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Of Villainous Eels and Amazing Strength (or “I’m sexy and I know it!”)

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 (  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.

Story of Self | Noel Jacobs

Noel Jacobs, PhD 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.

Learning about changing health care systems – My story


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.

Happy 'Don't Fry Day'!

No Fry DayMuch in the same way ImproveCareNow gets excited for World IBD Day (May 19th) and Crohn's & Colitis Awareness Week (December 1 -7), the National Council on Skin Cancer Prevention is excited about Don't Fry Day - which is today, the Friday before Memorial Day Weekend.  A day that is set aside as time to raise awareness and hopefully prevent skin cancer.


Skin protection and cancer prevention is serious business that everyone should be thinking about.  We are posting this message here today because it is important for kids who are taking, or have taken, immunosuppressants (thiopurines are an example) to treat their IBD to be extra careful in the sun - as the risk of developing non-melanoma skin cancer can be higher for them.  You can read more about this in the upcoming issue of CIRCLE - which will be released on May 29th.  In the meantime, in honor of Don't Fry Day, put on your broad spectrum sunscreen, grab a big floppy hat and your sweet sunglasses and enjoy a beautiful Memorial Day Weekend!

Parenting sick kids

[EDITOR'S NOTE: Learn more about the parent behind this story here.]

Parenting a child with any chronic illness is, to put it lightly, a challenge.

I strongly believe that IBD is “different,” but that’s a topic for another day.

Other parenting topics that we will save for another day include advocating for your child with regard to healthcare and (key the “Schoolhouse Rock” music) Knowledge is Power!

In fact, today we’re not going to focus on your child or children with IBD at all.  We’re going to concentrate on your other children.  So, this post may not apply to you at all, and if it doesn’t, move along, move along, there’s nothing to see here.

When I speak to parents, one of my messages is, “We tend to treat our kids with IBD differently, don’t we?  Maybe we let them out of chores.  Maybe we let them do things that we don’t let their siblings do.  Right?”

[At this point, every parent’s head is bobbling up and down.]

Then I say, “It’s OK.  It’s natural.  And there’s nothing you can do about it because you’re always going to have a tendency to want your sick child to get the most out of the time that he/she feels well.  But, remember that you have other children.”

Oh, yeah.

This is far from an exact science, and specific family dynamics will affect how you navigate through this part of your challenge.  But here are a couple of tips.

First and foremost, you must remember and be sensitive to the fact that each of your kids are dealing with all of the same every day issues that all kids deal with, and you need to be there for them as best you can.  While it may be the last thing you want to discuss and you may deem it “unimportant” given that you are awaiting medical test results, your daughter’s bad experience on the bus merits your attention.

Second, you must let your other children, in an age appropriate manner, know what is going on.  I was 8 when I was diagnosed with UC, and my sister, KK, was then 6.  KK recently confided in me that she thought I was dying.  My parents never had the, “Han’s tummy is sick, but he’s going to get better” discussion with her.  My parents needed to understand that her life was turned every bit as upside down as everybody else's by my illness.

Chores around the house are also tough.  It’s not like Sela and I ask our kids to go down to the creek with a washboard and scrub their clothes, but setting and clearing the table, putting stuff away, taking out garbage, caring for (no codename needed) Izzy the dog—those are things we expect from our kids.

Here’s the tightrope.  We’re not going to ask Jed or Tink to do any of these things when they don’t feel well enough to do them.  But we also don’t want our healthy kids to carry more of a share of the load.  The last thing we want is for Elly Mae to be “mad” at or “resent” Jed or Tink for being sick.

I remember a discussion that I had with Tinkerbell when Jedediah was at his sickest—in and out of the hospital.  Tink was 14, and Jed was 12.  I went to speak to Tink and I said, “Don’t think for a minute that your mom and I don’t recognize that you’re getting short shrift.  We absolutely recognize that we haven’t been there for you as much as we would have liked, and we’ll make it up to you.”

Tink’s response still brings tears to my eyes.  “Dad, it’s OK, Jed needs you.”

I figured we must be doing something right.  But most of all, it was just another example of Tink’s awesomeness.

Story of Self | nocolon33

I was 8 years old when diagnosed with ulcerative colitis in 1975.  That was the dark ages.  Non-flexible scopes.  Months and months without a diagnosis.  Wait!  There’s still that months and months without a diagnosis problem.  That’s something we’re working on fixing.

After a fairly mild disease course for 20 years, my UC worsened significantly in 1994 resulting in a full colectomy in 1996.  Guess what, though?  This blog isn’t about me.

Because of those dastardly internet predators, all of the names that I use, other than that of the family dog (Izzy) have been changed to code names.

My daughter, Tinkerbell, then 6, was diagnosed with UC in 2004.  After her initial remission, she had a flare up in 2010.  While it took a while to get her under control, we learned a few things.  One, she cannot take 6MP.  Which bums me out because I like having all of the arrows in the quiver for treatment.  Second, her UC is low and localized.  That’s proven to be a good thing.  She’s back in full remission taking no medication except a 5ASA drug.

My wife, Sela, and I thought that IBD had hit us hard enough, but we were wrong.  In 2010, my son, Jedediah, was diagnosed with what I'll call an advanced case of UC.  He struggled mightily over the next 12 months as we watched one medicine after another not work.  Jed got sicker and sicker, in and out of the hospital.  After all of the arrows in the quiver had been fired, Jedediah had his first colectomy surgery in January 2011 and the next 2 months later.  Jedediah is doing great!

Our youngest daughter, Elly Mae, has escaped the family genetic lottery through her first 11 years.  She lives in constant fear that she’s next.  Sela and I take solace in the fact that the odds really are with us, but you never know.

I volunteer for several IBD organizations, and I speak at IBD education events.  I have many messages, but my main focus is to help parents understand the power they have over their children’s care.  IBD has a public relations problem—people don’t like to talk about poop.  Other chronic illnesses get all the pub.

As a result, I’ve talked with dozens of parents in recent years who have that shell shocked look on their face.  Many had never heard of “Crohn’s disease” or “ulcerative colitis” until the doctor delivered the diagnosis to them.  They are venturing into the unknown, and that scares the hell out of them.

I understand.  My parents were those parents.  I’ve lived through it as the ill child of parents who had to feel their way around, as an adult with IBD and no remission in sight and as a parent of two children—one with mild IBD and the other, well, not so much.

Knowledge is power.  Being a parent is power.  Acquire and uses these powers.  Your kids are going to need it and you.

Han (I’m a 45 year old Star Wars geek.  What other name should I use?  And since I get to pick the code names, I’m taking Han all day long and twice on Sundays).

Story of Self

Richard Colletti, MD Network Director of ImproveCareNow

Richard Colletti, MD | Network Director

ImproveCareNow Network Director and Physician Leader for the Vermont Children's Hospital at Fletcher Allen Health Care - Dr. Richard Colletti - in his own words. 

Like other pediatric gastroenterologists who care for children with Crohn’s disease and ulcerative colitis, I try to learn as much as I can about my patient, as much as I can about the disease, and to care about both.  But the care that a patient gets doesn’t just depend on how much a doctor knows, or how much a doctor cares—it depends on the system in which the doctor works.

I've been in practice for over 40 years, and I’ve felt gratified to be able to provide one-on-one care to many patients, and to develop caring relationships with many families. For the last five years I’ve also been involved in ImproveCareNow and the C3N Project, collaborating with other clinicians and staff.  Through this work I’ve felt the additional gratification of knowing that our work is helping so many kids with Crohn's disease and ulcerative colitis get better, even kids I never met and don’t know.

When ImproveCareNow got started, in January 2007, I didn’t know much about quality improvement (in retrospect, I knew less than I thought).  After five years I’m beginning to understand the power of QI, not only how it can help improve outcomes, but its ability to transform the way we work, and the way we think about our work.

I’ve been struck by how it has become second nature for the whole pediatric GI unit in Vermont to use QI.  The doctors, nurse practitioners, nurses, medical assistant and secretary—we have learned to use work flow diagrams (“swim lanes”), run charts and ramp up PDSAs—“swim, run and ramp up”—to more effectively schedule follow-up visits, order lab tests and x-rays, make sure patients get seen regularly, and get the right dose of medication.  Pre-visit planning, population management and self-management support have become part of our everyday system.  Team lunch on Mondays is not just to eat and socialize, but an opportunity to discuss how to use these QI tools to deliver better care.

It’s satisfying to know that more of our patients are in remission today than five years ago—our work is paying off.  What’s next for us?  We want to have a parent join our QI effort.  Until we have a true partnership with patients and parents, we can’t get the best outcomes.  Like the pediatric gastroenterologists, nurses and staff at the other ImproveCareNow centers, we want the best outcomes, the most patients possible in remission.  Not only our patients, but all of the kids with Crohn’s disease and ulcerative colitis in the US.

World IBD Day 2012

World IBD Day 2012 LogoMay 19th is set aside as a day to raise awareness about two chronic illnesses that together affect millions of people worldwide.


Crohn's disease and ulcerative colitis.  Together known as Inflammatory Bowel Disease or IBD, these two chronic conditions affect the digestive tract - from top to bottom.  The causes are not known, and while research continues there is currently no cure.  However, there is hope and a whole lot of heart - in the ImproveCareNow Network.


Thank you for joining us here, on this special day - World IBD Day 2012!   ImproveCareNow, together with strategic partner - the C3N Project - is engaging a community.  We look forward to having you as a part of this community.  We have so much to learn from each other.  LOOP is a place to share information, to learn, to discuss and to work collaboratively.  Together we can co-design the best standard of care for kids with IBD.  It begins with awareness and understanding.


You can help raise awareness and understanding about IBD and ImproveCareNow (today, tomorrow and the next day) by simply using your voice.  Ask questions and learn more about IBD and ImproveCareNow on Facebook and Twitter, and watch our videos on YouTube. Have CIRCLE, our eNewsletter, delivered to your inbox.  Email your questions and stories to so we can answer and share them on LOOP.  We have a fabulous group of clinicians, researchers, innovators, parents and patients all ready to write posts for LOOP and they want to hear from you.


Purple IBD Awareness RibbonHappy World IBD Day to you!  We look forward to seeing you back here on LOOP | the official blog of ImproveCareNow in the near future!


Welcome to LOOP | the official blog of ImproveCareNow.

We all have a voice - patients, parents, clinicians and researchers – and we want to share our stories, ideas and innovations with you.  Through LOOP, we hope to further our impact in the pediatric Crohn’s disease and ulcerative colitis (IBD) community.

ImproveCareNow is an established network of pediatric gastroenterology care centers – 36 care centers, with 6,800+ patients in our registry and 300+ clinicians participating in the Network.  We have raised the bar for the standard of care in pediatric Crohn’s and colitis.   Our remission rates speak for themselves.  ImproveCareNow kids' remission rates have climbed from 50% to 75% in the first five years.  Our end goal is to spread ImproveCareNow to all kids in the U.S. with IBD – so that many more can feel well instead of sick.

Thank you for visiting LOOP.  We are officially launching May 19th in alignment with World IBD Day 2012.  This is your invitation to learn more about ImproveCareNow and IBD; and to join us in improving the care and outcomes for all kids with Crohn’s & colitis.  Spread the word!

Email if you have a story to tell, a topic for our experts to blog about, or a question or comment share.  It’s always great to hear from you!

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