Post-traumatic stress (PTS) is a chronic psychological reaction to an event where the person experiences actual or perceived threat to life or bodily harm. PTS symptoms include nightmares, flashbacks, irritability or low mood, feeling keyed up or on edge, and avoiding situations that trigger trauma memories.

Before this study, only one study on PTS and IBD, with 140 patients, had been conducted in the US. In the previous study, a much higher than expected proportion of patients (32%) reported moderate to severe symptoms of PTS. Because of the nature of IBD and its treatment, researchers aimed to see if there was a similar proportion of PTS in a larger patient sample through IBD Partners and to see how PTS symptoms are related to patient outcomes.

Researchers measured PTS symptoms in a large study of 797 participants using a standard symptom questionnaire and collected other data from IBD Partners including IBD disease activity, hospitalizations, surgeries, and quality of life. Researchers then looked at relationships between PTS symptom severity and each of these important IBD metrics. As expected, PTS was associated with more severe IBD, increased hospitalizations and surgeries, and increased anxiety, depression, fatigue, and pain impact in daily life. Researchers also found women, and racial and ethnic minorities were disproportionally affected by PTS.

Children and teenagers with Inflammatory Bowel Disease (IBD) are at increased risk of being unhappy with their body image. This study aimed to learn more about how common body image dissatisfaction (or "BID") is among these children and teenagers and to see if we could point to any risk factors for having BID. A total of 664 participants in the IBD Partners Kids & Teens study, ages 9-18, completed an online survey about anxiety, depression, disease activity, and quality of life. We found that about 3% of participants met the criteria for having BID by selecting the answer choices "I look awful" or "I look bad" when asked about their appearance. Young patients with BID tended to have worse disease, to be taking steroids, to be female, and to be diagnosed at an older age. These participants were also much more anxious and depressed than those who were satisfied with their appearance. Pediatric patients with BID should discuss these concerns with their physicians and healthcare teams.

People with inflammatory bowel disease, or IBD, commonly experience diarrhea and abdominal pain. These symptoms are often related to inflammation associated with IBD. Sometimes these symptoms are related to both IBD and irritable bowel syndrome, or IBS. IBS is sensitivity of the intestine without inflammation. Patients with IBD who are diagnosed with IBS may experience changes in their care and well-being. We looked at the rate of IBD-IBS diagnosis in the CCFA Partners network. We also looked at how a diagnosis of IBD-IBS impacts outcomes, such as ability to perform normal daily activities, and use of specific medications. A total of 6309 patients were included, of these, 20% reported being diagnosed with IBS after their IBD diagnosis. Patients with both an IBD and IBS diagnosis had higher rates of narcotic use compared to patients with an IBD diagnosis alone. An IBS diagnosis was associated with anxiety, depression, fatigue, poor sleep quality, pain interference, and decreased social satisfaction. Appropriate diagnosis, treatment, and counseling may help improve outcomes experienced by IBD-IBS patients and reduce narcotic use in this group.

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.

Women with inflammatory bowel disease, or IBD, frequently experience changes in abdominal symptoms (e.g. bowel frequency and pain) in relation to the different stages of the menstrual cycle. This may be related to the hormonal changes during the various stages of the cycle. Menopause is the state when the menstrual cycles and associated hormonal fluctuations stop permanently. This can occur naturally in relation to age or can be secondary to surgery or medical therapy that impact the reproductive organs. The impact of menopause on disease activity of patients with IBD is unknown. We assessed the disease characteristics of menopausal women within the CCFA Partners network. We also evaluated the impact of menopause and hormone replacement therapy, or HRT, on disease activity. A total of 2252 women were included in this study. Of these, 799 indicated that they had gone through menopause. The majority of post-menopausal women reported natural menopause with an average age of 50 in both Crohn's disease and ulcerative colitis patients. About half the post-menopausal women indicated a current or prior use of HRT. The post-menopausal state was associated with increased disease activity in both Crohn's disease and ulcerative colitis patients. This association was more prominent for women at age = 45 compared to those older than 45 years. Interestingly, the use of HRT did not impact disease activity at any age. Those findings suggest that the cessation of hormonal fluctuation in post-menopausal women as well as the age play role in predicting disease activity in women with IBD.

Depression is common among patients with Crohn's disease (CD). In this study, we wanted to understand if CD patients in remission who reported symptoms of depression were more likely to experience worsened CD symptoms later in time. To answer this question we looked at responses to CCFA Partners survey questions submitted by more than 2,000 CD patients about negative mood (I felt depressed), negative beliefs about the self (I felt worthless, I felt hopeless), and decreased life engagement/negativity (I felt hopeless) during the past seven days. Twelve months later, we asked about the severity of their CD activity using a standard CD questionnaire about diarrhea, pain, and well-being. We found that symptoms of depression predicted CD activity a year later. In other words, CD patients who were depressed were more likely to have CD symptoms a year later than those who were not depressed.

Patient-reported outcomes, or PROs, can give useful information to doctors and researchers about patient health. In a study of over 7000 patients with inflammatory bowel disease, or IBD, PROs showed that IBD patients had more anxiety, depression, fatigue and sleep disturbance, and less social satisfaction than the general population. Using corticosteroids made all of the outcomes worse. These results showed that IBD patients, like patients with other chronic illnesses, were lower functioning than the general population.

Depression is common among patients with inflammatory bowel disease, or IBD. This study showed that as many as 1 in 4 elderly patients with IBD may suffer from depression. Depressed elderly patients with IBD were more likely to have more severe disease activity. They were also less likely to take their medication correctly all of the time.

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.