Blog #4: IBD Support

It can be quite challenging to live with a chronic condition and patients cannot navigate this disease alone. Luckily, there are many resource centers to help guide patients with their journey after diagnosis. First, gastroenterologists and most teaching hospitals like NYU Langone have their own IBD centers with dieticians, nurses, and support staff who maintain educational material to assist patients and families in understanding how to manage the disease. Another very well established and helpful resource is the CCFA, established in 1967 by Dr. Henry Janowitz, William and Shelby Modell, and Irwin and Suzanne Rosenthal. The CCFA has chapters across the United States that host events and maintain support groups to lessen the strain and loneliness of dealing with IBD. Patients with UC, especially adolescents, can benefit from participating in support groups where they can connect with others going through comparable struggles.

I find that two resources in particular that the CCFA has created are extremely helpful to patients. First, the We Can’t Wait: Restroom Finder app is a game changer for many because it locates publicly accessible bathrooms and helps identify sympathetic establishments across the country. In addition, the CCFA has collaborated with volunteers in numerous states to submit legislation that calls for those in need of medical attention to have access to employee-only restrooms. Second, the Power of Two app connects patients and caregivers facing challenges brought on by IBD with peers with similar issues and concerns. It is helpful to know that one is not alone in this journey. Living with this intimate condition can be daunting, thus these resources are extremely helpful in decreasing the stress of managing one’s chronic illness.

You can visit the CCFA website at www.ccfa.org for additional details about IBD and current research initiatives. You can also contact the IBD Help Center by phone at 888-694-8872 or by email at info@ccfa.org to become involved.

While I hope you have found the last few posts informative, a true understanding of IBD requires more than just facts and figures: it requires a peek into what life is really like with IBD. With that in mind, the next and last blog post will take you through my own journey with this condition.