Urgency, which is the immediate need to defecate, is common in IBD. In this study, we evaluated the relationship between urgency in ulcerative colitis patients and outcomes like quality of life and hospitalizations.

We studied 632 patients with UC. Urgency, described as "hurry," "immediately," and "incontinence," was associated with many factors like social isolation, depression, anxiety, and fatigue. It was also associated with increased risk of hospitalization, steroids, and surgery.

These findings support using urgency as an important quality of life outcome to be studied in clinical trials.

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.

Studies suggest that there is a temporal relationship between depression and Crohn's disease (CD) activity. We evaluated the existence of reverse causality reflected in a possible bidirectional relationship between patient-reported CD activity and depression. To research this, we studied 3307 adult volunteers with a self-reported diagnosis of CD who completed a baseline survey that included demographics, CD activity, and depression. Crohn's disease status and depression were also measured 6 and 12 months after the first evaluation. The results of the hypothesis testing showed the most support for the hypothesis stating that depression is a stronger predictor of patient-reported CD activity. In conclusion, our findings suggest that CD patients' negative self-regard is clinically important to understanding change in patient reports of their CD activity. Gastroenterologists should screen for affective-cognitive symptoms of depression in CD patients. Evaluation and treatment of depression may improve the course of CD.

The rate of diagnoses has increased for both obesity and IBD, and some research suggests that obesity may play a part in the development of IBD. About 15-40% of patients with IBD are obese, which is defined as having a body mass index (BMI) of 30 or higher. However, there has been little research on how obesity might affect outcomes in patients with IBD. In this study of nearly 7300 patients with IBD, we found that about one in 5 patients with IBD were obese. Obese patients were more likely to have active symptoms related to IBD, as compared to patients with normal BMI. Over a period of 12-18 months, we obs erved that obese patients with active disease were significantly less likely to achieve remission. Similarly, among patients in remission at baseline, obese patients were 2-3 times more likely to relapse on follow-up, as compared to patients with normal BMI. Obese patients with IBD were more likely to have anxiety, depression, fatigue, and experience pain. They were also less satisfied with their ability to participate in social roles. These effects were seen in patients with both ulcerative colitis and Crohn's disease. Future studies to find out whether treating obesity may improve outcomes in patients with IBD are needed.

Marijuana is legal in a number of states for indications that include inflammatory bowel diseases (IBD), and patients are interested in its potential benefits. For this study, we aimed to describe the legal use of marijuana in individuals with IBD in the USA who participate within the IBD Partners Patient Network. Approximately 2400 participants who lived in states where prescription or recreational marijuana was legal, were offered the chance to complete a survey on marijuana use and IBD symptoms. Surveys were completed by 1666 participants (71%). Within the surveyed group, 234 participants lived where both medical and recreational marijuana is legal and 49 mentioned recreational marijuana use specifically for IBD. Most of the users reported positive benefits, but users also reported more depression, anxiety, pain, and lower social satisfaction than non-users. Overall, we found that few IBD patients consulted their medical doctors about marijuana use or used prescription marijuana. Where recreational marijuana was available, usage rates were higher. Users reported benefits but also more I BD symptoms, depression, anxiety, and pain. Marijuana use may be higher in patients with IBD symptoms not well treated by traditional medical treatments.

Little research has been done exploring how inflammatory bowel disease (IBD) affects sexual health. In this study, investigators asked a large group of IBD patients to complete a 6-question online survey. The questions asked about sexual interest and satisfaction. Researchers found that these IBD patients had similar levels of sexual interest as the general population, but they had lower sexual satisfaction and lower quality of life as it related to their IBD. Older age, disease activity, depression, anxiety, and pain were associated with these findings. Exploring these sexual health topics during clinical encounters can help improve IBD quality of life.

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.

Symptoms (pain, fatigue, sleep disturbance, depression, and anxiety) are common among people with Inflammatory Bowel Disease (IBD). We know people do not experience only one symptom and symptoms may occur is clusters. Symptom clusters are two or more symptoms that occur together and are related. Understanding how symptoms cluster is needed so that we can develop methods that decrease multiple symptoms in IBD. The purpose of this study was to (a) describe how symptoms cluster in IBD, and (b) to describe the relationship between demographic and clinical factors and symptom cluster membership.

In this study, we used the CCFA Partners Cohort and the symptoms of pain interference, fatigue, sleep disturbance, anxiety, and depression. There were 5,296 participants with an average age of 44 years, and the sample was 72% female. We discovered four symptom cluster groups. The first group was labeled "low symptom burden" (26%), and this group had symptoms of pain, fatigue, sleep disturbance, depression, and anxiety. The second, and largest group (38%) was labeled "high symptom burden," and included pain, fatigue, sleep disturbance, depression, and anxiety. The third group included 22.09% of participants, was labeled "physical symptoms," and had the symptoms of pain, fatigue, and sleep disturbance. The fourth group "psychological symptoms," was the smallest group at 14.22%, and included the symptoms of anxiety and depression. Being female, having a history of smoking, currently taking corticosteroids, Crohn's disease, and active disease state were associated with belonging to the high symptom burden group compared to the low symptom burden group. Additional research is needed to test strategies that may be effective at reducing symptoms in people with IBD.

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.

Between 20-35% of patients with ulcerative colitis (UC) have had a colectomy (surgery to remove part or all of the large intestine). The most common type of colectomy is called a "restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA)". This is a surgery to remove the large intestine and rectum and to create a small pouch out of the small intestine that is connected to the anus. This pouch is used to store stool and is often called a "J-pouch" (It is shaped like the letter "J"). Pouchitis (inflammation of the pouch) is the most common complication of this type of surgery and consists of symptoms of diarrhea and urgency. In this study, we wanted to know how many CCFA Partners participants have experienced pouchitis and what medications and characteristics are common among this group. To answer these questions we looked at survey responses submitted by more than 15,000 CCFA Partners participants. We found that 248 patients reported having an IPAA at some point in time. Of these patients, 82% also reported at least one episode of pouchitis. Patients with a history of pouchitis were more likely to use antibiotics. Patients who reported a recent episode of pouchitis (within the past six months) were more likely to report worse quality of life, depression, fatigue, and dissatisfaction with their social role. The majority of patients who have had a colectomy develop pouchitis at some point. During episodes of pouchitis, patients experience worse quality of life.

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.

Patient reported outcomes (PROs) are important measures of how well treatment works in Crohn's disease (CD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a new scale for measuring PROs for physical, mental and social health. The results can be compared to those from people that don't have IBD. A gastrointestinal (GI) PROMIS scale was recently developed. The GI scales were not studied in large numbers of Crohn's patients, but were studied in people all across the United States. We studied these questions in 1839 people with Crohn's disease in CCFA Partners. Most (75%) were women. People with Crohn's disease reported more fatigue, anxiety and pain compared to people without Crohn's disease. People with Crohn's disease reported less reflux, problems swallowing and constipation than people without Crohn's disease. Other GI symptoms for people with Crohn's disease were similar to those reported by people without Crohn's disease. Compared to people in remission, people with active CD reported worse symptoms on the GI-PROMIS scales for all symptoms except problems swallowing and constipation. Those with a worse quality of life, as measured by the Short IBD Questionnaire (SIBDQ), reported worse symptoms on the GI-PROMIS scales all symptoms. People who reported more nausea, diarrhea, gas/bloat and abdominal pain reported more psychosocial symptoms on the PROMIS scales. In summary, those with worse symptoms on the GI-PROMIS scales scored worse disease activity scales, quality of life scales and more symptoms of depression and anxiety. These scales could be important ways to measure symptoms in the future.

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.

Older patients with inflammatory bowel disease, or IBD, often have higher rates of hospital stays and disease complications. Past studies have shown that medical treatment plans for older IBD patients may be different than those for younger patients. One difference is that treatment plans for older IBD patients involve increased use of 5-aminosalicylates (5-ASA) and corticosteroids. It is not known how continuous use of steroids by older patients affects anxiety, depression, sleep, and fatigue. Using data from CCFA Partners surveys we wanted to 1) describe medication use in older versus younger IBD patients and 2) determine whether continuous use of steroids by older patients leads to differences in anxiety, depression, sleep, and fatigue. We found that medication use is different among older patients. Older patients with Crohn's disease have more continued steroid use than younger patients. Continued steroid use was associated with worsened anxiety, sleep, and fatigue. Also, steroid use alone in older Crohn's disease patients was associated with increased depression and anxiety. As in younger IBD patients, our findings support limiting the continuous use of steroids for treatment of IBD in older populations.

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.

People with inflammatory bowel disease (IBD), like Crohn's disease and ulcerative colitis, tend to have poor quality of sleep. In this study of over 3000 people with IBD, those with more disease activity, depression, female gender, a history of smoking, or those currently taking corticosteroids or narcotics were more likely to have sleep disturbance. Of people with Crohn's disease who were in remission at the beginning of the study, those with sleep disturbance were twice as likely to have a flare in 6 months. No effect was seen for ulcerative colitis. These results suggest that sleep is important for maintaining remission in IBD.

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.

After the successful launch of CCFA Partners for adult patients with inflammatory bowel disease, the kids and teens component (CCFA Partners Kids & Teens) started in 2013. In partnership with the Crohn's and Colitis Foundation of America (CCFA), children <18 years of age were asked to join the internet-based study through email invitations and promotion on social media sites. After informed consent, the children and their parents completed surveys asking questions about their disease, their medications and other patient reported outcomes (such as quality of life, fatigue, sleep, peer relations, mood, etc). In the first month, 419 children joined. The average age was 13, with about 1/2 being female and about 3/4 having Crohn's disease (CD). Common medications used by patients with CD were biologics, thiopurines (6mp or azathioprine) or mesalamine-based medications (Pentasa, Lialda, Apriso, etc). The most common medication for patients with ulcerative colitis (UC) was mesalamine-based medications. Most of the CD patients were in remission and most UC patients had mild disease. Children who had active disease had more depression and anxiety. Following this group of children over time will help us to learn a great deal about living with IBD as a child, and will allow us to follow these children into adulthood to learn even more about the disease itself, the impact of medications, and how symptoms change over time.