I wanted to pass along a resource for those suffering with Inflammatory Bowel Diseases like Crohn's Disease and Ulcertaive Colitis. Its called CCFA Partners and it is a database of patients in the United States. Currently there are almost 13,000 patients registered, and almost 600 kids and teens registered as well. According to the CCFA, the goal of this initiative is to create an online registry to "help us obtain a better understanding of issues facing IBD patients, how patients are functioning, what they eat, and how they receive treatment in different areas of the country. We will use the CCFA Partners network to provide topics for patients to discuss with their physicians to improve their quality of life."
So far researchers have found some interesting results when studying these 13,000 patients. They have studied everything from risk factors for depression, sleep disturbances, female hormone fluctation, dietary factors, and much more! You can see the abstracts and manuscripts here. I really enjoyed reading about the dietary studies they did, as this is a hot topic that doctors tend to avoid speaking about. They surveyed 6,768 adults and found that foods that were listed by patients to improve symptoms were yogurt, rice and bananas. (Not a huge surprise for most of us IBDers out there). Foods found to worsen symptoms were non-leafy vegetabels, spicy foods, fruit, nuts, leafy vegetables, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high fiber foods, corn, fatty foods, seeds, coffee, and beans. You can look on their chart of UC vs. CD or disesase locations to see what various sub-groups reported as well. No firm conclusions were made for dietary recommendations, but it is helpful for new patients to have an idea of what kind of foods may end up causing issues at some point.
So who wants to be partners? Let's work together and promote research so we can all improve our quality of life together.