LOOP

Though I engage in jocularity on all topics related to poo, please don’t lose sight of the fact that I’m trying to, literally, take the subject of poo out of the bathroom and into the kitchen (where families can discuss Crohn’s disease and ulcerative colitis while enjoying dinner).

Below, I am going to reveal a theme that I will revisit (over and over and over again, like a joke that just keeps repeating long after it’s no longer funny) in the future on this blog.

I’m dedicating this installment to THE BIG REVEAL of this theme.  Which means that there will be virtually no content below. Seriously. Almost none. There’s no “tip,” no “advice,” no imparted knowledge whatsoever.

In fact, having read the rest of this post, I strongly suggest you stop reading right now.  What follows is excruciatingly boring.  Consider yourself warned.

I was recently inspired where I do some of my best thinking--on the toilet.  I spend gads of time there. (Brief tangent/confession:  I don’t think that this is kosher, but I generally opt for the handicapped stall. There’s just more room in there; I feel more comfortable. My feeling is that I have no colon, and who is more handicapped in a BATHROOM than someone with no colon?  And I obviously feel the same way about people who have IBD.  Don’t be shy.  Use the handicapped stall.  You are poo-challenged.  Take advantage.)

Those of us with no colons or IBD spend WAY TOO MUCH TIME in bathrooms. Lots of away games. And there are lots of “away” places, right? Work. Friend’s houses. Gas stations. Restaurants. Outhouses. I also throw in dorms and fraternity houses.

Each of these "away" places presents dilemmas.  You can tailor your own loo to your whims and desires, and you can use (or misuse) it in your discretion  "Away" bathrooms?  I wanted a term to encompass these for future blog purposes.

These are not all “public bathrooms.” A “public bathroom,” by definition, is open to the public. Which is not the case with, for example, a friend’s bathroom.

Likewise, these are not all “communal bathrooms.” Now, I’m not 100% sure what a communal bathroom is, but when I think “communal,” I think “commune” and then “communism” and if there’s one thing that a bathroom is NOT, it’s communist.

In fact, I couldn’t think of an existing term that worked, so I set off to coin my own.  After unimaginable inner turmoil, I came upon an epiphany of sheer and utter brilliance (if I do say so myself, and I do):

What do each of these bathrooms share?

They share the fact that you (as the pooper) HAVE NOT SELECTED THE TOILET PAPER! You are literally stuck with whatever is there (unless you BYO, and take it from personal experience, the stares probably aren’t worth it).

In considering what to call these, I actually went back to “communal bathroom,” seeing as not being able to select your own toilet paper did, all of a sudden, sound communist to me. But the term “communist” has unnecessarily negative (for these purposes) connotations, so I again discarded the communists.

Finally, I just said the heck with it. I’m making something up. I’m calling them Alcatraz Bathrooms because, well, “Alcatraz Bathrooms” sounded kind of cool to me. Plus, Alcatraz is surrounded by water. Which is important for no reason that I can see.

So, future posts will take up our groundbreaking series on Alcatraz Bathrooms. We’ll have posts on AT LEAST the following six topics (in no particular order): toilet paper, etiquette, toilet seat covers (friend or foe?), stall/room size, décor and stench control.

I hope that you’ve learned absolutely nothing. Because I certainly have.

In my last post, I mentioned the isolation I felt after diagnosis. I kept my disease and my emotions private. At the time, I didn’t think this was my choice. I felt bullied into silence by my disease. It was so embarrassing. If I had to be sick, why couldn’t I have a normal disease? I thought everyone on the Internet was a weirdo (who would be crazy enough to admit they had IBD online!?) and just wished there was someone nearby who knew UC stood for more than “you see.” I didn’t only feel alone, I was so remarkably confident that I was alone. In retrospect, I wasn’t really trying. I didn’t consider Camp Oasis, or as I preferred to mockingly call it, Camp Whiny Sick Kid (stop, don't listen to my bitter little self, not at all accurate!). I wouldn’t have admitted it, but I knew there were support groups out there. It was my choice not to look into them.

In 2010, I was a Junior in high school, getting over my second flare. I was still as stubborn as my immune system. I wouldn’t have mentioned my disease at school in a million years. When Crohn’s disease came up in French class, it wasn’t from my lips - which made it all the more surprising!

It turns out that all along, a boy just a year older than myself at school had Crohn’s. His family was very active in the IBD community actually. I just never opened my eyes wide enough to realize. I passed him in the hallway at least twice a day. I didn’t speak up that day, though I could see my teacher who knew about my IBD eyeing me from her desk. I wasn’t ready, but this was a defining moment for me. I couldn’t believe it! I ran through the "what if’s" in my mind. How could I have missed this in a school of only 400 students? Would the past two years have sucked less if I had spoken out and connected with him?

Here’s what’s even more surprising, though: I still didn’t reach out to him. Just a few months ago, he reached out to me on Facebook, and I pretended I hadn’t known. I didn’t make the first move. Why?

Taking the first step is scary. Admitting to others that you have a disease is difficult because it forces you to admit your disease to yourself. I ran for two years - because I was scared of a label. I didn’t realize yet that I could choose my label. By not coming to terms with my disease, I was letting it label me - as a girl controlled by her disease. Now, I label my disease - as something that may challenge but will not trap me again.

Now that I’m actively involved in the IBD community, I love meeting other teens with UC and Crohn’s. I love sharing experiences, and I love how we often inspire each other. I wish I hadn’t waited so long to take that first step.

That first step is scary, but believe me, it’s not nearly as scary as fighting IBD alone.

Open your eyes. Look around you. Someone to understand how you feel might be closer than you think. You won’t know until you try.

Remember Alex? Read Alex's first post to LOOP here.

My life in one word (or acronym)…. IBD. I was diagnosed with Crohn’s disease at age nine. I am currently a sophomore at Milford High School and 16 years old. My life with Crohn’s disease was summed up one day by my school nurse. That day I came in to the nurse’s office and I broke down. I was in the middle of a month or so – what seemed like an endless period of having stomach cramps for no apparent reason. I started crying and in that conversation the nurse had this to say about IBD, “You’re allowed to say it sucks.” I thought that summed up the low points of my life and other patients’ lives with Crohn’s disease pretty well.

In my seven years with Crohn’s, I have gone through all the medications used to treat kids and have not found one that works. I have had several surgeries, the biggest of which was a resection of my ilium this past August. I have definitely had my ups and downs. But doesn’t everybody?

Even through the lowest downs, there is always an up; the silver lining that lights up your day. For me, I found that silver lining through Crohn’s disease. I guess Kelly Clarkson doesn’t lie when she says “What doesn’t kill you makes you stronger.” My silver lining is advocacy for a better patient experience. I get my inspiration, my optimism and my might from the patients that I see who have thrived under the weight of diseases worse than mine.

Crohn’s has turned into my life and my strength. It is the reason I am down, but it is also the reason I get right back up again. I have made new friends from Crohn’s. Through Crohn’s disease, I have learned who I can count on, to support me when I fall. It has introduced me to some of the most wonderful patients and people I will ever know. I have met patients facing bigger obstacles than me and living their lives giving back to others; living like everyday could be their last. Through Crohn’s disease, I have found my future and my life goal.

Life will always be full of obstacles but the way you deal with them is what determines whether the roadblock will be turned to a strength or a weakness.

Crohn’s is my life and my strength.

On June 19^th, I was honored to represent the ImproveCareNow network and other learning networks at a White House meeting on how Health Information Technology (health IT or HIT) can improve health outcomes.

Present were about 75 leaders from institutions and practices that have advanced the use of health IT to improve care and outcomes.  In his opening remarks, Farzad Mostashari, MD, Director of the Office of the National Coordinator for Health (ONC) IT made a number of important points:

• The number of offices using electronic medical records (EMRs) has doubled and about half (2,400) hospitals in the US now have EMRs

• Increasing the use of health IT faces many challenges: workforce training, data sharing, privacy and security.  The opportunity is to move beyond simply implementing new technology to using health IT to improve care and outcomes.  ONC is particularly interested in how to turn data collection through electronic health records into a quality improvement program and so invited groups like ours.

• What’s unique about HIT is how fast it can adapt and change in response to needs and feedback

• And it’s important to harness the knowledge within the field.  For me, this was the most important message of the day and one that’s right in line with what we’re doing in the ImproveCareNow Network and C3N Project.  It’s our responsibility to share the knowledge of all – patients, clinicians, and researchers to make health care better.  If patients and clinicians don’t speak up and share what they know, patients will suffer by not getting the best care

During the conference participants shared numerous examples of how HIT and the Affordable Care Act are working to make care better, more efficient and cheaper

• HIT helps to engage patients in collaboration in addressing their problems.  “You use it in collaboration with patients to guide their care.” Mike Zeroukian, MD

• Charles Kennedy, MD Aetna.  “We will increasingly see health insurers pay for health information exchange and better use of data.”

Participants also noted the many limitations of current technologies including:

• Ways for patients to share information among providers

• The need for greater public awareness about individual vendors’ willingness and action in making data sharing possible across systems

• The need for public usability ratings for EMRs (like Consumer Reports) to spawn greater competition in meeting the needs of practicing clinicians

• The need for EMR vendors need to learn about how to support QI

Overall, it was clear that administration officials were listening and that much excellent work is taking place in the field.  It’s a pleasure to be able to represent the work of ImproveCareNow and the C3N Project, which is one of several data and knowledge sharing networks for kids with chronic illness.  Networks such as ours will be the way of the HIT future.

It first occurred to me while organizing the Big Blue Box, a jumbled collection of boxes, bottles, and doctors’ notes. A friend walked into my dorm room as I transferred that week’s supply of pills into my backpack. She already understood the basics of IBD, but I took the opportunity to introduce her to my crew of prescription superheroes.

I was diagnosed with Ulcerative Colitis in 2008 at fourteen. It took just one month. I got lucky. I woke up from my first set of scopes to find out I’d won a ride to the inpatient floor. I was told to expect at least a week-long sleepover. Instead, my body ate up the Prednisone like candy, and I managed to break out after three days. Lucky for the second time.

My first superhero was Asacol. It gave me a sweet two months of remission. I flared again in 2009. This was my worst IBD flare to date, no doubt, but again I got lucky. I avoided an inpatient stay. I responded to Prednisone again. The rash on my skin that threatened to take my beloved Asacol away turned out to be a benign condition. I won’t deny the facts: the pain was unbearable at times, I felt very isolated in school, and I re-flared halfway through my Prednisone taper. I still think myself lucky.

I met a new superhero: 6mp. My parents and I feared it at first. It had the dreaded C word attached to its reputation. It came with an abundance of blood tests and risks. It also saved my colon. I’ve had very few side effects, and none of them significant. I expected nausea or worse to come out and, bam, hit me in the face, but they didn’t. Remission finally stuck around. I’ve had no significant disease activity since 2009.

Through it all, IBD was my secret. Poop isn’t really a comfortable topic of conversation in high school. I hated how my disease had affected my high school social life. I decided I needed to reach an emotional remission to match my physical remission: I would control how my disease affected my life, not vice versa. I joined an online support group. I’ve met and bonded with other teens with IBD. I’m a member of the ImproveCareNow patient advisory council. This year, I’ll be a volunteer counselor at CCFA Camp Oasis. I’ve found my voice, or at least I’m trying.

I have friends without colons. I have friends that dream of remission. I have friends that have dietary restrictions I don’t have or feeding tubes. I don’t pity them, but I do consider myself lucky. Every patient’s story is different, and none of us chose our story ahead of time. We didn’t get to preview our particular path through the disease and approve or veto it. I don’t know why my path has been less bumpy than my friends’. It makes me sad. If I could, I would share my remission with them. I can’t explain why things are the way they are, so I just call myself lucky.

That day in my dorm room with the Big Blue Box, all of this ran through my mind.

“This just makes me feel so bad for you,” she said finally.

The story rushed through my head from the beginning - where I started, how far I’ve come. My story is my own, but my passion for sharing it is about so much more than me. Neither of us spoke for a few seconds.

“I’m okay,” I say. It’s true. I’ve been lucky.

Optimism is a wonderful thing that the world needs to have more of. Dictionary.com defines optimism as “a disposition or tendency to look on the more favorable side of events or conditions and to expect the most favorable outcome” or “the belief that good ultimately predominates over evil in the world.” Optimism is what pulls a person through adversity; gives a person hope; and makes patients heroes that serve as role models for other patients.

My six-year experience with Crohn’s Disease has included the bottom up approach in finding medications and without all that much success; hospitalizations; resection surgeries; alternative ways of finding nutrition, and lots of pain. Some may think that it’s hard to be optimistic with all of this, but I have two choices.  I guess I could wallow in self-pity or face it head on, and try to stay optimistic.  The latter is my choice; I think a better path to follow and it sure makes it easier to keep up the fight.

Some of my optimism is natural or part of my personality I guess.  Part of it is telling myself that I can beat this thing and that maybe someday they will find a cure; in fact maybe I will be a Doctor someday and be part of that research.  Friends and family certainly help, and maybe the odd distraction (like music, or a good movie …).  For the most part I guess I am optimistic because I refuse to give up hope. I believe in staying strong.  In my opinion, keep looking beyond the day-to-day challenges and hoping tomorrow will be a bit better. Without hope, there is no way of getting through the struggle.

I also get some of my optimism from others; specifically from other patients.  Seeing what others go through makes my battle look small. These patients serve as my heroes and role models – probably because I see what they are going through and certainly can appreciate it when I compare their condition to mine. The biggest hero in my life today does not have IBD; she has Cystic Fibrosis. She has had to put university on hold while she waits for a double lung transplant. She goes in and out of the hospital for weeks at a time and never gives up hope. She is optimistic and in the face of hard times she devotes her time to other patients. What is inspiring is her ongoing optimism; someday, I wish that others would look at me and think the same thing – that good ultimately predominates over evil in the world.

Jill Plevinsky | Patient Advisory Council Chair

I was diagnosed with Crohn’s disease at age 7 and have grown up to become both personally and professionally invested in the pediatric inflammatory bowel disease (IBD) population. Through my interest in improving the lives of these patients and their families, I became involved with the C3N Project and ImproveCareNow primarily as the founding chair of the Patient Advisory Council, which serves the initiatives of both projects.

I currently live in Cambridge, MA having recently earned my M.A. in child development from Tufts University. As I continue my collaborative work with the C3N Project and ImproveCareNow, I hope to eventually earn my PhD in clinical psychology and continue research and program development efforts that will help improve the accessibility of social support and overall health-related quality of life for all patients with IBD. I have a special interest in utilizing social technologies and social media platforms to do so because my own avid use of these tools has helped me to broaden my own patient network beyond friends I had met through experiences earlier on in life through pediatric support groups and Camp Oasis.

My own experience at these support groups and the Crohn’s and Colitis Foundation of America’s Camp Oasis program initially inspired me to dedicate my higher education and career goals to young patients with IBD, and I hope that my insights and unique perspective from that of a patient and a researcher helps LOOP readers to better understand how ImproveCareNow is striving to make a difference from the top down.

When my daughters were younger, they loved The Little Mermaid, or more specifically the Disney version, with beautiful Ariel, crazy-scary Ursula and, most saliently, her two evil, ever-present eels, Flotsam and Jetsam. In Disney's tale they are menacing, conniving, willing to terrorize beautiful and sweet creatures of the sea.  Our girls used to squeal and scream, grabbing my wife and me for safety whenever Flotsam and Jetsam showed up on screen.

Not unlike the evil sea-witch Ursula, IBD can bring its own kind of flotsam and jetsam into our patients' lives.  Sometimes it feels meaningless, like debris after a shipwreck, sometimes menacing and purposeful like Ursula's eels.  In his blog post "For a Girl Recently Diagnosed with Crohn's Disease,"' Bill Brenner describes his early course of Crohn's, his eventual return to full living, and what he calls the "mental byproducts" of IBD (http://billbrenner1970.wordpress.com/2012/05/03/for-a-girl-recently-diagnosed-with-crohns-disease/).  He is strong, and positive, although he pulls no punches for a little girl who needs to be prepared for what's ahead.  He also tells her he knows she'll be strong, too. The message is real, and it is beautiful.

All this is to say, there are physical and psychological “byproducts” (Bill’s apt term) of IBD.  Pain, bleeding, complicated medical and dietary regimens that sometimes feel like wishful thinking, these all create difficulties.  Children lose weight and may be teased for being “scrawny,” or become bloated and puffy from steroids and be teased again.  These horrors might happen right in the middle of adolescence, when physical appearance means so much socially.   Missing school for doctors’ visits, procedures and hospitalization (some of which may cause traumatic responses themselves) can bring a loss of social connectedness and peer support.   Weren't childhood and adolescence supposed to be about fun, about growth and accomplishment?

IBD can, in fact, induce a feeling of lost childhood. Depression, anxiety, body image problems, purposelessness and even suicidal thoughts can and sometimes do accompany this loss.  When this happens our young patients need understanding, safe space to openly feel and express their pain.  Sometimes they need counseling to help repair real psychological damage and build coping.

And yet there is other debris, like beautiful driftwood, that is found (or created!), picked up, and used in amazingly positive ways.  Our patients with IBD can be incredibly strong, like Bill.  They have really good moments and smile in their pictures.  A teenage patient recently responded on a survey, when asked about how IBD affects his appearance:  “I’m sexy and I know it!”

They often learn that pure, simple pleasure can be amazingly powerful, and in fact they may figure this out much earlier than their friends who don't have such daily challenges.  They may have less social time but many develop tough, tight-knit friendships that are much more healthy and supportive than many of their schoolmates. They might know the true value of precious things better, and earlier.  They sometimes appear to be "old souls"- as if the negative debris of IBD helped them develop wisdom, purpose and inner quietness faster.  Flotsam and Jetsam don’t always win.  Love, support, a sense of humor, and –sometimes – help from a psychologist, rescue them from the eels and help them craft their own future.

Noel Jacobs, PhD | University of Oklahoma Health Sciences Center

From the C3N website comes a great quote:

“people who lack the power to shape their life course in significant ways are less likely to believe they can take control of their health, and thus less likely to engage in health-promoting behaviors" (Bandura, 1996).

My mother said that when I was in first grade she knew I would be a psychologist.

I came home from school one day, excited to have my first grade pictures!  Remember those big sheets that you had to painstakingly cut into little squares?  I was proud of my pictures and couldn’t wait to pass them out.

Okay, so fast forward with me 19 years.  I have been in college five years… switched majors twice, taken two pre-professional tests, and have landed a spot in graduate school - in clinical psychology.  My mother takes my face in her hands, smiles, and says "I really always knew this was what you would do. Remember those first grade pictures?"  She goes to her dresser, pulls out a leather wallet, and removes a picture from it.  It is of me, at age 6, smiling into the camera.  “Flip it over,” she says.   I turn over the picture and, there on the back, in big purple magic marker letters are the words “If you’re feeling blue, call me - ________.”  I had given my phone number, with that message, to all my friends and many adult friends of our family, in first grade.

I guess I have loved and felt moved to try to help hurting people for a long time.  I came to this type of work, helping children and families touched by chronic medical problems and the difficulties they can cause, through my work in graduate school and then, later, in consultation and intervention work through my developing practice.  One of my favorite things is to help children discover the strengths and abilities they already have, and help them and their families put those strengths to work improving other aspects of their lives.  Children with IBD aren’t broken, nor do they need to feel diminished in their ability to live a “normal life.”  In my experience nobody lives a normal life; we all live extraordinary lives with both difficult challenges and triumphant successes.  What I love most about helping children with chronic illness, though, is that regardless of their at times significant traumas and daily problems, they’re still trying to find something to smile about.

There is a joke about our outlook in difficult situations.  Two children whose parents have volunteered them for research are taken into separate rooms.  The researcher tells his students,”These two children are helping us test whether optimism and pessimism are permanent attitudes in people.” The children are then placed in rooms.  The more negative child is placed in a room full of beautiful toys, the more positive child in a room full of horse manure.  An hour later the researchers return.  The room once full of beautiful playthings now has broken toy debris and a child, sullen, sits in the middle of the room, crying.  In the other room horse manure is flying everywhere as a little boy moves through it, eyes open and full of wonder.  The lead researcher, bewildered, opens the door and says “Billy? What are you doing?”  To which the boy replies, “I just knew that with all this poop, there must be a pony in here somewhere!”

I believe that, although both optimism and pessimism can be persistent, pessimism doesn’t have to be permanent.  Children who feel hurt or scared can feel hopeful again if we give them support and help them find and use their own tools.  Our patients with IBD, and their families, are amazing and strong, although they don’t always feel like it.  They need and deserve community, hope, and the realization that together, they can accomplish great things and have fun along the way.  I believe in them, I believe in the benefits of programs like ImproveCareNow, and I’m thrilled to be a part of this community.

As a young person growing up in Washington, DC in the late 60s and early 70s, I was immersed in the importance of changing the system.  My father was a lawyer and my mother a social worker.  My family placed a strong emphasis on taking responsibility for making things better.   Several years later, when I decided to go to medical school in New York City to train at Bellevue Hospital, I wanted to experience medicine in one of the country’s biggest urban public hospitals. During medical school, I also decided to join the National Health Service Corps as a way to provide service.

Fresh out of residency, I was eager to put into practice all that I had learned.  However, I wasn’t able to start my work in Corps in Rochester, New York immediately. I found a position with the Elmwood Pediatric Group while I waited for my service to begin.  After I began my service, I continued to spend parts of days and weekends at the Elmwood Group.

There was a striking difference in the environment of the private practice and the neighborhood clinic. At the clinic, appointments were scheduled twice a day in blocks, once in the morning and once in the afternoon. Mothers and children waited for hours in a cramped waiting room devoid of pictures or toys.  At the Elmwood Group, we saw many more patients, equally complicated cases, in a schedule that ran on time.  At Elmwood, I would see poor kids with asthma whose disease I could manage much more effectively than I could at the health center because it was easier to develop an effective relationship with patients in a system that ran efficiently and that communicated a sense of caring. In short, I was struck by my inability to produce the same outcomes (even though I was the same person) working in two different systems. It was simply unavoidable that my effectiveness as a clinician depended on the system in which I was working.

I also discovered that by focusing on what patients need and want, I could change the system. After I was named director of pediatrics at the clinic, I took what I learned about efficient office operations at the private practice, did some reading about queuing theory and succeeded in implementing a scheduling system that improved the experience for patients and increased the number of children for whom we cared by about 50%, with no increase in staff, while reducing the number of no-shows.  From this experience, I also learned that changing the system affected not only the patients but also the doctors caring for them. It was so much more satisfying for all the physicians to see patients in a system that ran efficiently, communicating to our patients that we respected their time.

My appreciation for the importance of the healthcare delivery system deepened when Corps transferred me to a storefront clinic the south central neighborhood of Los Angeles.  By the time I left Rochester, I had realized that I needed to have more skills than I had learned in medical school if I was going to change the system. I wasn’t hesitant to share my “big ideas” for better healthcare delivery with my partners of the Elmwood Group. One evening after work, one of them put his arm on my shoulder and said, “don’t become one of those researchers who just studies why those of us in practice don’t use evidence or don’t provide the best care for our patients. You better figure out how to be useful.”

This was a defining moment.  Over the past 20 years, I have studied and learned about how to use and apply improvement science and systems engineering to enable doctors, nurses and, now patients work together to make health care the best it can be, applying the knowledge we have today, and discovering and creating innovations that will make care better tomorrow.  That’s why I’m proud to be part of the ImproveCareNow Network.