LOOP

[Editor's Note: The following post was written for LOOP by a member of the ImproveCareNow Parent Working Group who is also living with Crohn's disease.]

After years of planning for transition, this is it. On Monday, my son will borrow a car from a classmate, drive himself 35 miles from his university campus to a Dallas hospital, use valet parking for the first time, check in at an infusion center, and get his Remicade infusion, alone, for the first time. He’ll be far from his Ohio home and far from me. This will be his 53^rd infusion; I’ve been there for nearly every one.

As usual, he has led me along in this transition. At age 11, when he’d only been diagnosed with Crohn’s disease for a few days, he came to me and said, “Mommy, if I have to have an ostomy that’s OK, because you have one and you can do whatever you want”. I hadn’t even brought up the possibility of surgery but he was already way ahead of me.

I’ve tried to do what the transition guides tell us, with mixed results. (Does anyone not get mixed results with teens?) But now that his – our – transitional period is ending, I can see that he was preparing himself all along. He is ready to continue the daily battle on his own, with me in a supporting – rather than guiding – role.

So now I’m left to consider what my new post-transition role should be. For the past seven years, I’ve advocated for pediatric IBD patients through our local center and the ImproveCareNow network. There’s still much to do and I’m still motivated to continue, but I’m no longer a parent of a pediatric IBD patient. How much longer will I be able to relate to other parents and feel that they can relate to me? I guess you could say that I’m in transition now. There are no pediatric-to-adult transition programs for the parents, so I suppose I will have to find my own way.

ImproveCareNow Remission rates are posted for September 2012 for centers with greater than 75% enrollment of eligible patients.  We have also shared them on our website, in CIRCLE, and on our Facebook page.

Having a child with IBD means many things. It means learning a new language, a new way of living, developing new family dynamics, gaining a new perspective, and seeking, desperately, to get guidance (and to give guidance). Also, it reinforces the notion, "You don't know what you don't know." But, luckily at my child's care center, and across the ImproveCareNow Network in which our care center is a participating member,  guidance is available to parents and guidance is also sought from parents.

As I watch my child learn to live with Ulcerative Colitis, I learn too. So, not only does my parental guidance come from her medical team and other parents, it comes from my child as well. She guides me by letting me know I am being overprotective or questioning too much - how did you feel today? what was your level of stomach pain? how many times did you go to the bathroom? - and that sometimes it is best to just leave the UC inquisition for another day. When she is feeling good, she just wants to relish the moment and forget about UC. She guides me to live in the moment as she has learned to do and to appreciate the gift of now.

Parents as partners and teachers is important to a child's medical team. Parental guidance is a must when communicating a child's flare pattern as it is as unique as are our children. My daughter's care team relies on me and my husband to guide them through her symptoms and health pattern so they can care for her better and deliver better outcomes.  It cannot be "family-centered" care without the family participating as partners in a child's care.  Doctors cannot provide the best care for IBD kids without parental guidance.

As my child is a tween, my parental guidance to her during a medical visit is to model clear communications with her medical team. When my children were very young, I would always say before a doctor's visit, "Doctors are like detectives, and we have to give them the clues to help them solve the mystery."  Teaching our children how to communicate with doctors is a necessity.  With her teen years fast approaching and college around the corner (in my mind anyway), I must use my parental guidance to prepare my daughter for life-long medical care without me. I must model the behavior she needs to learn to do life with UC on her own, someday.

Even though my daughter is only a tween, her transition to being able to care for herself must begin now.  While I want to be by her side through her IBD journey forever, the reality is I cannot do that.  So I must not fail her by not preparing her or guiding her toward this kind of independence. We are very fortunate, our care center has a formal transition program from pediatric to adult GI care.  It  is just this type of guidance that I need to receive from them to do this right.

ImproveCareNow (ICN) made transitions a focus at their recent Learning Session in Chicago.  Young adult patients, medical professionals and parents came together to bring their perspectives, provide their guidance for the many transitions children with IBD face and how to navigate them as smoothly as possible.  Across the ICN Network,  parental guidance is not only needed, it is valued.  The ICN Parent Working Group (PWG) is proof of that - parents from ICN centers are coming together to guide one another and the ICN Network.

When a child is diagnosed with IBD, or any chronic disease, parental guidance is important. Why?  Because family-centered care requires a circle of communication and guidance from all involved at different points on the journey.   It is the needed model to resolve the issues and meet challenges of pediatric IBD. Without the many facets of "parental guidance", our children will not live as well as they should with IBD.  So not only is parental guidance important, I believe it is required.

 

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 any good researcher, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?

Physician Leader Dr. Jeremy Adler thought that major contributors to improved remission rates over the past year include: 1) improved processes with more complete data collection, 2) educating clinicians who misunderstood the methodology and consistently misclassified visits, and 3) new and improved PMR process, in that order.

Dr. Adler's team began digging through their data, and leaned a few things.  In the interest of helping others in the ImproveCareNow Network - which is what collaborative medicine is all about -  the Michigan team shared what they learned from analyzing their data.

Here is what the Michigan Team learned - in Dr. Adler's words:

1. We are still collecting data on paper forms (we just went live with EPIC).  We had a high rate of visits with missed data capture.  So many of the data points were old.  We made many attempts to improve return rates of data forms, which eventually improved our data collection rates.  We also have had several changes in our forms designed to help highlight questions that were frequently missed.

So I went through our pre-visit planning (PVP) forms to manually calculate remission rates from the column "PGA Remission Status" (# patients in remission / # total patients).  I then went through Excel to exclude the data points where the data were >200 days old.

On the enclosed graph, the red line represents the original remission rate from the PMR. The blue line represents remission rates with data >200 days old excluded.  I was surprised to see that there is very little difference.  I suspect that this means that when we miss data collection, we miss it for everyone, not just sick patients.

2. I then learned that a provider had a misunderstanding of the Physician Global Assessment (PGA), and was routinely classifying based on overall disease course, rather than disease activity at the time of the visit.  I then went into excel to exclude all the data from that provider (green line).  Again the remission rates did not change substantially.

3. This leads me to believe that our improvement in remission rates may be true improvements in disease status.  The improvement in remission rates starting in April-May coincides with when we began routinely having population management meetings, and routinely acting on our findings.

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