The Value of Support Groups when Living with Crohn’s Disease

The Value of Support Groups when Living with Crohn’s Disease
In a world where medical professionals have only a few minutes to go over a whole slew of symptoms, medication interactions, and surgical complications, it is impossible to cover the psychosocial aspects of one's condition(s). These aspects include methods of coping with the emotional roller coaster of living with inflammatory bowel disease (IBD). This is where support groups come into the picture. They fill that gap between doctor-patient interactions and provide real-time support and understanding to patients caught in the rigmarole of hospital visits, health insurance, and invasive testing. But more than this, the true value of support groups lies in empowering patients by fostering lifelong friendships through a deep understanding of the ins and outs of chronic illness, and how it affects various life experiences. I regularly attend patient support groups, including groups specific to having ostomy surgery and living with IBD. I remember my mom encouraging me to attend a group in the hospital over a decade ago. I was quiet at the first meetings unless I had a burning question that was percolating in my mind. I struggled to share my story or the extent of the issues I was facing due to the stigma of having a bowel disease, an ostomy, and later, multiple fistulae. But the experience was valuable because I would leave those meetings feeling less alone, less afraid, and less ashamed of the havoc my body was wreaking on itself. Fast forward several years, I began to speak up at meetings, and I noticed that many participants would reach out to me separately to talk, and sometimes to hang out. I soon began to facilitate support groups as a volunteer for the Crohn’s & Colitis Foundation in New York City, specifically the Women’s Support Group, and occa
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One comment

  1. kholder says:

    I hope that your guest will address the use of Faecal Calprotectin testing for inflammatory markers in Primary Care prior to even doing blood tests (TTG). Studies have already shown that coeliac children with high FCAL results indicating IBD, do much better on subsequent FCAL if they follow a gluten free diet. We see far too many physicians relying simply on blood tests for coeliac which are not always reliably accurate and carry a high healthcare cost.

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