ImproveCareNow EEN

Patient Perspectives: Nutrition & IBD – a New Resource for Patients by Patients

My name is Maddie. I am a member of the Patient Advisory Council (PAC) and a contributor to the PAC’s latest IBD Resource – Patient Perspectives: Nutrition & IBD. This booklet is very important to me and the other contributors who have used nutritional interventions to treat and manage their IBD.

Nutrition is an important part of life and for IBD patients it can play an essential role in overall health. Nutrition can be used as a primary treatment, as well as secondary or complimentary treatment, which can support overall well-being. Sharing our experiences with nutritional interventions helps us raise awareness of how nutrition fits into real-life IBD treatment and management. It allows us to offer support and reassurance to other patients who are making decisions about or coping with nutritional interventions – that they are not alone.

Sustenance, for a healthy life

My name is Maddie. I am 16 years old and I have Crohn’s disease (CD). I have used nutritional therapy as a primary treatment for my Crohn’s disease since my diagnosis at the age of 13. Nutritional therapy has changed my life – both my health and my relationship with food.

Personal experience with nutritional interventions

On June 5, 2017, my single, overweight suitcase and I boarded a plane flying from Miami to London Heathrow. Over the course of the next six months, I shadowed and worked with the IBD Team at Great Ormond Street Hospital, a tertiary children’s hospital in the center of London. As a Political Science major who intends to go into medicine, the opportunity to study how IBD patients were being cared for under the UK’s health system was too enticing.

A little experiment in drinking

So, a few weeks ago, at the Spring Community Conference, I ran an experiment (with a little help from my friends). The goal was to get conference-goers to commit to 24 hours of experiencing one – single – lifestyle change that some patients with IBD face when trying to get their guts to “quiet down.”  I invited them (after doing it myself) to replace their daily meals with liquid nutrition, while continuing with business as usual (attending a professional conference, where many were looking forward to a nice meal with their colleagues and friends on Friday evening). Further, I challenged them to spend meal and snack times interacting with others at the conference, who I like to refer to as “eaters.”

Cincinnati Children’s EEN Challenge


About 12 of us participated in the Cincinnati Children’s enteral nutrition challenge – including physicians, nurses, and medical assistants.

Here is a summary of what we observed:

Rainbow Babies & Children’s Hospital’s EEN Challenge


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.

EEN Challenge


“Congratulations! YOU have been selected to participate in the Exclusive Enteral Nutrition (EEN) Challenge!”…

…raved the email sent to me by our GI dietician Lacy and our GI nurse, Malerie. Feeling as if I’d been invited into a secret society, I read on. Inspired by other pediatric IBD groups with well-organized enteral nutrition therapy programs for pediatric inflammatory bowel disease (IBD), Lacy and Malerie were challenging our GI division at C.S. Mott Children’s Hospital to experience what it would be like to exist on an all-formula diet in the great state of Michigan, where a good percentage of social activities revolve around cheese and/ or fried food (not uncommonly, fried cheese).

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