One of the hallmark symptoms of ulcerative colitis (UC) is urgency, the uncomfortable sensation of having to defecate immediately. Urgency might significantly impair a person's ability to travel, attend events, and leave the house without the knowledge of where the closest bathroom is. In this study, researchers evaluated the relationship between urgency and quality of life and other outcomes, like hospitalizations and surgery.

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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.

Researchers compared the effectiveness of a Mediterranean style diet to the Specific Carbohydrate Diet in nearly 200 Crohn's disease patients with mild-to-moderate symptoms on stable doses of medications. With both diets, nearly half of the patients experienced resolution of their symptoms. After six weeks, 43.5% of patients following a Mediterranean style diet and 46.5% of patients following the Specific Carbohydrate Diet achieved symptomatic remission.

While the Specific Carbohydrate Diet has typically been popular among IBD patients, public health experts often recommend a Mediterranean style diet because it has a variety of other health benefits. Researchers from the DINE-CD study also note that it is easier to follow than Specific Carbohydrate Diet.

Researchers included nearly 1500 women with Crohn's disease and ulcerative colitis who became pregnant. To better understand pregnancy outcomes, those on medications like biologics were compared to those not on these medications. Children were followed for the first year of life.

Importantly, being on biologics and thiopurine medications did not increase any pregnancy or neonatal complications. In fact, higher disease activity of IBD was associated with complications like miscarriage and preterm birth. Researchers concluded that medications should be continued throughout pregnancy to control IBD symptoms and reduce pregnancy-related complications.

Inflammatory bowel diseases (IBD) affect 200-400 people per 100,000 in the United States, about half of whom are women. Our goal was to research how common it is for women with IBD to experience vulvovaginal symptoms. For this study, we recruited women more than 18 years old with IBD (1250) who agreed to complete an online survey that asks questions about the presence and severity of vulvar or vaginal itch, burn, or irritation, vaginal discharge or dryness, and vulvovaginal pain. The survey collected information on background information and a history of their IBD activity history. Women with and withou t symptoms were compared for analyses. For the results, we found a total of 512 women reported at least 1 moderate-severe vulvovaginal symptom. All vulvovaginal symptoms except vaginal dryness were more common in women with active IBD and vulvovaginal discomfort frequently or always decreased interest in sex or ability to have sex. In conclusion, we found that women with more active IBD have increased prevalence of vulvovaginal discomfort, compared to women in remission. These symptoms affect sexual health.

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.

Successful patient-powered research networks (PPRNs) can improve health behaviors and outcomes. Researchers for this study wanted to better understand how a PPRN might meet the needs of people with inflammatory bowel disease (IBD). To do this, they sought feedback from members of the IBD community through focus groups and phone interviews. Focus group discussions were designed to understand participants' experiences and needs managing their disease. Discussions also explored the outcomes most important to participants and ways to make a PPRN most useful. Individual interviews were used to assess different design prototypes of the patient portal user interface and explore ways the portal could help track and manage IBD while simultaneously contributing to research. The research found that participants were more willing to participate in the PPRN if the knowledge gained from research studies would benefit both society and the individual. However, participants were concerned about the credibility of online resources, pharmaceutical industry profiting from their data, data security, and the time it would take to participate in a PPRN. Participants expressed that they wanted a true and equal partnership in every phase of building a PPRN. They also felt it was important to have access to personal health records and be able to track health status and symptoms. This feedback was incorporated into the design of the IBD Partners PPRN.

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.

Patient reported outcomes (PROs) are important measures of how well treatments work in inflammatory bowel disease (IBD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a scale for measuring PROs for physical, mental, and social health. A gastrointestinal (GI) PROMIS scale was recently developed based on responses from people across the United States. The GI PROMIS scale includes questions about eight common GI symptoms: gas, reflux, diarrhea, soilage, constipation, belly pain, nausea and vomiting, and difficulty swallowing. We studied these questions in 2,378 people with Crohn's disease (CD) and 1,455 people with ulcerative colitis (UC) in CCFA Partners. About half of the participants reported being in remission. Compared to participants in remission, those with active CD reported worse symptoms on the GI-PROMIS scale for all symptoms. The same was true for participants with active UC with the exception of difficulty swallowing. Participants with worse quality of life reported worse symptoms on the GI-PROMIS scale for all symptoms. Participants with more diarrhea, belly pain, and gas reported poorer mental and social PROs. In summary, participants who reported worse GI-PROMIS symptoms also reported worse qualify of life, disease activity, and mental and social outcomes. These results suggest that the GI-PROMIS scales could be an important way to measure symptoms in the future.

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.

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.

Cohort studies follow groups of people to understand disease. They are difficult to organize and often do not focus on patient-reported outcomes. Internet-based cohort studies provide new opportunities to study patient-reported outcomes; they are also efficient and can easily include large numbers of people. Linking an Internet-based cohort study, like CCFA-Partners, to a traditional cohort study can be beneficial to both studies and add a tremendous amount of information about a disease. Therefore, we aimed to link CCFA-Partners with the Ocean State Crohn's and Colitis Area Registry (OSCCAR) and The Sinai-Helmsley Alliance for Research Excellence (SHARE), both of which are traditional cohort studies. OSCCAR is a cohort of patients with inflammatory bowel disease (IBD) in Rhode Island. SHARE is a cohort across 7 academic medical centers around the United States. Both cohorts collect specimens, like blood and stool, from participants. OSCCAR enrolled people with IBD from 2008 to 2013. SHARE started enrolling people with IBD in July 2012 and enrollment is continuing. People in the cohorts who had access to the Internet were told about CCFA-Partners by the study coordinators and encouraged to enroll.

In the OSCCAR cohort, 243 of the 320 participants consented to join the CCFA-Partners cohort. However, only 44 participants completed enrollment in CCFA-Partners. OSCCAR participants who completed enrollment were better educated than those who did not complete enrollment. In the SHARE cohort, 436 participants completed enrolment in CCFA-Partners. SHARE participants who completed enrollment were more often women and white. If they had Crohn's disease, those who completed enrollment had fewer disease symptoms and if they had ulcerative colitis, those who completed enrollment had less extensive disease. Linkage of CCFA Partners with cohorts such as OSCCAR and SHARE may be a cost-effective way to expand opportunities for research. Although linkage is possible, participant's willingness to complete the linkage is the limiting factor. Asking participants in a traditional cohort at the time of enrollment may be a way of maximizing linkage to CCFA-Partners.

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.

Nonsteroidal anti-inflammatory drugs (NSAIDs, medications such as Advil, ibuprofen, naproxen, etc.) may cause GI inflammation in patients with inflammatory bowel disease (IBD). IBD patients are often told to avoid these medications. We looked at patients in CCFA Partners in who were in remission (with few to no symptoms) and asked about regular NSAID use. We then looked at whether they flared 6 months later. A total of 791 patients were included, of these, 40.6% reported ever using NSAIDS at baseline. Patients with Crohn's disease (CD) who regularly used NSAIDS (at least 5 times/monthly) had a 65% increased risk of later flare. No effect of regular NSAID use was seen for ulcerative colitis (UC). Those with CD who used acetaminophen (Tylenol) also had a 72% increased risk of later flare. Lower doses of NSAIDs had no association with flare. Therefore, regular NSAID use or acetaminophen use may increase the risk of flare in CD, but not UC. This may be related to effects of the medications. It is also possible that those people with IBD who require pain medications at baseline may not be in as full a remission, which may increase the risk of later flare.

Dietary fiber is found in plant foods such as fruits, veggies, and whole grains. Past studies found that dietary fiber can affect bacterial colonies in your stomach and intestines. However, there is limited information about how dietary fiber affects inflammatory bowel disease (IBD) symptoms. In this study, we looked at fiber consumption and whether it was associated with flares in adults with IBD. A total of 1619 participants in CCFA Partners completed a diet survey and a follow-up survey 6 months later. We found that participants with Crohn's disease who reported eating the most fiber were less likely to have a flare within a 6 month period. In addition, participants with Crohn's disease who told us they did not avoid high fiber foods were about 40% less likely to have a flare than participants who told us they avoid high fiber foods. Interestingly, we did not find an association between fiber consumption and disease flares among participants with ulcerative colitis. In summary, eating foods high in fiber may help reduce risk of flares among patients with Crohn's disease.

Patients with celiac disease (an autoimmune disorder where eating gluten can damage the small intestine) benefit from a gluten free diet (GFD). Few data are available to tell us if patients with inflammatory bowel diseases (IBD) may also benefit from this diet. Individuals with GI symptoms such as bloating, abdominal pain, diarrhea, fatigue and nausea can have non-celiac gluten sensitivity, for which a GFD can be beneficial. Non-celiac gluten sensitivity can also co-exist with IBD. We therefore asked patients enrolled in CCFA Partners whether they have ever tried a gluten free diet (GFD), whether they followed this diet closely, and whether it helped with any symptoms. A total of 1647 people took the survey on GFD. A total of 314 (19.1%) reported that they had ever tried a GFD and 135 (8.1%) were currently following the diet. Overall, 206/314 (65.6%) trying a GFD reported improvement in any GI symptom while on this diet. Over a 1/3 of people (38.3%) felt that they experienced fewer or less severe flares while on the diet. Improvements in clinical symptoms were reported for bloating (56.5%), diarrhea (42.6%), abdominal pain (41.5%), fatigue (27.5%), and nausea (26.3%) while on a GFD. Fatigue was significantly improved with excellent adherence to the diet. Because many patients had improved symptoms on the GFD, it is possible that patients with IBD could suffer from non-celiac gluten sensitivity. Fewer people who felt better on a GFD were taking biologics medications, suggesting that flare symptoms in those with more severe disease may not respond to a GFD. Future studies are needed to understand the benefits of this diet in IBD patients, and the mechanism of improvement with this dietary intervention.

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.

In a study of over 300 women with inflammatory bowel disease who reported at least one pregnancy after their IBD diagnosis, more than half reported that their disease symptoms improved during pregnancy, while about 20% said that their disease symptoms were worse during pregnancy. Younger women and women with ulcerative colitis were more likely to have increased disease symptoms during pregnancy. Of the nearly 200 women who breastfed, 14% said that symptoms improved, 13% said symptoms got worse and about 40% said their symptoms did not change during breastfeeding Those with worsening symptoms during breastfeeding were younger and had a lower body mass index than those whose symptoms remained the same or improved.

In a study of over 1200 females with inflammatory bowel disease, or IBD, more than half reported worsening disease symptoms during menstrual periods. Women who reported worse symptoms during menses were younger than those who did not. About 10% said that hormonal contraceptive agents improved their symptoms, but about 8% said that hormonal contraceptive agents made their symptoms worse. Among women who had reached menopause, an older age of IBD onset was associated with worse symptoms after menopause. This study shows that symptom severity is influenced during times of hormone changes in many women with IBD and that duration of IBD may play a role in hormonally mediated symptoms.

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.