“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, 605–617.

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

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

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

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

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

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

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

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

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

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

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

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.

The flu is bad enough all on its own, but kids with Crohn's and colitis should take it even a bit more seriously because the flu virus can stimulate the immune system and that can cause a flare.  One way to take control and help prevent that from happening is to get protected against the flu early in the season.

I noticed just the other day that my local pharmacy has put up their flu shot sign - which means the vaccine is available.  The point:  add 'flu shot' to your list of questions for your next visit to the doctor (if that happens to be soon), or call up and schedule an appointment to get your flu shot today.  Getting protected against the flu may help keep you in remission.

Keep in mind: if you are taking medications that block your immune system (such as: prednisone, azathioprine, 6MP, Imuran Remicade, Humira, methotrexate and others - ask your doctor to be sure) you will want to get the killed vaccine (the shot), not the live vaccine (the nasal spray).

You can learn more about the flu shot by reading the Centers for Disease Control and Prevention 2012-2013 Influenza Vaccine information statement.

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

I hardly consider myself an outdoors girl, but for five days this summer, I volunteered as a summer camp counselor for twelve to thirteen year old girls. We roasted marshmallows, performed in a talent show, and competed in “Camp Olympics.” The campers, aged seven to seventeen, were as enthusiastic, active, loud, and curious as any of their peers at typical summer camp experiences around the country. Yet, Camp Oasis is not your typical summer camp experience. All eighty campers had Crohn’s Disease or Ulcerative Colitis. Although I’ve lived with Ulcerative Colitis since fourteen, I had not experienced Oasis, but I know firsthand the value of camaraderie among young patients and fell in love with friends’ descriptions of Oasis’ impact on young patients. I believe every child should experience camp, but camps that serve chronically ill kids provide them with especially extraordinary experiences. That first bite of a roasted marshmallow tastes just a little bit sweeter to a kid who’s been NPO or on a liquid diet. The kid whose medical chart outshines their personality on a regular basis shines just a little bit brighter on stage. For the kid who has more hospital bracelets than sports trophies, “Camp Olympics” means just a little bit more. We give the campers the reins at camp, and the medical staff stay in the background, and that’s a freedom every young IBD patient should experience. It’s impossible not to look around you at camp and feel crazy lucky, even in spite of the disease that brought us all to a tiny rural town in Missouri.

I’d heard from friends at other Oasis camps that the zip line is considered the defining Oasis activity, and since counselors are allowed and encouraged to participate in activities with the campers, this was an activity I was also eager to try, if for no other reason than to say that my first summer at Oasis included that defining zip line moment. I felt like a proud momma watching every camper in my group conquer that wall and the zip line, which made the blow all the stronger when I didn’t. For a few seconds, it bothered me; here, all my twelve-year-old campers had made it up while I had succumbed to the pain. After pepping them up for this the whole week and encouraging them not to give, I had given up. I felt as if I’d let those kids down somehow as a role model, in hindsight a misinterpretation of those words. I didn’t get that defining zip line moment, but the self-pity was short-lived because it was replaced by an ah-ha moment. Through all this reflection over the kids succeeding where I had fallen a bit short, I realized that somewhere during the week, I’d stopped thinking of them as sick. I’m not quite sure how to express the magnitude of this realization. For years, I refused to attend Camp Oasis because I considered it a camp for sick kids - and yet here I was, there in the middle of Missouri at so-called Camp Whiny Sick Kid, and the last words I’d have used to define those kids were whiny or sick. Even the two girls in our and the adjacent bunk who needed to leave for medical reasons were anything but whiny; not to perpetuate the ridiculous stereotype of sick kids as heroes, but those girls were tough. Like I said, I maybe felt sorry for myself not making it up that wall for about three and a half seconds, and then I was over it. My defining camp moment didn’t come on a zip line like I expected; it came on the ground beneath it. Not only had I pushed myself harder than ever before to hang on to a rock wall, but I had finally been able to push past a label I’d stuck to Oasis four years prior. I absolutely expected to look at these kids and see “kid on Prednisone” or “kid who had ostomy surgery,” but instead I saw them as just kids at camp and often forgot why we were all at Oasis at all. I didn't physically land in a harness in the middle of an open field - but mentally, I landed somewhere so much more personally significant.

I believe that’s the beauty and power of Oasis. It may be a specialty camp for IBD kids, but it’s so easy to forget why you’re even there. And once you leave, it’s hard to imagine not going back. The lessons I learned in those five days are innumerable, but perhaps the most significant was the reminder of the first piece of advice to come with my diagnosis: IBD, whether mild or severe, should never define a personality. I’m so thankful Camp Oasis is around to help the next generation of IBD kids learn that too - and remind some of us older kids of what we ought to remember.

I’ve never been a fan of toilet seat covers. This goes back to my earliest experiences. You know the flap that hangs over the ledge in the front that, I guess, is supposed to protect your equipment from the Petri dish of germs in and around the toilet? I always thought that part went in the BACK instead of the FRONT. Why? Because my experiences with poop consistency (consistency as in “firmness” not “uniformity”) and my poop blowing all over the place, I thought that the flap was an attempt to protect the integrity of the bowl. I was also young, naïve and stupid.

I generally do not use toilet seat covers. In the nastiest of Alcatraz Bathrooms, my procedures are as follows. First, I wipe the seat with TP. I’m not shy about TP usage for this purpose—this is not a time to show how “green” you are. I must protect my hands. Then, I do one of two things. Either I use or try to use (more on this in a moment) a toilet seat cover, or (most often) I use TP (folded over two or three times, depending on the level of nastiness), over the seat and hanging over the front of the toilet (like the seat cover flap).

When I say I “try” to use a toilet seat cover, well, toilet seat covers and the containers that dispense them are fraught with design flaws. I think that, truly, the crappiest (pun intended) of engineers are assigned to crummy projects such as this. About half the time, the seat cover rips just exiting the mounted dispenser. I used to think that I was pulling them out incorrectly, but I follow the up-down, down-up, in-out, out-in whatever instructions, and the thing STILL rips. And what the heck is up with style that is folded over twice, essentially in quarters? I find these on airplanes mostly, and I guess that the design was driven by space limitations. That thing comes out of the dispenser just fine (usually), but unfolding the thing? I have nothing but scraps in my hands.

I cannot tell you the number of crumpled toilet seat covers I have thrown away, flushed or (forgive me) left orphaned on the floor behind an Alcatraz Bathroom toilet.

The ONLY good news here is that the most abominable of Alcatraz Bathrooms usually have industrial flush capabilities so that stopping up the toilet with all the extra paper (both unwiped TP and seat covers) is not a common occurrence.

I have to say, in cleaner Alcatraz Bathrooms, like at a friend’s house or at work, for example, I don’t usually cover the seat. What kills me, though, is that there is ALWAYS, ALWAYS one stray hair on the seat. Without fail. What to do about stray hairs? Listen, it’s a dog-eat-dog world out there, and sometimes you’re wearing Milk Bone underpants (a nod to modern philosopher Norm Peterson). God help me, sometimes I just sit on them. I’m not proud of this, but we all eat plenty of rodent hairs in our food so a stray hair on the seat can’t hurt. Right?

And you kids out there, just to be clear—you can’t get pregnant from sitting on a toilet seat. Tinkerbell—you CAN get pregnant by being alone with a boy for over three minutes. That’s why your dad has to come with you on all future dates.

ImproveCareNow and the Collaborative Chronic Care Network (C3N) project

We all know the current system of chronic illness care isn’t working.  It’s not working for kids with diseases like Crohn’s disease and ulcerative colitis; like Bianca (not her real name) that experience a lot of pain.  But pain is the least of Bianca’s worries. Without optimal treatment, she’ll likely have stunted growth, possible arthritis, and a significant risk of surgery.  And many normal childhood events like sleepovers or birthday parties….. a real stress.

The system is also not working for Dr. Sandy Roan (also not her real name), Bianca’s doctor.  Dr. Roan has a variety of treatment options, but the “best evidence,” the evidence that results from randomized trials, can’t provide information on what will work best for a particular individual.

It’s also not working for Bianca’s mom, Anna, because the care delivery model doesn’t make it easy for her participate in Bianca’s care.  She is wondering about trying diet modifications to see how best to control Bianca’s symptoms. She keeps an eye on what's going on but feels the doctor’s role is to come up with solutions. She doesn’t really see the collaborative possibilities.

Finally, it’s not working for Dr. Vincent Kapoor (not a real name). He’s a researcher interested in improving IBD care but he’s faced with small unrepresentative data sets, and a lack of easy and productive ways to share data and increase the impact and reach of his research.

The Institute of Medicine’s “learning healthcare systems” model provides an exciting vision in which patients, clinicians and researchers work together to choose care based on best evidence; together they drive discovery as natural outgrowth of patient care; and ensure innovation, quality, safety and value, all in real-time.  But so far, neither patients, nor doctors, nor researchers have easy access to such system.

Collective wisdom

What if we could harness the collective intelligence of patients, clinicians and researchers to create such a system?  Think of Wikipedia, or, in science, how open, rapid sharing of data in advance of publication in the human genome project accelerated the sequencing years ahead of schedule.   These are examples of how the production of knowledge, information, and know-how can be distributed over large groups of people.  Yochai Benkler, of Harvard, calls this form of production network-based or “social” production.

http://www.ted.com/talks/yochai_benkler_on_the_new_open_source_economics.html

Network based production is suited to complex systems like health care, precisely because the necessary knowledge, skills and tools are often beyond the capacity of one place, one person, or one organization; because the stakeholders in the process, patients, clinicians and researchers, are motivated and have skills that can be devoted to the task; and finally because the scientific questions about how to accomplish improvements in health and health care, require a multidisciplinary complex systems science perspective.

With combined support from the NIH transformative research program, a US Agency for Health Care Research and Quality Enhanced Registries grant and 38 ImproveCareNow Network care centers; a team of patients, families, clinicians and researchers are working together to create what we call a collaborative chronic care network or C3N.  A C3N is a network-based production system for health and health care.

Does this sound like an outlandish idea?  It’s not; it’s actually already taking place. In the ImproveCareNow Network pediatric gastroenterologists are working together to share their collective wisdom and know-how to continuously improve the care and outcomes of children and adolescents with Crohn’s disease and ulcerative colitis. The percent of patients in remission has risen and been sustained without the introduction of new medications.

How did ImproveCareNow do it?  SHARING - sharing data, sharing knowledge, sharing know-how, and sharing work.  Every ImproveCareNow center pools their data, compares outcomes, standardizes care and learns from one another about how to get better results.  An article in this month’s New Yorker, by Atul Gawande describes how standardizing and making care more reliable can make medicine more effective and lower cost.  http://www.newyorker.com/reporting/2012/08/13/120813fa_fact_gawande

The C3N project is collaborating with the ImproveCareNow Network to take our work to the next level; redesigning an existing clinician-centric network into one that involves everyone – patients, families, clinicians and researchers.

How do you create a network based production system for health and health care?  In my next post, I’ll write about the three ways in which patients, families, clinicians and researchers are co-designing this new system.

In the meantime, you can learn more about the ImproveCareNow Network at https://improvecarenow.org; the C3N Project at https://c3nproject.org, and listen to the talk delivered at the Patient-Centered Outcomes Research Institute, which forms the basis for this post: http://youtu.be/FxYbSEXWzhU

Unfortunately, I can remember it like it was yesterday.

I was at the hospital - again. Missing school - again. In pain - again. And had just been told I was fine - again. And somewhere in between beginning to cry and trying to re-explain what was going on, the thought occurred to me, am I crazy?

They call it the ‘med student syndrome’, but let me tell you, this is particularly contagious in the world of Psychology as well. In fact, a good friend of mine is convinced she has every disorder the professor lectures about until I talk her down from her multiple psychopathologic diagnoses. But I was beginning to feel the same way - I knew I was sick, I knew something was terribly wrong, but the doctors didn’t and they were content with sending me home. So again, I asked myself, am I totally off-the-wall-in-need-of-serious-medication crazy?

If living with IBD were a job, that might be one thing. If I could spend all of my time and energy and resources on feeling well and resting and recovering, hey, it might just work. But then there’s that thing called life - with classes and homework and friends and responsibilities and jobs and you name it. Most of my friends living with IBD have their plates piled insanely high with activities, and their reason is that there isn’t a moment to lose. But there’s something to be said for deep breathing and going to bed early and sleeping in. Because when you’re running neck and neck with the road runner and your bowels are misbehaving, it can take of all your energy to get through a minute without thinking about your dysfunctional immune system.

How does one ‘keep on keeping on’? Short answer: I have no sweet clue. But this is what I do know about the exhaustive mental fatigue that belabors any IBD patient: sometimes, you need to check out and put your head down and call it a day. Don’t throw in the towel, just turn out the lights and try again tomorrow. At the end of the day, you’re the only person living in your body and you do know what’s going on, medical degree or not. Call a friend, laugh at a joke, eat a really good piece of cake. Do whatever it is that makes you feel like yourself and gives you the strength and courage to get back up.

And remember, you’re not crazy. You’re gutsy.

Jennie

e-Patient Nikolai (Kolya) Kirienko's White House testimony is a must read if you feel it's essential to have a voice and visibility into your own healthcare.

Testimony of Nikolai Kirienko
Project Director, Crohnology.MD
University of California, Berkeley
www.crohnology.md

Incorporating Patient-generated Information to Manage Health
HIT Policy Committee Hearing
June 8, 2012