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.

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.

Why do we ask questions?

As a Learning Health System, ImproveCareNow is actively listening and really values the input, ideas and experiences that community members have to share. They actually help us do better. Recently we asked community members to share an enteral nutrition (EEN) experience (if you had one) and we heard back from three people. We were able to share their stories here on LOOP, which led to more discussion, sharing and learning about EEN.

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.”

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:

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.

When my son was diagnosed with Crohn’s Disease in 2014, he was 10 years old.  I knew something was terribly wrong with him for a long while but had to wait many months to see a GI. By the time he was diagnosed, he had lost so much weight, could not eat and was a skeleton of his former self both physically and emotionally. Long days in the hospital were spent researching every treatment modality from every country that published scientific papers. I was told that he had to go on steroids for the short term until other medications could begin their work. Somehow, my gut told me that this was only part of the treatment story. Instead, I asked repeatedly about enteral nutrition. I was told that it would not work. The Dr. even drew out a graph for me on a smudged white board.  I kept asking “why does it not work in the U.S when it works in other countries?” The doctor avoided answering me directly but, eventually conceded that Americans like to eat and prefer to take pills. O.K., now that is a real answer!

My son was on EEN for about 5 weeks then switched to about 80% EN, 20% food. This was 4 years ago when he was 11 years old. We live in Los Angeles, and we did not have a lot of support when we started. I hope care teams realize how hard it is in the beginning but it does get easier. Patients and their families need a lot of support from figuring out where to get the supplies, how to work the equipment and most importantly help for the child in placing the NG tube. The best thing would be to have the family connect with another family who is already using EEN.

My son just re-started EEN less than a week ago. It is his 3rd time using this to reduce his inflammation; he is now 5 years old. One thing I wish is that people could advise on the management of tube feeding at school; nobody seems to know about how this is managed in mainstream school. I also wish they understood the need for speed! Equipment deliveries, training for schools, pumps rather than gravity feeds….

I also wish all care givers understood how beneficial this can be as not everyone recognizes the positive effect EEN can have.

[Editor’s note: We asked our community to share their stories of Exclusive Enteral Nutrition (EEN) and what they wished people understood about it. We received three stories; this is one of them.]

If you want to get the basics on Enteral Therapy as a treatment for Crohn’s disease, check out this repost of a 2014 blog by Jen Smith of Nationwide Children’s. If you’re interested in learning more about how ImproveCareNow team members are experiencing Exclusive Enteral Nutrition for themselves – to better understand some of the challenges and opportunities – you might want to consider following @JonMosesMD, @HaleyNeef and @UMkidsIBD on Twitter. Also, please follow us here on LOOP, where we’ll continue the conversation by sharing EEN stories from teams and community members, and highlighting co-produced tools support systems for EEN.