IBD: Support is Key

The IBD Support Foundation fills the gap in sup­port services for patients and families confront­ing inflammatory bowel disease.

By Diana Price

For 14 years Marci Reiss lived the life of a patient with an incurable disease. Diagnosed with Crohn’s disease in 1997 at age 27, Marci was hospitalized more than 160 times, managed medication side effects and numerous procedures, and felt the full physical, emotional, and social burden of living with a disabling disease that affected every aspect of her life. In 2011 Marci was delivered equally transformative news: she had been misdiagnosed; she did not have Crohn’s disease. She stopped all treatment and be­came well.

The gift of her health, after so many years of suffering, reaffirmed her mission to continue with work she had begun in 2003, while man­aging illness herself, to serve pa­tients and families facing a diagno­sis of inflammatory bowel disease (IBD) by providing psychosocial support.

Overwhelmed by the lack of in­formation and guidance she had been provided at diagnosis, Marci founded IBD Support Foundation (IBDSF), a not-for-profit organiza­tion dedicated to “improving the quality of life for individuals with Crohn’s disease or ulcerative colitis through psychosocial support, edu­cation, and research.”

Marci’s desire to help other pa­tients and families stemmed from her own traumatic introduction to managing disease: “I had en­tered the ER [emergency room] as a healthy person and left with [a diagnosis of] an incurable disease, with no idea what that meant for my life and my future,” she says. “I was filled with questions and hor­rified that this is what happened to people—that they were given a disease diagnosis and a follow-up appointment but no guidance.”

In the aftermath of that experi­ence, Marci pursued a master’s de­gree in medical social work and has consistently worked to build IBDSF to provide psychosocial support to IBD patients and families. Her goal, then and now, she says, was to “enable people to go back to a prediagnosis state of functioning,” to help them understand that they can still accomplish their goals and achieve their dreams despite the di­agnosis.

Psychosocial support is uniquely essential for patients and families confronting a life with IBD, Marci says. Across age and stage of life, patients must manage symptoms that are as emotionally painful and uncomfortable as they are physical­ly disabling: the inflammation of the gastrointestinal tract that char­acterizes IBD can lead to diarrhea, rectal bleeding, and lack of bowel control as well as fever, fatigue, and unintended weight loss, among oth­er symptoms.

“What’s uniquely challenging about IBD is that the symptoms are not easy to talk about,” Marci says. “It’s not easy to explain to others, and the symptoms can be very em­barrassing.” Patients feel isolated and experience a lack of control that can be crushing, and the disease can exact a high toll across many aspects of life, damaging relation­ships, thwarting career objectives, and undermining self-esteem.

Further exacerbating the situa­tion, Marci says, is the fact that upon diagnosis patients and families meet this new reality without the skills to cope, process, and overcome the challenges they face. “When you’re diagnosed with a chronic disease, it’s a life-changing experience, yet there’s no preparation for this expe­rience, no guidance.”

It is the goal of IBDSF, Marci says, to provide programs and ser­vices to fill this gap in education and therapeutic support so that pa­tients can overcome the many hur­dles they will face throughout their lives with IBD. To that end IBDSF has created a truly comprehensive range of offerings that include pe­diatric and parent support groups, young adult groups, individual and family counseling, school advocacy, and hospital visitation programs— all free of charge. In addition to the in-person support programs, IBDSF has recently partnered with OMNI Health Media to moderate the Crohn’s disease and ulcerative colitis communities on TheGICon­nection.com, an online support community providing information, inspiration, and support for indi­viduals with conditions affecting the GI tract.

Headquartered in Los Angeles, IBDSF is currently serving patients and families in Southern Califor­nia, across the United States, in Canada, and in Israel. In addition, efforts are under way to implement IBDSF’s standardized psychosocial assessment and intervention proto­cols in healthcare settings that will help physicians and allied health­care professionals provide their pa­tients with support from the point of diagnosis.

As IBDSF moves into its second decade of providing therapeutic support to patients and families confronting IBD, Marci says she continues to be inspired by her orig­inal mission: to alleviate the pain and suffering of patients.

For more information about IBDSF, visit ibdsf.org.