Posted by Haley Neef on January 29, 2016
“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).
I continued reading the email to get the details. It would be an honors-system competition; whoever made it the longest on supplemental drinks alone would win. You could earn a bonus day by having a nasogastric (NG) feeding tube placed, even if only for a short period of time, because many kids actually learn to place their own NG tubes to receive feeds. Clear liquids like broth and popsicles were allowed as long as they didn’t add up to more than 10% of daily caloric goals. Participants would have to buy their own formula, because cost is often a limiting factor for families, so that we could appreciate the financial barriers to EEN. Any formula was allowed, and participants were encouraged to try a variety. The email included several options of formulas, where to purchase them, and guidelines for how many the average woman or man would need to drink on a daily basis. A mysterious “spectacular prize” was promised to the winner.
Because I am at heart a quality improvement geek, my first thought was what a terrific idea this was. If we as caregivers can understand firsthand what a therapy is like for our kids, especially something like EEN which involves a total lifestyle shift, we can help design a better program that anticipates the challenges our patients may face. There is good medical evidence to support that exclusive or nearly-exclusive enteral nutrition (drinking or tube feeds of formula) can induce remission for some patients with Crohn’s disease, which may spare the need for steroids and their associated side effects. What a neat experiment this would be to help create a patient-friendly enteral nutrition process at our IBD program.
My second thought was that I wanted to WIN. Because although I may be QI geek, I also happen to be somewhat (ok, really) competitive. After all, QI and competition go hand-in-hand… I pretty much always figure we can find ways to do better! But I hesitated…could I actually beat a dietician at her own game?
I was born and raised in the Midwest. It is hard enough professionally as a GI doc to fight the uphill battle against childhood fatty liver disease and counsel celiac patients on a gluten-free diet here. And personally, I happen to really like food. As I write this, snow is falling outside and I am actively trying to convince myself that yoga class would be a superior choice to staying indoors and snacking on some delicious glutens. Lacy, our dietician, is the type of person who brings tiny adorable Mason jars full of raw almonds and freshly sliced multi-colored bell peppers for lunch. She’s the type of person who comes to work with a unique and elaborate Pinterest-worthy braid every day of the week. She is disciplined, organized, healthy, and motivated- exactly the type of person who would be a front runner in this EEN challenge for sure. She also runs with me after clinic and so I happen to know she’s a bit competitive as well (she kicks my butt on a regular basis).
Ten caregivers, including fellows, nurses, attendings, and of course our dietician, signed up for the EEN challenge, which started on a Monday. I also happened to be starting on service that day. Like most days on service, the day flew by. As usual, I skipped breakfast and actually was happy to slurp down a Strawberry Boost in the middle of the day- normally I would have skipped lunch entirely due to the busy day. It tasted like strawberry Quik and went down pretty smooth, even at room temperature.
My fellow, Tina, was also participating and had forgotten to go shopping for her formula. Therefore she had broth for lunch. She declined my offer of one of my own shakes. She was looking a little green around the gills by the end of the day and said she felt pretty weak. I instructed her to chug a Carnation and took off to the gym. It hit me five minutes into my cardio burn class that I felt really and truly awful. My legs were heavy, I was weirdly sweaty, and had a headache by the second set of push-ups. I realized I’d only had one 350 calorie shake all day long.
Lesson #1 about exclusive enteral nutrition- you have to plan ahead! If a kid usually skips breakfast (like me—setting a bad example, I know) and typically makes up for it with lunch and snacks during the day, that’s just not an option with EEN. Let’s say they feel uncomfortable drinking their Boost in the cafeteria or forges to pack the right amount- they will pay the price and feel terrible at school or during after-school activities. EEN takes responsibility and planning, something that even as so-called responsible adults, both Tina and I failed at on day 1 of the challenge.
On day 2 of the challenge, I decided to have my nurse Malerie drop an NG tube for me to go after those bonus points. I had an audience of at least 4, likely because the spectacle of an attending retching and sneezing simultaneously as a plastic tube gets shoved down her nose is Snapchat gold. Malerie tried twice and couldn’t get the tube past my nasal cavity into my pharynx. This felt almost exactly what you might imagine a popsicle stick being shoved repeatedly into your sinus would feel like. Our other nurse Jamie took a crack at me next and was able to get it over my nose hump (a technical term?) down to the back of my throat, at which point it took everything I had not to vomit. Lacy nervously placed a trash can in my splash zone. Jamie advanced it to 50 cm as planned and I took a few deep breaths, waiting for the sensation to pass. It took a good 3 minutes before I wasn’t retching. Needless to say, the awesome little kids on YouTube who cheerily pass their own NG tubes were my official heroes. Malerie gave me a bolus feed of Boost and I took the tube out myself while repeatedly sneezing.
By mid-week I had sampled at least four different types of supplements and they were all starting to taste medicinal. I craved crunch and texture. Lacy, creative dietician that she is, suggested blending formula with ice and eating with a spoon. Believe me when I say that Ensure over ice chips might crunch when you chew it, but it’s not nearly as satisfying as a salt-and-vinegar potato chip. I was doing a better job getting in the calories I needed, but I still felt hungry. We all agreed that we were really missing color, flavor, and texture variation. Lesson #2 of the EEN challenge was sinking in- hunger is a lot more complex than just the physical need for calories. We eat to feed our minds and our souls, not just our bodies. It is so challenging to feel satisfied without variation in what we eat.
My friend asked me to join her out for dinner on Thursday and I decided to stay in, knowing how odd it would look to have to whip out a Carnation at the restaurant and not order anything. I felt a little sorry for myself and lonely, so I texted Lacy and Malerie, who agreed with my sentiment. Malerie had gone to her weekly family Taco Tuesday and sipped Boost on ice out at the restaurant (not sure if she went for a salty rim or not). Lacy was feeling a little lost for things to do after work because she enjoys cooking dinner for her husband most nights of the week. She was pondering taking up coloring books.
Lesson #3 of the EEN challenge: drinking formula can make you feel self-conscious in a lot of social situations and in my case, was affecting my social life. There’s not a lot of medications that can make you feel sad or lonely as a side effect, but EEN definitely poses that challenge. A EEN program needs to offer pro-active psychological support for kids because our social existence often revolves around food. I found myself reaching out to my friends also doing the challenge to commiserate and it helped to have their support and hear their ideas. Lacy brainstormed how neat it would be to create an app that kids could use to network with each other while doing EEN and earn points, badges, or prizes for successes.
On Thursday, a few more competitors made attempts at NG placement. One of our fellows, Katie, passed it successfully on her own (rockstar!). Another fellow, Malerie, and Lacy all were unable to tolerate multiple attempts and found it incredibly uncomfortable. Just watching the attempts made me gag a little in sympathy.
By Friday morning, everyone had thrown in the towel except for me. Lacy had scrambled eggs for breakfast and looked pretty perky strolling into work. We had both made it four days straight, and I had my bonus day from the NG placement, so I had actually won the competition! I inquired about my prize. Lacy and Malerie informed me that the prize would be that I could have their leftover Boost and Ensure… disappointing. I felt my first solid food in 4 days was prize enough, though—a bag of salt and vinegar potato chips that tasted like EXACTLY what Caribbean cruise in the middle of February in Michigan feels like.
When all was said and done I really didn’t feel as if I deserved a prize… I had only made it 4 days after all, and most kids who successfully complete a steroid-sparing stretch of EEN do it for six weeks or more! Thanks to the EEN Challenge, I am ready to work with my team of awesome, dedicated IBD caregivers to create a patient-centered process for our kids with IBD, anticipating the challenges and creating tools to help them overcome these. Even for those kids that try and only make it four days—I will celebrate that as a huge success knowing that in addition to the challenge of living with IBD so many kids face with bravery, voluntarily taking on exclusive enteral nutrition is a hero’s job.