Stay in the LOOP!

Want to get updates from ImproveCareNow's blog? Sign up here and we'll email you the latest posts from our community.

By clicking submit, you're certifying that you're 13 years and older and agreeing to ImproveCareNow's terms & conditions.

I've been lucky.

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.


How I live with IBD

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.


Story of Self | Jill Plevinsky

Jill Plevinsky 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.


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.

 

 

Read more

Story of Self | Noel Jacobs

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.

Read more

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.


Built by Veracity Media on NationBuilder