When IBD patients start taking a new medication, it can be hard to know if it will finally be the medication to help achieve remission, or if the side effects will impact sleep, social life, and ability to work. Over 400 IBD Partners participants took part in the COMPARE study to compare the effects of Entyvio vs. Stelara for Crohn's disease and Entyvio vs. Xeljanz for ulcerative colitis. Our patient partners identified fatigue and pain as outcomes of particular interest for this research to focus on.

For Crohn's disease, the study showed that there were no significant differences in the way Entyvio and Stelara affected patients' fatigue levels or the way pain impacted their lives. The results were similar for most other measures as well, although Stelara was associated with lower steroid use and more patients discontinued Entyvio.

For ulcerative colitis, study participants using Xeljanz experienced less pain as compared to participants using Entyvio. There were no significant differences in fatigue or other outcomes.

The results suggest that for both Crohn's disease and ulcerative colitis, patients generally function similarly with either medication. Patients and their physicians need to consider many factors that may influence which medication is right for them.

Full Published Manuscript for Crohn's Disease

Full Published Manuscript for Ulcerative Colitis

Some medications for IBD suppress the body's immune system and can therefore increase the chance of getting sick. The goal of this study was to learn whether taking IBD medication increased the chance of getting COVID-19 infection.
The study included data from 3,953 adults with IBD, from IBD Partners and two other Crohn's & Colitis Foundation studies.
The data showed that immunosuppressive medication did not increase the risk of developing COVID-19.

Research Summary

Self-determination theory (SDT) is a theory of motivation that presumes that humans have three basic psychological needs-autonomy, competence, and relatedness. Each of these needs impacts one's motivation to adhere to a medical regimen. For example, this might mean choosing to take prescribed medications (autonomy), having the mastery to take the medication correctly (competence), and having quality relationships to support those skills (relatedness).

Past research has examined whether SDT can be applied to a variety of health issues, such as asthma, diabetes, and quitting smoking. However, no studies to date have examined this theory in people with ulcerative colitis (UC). Dr. Dasharathy used data from IBD Partners to better understand adherence to oral medications in people with UC, and how this relates to stress, motivation, competence, and relationships with health care providers.

Learn more about this study on our blog.

In this initial sample, 300 of 317 participants (95%) had detectable anti-spike antibodies after completing their COVID vaccine series indicating that the vast majority of patients with IBD mount an immune response following complete immunization.

Antibody responses were relatively similar across IBD medication classes, although slightly decreased among individuals taking steroid medications such as prednisone.

Although many questions remain and ongoing research efforts will help to further optimize immunization strategies for patients with IBD, these findings provide reassurance that most patients mount detectable humoral immune response to mRNA vaccinations and support current recommendations to vaccinate patients regardless of immunosuppressive treatment.

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.

Diet may be an important factor in the development and progression of IBD. A previous study demonstrated that patients with ulcerative colitis were more likely to flare with increased consumption of red and processed meats. We sought to examine whether increased consumption of red and processed meats was associated with Crohn's disease (CD) flares. To do this, adults with CD were recruited from IBD Partners. Patients who were in remission were randomly assigned to groups that consumed a minimum of 2 servings/week of red or processed meat (118 patients) or not more than 1 serving per month (96 patients) for 49 weeks. The primar y outcome was relapse of CD, defined as increase in short Crohn's Disease Activity Index or a need for surgery or a need for new medication. During the trial, patients in the high-meat group reported compliance with eating 2 or more servings of red or processed meat during 98.5% of weeks compared to 18.8% of weeks for the low-meat group. In an analysis of data from the FACES trial, we found that among patients with CD in remission, amount of red and processed meat consumption was not associated with risk of flare.

IBD commonly affects men and women during their reproductive ages. Because of this, researchers are interested in knowing how the disease affects fertility and pregnancy. Much research on the impact of IBD on fertility and pregnancy has focused on women, but for this study, researchers focused on men. They wanted to know how men's IBD and their use of IBD medication affect reproductive outcomes. The study results showed that men who received a diagnosis of IBD before trying to conceive were more likely to have difficulty conceiving than men who developed IBD after conceiving. However, these fi ndings were noted only in those with recently active disease within the past 6 months. Men with IBD who were in long-term remission were similar to the rates prior to development of IBD. Exposure to any of the medications for treating IBD was not associated with congenital anomalies, low birth weight or preterm births.

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.

Variation in care of patients with Crohn's disease (CD) and ulcerative colitis (UC) has been used as a marker for quality differences. We studied whether important aspects of IBD patients' care in CCFA Partners varied based on where their GI doctor was in practice. We compared patients who saw an academic (university) GI physician, a private practice GI physician, or other GI physician (such as a Veteran's Affairs physician). The study included about 12,000 IBD patients. Almost 95% reported visiting a GI provider at least once a year: about 74% saw a private practice physician, 15% academic, and 11% other. Those patients with CD seen by academic physicians were younger, has completed higher education, used less mesalamine medications, and used more biologics and immunomodulators. They were more likely to be in remission, were more likely to get a flu shot, smoked less, and were less likely to be on steroids when compared to private or other physicians. Patients with UC seen by academic providers were younger, had more hospitalizations and surgery, with greater biologic and immunomodulator use. There was no difference in steroid use, and no differences in any of the other measures like remission rates, flu shot, quality of life. In summary, there was much more variation in CD care as compared to UC care, with improved outcomes for CD patients seen by academic providers. Studying why this is the case, could help us to improve the quality of care delivered to all IBD patients.

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.

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.

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.

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.

Treatment for inflammatory bowel disease, or IBD, puts patients at risk of other infections, like influenza or the "flu", which could be prevented by vaccines. In a study of nearly 1000 patients with IBD, not enough said they were getting the vaccines they needed. Patients with a primary care physician and those taking immunosuppressive medications were more likely to get vaccines. The researchers recommend educating patients and encouraging gastroenterologists to ask and counsel patients on vaccines.

It is recommended that patients with inflammatory bowel disease, or IBD, get an influenza, or "flu" vaccine every year. The flu vaccine is especially important for patients taking medication to suppress their immune system. This study showed that 1 in 3 IBD patients did not get a flu vaccine in 2011. Receiving an email reminder from the CCFA Partners program did not make patients more likely to get a flu vaccine.

In a survey of over 7000 patients with inflammatory bowel disease, or IBD, more than half of all patients got a low score on medication adherence questions, which means that most patients are not taking their IBD medications correctly all of the time. In general, people felt better when they had a high medication adherence score. The researchers recommend educating patients to improve medication adherence.

Patients with inflammatory bowel disease, or IBD, may be more likely to develop weak bones, infections like influenza and tuberculosis and certain cancers of the skin, cervix and colon, depending on the type of medications they use. Fortunately, there are simple activities that can prevent these from occurring. In a survey of over 7000 patients with IBD, only about half had a bone density scan or took calcium or vitamin D supplements to promote bone health. Only 40% reported having a skin exam and 16% reported always wearing sunscreen to prevent skin cancer. Less than two thirds had an influenza (flu) vaccine. These results show that not enough patients are doing simple activities to prevent weak bones, infections and cancers that may be related to IBD.