LOOP Blog

 

Dr. Chris Forrest of the Children's Hospital of Philadelphia Research Institute has described ImproveCareNow as the leading learning health system for children.

Thank you!

I was standing in a dimly lit ballroom, full of researchers in their weekend clothes, eating celery when I saw her coming towards me. Her being my friend and fellow PACer Sami, a backpack on and a big bag over one shoulder, a wide grin breaking on her face. We ran at each like you see in those slow-motion movie scenes, met each other in a big hug, then, smiling at one another, introduced ourselves in person for the first time. This is the funny thing about gutsy people meeting - we know each other in a way that others don’t, even though we’d never met face to face. And just like that, it was a gutsy friendship at first sight.

We were abuzz with excitement in the nerdiest way - surrounded by researchers and GIs - we couldn’t keep from smiling at the scene. The ImproveCareNow Learning Session was completely novel to me in how Sami and I, as the two C3N Project patient scholars, were included in a conference designed for researchers. It was sort of like looking over the fence into someone else’s backyard, and all of the researchers were more than welcoming and excited to have us there. In case it is not abundantly clear by the end of this post, I am a huge researcher groupie - like huge, I was geeking out the whole time - and was so thrilled to be a part of the Learning Session.

Sami and I begrudgingly discovered that we had been given individual rooms - a thought which would likely please someone else but not us - so we decided to remedy the situation and move her things into my room (because it would have been a tragedy to have lost bonding time!). The first night we stayed up way past our bedtimes sharing stories and showing off the things we had brought to put on our storyboards. Finally by 1:30 AM, we conceded that it was probably time to go to sleep since we had to rouse ourselves at 6 AM, so we climbed under the covers and said good-night.

Saturday was filled with so many incredible things that it’s hard to recount them all, for any words I pick cannot accurately describe my enthusiasm or the entire experience. Having been given access to the Twitter account so we could send real-time updates, I became (even more of a) Twitter addict, tweeting everything from that first breakfast (Chicago was so ready for me with all of the bananas!) to quotes during the opening remarks. As someone who has IBD, it was really humbling and phenomenal to see all of these dedicated researchers and doctors working to improve care in pediatric IBD. I have found myself over the years struggling to establish medical legitimacy for my disease, and yet amongst this group, everyone understood, encouraged, and believed in youth with IBD - it was unbelievable.

We got to attend a session with parents and it is something I will never forget. Their faces were bright with enthusiasm, their children so young and hopeful, but their futures unsure. There was relief in their faces when they saw me and the other patients - knowing that their own kids with IBD would be okay and happy and smiling and at school and living life. I had never thought of my parents in that way before - the uncertainty, the fear, the love for their children - and I was incredibly touched by their compassion and insight into what it is like when your child has IBD.

The patients and parents had set up storyboards on the periphery of the conference room, and I would peruse them with Sami at my side, the two of us falling in love with all of the children. There is something odd and unnameable about looking at a child and knowing some of the IBD challenges in his or her future - those nights when there’s nothing to do but cry, days in the hospital falling asleep to daytime television, and times when the very thought of leaving the house seems impossible. But I know too that there will be moments - bigger and greater than the moments of pain - where the world will open right up for these kids and they’ll be unstoppable. I wish I had met them in person - but that can be my next trip to meet my little IBD crushes.

For the last day of the conference, Sami and I had been asked to choose our ‘IBD theme song’. On Saturday night, Sami and I laid on our bed, exchanging song options until we had found the perfect ones. The big reveal of our IBD-theme-song-extravaganza had been saved for the very last part of the conference, and we handed over the songs on a USB stick.  But when it came time to announce the songs, instead they called Sami and I to the podium. We got up and began to laugh nervously as we threaded our way through the sea of chairs and tables. Sami went first and played ‘The Fighter’ by Gym Class Heroes and we began to dance at the front of the room. Upon introducing my song, I explained that it was an ode to my colon - and ‘We Are Never Ever Getting Back Together’ by Taylor Swift began to play. The researchers laughed and clapped as Sami and I began to dance again and we were laughing with them.

It was the conference I’d be looking forward to for so long, enjoyed so much, and was over way too soon. Before I could blink, I was sitting on a plane bound for Boston. All of my roommates were out when I came home.  I unpacked and called my parents, telling them all about the trip and the countless amazing things that had happened. The next day, I went to the gym and just before I put my headphones in, a certain song came over the loudspeaker and I couldn’t help but grin. ‘We Are Never Ever Getting Back Together’ was on and I briefly considered taking out my ostomy and dancing, but felt that the joke would be lost on my college peers. I put my headphones in, the smile stuck on my face, thinking of my weekend and the great things to come for all pediatric IBDers.

Jennie

I'll start by saying writing this post has caused me internal agony - and I'm not talking about the gutsy variety, but more like the heart-wrenching writers' block variety. Why? I've been asking myself that from the time I first sat down to write this in the airport nearly two weeks ago. I think it's because I still can't comprehend that the Learning Session (henceforth known as ICNLS) is over.

As the inaugural Patient Scholars, Jennie and I traveled to Chicago the weekend of October 5 - 7 to work, learn, and represent the PAC, ImproveCareNow's Patient Advisory Council, at ICNLS. The "pack" is a group of motivated high school and college students with IBD, dedicated to paying our experiences forward to benefit ImproveCareNow's interventions and the next generation of pediatric IBD patients.

ICNLS is a semi-annual opportunity for clinicians and researchers representing ICN care centers around the country and London to come together to share and inspire each other. This Learning Session integrated Jennie and myself as PAC representatives to learn from the team presentations, participate in PAC leadership brainstorming sessions, and interact with the care teams. As the commencement ceremony of our initiatives as Patient Scholars, we hardly had a moment to reflect on our incredible circumstances. Yet, despite the restless nights spent in awe of our company, I couldn't have asked for a more energizing weekend in IBD wonderland.

Exhilarating. Fast-paced. Wonderful. Inspiring. Incredible. Over. When Jennie and I danced to "We Are Never Ever Getting Back Together," a song Taylor Swift wrote especially for Jennie's dear and departed colon, we didn't yet realize the words would later hurt. For the record, I don't expect to never ever see you again, but even six months can feel like forever when you know what's out there. A group of strangers never felt more like home. Thank you.

The theme of the Learning Session was Transitions, in hindsight even more appropriate than I initially realized because the Learning Session itself was a notable transition for me. A Great Point.

The first Great Point in my IBD career was The Diagnosis. My first night in the hospital I spent in room 310. Vulnerable. Alone. Guilty. Feelings I should have never felt, but I did. Vaguely hopeful. For what? I didn't know then. Remission? I didn't realize I could or expected to engage in a deeper goal. I thought Moving On meant fighting IBD until I felt as if the whole dirty mess had been a crazy dream. I wasn't a sick kid, not in my stubborn mind. There have been other significant moments in my journey since then (scopes, Camp Oasis, the first enema, the Prednisone Disaster of 2009, learning that perms do not in fact make steroid face look any better), but none as life-changing as The Diagnosis or worth the title of Great Point.

Until now.

I wish I could've known I'd spend two incredible days in a much nicer room 305, only five digits and (less than) five years off. I wish I could've heard the sound of Jennie and I laughing on the twelfth floor of our grand hotel in Chicago, sharing stories about flying with Miralax and ostomates climbing literal mountains. I wish I could've felt the rush of our breakout sessions, planning our initiatives for the coming months, feeling the most beautiful kind of butterflies in my stomach rather than stabbing pain. I wish I could have seen Molly, Diane, and Sydney holding up a beautifully ridiculous little sign in the airport and us laughing as we walked to the hotel - the beginning of the next Great Point. I would have smiled more. I would have reached out more. I would have felt okay more. Perhaps I would have known too much. Perhaps I needed the struggle to know why I'm working for change.

ICNLS is over, but this is just the beginning of a new Moving On. A more beautiful and hopeful Moving On.

Are you ready? We are.

The ImproveCareNow Quality Improvement (QI) Team at the University of Michigan has been working very hard at improving their QI processes. They now have had a long trend of improving remission rates from one population management report (PMR) to the next. But like good researchers, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?

An Alcatraz Bathroom Installment:

Before I begin, I share with you the following from the fountain of all knowledge, THE WIKIPEDIA, regarding a particularly horrifying story published by Stephen King in his fifth short story collection, “Just After Sunset.” The story is called, “A Very Tight Place.”

"Curtis Johnson . . . is lured to a deserted construction site by his neighbor, Tim Grunwald, with whom he's been having a legal dispute involving Curtis's beloved dog, Betsy, who was killed by Tim's electric fences. He is confronted by Tim who forces him into a Port-O-San, tips it over and leaves him trapped there in the heat of a Florida summer day to die. With no way to get help, Curtis must figure out how to escape or die.”

Can you think of anything more disturbing? Being tipped over in a port-o-potty, on a hot day, and being literally consumed by “what’s down there”? I think about this EVERY time I use a port-o-potty.  By the way, I’m not going to spoil how the story ends. If you just can’t go on without my giving away the ending, I must quote two great modern characters from the classic film, “The Princess Bride,” which recently celebrated its 25th anniversary:

Inigo Montoya: I must know.

Westley: Get used to disappointment.

Let’s be honest, shall we? We’ve all been there. You gotta go, but the only option is a nasty-looking port-o-potty. (Also from THE WIKIPEDIA. The following names for these gizmos that I have been referring to, and will continue to refer to, as a “port-o-potty” (even though I REALLY like the last one): P-Pot, Porta-John, PortaJane, Port-O-Let, Port-a-Loo, Portaloo, Porta-Potty, Tidy John, Kybo, Biffs, Standard Porta Potty Restrooms and Toi-Toi).

A problem unique to port-o-potties is that I find that there’s no, absolutely zero, thought for the next user. “Hey, this thing is already SO NASTY. I’m not going to spend two seconds wiping my feces off the seat for the next person. That next dude isn’t expecting a positive experience.”

I cannot express the level of nausea that I am currently experiencing just thinking about this. I could barf right here at my desk. Which would be bad. I’m taking deep breaths to calm the lightheadedness. Also small sips of Diet Coke.

Unlike other Alcatraz Bathrooms, upon entering you really have no choice but to do something with the seat. I don’t usually see the option of a toilet seat cover, so you’re relegated to using TP. I have found the TP dispensers in port-o-potties to be of the sub-standard, high-friction variety. You know what I mean. You can’t grab off a long piece easily. In fact, you have to slowly pull (or pull and turn) so as not to break off a piece that is utterly useless for your purposes. Did I mention that, if you’re in this situation at all, you gotta go? This preparation takes time, people. TIME YOU MAY NOT HAVE.

Fact is that many of us have no choice. In fact, WE SEE THE PRESENCE OF A PORT-O-POTTY AS A BIT OF A SAVIOR. Isn’t that sad but true.

[editor's note: graphic image below]

I came upon some interesting things when cleaning out my email archive recently. Turns out that I’m an email hoarder. Who’d have thunk? My favorite find is the picture which I will explain shortly.

Confirmation of receipt of my rebate submission from June 2009?

Airline tickets for a trip completed in November 2008?

Login information for websites and companies that are now out of business?

Good stuff.

When the moment comes to explain to someone what IBD is, there is a second where I'm mentally debating between the 'real' answer and the 'nice' answer. The 'real' answer outlines, well, reality and what was happened to me, being gutted and all. The 'nice' answer is the 'Oh, it's not really a big deal, my bowels can be fussy sometimes'. Oh lies.

But how do you explain to someone the troublesome storm beating around in your abdomen when you look fine without causing them to tailspin into a reaction of pity?

And so when I was thinking about this the other day, it hit me - I'm like Superman. (Clarification: I wish I were, wouldn't that be nice!) We're all like the super-hero who is an ordinary kid, typically on a smaller side (think Tobey Maguire in Spiderman), and it's only in the darkness or night when we become our true selves. Not the become-the-massive-green-hulk, but the idea is that we look normal, we are (mostly) normal, but there is something different about us. What I love about my metaphor is that unlike other things I've heard, this is a positive way to describe us. We have super-hero courage and strength and passion about awareness and advocacy, so how are we not super-heroes?

In high school, I was the girl who was sick. The girl with the NG who was once asked if I snorted an iPod shuffle (which, to this day, I am not sure how that's anatomically plausible anyway), the girl who would vanish for long periods of time (aka in the hospital) and suddenly reappear (see, super-hero!), the girl who made it a habit to take ambulance rides from school to the local ER. When I came to college, I tried very hard to just be me - the person who is in love with Patrick Dempsey, likes to run, works in a preschool, and wants to get a PhD in Psychology. I am all of those things and the 'super-hero' part is my Crohn's and my ostomy, things underneath my clothes and inside of me that don't make me who I am but contribute to what my body is. You should never feel like you owe someone a confession of your diagnosis - because you're not your IBD, you're Sarah or Kate or Joey or Marcus.

And you're a super-hero.

Jennie

“Ill people are more than victims of disease or patients of medicine; they are wounded storytellers.  People tell stories to make sense of their suffering; when they turn their diseases into stories, they find healing.”  James Swanton, in forward to The Wounded Storyteller:  Body, Illness, and Ethics (1997). 

My girls love when I tell them scary stories.  Not the overly gory kind, never with bad endings, but definitely the kind with those spooky “just around the corner” monsters that, in the end, are shrunk, tamed, made nice, or were never really monsters in the first place. 

I am perhaps the proudest a sophomore could be of her undergraduate institution, and every year, I have the incredible opportunity to share my passion for Hendrix through a little event called Phone-A-Thon.

Yes, I see you cringing. I apologize if an overly enthusiastic student such as myself has called you just as you’ve sat down to dinner to tell you my story and ask for your support. I promise, some conversations feel as awkward for us as for you.

Sometimes, though, there’s that conversation that flourishes - that reminds me not only why I love interacting with alumni, but why I’m passionate about sharing my passions with strangers at all. The conversation where someone just “gets it.”

Tonight, an elderly alumni struck up a conversation with me about my minor, Medical Humanities, which explores the human aspects of medicine. I soon found myself sharing with him my role on ImproveCareNow’s Patient Advisory Council and my IBD advocacy efforts. I never expect anyone to have heard of IBD or, if so, to appreciate my passion - but here was someone who just “got it:” he has several friends with the disease.

This, on the same day that we talked about Miralax in Organic Chemistry class, and a girl on my campus approached me to let me know my Huffington Post article really inspired her family because her little brother has Ulcerative Colitis? Today has been a laundry list of unexpected happenstance. (Did you know that the main chemical compound in Miralax can not only relieve my constipation, but also contribute to a Suzuki coupling reaction? Neither did I! Found that out while drinking my daily Miralax-Gatorade breakfast oddly enough.)

Back to the story, we struck up a conversation about the significance of strong communication skills in medicine. He shared with me the story of a doctor of his who takes the time to sit down and ask him a simple question at the start of each appointment: “How’s life?” Not in a friendly-opening sort of way, but in a genuine I-am-truly-curious sort of way. Five extra minutes of this doctor’s time, he shared, give him that extra push to stick to his treatment regimen. Five minutes every three months remind him that his doctor truly cares about him, which in turn, makes him truly care about his treatment. In turn, I shared the story of a resident who treated me during my initial hospital stay and shared her experiences living with Crohn’s with me. She is the single most important factor that determined my attitude from that day forward. She took the time to return to my room after rounds and really listen to my feelings about my diagnosis. Fifteen minutes of her time changed my life as much as my diagnosis.

Five, ten, or fifteen minutes of just listening can profoundly change patient outcomes. It’s incredible, but I believe it’s true.

ImproveCareNow believes it too - creating innovations and changing the system to give every patient a voice and the chance to feel heard - and conversations like the one tonight remind me just how proud I feel to be a part of an organization dedicated to giving voices to young IBD patients and their families all around the country and England.

In the words of a wise old stranger, “It’s not just medicine that will cure people. It’s doctors who will listen, believe, and give hope.”

ImproveCareNow is an active, open learning health network that uses collaboration and data to drive improvements in health outcomes for kids with Crohn’s disease and ulcerative colitis. Since ImproveCareNow began, the percentage of kids with Crohn’s disease and ulcerative colitis who are in remission (feeling well, no symptoms, fully active) has increased from 50% to over 75% – all without new medicines.

Our remission rates are published monthly in our Patient and Family eNewsletter CIRCLE, and to our Facebook page and our website.  Sign up to receive CIRCLE today.  The next issue is scheduled for publication on Tuesday, September 25th!