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Great Points

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.


Population Management Drives Improvement at University of Michigan

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:

 

University of Michigan QI Team Analysis of Remission Rates 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.

 

University of North Carolina at Chapel Hill QI Team Quote about Population Management


Port-o-Potties: A Necessary Evil

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.


Ever Seen a Diseased Colon? You Want to?

[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.

 

 

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Superman Syndrome

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


Scary Stories

“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.  One time, I told them about a dare I took as a child, with a friend who lived on a street with a derelict mansion at the end of it.  My friend dared me to climb the wrought iron fence (you know, the kind with sharp points at the top) and go with him into the house.  Just when I had made it all the way up the fence, he yelled and told me to look in the window of the old parlor, not 20 feet from where I clung to sharp, pointy, iron.  A face, pale and gaunt, looked out at me.  I immediately screamed (my girls ask “like a girl?!” to which I reply that they are clearly being sexist in thinking only girls scream, well, so high-pitched). Then I fell, backwards, from the wrought iron fence, the sharp barb of the top guardpoint tearing my thumb wide open as I fell. Blood poured out of my thumb and there, less than 20 feet from me, still stood an old, empty house.

 

My girls stared wide-eyed, as I just let the story drop there.  “What, daddy!  What happened next?!” I smile and say “That’s all. I got what I came for.  We went home.  But I was different.”  They ask me why, and I explain that I was different because, even though I was scared, I tried; I climbed the fence, and I learned my lesson.  The face in the house, looking out at me, was my own.  It was a bright day, and my reflection had stared back at me, scared, pale, wide-eyed.  I frightened myself.

 

Sometimes telling stories of our worst moments is really a way to take power over them.  We don’t always know it at first.  But we have a chance to organize and put into words what happened, how we felt, how things ‘ended,’ and when we do we realize we’re still there and still standing, but now someone is beside us, listening, supporting. We’re changed by this,  in at least two ways.  First, we realize we don’t have to be alone in our suffering, powerless and scared.  Second, we have learned things; things about ourselves, our strengths, what we needed help to get through, and what we survived.  Much research is out there that supports this. Whole treatment programs, like childhood interventions for children who have been traumatized, are focused on the story of ‘what happened’, and actually teach children how to tell their story and take their power back.  Some writers make their whole living telling the stories of their own lives, in transformative ways.  They transform the world around them by helping others understand their struggles and triumphs.  And they transform themselves by organizing their own learning process, their own memories, and gaining power over them in the telling.

 

Tell your story.

 

Chelf, J., Deshler, A., Hillman, S., & Durazo-Arvizu, R. (2000).  Storytelling:  A strategy for living and coping with cancer.  Cancer Nursing, 23 (1), 1-5.

 

Clark, L.F. (1993).  Stress and the cognitive-conversational benefits of social interaction.  Journal of Social and Clinical Psychology, 12 (1), 25-55.

 

Ezzy D. (2000) Illness narratives: time, hope and HIV. Social Science and Medicine 50, 605617.


To Listen

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.”


 

 

 


Post 164

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 websiteSign up to receive CIRCLE today.  The next issue is scheduled for publication on Tuesday, September 25th!


The Point: Protect Yourself from the Flu

As I write I am coughing and sniffling my way through my first cold of the season.  Since my daughter started school in 2010 I have been exposed to a whole variety of new viruses - especially this time of year.  Speaking of viruses, there's another kind out there that can make the common cold look like a walk in the park.  The Flu!

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Here We Go

As I was driving from Nova Scotia to Boston for school, I tried to think of the first day of classes my junior year. I was struggling trying to remember, and then it came to me: I didn’t go to the first day of classes because my body decided the ER was a better place to be. Nothing like starting off the year on the wrong foot.

 

I can summarize the fall semester of my junior year in one word: awful. I had the classes I wanted to take, everything moved in and meticulously set up in my room, a growing contingent of friends to explore the city with. But luckily for me (irony never gets old), I was entrenched in constant mechanical ileum bowel obstructions and ended up spending 2/3rds of the semester slightly (or okay mostly) drugged and trying desperately to figure out how to get better. And as I write this and think back to that time, it makes my stomach sore and also makes me want to have someone playing a violin in the corner as I recount my sob story. But instead I’ll just say this - that was a semester to survive, not one to enjoy.

 

For a long time I thought that every new school year had an obligation to set loose a varying kind of havoc on my body. Every year was something a little different, a little more challenging, a little more tiring. And before this post turns into a sappy, soap-opera worthy story-line, let me say this: this year is going to be different.

 

I’m (mostly) fixed, having discovered the etiology of my mechanical bowel obstructions (who knew yoga could be so dangerous!) and am absolutely elated to say that I haven’t had an obstruction since December (minus my obstruction in April, but hey I ate about 7 apples so that was my fault). It makes a world of difference having my body back and being able to do what I want. As my boss this summer said, ‘planning is important, plans are useless’ - aka nothing goes according to plan, but learning to swing with the punches and expect issues is the trick. I’m not naive enough to think I’ll be completely honky-dorey the entire semester, or that things won’t be bumpy, but I’m ready for what’s to come.

 

Here’s to the new school year. Here’s to new challenges. Here’s to resiliency, perseverance, and courage. Here’s to making new friends. Here’s to learning. Here’s to hoping the most stressful event of the semester will be an exam. Here’s to my senior year. Here’s to getting back up when you fall. Here’s to scars that remind me where I’ve been. Here’s to health and happiness and hope.

 

Here we go.

 

Jennie


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