I started experiencing symptoms of ulcerative colitis when I was 11. At that age, I couldn’t imagine what it could be, but my father definitely did. I didn’t know it at the time, but my dad had been living with ulcerative colitis since he was in his 20s.

Adolescence is the worst time to have to deal with a disease like ulcerative colitis. It’s not a disease you want to talk about, and I suffered in silence. Food was the enemy to me and I became extremely thin. And, unfortunately, the medications weren’t great at the time.

Like my father, I really kept my disease hidden for a good part of my adult life. What personally changed for me was when my son, Aaron, was diagnosed at age two and a half. That was really devastating for me because I knew what was in front of him because I’ve been there. I knew I wanted to provide my son with as much support as I could. That was when I became more open about my disease, and surprisingly people were very understanding and supportive.

Shortly after Aaron was diagnosed, my wife and I became active with the Crohn’s & Colitis Foundation. She attended education events and came back with information about the disease, current treatments, and new treatments that would be coming out. It was actually fascinating to see that there were much more information and programs out there than there were for me.

When Aaron was older, we learned about Camp Oasis, which I was very excited about, but like most kids he didn’t know at first if he wanted to go. It turned out to be transformational for him. He attended for ten years and made many deep friendships.

The Foundation has driven research and development opportunities that have changed our lives. There are so many more treatments available for me and my son than there were for my father. Aaron spent his childhood in the hospital at least once a year and couldn’t do much. Thanks to new medications, he was able to start gymnastics and today he is a nationally ranked gymnast.

The Foundation has given us a community which is huge for many of us dealing with this disease. The number one thing the Foundation has given us is hope for my son and not just him but for all kids and adults living with IBD.

The Crohn’s & Colitis Foundation is dedicated to finding cures for Crohn’s disease and ulcerative colitis, known collectively as inflammatory bowel disease (IBD), and we’re as committed to investing in research and programs designed to improve the quality of life of patients and help them achieve remission. Patient needs are our top priority when we set our research agenda and allocate our funding. In 2021, more than 200 research projects were funded by the Foundation.

We are investing in research to understand more about the chronic abdominal pain patients live with, harnessing the power of stress management, and understanding how diet influences both symptoms and disease activity.

Up to 50% of people with IBD struggle with abdominal pain that’s chronic, meaning that it lasts for three months or longer. Sometimes, the pain persists even when there’s no evidence of intestinal inflammation visible during an endoscopy.

To solve the mystery of what’s causing such pain, and explore effective remedies to alleviate it, we launched the Chronic Pain in IBD Initiative. To kick off the initiative, we held a workshop that enabled patients, gastroenterologists, neurobiologists, and pain specialists to connect, share experiences, and identify key research gaps. We then solicited research proposals from scientific investigators worldwide and, early this year, awarded three three-year grants of up to $900,000 each.

We are now supporting important new pain-related research at Johns Hopkins University in Baltimore, Maryland; Queen Mary University of London in the United Kingdom; and McMaster University in Canada.

Patients often report that psychological stress contributes to worsened physical symptoms. We are working to understand exactly how the two are connected as well as pinpoint which patients are most likely to benefit from specific stress-management techniques.

We are currently funding research at the University of Alabama at Birmingham that aims to determine whether being exposed to high levels of stress in early childhood translates to more severe disease in preteens and teens with IBD.

At the University of California, Los Angeles, we are supporting scientists who have demonstrated that adult ulcerative colitis patients with high stress reactivity (meaning they exhibit a stronger reaction to stressors) are more prone to disease flares.

Outcomes of this research were published in the July issue of Clinical Gastroenterology and Hepatology. That group is now attempting to learn about the pathways by which gut bacteria might influence stress reactivity through the brain and vice versa.

Our Precision Nutrition Initiative aims to provide the knowledge needed so patients can tailor their diets, based on their unique biological, clinical, and lifestyle characteristics, to feel better and minimize their flares. This program was made possible through a generous donation from Johnathan D. Rose, MD, PhD, Chair, Crohn's & Colitis Foundation's Intestinal Pathology Research Program.

We are supporting precision nutrition research at the University of California, Los Angeles; the University of Calgary in Canada; the University of California, San Diego; and the University of Glasgow in Scotland. At Glasgow University, researchers are working to identify dietary triggers of flare after food reintroduction in children with Crohn’s disease who have reached remission on enteral nutrition (a liquid diet that’s provided via a feeding tube). They are also studying whether these children can remain in remission by transitioning to a solid diet plan called CD-TREAT.

In total, we are currently funding four clinical studies related to precision nutrition, an investment of over $3.6 million into research in this crucial area.

IBD Qorus^®, our flagship quality-of-care initiative, was founded in 2015 with the goal of improving the standards of care delivered to adults with IBD. What began as a simple idea — to promote shared decision-making between patients and their providers — has evolved into a nationwide collaboration of IBD healthcare providers tracking care delivery performance to foster the exchange of ideas and improve patient outcomes.

“IBD Qorus can be described as a think tank of physicians sharing and learning best practices from one another,” says Alandra Weaver, Associate Vice President, Clinical Quality & Research Innovation for the Crohn’s & Colitis Foundation. “Clinicians are gathering data while treating patients as part of their regular practice and then collectively reflecting on their experience and learning from each other.”

The benefits have been powerful. After analyzing patient data and engaging in brainstorming sessions, IBD Qorus clinicians devised an Urgent Care Toolkit as part of a comprehensive module within the collaborative, with support from The Leona M. and Harry B. Helmsley Charitable Trust. This straightforward guide, which emphasizes identifying patients who are at the highest risk for hospitalization and expanding urgent care appointment availability, has already led to a 22% decrease in emergency room visits, a 21% decrease in hospitalizations, and a 50% decrease in opioid use among patients in practices that have implemented it (reference).

Other IBD Qorus efforts include testing and adherence to a treat-to-target strategy as part of routine IBD care to improve remission rates; this research is being supported by a $6.3 million grant from the Patient-Centered Outcomes Research Institute (PCORI).

It’s not uncommon for people who are diagnosed with IBD to feel a sense of isolation and embarrassment, but it doesn’t have to be that way. Whether someone is newly diagnosed with Crohn’s disease or ulcerative colitis or has been struggling with it for some time, they will find a caring community when they participate in one or more of our many programs.

“The Foundation's education and support programs provide patients and caregivers with tools they can use to navigate their disease journey,” says Catherine A. Soto, Senior Director, Patient Education & Support. “When patients come to us seeking answers about their concerns or challenges, we want them to know they have come to a trusted space, where they can get the resources and answers they need.”

The Foundation offers support programs that span from local support groups to topic-specific Facebook groups that provide safe spaces for people who share similar backgrounds or experiences. We currently offer groups for those with fistulas, people who have a j-pouch, and veterans.

We also foster connection through Power of Two, our peer-to-peer mentoring program. Through this program, patients create a profile and then identify a match from a list of trained volunteers who are open to sharing their personal experience of living with Crohn’s disease or ulcerative colitis.

Our Crohn's & Colitis Community website also serves as a place where patients can engage and share experiences in a forum.

Empowering and educating people directly impacted by Crohn’s disease and ulcerative colitis is at the core of our mission. Every year, more than 12,000 personal connections are made though our IBD Help Center, which is available via phone (888.MY.GUT.PAIN), email ([email protected]), and live chat. Patients can turn to this resource for information, guidance on programs, support services, and much more.

Throughout the year, we host Facebook Live events, which can be viewed in real time or later on demand, covering topics such as urgency, complementary medicine, traveling with IBD, and the mind-gut connection. In total, we had more than 190,000 views of these video chats since 2021.

In addition, we now offer educational resources for veterans with IBD and Spanish speakers.

Through our MyIBD Learning programs, we educate and share the latest information on IBD treatments, research, and resources that can improve participants’ quality of life. Currently, we offer a combination of online and in-person regional programs that cover everything from disease basics and research and treatment updates to pregnancy and IBD, diet and nutrition, and the impact of IBD on mental health.

Our Spill Your Guts public service announcement (PSA) campaign — in English, and now, in Spanish as well — is educating the public about IBD and encouraging people with symptoms to seek help from a healthcare professional.

Our PSAs are airing on more than 150 TV stations across the U.S. We are also running a series of radio PSAs, including 30- and 60- second spots recorded by Peter Sagal, host of NPR’s “Wait-Wait-Don’t Tell Me,” in which he recounts his fondness for his beloved uncle who struggled with Crohn’s disease.

We proudly run Camp Oasis, our summer camp for children with IBD. Featuring outdoor adventures, land and water sports, and leadership training for older campers, the program is known for leaving a positive, indelible mark on those who participate.

“Our data shows 99% of campers report favorable outcomes from camp and close to 70% describe it as life-changing each year,” says Becky Johnson Rescola, Vice President, Education & Community Engagement.

In summer 2022, we were thrilled to re-open Camp Oasis as a residential experience after having to pivot to a virtual model earlier in the pandemic. We welcomed nearly 600 campers back in person and an additional 185 campers who participated in our virtual CampOasis@Home program.

Sometimes, food is medicine. That’s certainly the case for children with mild-to-moderate IBD who must be on a liquid formula diet (enteral nutrition) in order to let their gut heal and inflammation subside. Some adult IBD patients who are experiencing severe flares also use enteral nutrition because it works well for them without causing side effects. The problem: Insurance companies rarely pay for it for IBD patients.

The federal Medical Nutrition Equity Act would change that. If enacted into law, this bill would ensure that private insurance, Medicaid, and other payers are required to cover this medically-necessary therapy if it is prescribed for a patient with a digestive disease or an inherited metabolic disorder.

Enteral nutrition isn’t a supplement; it’s the person’s entire diet, says Cassie Ray, Director of Advocacy for the Crohn’s & Colitis Foundation. Generally, a pediatric patient who requires enteral nutrition will use it exclusively for 8-12 weeks, then transition to partial formula for up to six months. And the formula costs up to $80 per day.

To subsist entirely on enteral nutrition, patients may drink formula every hour or two, but that schedule is challenging as well as unappealing for someone with abdominal pain who has little appetite. In such cases, formula is best given through a nasogastric tube, which provides a slow and steady supply of it through the nose and into the stomach to assure adequate nutrition. However, since formulas are often sold over-the-counter, and because most patients are able to take some things orally, insurance companies often treat enteral nutrition like any other food or supplement rather than a medication.

Ensuring that everyone who needs enteral nutrition can access it is crucial, especially for growing children. “It increases weight gain, muscle mass, and bone health, while allowing them to achieve remission,” says Ray. “Sometimes, when families can’t afford the formula, physicians have to resort to giving the children steroids, biologic medications, or even surgery because they have to control the underlying inflammation.”

The Crohn’s & Colitis Foundation has been working since 2019 to get the Medical Nutrition Equity Act passed by Congress. From meeting with legislators, mobilizing volunteers, and literally knocking on doors, we won’t back down until all patients who would benefit from medical nutrition have access to it.

Help us achieve this important goal by sending a message to your legislators now.

In 2021 alone, the Crohn’s & Colitis Foundation invested $63 million in our mission, the most in Foundation history. Of this amount, more than $32 million was directed to 200+ research projects, bringing the number of projects we have supported since our inception to more than 2,500 and our total investment in research to almost half a billion dollars.

Download a print version of our 2022 Fall/Winter Impact Report here.

Previous Impact Reports and Annual Reports are available on our archive page. Learn more about our advancements in research, patient education and support, and access to care.

Read our past reports