IBD & Diet: A Patient-Generated Research Study

As told by Andrea Meyer

I was diagnosed with Crohn’s disease more than 15 years ago. Prior to my diagnosis, I struggled with bouts of abdominal pain, fatigue, weight loss, and loss of appetite. Once diagnosed, I worked very closely with my doctors to establish ways to manage my disease as best we could. I have been on every “grade” of medicine on the market – achieving results for some time period on each – but, ultimately, decided to take a different approach incorporating functional medicine that I felt would be best for me.

Having always taken an active role in my healthcare, I decided many years ago to also get involved in efforts to help others. I became very active with my local CCFA chapter and have been a part of really amazing programs like Team Challenge, Take Steps, and Camp Oasis. I continue to run a local support group for IBD patients and their loved ones, as well.

When CCFA released its CCFA Partners patient-powered research network, I was very excited. I love the idea that healthcare should be a group effort, with the patient leading the way. CCFA Partners perfectly supports this idea - it is a platform that allows patients to both contribute to research and receive assistance in a way that promotes collective learning and sharing.

What particularly interested me in CCFA Partners was the opportunity for patients to submit research study questions that they feel are relevant and important. Many of these questions, I am happy to say, have grabbed the attention of people who can really make a difference. One question of particular interest to me was one focused on dietary modifications in helping to manage IBD symptoms. Not surprisingly, this question was extremely popular on CCFA Partners and, as a result, was recently selected and built into a research study funded by the Patient-Centered Outcomes Research Institute and led by Dr. James Lewis of the University of Pennsylvania.

This study will take a deeper dive into the role that diet plays related to IBD; specifically, looking at the specific carbohydrate diet and Mediterranean-style diet and its ability to manage Crohn’s symptoms and induce remission. The best part about this study is the heavy patient involvement. I am one of a few patients serving on the research team organizing the study and who will be managing its life cycle.

This study shows how powerful the patient voice is. We can all have an impact on IBD research if we use our voices. I hope that more patients will become a part of CCFA Partners so that more data can be collected, and more questions can be answered!

To join CCFA Partners or to read more about the study, please visit: www.ccfapartners.org