Patients with Crohn's disease, or CD, may require surgery during the course of their disease. This can result in the need to create a permanent or a temporary ostomy. Ostomy is the term used to describe the surgically created connection between the intestine and the abdominal wall. It allows for the evacuation of the fecal matter through the abdominal wall. The potential need for an ostomy is a major concern for many patients with inflammatory bowel disease as it may impact their daily function and quality of life. Within the CCFA Partners network, we evaluated the characteristics of CD patients who had an ostomy for at least 6 months. We also looked at how ostomy impacts their daily function and quality of life. A total of 4733 patients were included, of these, 402 reported an ostomy for at least 6 months. Patients with ostomy were more likely to be in clinical remission compared to those with no ostomy. Also, only half the patients with ostomy were receiving specific IBD therapies. Having an ostomy did not impact the quality of life or sexual function (interest and satisfaction) of CD patients. Additionally, there was no association between having an ostomy and anxiety, depression, or sleep disturbances. However, having an ostomy was associated with increased pain interference, fatigue and lower social satisfaction. It was also associated with higher rated of narcotic use. Appropriate counseling before and after surgery can help improving social satisfaction for patients with ostomy. Further studies are needed to determine the nature of pain and fatigue in this population.

Like many other chronic illnesses, there is inconsistent quality of health care for inflammatory bowel disease, or IBD. In this study, nearly 1000 patients with Crohn's disease or ulcerative colitis took a survey about their experiences with chronic illness care, including questions about goal setting, problem solving and follow-up. Patients who had a recent gastroenterologist visit, hospitalization, surgery, or currently had a pouch or ostomy, reported having higher quality of care. Patients with higher quality of care also reported better quality of life.

In a survey of over 2500 patients with inflammatory bowel disease, 80% said that their disease symptoms affected their sexual interest and satisfaction. In general, women, patients with disease around their rectum and patients with more active disease had less sexual interest and satisfaction. Half of patients with ostomies said that their ostomy affected their sexual satisfaction.

People with inflammatory bowel disease, or IBD, often say that specific foods make their symptoms better or worse, but there is no good scientific evidence to support a specific diet. In this study, nearly 7,000 patients with Crohn's disease or ulcerative completed a survey about the their diet and IBD symptoms. Yogurt and rice were most often reported to improve symptoms. Vegetables, fruit, spicy foods, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high fiber foods, fatty foods, seeds, coffee and beans were most frequently reported to worsen symptoms. In general, patients with ulcerative colitis ate more fruit, vegetables, beans and popcorn than patients with Crohn's disease. Crohn's disease patients with an ostomy tended to eat more cheese, sweetened beverages, milk, pizza and processed meats than Crohn's disease without an ostomy.