LOOP Blog

Having your body at the center of ongoing medical scrutiny is not the ideal situation in which to develop an individual and autonomous body image. We make room for scars and side effects, sometimes feeling as though who we are (and who we want to be) shrinks more and more. Developing a positive sense of self and body image is something every kid must face, but especially when it comes to IBD there is a role for everyone to play.

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT, I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis - but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.

So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.

I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist's office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court - and despite the March cold - donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.

I was literally walking, kicking, and dancing through a Pit of Things that Could Kill Me.

But I did it. And nothing happened.

Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn't do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot - and despite the overwhelming evidence that I won't react - I still look for a hive to pop up. I am safe - but I can never erase that twinge of fear and doubt.

IBD is similar in some ways.

I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn't go. I'll think, 'This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.' I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.

I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it's just my menstrual cycle. That's the most likely conclusion, and for three years, that has been what it always turns out to be - but my mind never goes there first, even now. Perhaps it's a coping mechanism for when the day does come that I slip out of my remission - as if I think I'll find comfort in saying, 'Well, at least I knew this was coming.'

Living with a chronic illness, I am always walking through a pit of danger. Right now, I'm protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won't hold off my immune system until I'm old and gray, but in the absence of a cure, my disease isn't going anywhere. Even my medications could hurt me one day.

But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.

It's important to know what I can't do, but it's equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It's important to know where I stand, but even more important to walk with confidence through wherever I am - whether it's the sidewalk or a courtyard of pecans, remission or a flare.

IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if's of my disease) can be unnerving, but I am walking, kicking, and dancing through it.

In October 2012, I arrived wide-eyed and a little afraid at my first ImproveCareNow Learning Session. I remember walking into the big room with my luggage and taking in the scene - so many brilliant clinicians and researchers I admired and greatly respected all in one hotel for one weekend. And here I was, too. I am nineteen - and so to many, I'm just a kid still. I didn't know what to expect, but I did expect to listen more than I spoke. After all, in a room full of some of my personal heroes, I was "just a patient."

As the inaugural Patient Scholars, to say that Jennie and I have been given the opportunity to live a dream would be an understatement. For a girl who expected to listen far more than she spoke, my voice has been valued more than I could ever have hoped or imagined. Jennie and I are just two patients - but to think about how many patient voices can and will resonate at future Learning Sessions excites me more than I can express. It's so clear to me now that "Just a patient" is not a concept that exists in ImproveCareNow.

On April 12th I returned to Chicago for the first Learning Session of 2013. Gutsy 2 (myself) may have been without her Gutsy 1 (Jennie) - but together through the art of virtual communication and the help of some friends, we didn't let a sudden strike of illness take away our weekend of hard work and joyous celebration. We shared in a presentation on self-management support and treatment adherence. We opened up about our stories and the accomplishments of the PAC (Patient Advisory Council) over the past year. We were inspired by stories of progress and achievement coming from all around the network. I even learned a new dance - the PDSA - aptly named after a fundamental quality improvement measure - because QI is really at the heart of making care better and thus rightfully deserved a spot at the heart of the celebration! (I expect PDSA to go viral on YouTube any day now.)

For a moment, when I landed in Chicago, I felt that familiar sudden shock of fear. For just a moment, I felt little again, like I was "just a patient" with a lot of ideas on the fringes of a great big community. But, this time, when I entered the conference room, I knew I belonged in this community. In one year's time, it's my hope that more patients will have felt the joy of this kind of welcome.

Five years ago today, I was waking up early - colon all cleaned out - and driving to the hospital with my mom, neither of us knowing I wouldn't be going home that day or that a whole new world was about to welcome us. Six months ago, when I arrived in Chicago for my very first Learning Session, I couldn't have even imagined myself standing in front of such a brilliant crowd and sharing my story - a story that only just begins with a diagnosis and hardship - on the level I did last weekend. Today, I can't imagine what comes next - but I know I'm humbled to have a voice that can share in the learning. I am eager to pass on the torch of leadership to the next Patient Scholars - because we all have stories, and many of the stories I heard last weekend touched me deeply and reminded me of why I do this.

I do this because, right now, another young girl and her mom are driving to the hospital - and they don't know what comes next - but I do.

That young girl will get better. And maybe, if we all reach our hands out together to say that everyone can make a difference and is valued on our team, she'll be able to help change care for the better for the next girl with IBD.

Like any good team, we are more than the names on the backs of our jerseys when we unite.  In this Network we are more than the names we go by: patient, parent, researcher, clinician. I am so proud to have a jersey on the ImproveCareNow team.

Together, we have quite the winning streak. And one day, I really do believe that we will achieve that cure, together.

Sounds like the opening of a joke, doesn't it?

It's not. I'm going to start with a brief interlude in which I brag about my kids.  I will end with the tale of a bathroom.

Tinkerbell, Jedediah and Elly Mae each have some talent.  Tink and Elly Mae each dance. Jedediah woke up one morning and wanted to act, and he's got some chops.

Sela and I, together, have five left feet.  The only person I know who has a voice worse than Sela does is me.  So where they get this talent, we don't know.

In the last week, we've been to a recital for Elly Mae's dance team, an awards banquet for Tink's dance team and several performances of Jed's play.

Sela and I are extremely proud of each of them.  They selected activities that were important to them, and they worked HARD and practiced.  A lot.  There are few things that have given me as much joy as a parent as seeing them get excited about an activity that they chose, as opposed to the requisite soccer, etc. that every kid is forced to try.

We'll talk about Tinkerbell's foray into horseback riding in some post in the future.  No idea what that was all about.

As Buzz once said (and I'm paraphrasing), "To the bathroom, AND BEYOND!"

Jed's play was at the Junior High School.  Which is convenient because Jed's a junior high student.

Being at the Junior High School necessitates going to the bathroom in a junior high school bathroom.

With me so far?

It shouldn't surprise you to learn that boy's junior high school bathrooms smell like junior high school boys.  So I was put in a foul humor upon entering.

I'm also fairly convinced that the first casualty of school budget cuts was functional toilet paper.  This stuff was the worst of the industrial bad.  Wow.  It was so bad that my butt audibly complained.  Seriously.

Despite all of that, the worst part was the sink design.  Picture this.  Two side-by-side sinks.  Not a problem. Where were the soap and paper towel dispensers?  To the left of the sink on the left, of course.  You couldn't get to them from the sink on the right.  You might as well have had one sink since only one was usable at one time.

Don't give me any complaints about space constraints.  There were options.  A myriad of options.  Between the sinks for the soap dispenser?  Anyone?  Anyone?

At least I only had to use the thing a few times.  Jed's gotta use it all the time.

To improve at anything – be it your grade in history class or your best time at the 50-yard dash - you need to know how you’re doing. This can come in the form of a grade or where you finish in a race. Without this type of feedback, you can never be sure if you’re on the right track.

At ImproveCareNow, we want to provide the best pediatric and adolescent IBD care for all of our patients. To make sure that we are on the right track, ImproveCareNow centers receive regular feedback in several key areas related to IBD care. This information helps centers know how well they are reaching their goals and helps them make progress in areas that need improvement. (Click here to see an example of an ImproveCareNow Key Clinical Measures Report.)

In addition, ImproveCareNow centers have access to new tools that allow patients to provide feedback to the individual doctors and nurses who provide their care between visits—they want patients to be activated and ready to participate in their care.

Additionally, with the introduction of automated pre-visit and population management tools, doctors and nurses can be better prepared for visits. They can pinpoint areas that need attention and learn from the care provided by other providers at their center. The more timely the feedback, the sooner our providers can address aspects of your care.

We are excited to provide tools that help your doctors and nurses do a better job helping you achieve improved quality of life and better health!

[Editor's note: This post was contributed by Theresa Todd, MPH, MA.  Theresa is the Improvement Coordinator for Gastroenterology at Nationwide Children's Hospital in Columbus, OH and it is her responsibility to help the IBD team with quality improvement goals.  Theresa has been part of the Nationwide team since July 2010.]

This semester alone, I have heard the phase “all or nothing” easily a gazillion times. Okay, I might be exaggerating here, but what I’m trying to say is that my psychology classes have discussed – repeatedly, at length each time – the ‘danger’ in “all or nothing” thinking. And it’s very true, because things are never black or white, things are not all or nothing. It’s not as easy as saying that someone is sick or healthy, there are grey areas in the middle, that slick slide you find yourself on traveling from one side to the other.

I hear my professors say this – I have proof of this scrawled in my doctor-worthy handwriting – and yet, I watch them crash through the glass walls they just built. Today in a class, a guest lecturer was talking about chronic pain. I know the guest lecturer meant well and he was in truth ultimately very determined to make a difference for those living with chronic pain.

But – some rules of thumb for doctors/parents/anyone reading this: not everyone who will deal with chronic pain/illness is anxious or depressed. Everyone (illness or otherwise) will deal with anxious and depressed moments, absolutely, but that does not mean they present with clinical psychopathology or that it is the heart of the problem.

One of the points this lecturer made was to help encourage positive thinking, active lifestyles, and a sense of control. So here’s an important note – if you want patients to have positive thinking, the doctor has to be positive with them, if you want patients to have a sense of control (and better yet, not just a sense but actual control), then a doctor has to be willing to share. It’s not all or nothing, it’s not you versus me, it’s us, here together – the ‘chronic’ should be a hint that there’s a plethora of time together. So use it wisely.

With each passing lecture, the urge to stand on my chair and shout (no, not ‘Captain my captain’, though that would be pretty awesome) “Hey you, listen, I’m a patient and I disagree. You can’t judge me or make blanket statements about me and all patients because you don’t know me.” This might cause massive disruption to the class and/or result in a stern conversation about being adults and not interrupting others when they’re speaking. But, like every kid knows, if you don’t have anything nice to say, you shouldn’t say it at all.

Sometimes I think people forget that patients are not lab rats. We’re not a separate population, smushed somewhere between children and adults. It’s like wearing one of those really itchy and constricting outfits for a family function and all you want to do is rip it off, but that would be impolite and people might stare so you smile tightly and keep your mouth closed. It is so polarizing to say people can only be a patient or a doctor, no in-between space, or shared community or feelings or beliefs. One or the other. All or nothing.

So I will stand up metaphorically on my chair (though, in reality, this involves me typing passionately at my computer) and declare that I am not just a patient, it is not black or white, not every person with a medical issue experiences anxiety or depression or is incapacitated crying ‘why me’ in a corner with a sappy violin playing in the background. Most of us are strong and capable and fighting – we’re advocates and whole, real, amazing people. We are every color imaginable, because black and white is boring, we are everything because to be all or nothing is belittling and untrue. We are loud, and we will never be quiet.

Jennie

Imagine being a patient who arrives at the clinic and can really sense that the providers are ready to meet your needs!

Imagine knowing that your whole care team sat down a week in advance to review your disease course over the last six months, track down any missing lab results, and troubleshoot with colleagues to figure out why it’s been so tough to keep your disease in remission.  Imagine getting a call from the nurse a full week before clinic to ask what has been going on since your last visit and, as a result, the social worker is in clinic and ready to discuss solutions to the issues you are having at school.  Imagine the lab having your orders well in advance so that the collection tube that they have to use, but don’t keep stocked, is ready and waiting. This time you don’t have to wait while they run down to the supply room, making you late for school and your parents late for work.

The automated pre-visit planning tools that ImproveCareNow centers are now able to use will help make scenarios just like these a reality. Providers will have detailed summary information about their patients available at their fingertips when they need it...before the visit.  They will have a concise, printable tool that can be easily shared with the rest of the care team. Ideally, this tool will be used to guide conversations with parents and patients before they come to clinic so that they can be a part of planning their visit, not just passive participants in it.

The result will be more reliable, proactive and individualized pediatric IBD care.

[editor's note: submitted by Sarah Myers, MPH, RN | Lead Quality Improvement Consultant for the ImproveCareNow Network]

ImproveCareNow Network Director, Dr. Richard Colletti, announced that on Wednesday March 27, the first electronic data transfer was performed successfully.  ImproveCareNow data from the Electronic Health Record (Epic) at Vermont Children’s Hospital was successfully transferred electronically to the ImproveCareNow registry (ICN2).

The data had been entered by the pediatric gastroenterologists and nurse practitioners as part of clinic visits using an IBD SmartForm specifically designed to have extractable data elements needed for ICN2.  The data was then extracted and transferred to ICN2.  Going forward, Vermont will continue to transfer data electronically.  Read more about electronic data transfer and the ICN2 registry in an article by Keith Marsolo, PhD - Director of Software Development and Data Warehouse at Cincinnati Children's Hospital Medical Center.

This is a major milestone in the Network's plans to enable all ImproveCareNow centers to have electronic data transfer, eliminating the need for manual data entry of numerous data elements, reducing the time and cost of data entry, and improving the completeness and accuracy of the data.

All ImproveCareNow centers who use the Epic IBD SmartForm for data collection can now utilize the electronic data transfer process.  The IBD SmartForm is accessible in all Epic systems.  The Network is prepared to help all centers using Epic to access, configure and clinically use the IBD SmartForm as soon as possible.

ImproveCareNow is also working with other EHR companies—Cerner and Centricity now, and Allscripts soon—to develop similar forms that will collect extractable data necessary for electronic data transfer to ICN2.  These 4 companies serve 80% of the centers in ImproveCareNow.

Thanks and congratulations to Keith Marsolo and the team at Biomedical Informatics at CCHMC for their unflagging commitment and success, and to all who have envisioned and worked to bring this to fruition.

We’ve taken our first step—we are ready and eager to work for and with our care centers as we dash into the future of model IBD care.