Have you ever wondered if your doctor or member of your medical team would choose the same treatment they recommend to you? What if that treatment were difficult, like following a special diet?
For the past three years the Inflammatory Bowel Disease (IBD) Center at Nationwide Children’s Hospital has been working toward increasing the number of patients who use nutrition therapy as a treatment option for Crohn’s Disease; either for the short-term which is approximately three months, or for the long-term which could be indefinite.
Nutrition therapy as a treatment for Crohn’s Disease involves a diet of four to six liquid shakes per day and a small allotment of regular food - usually between 150-250 calories of food per day. This diet is as effective as steroids in inducing remission and has added benefits of intestinal healing, improved growth, no immune suppression and has little side effects.
Because the nature of this treatment can be difficult, the dietitians in the GI department began exploring, not only how to help patients be successful, but how we could better understand their challenges.
In 2013 the entire IBD team did Nutrition Therapy for 24 hours to understand the patient experience and we all found it very helpful. We learned what flavors of shakes we liked (and did not like) and got an appreciation for what our patients do. Fast forward to 2016, the dietitians were looking to raise money for the CCFA (Crohn’s and Colitis Foundation of America) and decided to take the 24 hour Nutrition Therapy experience to another level. We challenged coworkers, friends, and family to sponsor us for every day of Nutrition Therapy completed, up to seven days. We raised almost $3000 for the CCFA!
Beyond the fundraising, we learned so much about what patients encounter from day-to-day. One of those lessons includes finding ways to change the flavor of the shakes (freezing, adding flavor extracts, etc.). We had been working on a low-calorie cookbook for patients on Nutrition Therapy and we thought it was finalized before our 7-day challenge. Our experience made us change the entire book. All of the recipes were revamped (calories were lowered), 25 recipes were added, and new sections were included in the cookbook.
The most important lesson was that the sharing of ideas, photos, and words of encouragement was a huge factor to our success. Knowing someone else was going through the same thing normalized the experience and having someone to talk to gave us ideas we may not have thought about.
We may only see or talk to our Nutrition Therapy patients a few times during their 12-week treatment and we wanted to do more. We now have a private social media account where members are encouraged to share food and recipe ideas, photos, and thoughts of life while on Nutrition Therapy. We now can connect with parents and patients several times a week and we hope the extra support makes Nutrition Therapy easier. We are so proud of what our patients do and we hope that our experience will help them be successful.
Not everyone with Crohn’s Disease is a candidate for Nutrition Therapy, but it could be an option for many patients and should be discussed as a treatment option with your Gastroenterologist. For more information on Nationwide Children’s Inflammatory Bowel Disease Center, click here.