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.

Take Steps and Super Heroes

Alex8799 and his take steps team pictureThis past week I took part in the Cincinnati Take Steps walk for the third year in a row. Each year we design a new shirt as a way to come together as a team. This year’s team shirts were superhero-themed; the team name merged with the superman symbol. Seeing the sea of purple at the walk and all those superhero shirts got me thinking about my heroes and how they have helped me cope with my disease.

 

What makes someone a hero in my eyes?  They need to inspire me.  They should make me think beyond what’s normal and make me challenge the status quo.  Heroes change the perspective. They do not let limitations stand between them and what they want to do.  One of my heroes is Alicia Lang; she lived most of her life with Cystic Fibrosis. She was in the hospital for weeks at a time and half of her lifetime. Yet she always had a smile on her face and did not let her disease stop her from helping others. I met her at the Cincinnati Children’s Hospital Patient Advisory Council. She would roll into our meetings every month and you could not help but feel her presence in the room. Now the PAC meetings feel emptier without her smile. She lost her battle with Cystic Fibrosis, but her influence lives on.  She taught me that the tough times are the best times; it is a time for kindness, a time to step it up a notch, a time to smile, and a time to be a hero.

 

Heroes also inspire.  Jennie David and Sami Kennedy are two other inspirational heroes.  They inspire others by spreading their story.  They help others through their own fight by sharing their experiences; sometimes this is with humor (sharing opinions on what toilet paper is the best), other times sharing their experiences while going to college.  They have set high expectations for themselves and have made a lifelong goal of helping others with IBD. They have taught me that I can talk about poop as much as I want to, and that no matter how high the goal I can achieve.  They have taught me that, despite my Crohn’s disease, going to medical school is not out of the question; and that I am not going to accept anything less than a life as a pediatric gastroenterologist.

 

So why this blog about my heroes? Heroes are everywhere. They can be your Mom or your Dad, they could be someone that helps you at school or someone that you meet through circumstances that bring you together to fight a common cause.  In this virtual world, they could be a person you’ve not met face to face, but you admire from afar. Heroes are people you can look up to and can help you get through any situation. For me, when times are tough, I just think about all the people I know, my heroes, and those who may have it worse than me. I think about their situations, the experiences that they have shared, and I am thankful and mindful that my situation could be a whole lot worse. Every night I go to bed listening to Zach Sobiech’s song, Clouds, and I think to myself how I can live the next day to the fullest. How can I be a hero?

 

Everyone needs a hero so go out and find one. The hero you have always been looking for could be right in front of you.


Michael Seid, PhD

Michael Seid, PhDI’m a health care researcher interested in making health care work better for kids with chronic illness.  My sister has Crohn's disease and my daughter was just diagnosed last year with Crohn's disease.

 

Twenty five years ago, my sister was diagnosed when her intestine burst. Her bowels were so obstructed and inflamed, that they started leaking into her abdomen. After her first surgery, she found kind and wonderful doctors. My parents did everything they could for her. But her journey was rough. She ended up having three surgeries, a TPN feeding tube, losing all but 3 feet of her small intestine, and having way too much physical and emotional suffering. She never took her meds because she didn’t think they did anything for her. She felt completely alone and was convinced no one could help her.

 

Because my daughter is part of ImproveCareNow, her experience has been different. She was connected early on to other kids her age with Crohn’s. She learned how to track her symptoms so she and her doctor could determine that her meds were helping. And she collaborated with her doctor to figure out that Carnation Instant Breakfast helped reduce her fatigue. I’ve connected online with other parents for ideas about how to help and have shared this information with her doctor. Things aren’t perfect, but my daughter has been able to bear the burden of Crohn’s more lightly, in large part because of the way that ImproveCareNow has enabled us all to be more active partners in helping her stay healthy.

 

Taking ImproveCareNow to the next level is crucial.  I want to make a world where everyone can be part of the solution.  I intend to continue to work to make it easier for more people to make a difference for their health or the health of their children.

 

Michael


IBD and Skin Cancer

Don't Fry Day Logo Skin cancer is the most common type of all cancers according to the American Cancer Society. Check out their excellent infographic.

 

Skin protection and cancer prevention are especially important for kids (and adults) who are taking, or have taken, immunosuppressants (thiopurines as an example) to treat IBD – as the risk of developing non-melanoma skin cancer can be higher for them - according to this article by the American Gastroenterological Society.

 

The National Council on Skin Cancer Prevention has declared the Friday before Memorial Day is ‘Don’t Fry Day’ to encourage sun safety awareness.  As get ready to kick off the Memorial Day weekend, consider these tips to help protect your skin:




    • Do Not Burn or Tan

 

    • Seek Shade

 

    • Wear Sun-Protective Clothing

 

    • Generously Apply Sunscreen

 

    • Use Extra Caution Near Water, Snow, and Sand

 

    • Get Vitamin D Safely



For more information about Vitamin D - including what it is, how much you need and how to get enough - check out Vitamin D - QuickFacts from the Office of Dietary Supplements at the National Institutes of Health.  You can also check out our very first issue of CIRCLE, which featured an article on Vitamin D by Richard Colletti, MD - Network Director for ImproveCareNow.

 


Body Image & IBD

Having your body at the center of ongoing medical scrutiny is not the ideal situation in which to develop an individual and autonomous body image. We make room for scars and side effects, sometimes feeling as though who we are (and who we want to be) shrinks more and more. Developing a positive sense of self and body image is something every kid must face, but especially when it comes to IBD there is a role for everyone to play.

Read more

First and Last

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT, I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

Read more

Kicking Up Confidence

My lucky parents were blessed with a child who not only won the IBD lottery, but long before that diagnosis, had a severe reaction from eating a nut at age two. Growing up with a life-threatening nut allergy, I became accustomed to standing out from my friends long before my IBD diagnosis - but that is a story for another time. The point here is, I mastered the game of careful avoidance from a young age. Although I was not sensitive to the smell of nuts, I would take care not to even hang out in the same room as any. I was taught well that they were the enemy, and the farther away I stayed, the safer I felt.

 

So, you can imagine my surprise (read: horror) when, on my very first college campus tour, our guide announced that one of the distinguishing features of the campus was a large courtyard brimming with pecan shells. I stuck to the sidewalk when the group walked through the (admittedly beautiful) pit of possible death, trying hard not to let this unexpected development spoil a day that had been wonderful up until that moment.

 

I came home disappointed but determined. I returned for a second campus visit prepared. After two rounds of allergen testing (including literally walking into my allergist's office with a bag of pecans and asking that we rub them all over my feet), we confirmed that although I had not outgrown my oral allergy to pecans, I did not have a skin allergy. So, one year later, I returned to that pecan court - and despite the March cold - donned flip flops and stomped all around that thing. My heart was racing, but I had to prove to myself that I could do it.

 

Pecan Court as described by Sami I was literally walking, kicking, and dancing through a Pit of Things that Could Kill Me.

 

But I did it. And nothing happened.

 

Three years later, I walk through that pecan court at least once a day. And sometimes, I feel a little surge of victory. I can do what I once thought I couldn't do. Other times, though, I feel a pecan shell slip beneath the sole of my shoe and rub up against my foot - and despite the overwhelming evidence that I won't react - I still look for a hive to pop up. I am safe - but I can never erase that twinge of fear and doubt.

 

IBD is similar in some ways.

 

I have been in remission for over two years. But in that moment I see a red-tinge on the toilet paper, my mind inevitably begins to race off in directions I know it shouldn't go. I'll think, 'This is it. This is the first drop, and tomorrow there will be two drops, and then in a week there will be red all over the bowl, and then I will be on Prednisone, and I should go freak out now.' I always manage to regain my common sense by the time I finally flush that terrible industrial grade skin-irritating toilet paper away, but the panic never fails to set in for just a moment there. Even now.

 

I know remission is not a cure, and thus I am always ready to lose it. When I feel an abdominal cramp come on, I know I should go straight to the conclusion that it's just my menstrual cycle. That's the most likely conclusion, and for three years, that has been what it always turns out to be - but my mind never goes there first, even now. Perhaps it's a coping mechanism for when the day does come that I slip out of my remission - as if I think I'll find comfort in saying, 'Well, at least I knew this was coming.'

 

Living with a chronic illness, I am always walking through a pit of danger. Right now, I'm protected, my treatment is doing its job, but I know my armor is unlikely to last me forever. My 6mp probably won't hold off my immune system until I'm old and gray, but in the absence of a cure, my disease isn't going anywhere. Even my medications could hurt me one day.

 

But, just like with my nut allergy, there are things I can do to protect myself. I can take my meds on schedule. I can check in with my doctor every three months. I can be alert to my body and bowel movements so that I catch bumps in the road before they progress to flares. I can avoid behaviors and foods that might trigger problems, and do my best to keep my body healthy and rested.

 

It's important to know what I can't do, but it's equally important to know what I can do. I can walk through that pecan court. And, with a touch of luck and a lot of cooperation as an engaged patient, I can be an IBDer who hangs on to that remission for what I hope will be a good long time. It's important to know where I stand, but even more important to walk with confidence through wherever I am - whether it's the sidewalk or a courtyard of pecans, remission or a flare.

 

IBD was certainly unexpected and (if I let myself become preoccupied with all the what-if's of my disease) can be unnerving, but I am walking, kicking, and dancing through it.


Making the Team

Patient Scholar Sami KennedyIn October 2012, I arrived wide-eyed and a little afraid at my first ImproveCareNow Learning Session. I remember walking into the big room with my luggage and taking in the scene - so many brilliant clinicians and researchers I admired and greatly respected all in one hotel for one weekend. And here I was, too. I am nineteen - and so to many, I'm just a kid still. I didn't know what to expect, but I did expect to listen more than I spoke. After all, in a room full of some of my personal heroes, I was "just a patient."

 

As the inaugural Patient Scholars, to say that Jennie and I have been given the opportunity to live a dream would be an understatement. For a girl who expected to listen far more than she spoke, my voice has been valued more than I could ever have hoped or imagined. Jennie and I are just two patients - but to think about how many patient voices can and will resonate at future Learning Sessions excites me more than I can express. It's so clear to me now that "Just a patient" is not a concept that exists in ImproveCareNow.

 

On April 12th I returned to Chicago for the first Learning Session of 2013. Gutsy 2 (myself) may have been without her Gutsy 1 (Jennie) - but together through the art of virtual communication and the help of some friends, we didn't let a sudden strike of illness take away our weekend of hard work and joyous celebration. We shared in a presentation on self-management support and treatment adherence. We opened up about our stories and the accomplishments of the PAC (Patient Advisory Council) over the past year. We were inspired by stories of progress and achievement coming from all around the network. I even learned a new dance - the PDSA - aptly named after a fundamental quality improvement measure - because QI is really at the heart of making care better and thus rightfully deserved a spot at the heart of the celebration! (I expect PDSA to go viral on YouTube any day now.)

 

For a moment, when I landed in Chicago, I felt that familiar sudden shock of fear. For just a moment, I felt little again, like I was "just a patient" with a lot of ideas on the fringes of a great big community. But, this time, when I entered the conference room, I knew I belonged in this community. In one year's time, it's my hope that more patients will have felt the joy of this kind of welcome.

 

Five years ago today, I was waking up early - colon all cleaned out - and driving to the hospital with my mom, neither of us knowing I wouldn't be going home that day or that a whole new world was about to welcome us. Six months ago, when I arrived in Chicago for my very first Learning Session, I couldn't have even imagined myself standing in front of such a brilliant crowd and sharing my story - a story that only just begins with a diagnosis and hardship - on the level I did last weekend. Today, I can't imagine what comes next - but I know I'm humbled to have a voice that can share in the learning. I am eager to pass on the torch of leadership to the next Patient Scholars - because we all have stories, and many of the stories I heard last weekend touched me deeply and reminded me of why I do this.

 

I do this because, right now, another young girl and her mom are driving to the hospital - and they don't know what comes next - but I do.

 

That young girl will get better. And maybe, if we all reach our hands out together to say that everyone can make a difference and is valued on our team, she'll be able to help change care for the better for the next girl with IBD.

 

Like any good team, we are more than the names on the backs of our jerseys when we unite.  In this Network we are more than the names we go by: patient, parent, researcher, clinician. I am so proud to have a jersey on the ImproveCareNow team.

 

Together, we have quite the winning streak. And one day, I really do believe that we will achieve that cure, together.


A Brief Interlude - And an Alcatraz Bathroom

Sounds like the opening of a joke, doesn't it?

 

It's not. I'm going to start with a brief interlude in which I brag about my kids.  I will end with the tale of a bathroom.

 

Tinkerbell, Jedediah and Elly Mae each have some talent.  Tink and Elly Mae each dance. Jedediah woke up one morning and wanted to act, and he's got some chops.

 

Sela and I, together, have five left feet.  The only person I know who has a voice worse than Sela does is me.  So where they get this talent, we don't know.

 

In the last week, we've been to a recital for Elly Mae's dance team, an awards banquet for Tink's dance team and several performances of Jed's play.

 

Sela and I are extremely proud of each of them.  They selected activities that were important to them, and they worked HARD and practiced.  A lot.  There are few things that have given me as much joy as a parent as seeing them get excited about an activity that they chose, as opposed to the requisite soccer, etc. that every kid is forced to try.

 

We'll talk about Tinkerbell's foray into horseback riding in some post in the future.  No idea what that was all about.

 

As Buzz once said (and I'm paraphrasing), "To the bathroom, AND BEYOND!"

 

Jed's play was at the Junior High School.  Which is convenient because Jed's a junior high student.

 

Being at the Junior High School necessitates going to the bathroom in a junior high school bathroom.

 

With me so far?

 

It shouldn't surprise you to learn that boy's junior high school bathrooms smell like junior high school boys.  So I was put in a foul humor upon entering.

 

I'm also fairly convinced that the first casualty of school budget cuts was functional toilet paper.  This stuff was the worst of the industrial bad.  Wow.  It was so bad that my butt audibly complained.  Seriously.

 

Despite all of that, the worst part was the sink design.  Picture this.  Two side-by-side sinks.  Not a problem. Where were the soap and paper towel dispensers?  To the left of the sink on the left, of course.  You couldn't get to them from the sink on the right.  You might as well have had one sink since only one was usable at one time.

 

Don't give me any complaints about space constraints.  There were options.  A myriad of options.  Between the sinks for the soap dispenser?  Anyone?  Anyone?

 

At least I only had to use the thing a few times.  Jed's gotta use it all the time.



Performance Feedback

A+ graded on paperTo improve at anything – be it your grade in history class or your best time at the 50-yard dash - you need to know how you’re doing. This can come in the form of a grade or where you finish in a race. Without this type of feedback, you can never be sure if you’re on the right track.

 

At ImproveCareNow, we want to provide the best pediatric and adolescent IBD care for all of our patients. To make sure that we are on the right track, ImproveCareNow centers receive regular feedback in several key areas related to IBD care. This information helps centers know how well they are reaching their goals and helps them make progress in areas that need improvement. (Click here to see an example of an ImproveCareNow Key Clinical Measures Report.)

 

In addition, ImproveCareNow centers have access to new tools that allow patients to provide feedback to the individual doctors and nurses who provide their care between visits—they want patients to be activated and ready to participate in their care.

 

Additionally, with the introduction of automated pre-visit and population management tools, doctors and nurses can be better prepared for visits. They can pinpoint areas that need attention and learn from the care provided by other providers at their center. The more timely the feedback, the sooner our providers can address aspects of your care.

 

We are excited to provide tools that help your doctors and nurses do a better job helping you achieve improved quality of life and better health!

 

[Editor's note: This post was contributed by Theresa Todd, MPH, MA.  Theresa is the Improvement Coordinator for Gastroenterology at Nationwide Children's Hospital in Columbus, OH and it is her responsibility to help the IBD team with quality improvement goals.  Theresa has been part of the Nationwide team since July 2010.]


Built by Veracity Media on NationBuilder