Nutrition | LOOP

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. Continue reading →

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.”

Before I share what happened during this 24 hour experiment, I’d like to recognize that this small exercise is absolutely nothing compared to waking up every day and remembering, “Okay, I’ve got Crohn’s, so…” before a patient does his or her planning for the day, perhaps including organizing medications, or clearing activities for Remicade infusion. No one had to look at their poop and think “this is Bristol #…” or remind themselves to mark how many days they’ve had blood, of any kind, in a stool. The five randomly chosen winners (plus one volunteer) of our first Community Conference Liquid Lottery embarked on this exercise with humility, and finished humbly noting that 24 hours is nothing compared to 168 hours, or more, of drinking liquid nutrition.

But it was hard enough.

Here are some things I heard the night before:

“Oh! It’s just 24 hours? I thought it was the whole weekend.”

“I can drink other liquids, right? I just can’t eat at the meals? This will be easy!”

“I can’t eat at the dinner tomorrow night? Well, it’s just one fancy meal, I can give that up!”

Here are some things I heard at lunchtime the next day (just two meals later):

“Well, I finish a lot faster than you, and it kind of leaves me feeling empty sooner, but I’m all right!” (stares at the still-half-full plate of friend across the table).

“I feel like I’m already losing weight! But I couldn’t do this long-term. Glad it’s just 24 hours.”

“I am already kinda getting sick of this taste” (after two meals). It’s over tonight, right?”

And here is what I heard at 7:10pm (repeated by others, not much later):

“You said 24 hours, right? So, it would be okay if I had something now at the dinner, wouldn’t it?”

“It’s just that this is the last big meal and I really think I’ve learned the lesson from this experiment, so, thanks!”

Read real observations by Liquid Lottery winner – Erin Moore – in her post 24hr liquid diet challenge at #icncc16s on Storify

It would be difficult to have IBD, from my perspective. Not that life can’t be fulfilling, and our friends with IBD can’t cope, can’t adapt, can’t find a terrific quality of life and achieve their goals. And it’s not that every patient with IBD is alone and isolated. There are terrific places where patients and families can share experiences and find solidarity between themselves and other patients and families.

But we, the eaters, the healthy IBD team members who care for them, encourage them, try to help them move forward, might be more motivated in our work if we appreciated their position, and ours, more. The old maxim “Walk a mile in someone’s shoes,” comes to mind. “Really, I say? A mile? Okay! Oh, wow – I see what you mean, this is difficult. But… my friends are playing basketball outside, so how about I wear them to the door of the building and then put my Chucks back on?”

It’s hard. No question. I applaud all the lottery winners for even being willing to try to only drink for 24 hours.

Next Community Conference, I would ask you to come ready to talk to your colleagues who have completed a liquid challenge like this for a week, or who dropped their own NG tubes, or who wore ostomy bags to get a small glimpse into what life with these treatments may be like. Because we’re better able to improve care and health when we work together. By sharing experiences we grow compassion, creative thinking and, best of all, motivation to work harder for and with our patients so they can get better and back to doing the things that matter most to them.