Posted by Jon Moses on March 16, 2016
When our dietitian first approached our Rainbow Babies & Children’s Hospital IBD team about using Exclusive Enteral Nutrition (EEN) as treatment for patients with Crohn’s disease, we had our doubts. Could simply drinking formula really help a patient with Crohn’s disease get into remission? Thanks to strong encouragement from our dietitian, Nicole, and the lovely folks at Nationwide Children’s Hospital who shared their experience with us, we began developing a protocol for using EEN for the induction of remission in patients with Crohn’s disease.
Our participation in the ImproveCareNow Network really catalyzed the development of our EEN protocol, and thanks to our ability to “share seamlessly, steal shamelessly” with teams that were already using EEN our protocol was up and running by January 2015. However, as we began discussing EEN with patients and families, we realized it was hard for us to counsel them about the more practical aspects of this type of therapy (i.e., “should the formula be cold or warm?” and “what does 200 calories a day really look like?”). Our team felt strongly about the benefits of EEN as a treatment for Crohn’s disease but needed more understanding of real-world implications to truly counsel patients and families.
In order to improve our understanding of EEN and be better prepared to talk to patients and families about this therapy, we decided to do an EEN challenge. Taking a cue from the Michigan IBD team (@UMkidsIBD), our team began a one-week trial of EEN. Challengers replaced 90% of their daily calories with formula, and consumed only 10% (approximately 200 calories) as table food. When we started the challenge, our goal was to better understand the real-life implications of EEN, even if just for a short period of time. Nicole was gracious enough to develop dietary plans for each of our challengers, and a group text was started so we could support each other and share pictures of what we ate for our 10% each day.
Following the completion of our EEN challenge, the Rainbow Babies IBD team feels that we have more practical information to share with our patients and families, such as what temperature the formula should be before drinking, minor side effects that may occur (nausea, constipation, diarrhea), and quick tips for what they could eat for their 10% each day.
Our plan after this experience is to update the section on EEN in our IBD patient education handbook. We have already shared our experience with the rest of our GI department and it is our hope this will help them think about EEN as first-line therapy for Crohn’s disease. In addition, we feel that an NG tube should be strongly considered when EEN is started because it may be difficult for patients to drink all the necessary formula by mouth.
Although it was only for one week, we feel like our EEN Challenge gave us a chance to get a sense of what patients experience when they take on EEN as a therapy for Crohn’s disease and as a team we are better equipped to counsel patients and families than before the exercise.