LOOP Blog

Dating, especially in the early stages, is full of emotion…excitement and nervousness are sure to abound. However, with IBD patients, there’s a bit more hiding beneath the surface that the other person usually does not yet know about. How do you tell your significant other about IBD? How does one explain something so complicated? How do you work it into conversation? When is the right time? One of our new PAC members, Samara, recently started dating and has personal experience to share.

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!

When your child gets diagnosed with a chronic disease like Inflammatory Bowel Disease, the world becomes very overwhelming in a flash. Prior to the diagnosis, the words “Crohn’s disease” or “Ulcerative Colitis” mean absolutely nothing to patients and their families. During my journey, I have asked parents and patients about their memories of the moment at which they were diagnosed and the comments are usually similar: I had no idea how the diagnosis would change our lives. I have a husband and two kids diagnosed with Crohn’s. I have to say that each diagnosis was overwhelming in its own way. You would think that by the third diagnosis, I could handle it but it wasn’t any less overwhelming than the first. I knew too much. I feared too much. I now worried about them having simultaneous flare-ups.

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.]

ImproveCareNow big data is thousands of little stories about children with Crohn’s disease and ulcerative colitis. Since 2007, the clinical remission rate of these children has increased from 55% to 78%–thousands more kids able to attend school regularly, play sports, do overnights with friends and be much happier.

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.

“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).