LOOP

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.

Learn more about C3N’s N-of-1 Study and the MyIBD Platform

We invite everyone who is interested in innovative new approaches to chronic illness care to join this free, live and interactive webcast hosted by the Collaborative Chronic Care Network (C3N) on April 5^th at 1pm ET.

Ian Eslick

Ian Eslick, of the MIT Media Lab, and Dr. Peter Margolis, Scientific Director of the ImproveCareNow Network and co-principal investigator of the C3N Project, will chat informally about the C3N's innovation, the N-of-1 Study, & technology platform. This is a great opportunity to listen and learn more about how C3N is helping clinicians and patients work together on their care.

Register here.

I’m having one of those days (following one of those nights). 

A “my no colon no feels good” kind of night and day.  Those of you with IBD and more complete insides know what I'm talking about, too.

I won’t bore you with the gory details. They’re gory. Kind of like the stomach flu (one way traffic—down only) on steroids.

It does present a conundrum, however, and this is something that I’ve pondered for over 15 years.

Is this really a “my no colon no feels good” thing? You know, something special to people with my constitution? Or, is this a garden variety bug or “I ate something that didn’t agree with me” thing? Something that affects even the commoners?

Allow me to get philosophical for a moment. I figure I’m actually getting “biological,” as opposed to “philosophical,” but I also figure that any person can strive to say something philosophical without sounding like a total idiot, but when the same person tries to say something grounded in actual science, well, he/she could be wrong and actually sound moronic.

I’m thinking that taking the colon out of the equation screws up the equilibrium from mouth to anus, so to speak. Messes with the order of things, you might say. Leading me to this question: 

Excluding pouchitis (clearly a no colon phenomena), would someone with no colon experience the same intestinal issues under the same conditions and the same diet as someone with a colon? In other words, is the “my no colon no feels good” situation a function of my “no colon” or just “no feels good”?

Let me insert some real life data:

1. FACT: I haven’t vomited since Day 3 after my second surgery (despite my system’s best efforts following the Epcot Center “Mission Space” Incident of 2005).

1. FACT: I haven’t had the stomach flu since I became no colon.

1. FACT: I have never suffered from constipation since I became no colon.

1. FACT: I sometimes wear white socks with dark shoes and dark socks with white shoes, being forced to suffer endless ridicule from Sela, Tinkerbell and Elly Mae (Jed just shakes his head).

Why am I asking? Because if my “no colon no feels good” is just your regular, run of the mill bug or “I ate something that didn’t agree with me” thing, “traditional” “medicine” (like how I used separate quotation marks?) like Pepto Bismol, Alka Seltzer, antacids, etc. should make me feel better, right?

But if this is some foreign situation, an affliction for which there is virtually no market (who is going to spend billions and billions to design a medication for the “no colon no feels good”?), then I am, well, out of luck

Feel free to comment or email me with your concern over my condition (he said in a shameless grab for sympathy).

[Editor's Note:  IBD is definitely not always guts AND glory...sometimes it's just guts...and as Jennie puts it - disobedient guts.  Staying positive and empowering others to do the same is important to Jennie, but she recognizes that it's also important to stay real.  And it is a very real challenge to live with a chronic illness each and every day - physically and psychologically.  Read Jennie's musings about her most recent Gutsy Generation post, titled "The Shield".]

My blog posts usually focus on living well and living large with IBD - my goal is to always portray a 21-year-old finding her way in life with disobedient guts. Someone once told me that they admired my ability to be vulnerable, which at the time I was mortified by this comment. Vulnerable? What an insult! I thought. But now I think it is one of the nicest compliments I have ever received.

Why the change in attitude? Being vulnerable and exposing your scars - literally or metaphorically - shows that no one is perfect, everyone struggles, life is hard and it's about getting through and getting up. Every individual at one time or another will face anxious moments, sad moments, frustrating moments, and the like - it's normal and in so many ways it's what it means to be human. This is all the more important in pediatric chronic illness, when children with healthy psychology are confronted with incredible physical and emotional trauma. It's like buying a map to get to a different city but having the car break down on the way - it's critical to support mental health alongside physical health in flares and remission.

It's not that it's 'all in your head' by any stretch of the imagination, it's that it's impossible to tease apart psychological health from physical health - anyone who is nervous feels butterflies in their belly. The psychosocial issues of IBD warrant discussion and reflection and not just from the 'outside in' (i.e., doctors and researchers), but from the inside out, where patients can stand up and say - without shame or embarrassment - that they're struggling and need help. This is a way we can truly improve care now.

I’m a big proponent of the patient voice. It’s only natural for me. My second grade teacher actually nicknamed me “She Who Is As Loud As Thunder” for a Thanksgiving program. I was a loud kid, and any of my friends will tell you I haven’t changed much. IBD was a temporary knock down, but it didn’t take me long to get up. On my second day in the hospital after diagnosis, I was making a list of questions for my doctor. I didn’t have the courage to say them just then, but I was making the list and handing it off to my mom. I’ve always been opinionated and talkative, so becoming an engaged patient was an inevitability.

So my speechlessness took me by surprise when a professor asked my class (Literature & Illness - sounds like the best class ever, right?) to characterize what it means to be a patient in one word. It was the one word part that stumped me. I can speak my thoughts as a patient in blogs and essays and whatnot, but one word? Coincidentally, I was the final student to be asked, so I was able to listen to my classmates’ answers first. The word powerless came up a lot.

And it occurred to me - I’ve rarely felt powerless in my care. Lonely? Yes. Frustrated? I would have shouted that word at you when my Prednisone taper failed back in sophomore year. Scared? Here and there. But powerless? Rarely, if ever. Why? Because I’ve always been allowed to have a voice. My voice has never been shot down. I’ve never needed to settle for being quiet - and maybe that’s why I feel powerful in my care.

Having a voice has allowed me to feel comfortable with my treatment plan. It's allowed me to feel okay asking questions. Lists don't get passed over to my mom anymore. It's certainly made me feel prepared for the ultimate transfer to adult care in a couple of years. Most of all, having a voice in my care has given me the confidence to be comfortable with my life with IBD. I would say that's quite the opposite of powerless.

Take this week. I’m waiting in the mail-room to pick up my seven week supply of enemas, which came in a very big box. A very big box at least twice my width. And in college, a big box typically indicates (a) cool new furniture or (b) a very special care package from someone who loves you a lot. So, naturally, one of my friends got very excited when my box and I made it back to my dorm. And while I won’t deny that my mother loves me a lot, the contents of the box weren’t quite what my friend was expecting. The best part - after she figured it out, we had the greatest laugh. Two years ago, this might have been awkward. Instead, it was just a hilarious moment among friends. I felt comfortable enough to control the situation and make what easily could have been a negative situation into a positive one.

This is the reason I’m such a big advocate for patient involvement in care. There are the obvious reasons - it contributes to better adherence, psychosocial adjustment, and understanding of their disease. But I believe, most importantly, when patients are enthusiastically encouraged to join in the decision-making process - and given the resources to do so effectively - their confidence can skyrocket. I’m certainly a more confident young adult after having IBD for a few years than I was before, and I know my experiences with IBD have been a huge factor in my development.

Whether it’s feeling comfortable enough to laugh in my doctor’s appointments or laugh over my friend’s reaction to a box of enemas, it’s the same feeling that’s hit me lately. It’s good to have a voice.

Back to class, when it came my turn to define a patient in a single word, I chose changed. That’s really what it is and should be when it comes to the patient voice - not the loss of a voice, but a changed voice. A voice that needs to learn how to join in harmony with others to form a unified care team, but still a voice that can be heard loud and clear.

Preparing young patients with IBD to transition from pediatric to adult care, and actively transferring care to the adult care team, is crucial to ensuring the continued effective management of IBD. Below is an informational article, originally written for a 2013 issue of CIRCLE eNewsletter by Sandy Kim, MD and Maureen Kelly, RN, MS, CPNP. In it they discuss transition from the clinician perspective, outline transition stages and goals for parents and patients, and provide answers to frequently asked transition questions.

Today in class, a guest lecturer talked about patients with chronic illness “having to get used to” their new roles as patients. Those words were not the main point of the sentence; they were the words you say trying to pad the time, but nevertheless they were there, sandwiched in between other ideas. It made me think of space-saving storage bags. My grandparents bought them years ago, in an effort to control the umpteen crocheted afghans that had begun to overtake their Florida condo.

There’s a sense of disbelief – or at least at 13 I possessed such a notion – that overtakes you when watching someone demonstrate a space-saving bag. They show you the pile of items to be stored and the nonsensically small bag that the items will supposedly all fit into. No, your reasonable brain informs you, this is impossible; it is foolish, for it seems like trying to fit the entire American population into the state of Rhode Island. But the miracle is performed; disregarding your doubt, the vacuum is hooked up to a special port in the bag, sucking air out and shrinking down the large pile until it is neatly, possibly even comfortably, squished in the teeny space-saving bag. And this is what I thought of, as the speaker lectured, about fitting into bags that can't possibly contain the whole of you - until you shrink.

There is something about being a patient that is belittling, and for the chronically ill, something that is voluntarily so. We comply and save our feelings for favorite books, comfort food, the song that always makes us smile, the memory of our first car, our first kiss, our first failure, plans to travel the world, and whatever else makes us up.  Instead we don the Johnny shirt, shrinking into our own space-saving bag. We become reduced down to our disease; a list of symptoms, a medicine cabinet of pills, a medical record number.

If there is a manual on how to deal with a chronic illness, I missed it. As far as I'm concerned there are no rules, all you can do is live (and trip) gracefully. Yes, it is important for people with chronic illnesses to learn about their illness and to adjust to what it means (read: adjust emotionally not adjust your expectations about your life's possibilities).  But it is also important to be true to yourself.  When I wake up in the morning and get ready for class, or sing along to some favorite lyrics, or tell my parents about my day, or make cupcakes for my roommates; I am not my disease. I am Jennie. I am a girl graduating from college who wishes Patrick Dempsey would marry her - and so many other things. I politely, but fervently, refuse to be put in a space-saving bag, because it’s impossible to shrink me down and after years of being reduced to a diagnosis, I will no longer allow it.

The noun ‘doctor’ comes from the Latin ‘docere’, which means ‘teach’. ‘Patient’, on the other hand, is also Latin but means ‘suffering’. Even if you can manage to overlook the double meaning of patients having to be patient, the roots of the words speak for themselves. But the best doctors are the ones who suffer alongside you, who see the pain you’re too proud to admit to, who are normal and everyday and accessible and in that way wholly incredible and wonderful. And the best patients are the ones who never pass up the opportunity to teach a doctor, a nurse, or a medical student. The relationship between a patient and a doctor is dynamic and constantly evolving, and only when we can understand and respect it as a process will we ever be able to meaningfully work together – to quote a Taylor Swift song (but of course), “two is better than one”.

So be a little rebellious (if you’re like me, you never really went through the traditional teenage rebellion phase [Mom, Dad, feel free to disagree], you’ve earned it). You don’t fit in a space-saving bag, so don’t bother trying. Be patient with yourself, but no need to be only a patient – you are a teacher, you are incredible, you are a thousand other things, and (in the words of a fellow Crohnie) you deserve a beautiful life. That, my friends, is impossible to fit in a space-saving bag.

Jennie

I'm often asked if I believe ulcerative colitis has changed me for the better.

It's a tough question. I can't go back in time and see how my high school years would have played out otherwise. There is no me, as I am now, without ulcerative colitis.

Has ulcerative colitis changed me for the better? The simple answer is no. My disease has not changed me outside of my intestines. I am the same girl with a few extra pills. The more complicated answer is yes* - with the asterisk. It's based on a technicality. No, UC has not changed me for the better, but living with UC has.

It starts with another girl: one named Tara. She was diagnosed with Crohn's Disease during her second year of medical school. A few years later, Tara had chosen to pursue a career in pediatrics and found herself on the inpatient rotation at my children's hospital in April '08 - the month of my diagnosis and subsequent hospitalization.

You can guess how this plays out.

I was the "I'm okay" kid in the hospital. I felt so good on steroids and so relieved to have a name for my disease, my answer to most everything became standardized. Did I want a visit from the art therapist? "I'm okay, thanks." Did I want another blanket? "I'm okay, thanks." It was my standard answer, so if asked if I wanted to participate in a mentoring program, I would have probably answered predictably: "I'm okay, thanks."

Tara was the mentor this "I'm okay" kid never wanted. She stayed one day after rounds to share her story. A day past diagnosis, I hadn't yet started to think about what a future with IBD meant. Thanks to Tara, I never doubted my potential. From the get-go, I knew Tara's story. If she could continue to pursue her passion with IBD, my possibilities were equally endless. Until I met Tara, I didn't realize mentoring is not an emergency measure; it's a survival skill. Her confidence inspired my confidence.

Being a good mentor is not about knowing the "right" thing to say or the "right" moment to say it. There will be moments when you don't know what to say, and there will be moments when it's best to stay quiet and just listen. Being a good mentor is not about the story; it's about the storyteller. The best storytellers - and the best mentors - realize that every story matters - and every story can change another story for the better.

Until I met Tara, I never believed a single patient voice could matter. Clearly, as I'm here blogging, I do now.