volunteer support network for patients, families, and caregivers affected by IBD.

Randi Segal and Pam Levy

Randi Sigal and Pam Levy, co-founders of IBD Connect, have personally experienced the hardships of IBD through their families. They felt vulnerable once they left the hospital because they did not have enough educational or support resources available to them.

Randi and Pam felt that there was a void of support for patients who were going through the same struggles that they faced. They decided to create a network of volunteers that offers support and encouragement to those who have personally experienced IBD.

The Volunteers

All of the volunteers in the IBD Connect network have personal experiences in coping with IBD, which patients have noted creates a more comfortable interaction.
“I’ve had Crohn’s disease for 50 years. I’ve had dozens of hospitalizations, seven surgeries in numerous hospitals in several different states. I’ve never had anyone speak to me like this. I’ve never had anyone give me resources like this; no one has ever done this for me. I am so grateful.”

How IBD Connect Works

Patients seen at the UPMC Inflammatory Bowel Disease (IBD) Center are eligible to take part in IBD Connect. Patients are referred to IBD Connect by medical staff or seeking a visit on their own.

IBD Connect wants to empower patients and spread the message that IBD does not have to define who you are – what you choose to do with it remains in your control.

How the Support System Works

IBD Connect currently focuses on the inpatient population, including those patients who have:

  • Recently had surgery
  • Experienced a flare of their disease
  • Been recently diagnosed

They are also able to provide resources and education to patients both in and outside of the hospital.