ImproveCareNow Ibd


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.


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.


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.]


Pre-Visit Planning

Doctor reviewing a patient chartImagine being a patient who arrives at the clinic and can really sense that the providers are ready to meet your needs!

Imagine knowing that your whole care team sat down a week in advance to review your disease course over the last six months, track down any missing lab results, and troubleshoot with colleagues to figure out why it’s been so tough to keep your disease in remission.  Imagine getting a call from the nurse a full week before clinic to ask what has been going on since your last visit and, as a result, the social worker is in clinic and ready to discuss solutions to the issues you are having at school.  Imagine the lab having your orders well in advance so that the collection tube that they have to use, but don’t keep stocked, is ready and waiting. This time you don’t have to wait while they run down to the supply room, making you late for school and your parents late for work.


The automated pre-visit planning tools that ImproveCareNow centers are now able to use will help make scenarios just like these a reality. Providers will have detailed summary information about their patients available at their fingertips when they need it...before the visit.  They will have a concise, printable tool that can be easily shared with the rest of the care team. Ideally, this tool will be used to guide conversations with parents and patients before they come to clinic so that they can be a part of planning their visit, not just passive participants in it.

The result will be more reliable, proactive and individualized pediatric IBD care.

[editor's note: submitted by Sarah Myers, MPH, RN | Lead Quality Improvement Consultant for the ImproveCareNow Network]


Jennie's Shield

Warrior Statue Silhouette and Orange Sky[Editor's Note:  IBD is definitely not always guts AND glory...sometimes it's just guts...and as Jennie puts it - disobedient guts.  Staying positive and empowering others to do the same is important to Jennie, but she recognizes that it's also important to stay real.  And it is a very real challenge to live with a chronic illness each and every day - physically and psychologically.  Read Jennie's musings about her most recent Gutsy Generation post, titled "The Shield".]

 

My blog posts usually focus on living well and living large with IBD - my goal is to always portray a 21-year-old finding her way in life with disobedient guts. Someone once told me that they admired my ability to be vulnerable, which at the time I was mortified by this comment. Vulnerable? What an insult! I thought. But now I think it is one of the nicest compliments I have ever received.

 

Why the change in attitude? Being vulnerable and exposing your scars - literally or metaphorically - shows that no one is perfect, everyone struggles, life is hard and it's about getting through and getting up. Every individual at one time or another will face anxious moments, sad moments, frustrating moments, and the like - it's normal and in so many ways it's what it means to be human. This is all the more important in pediatric chronic illness, when children with healthy psychology are confronted with incredible physical and emotional trauma. It's like buying a map to get to a different city but having the car break down on the way - it's critical to support mental health alongside physical health in flares and remission.

 

It's not that it's 'all in your head' by any stretch of the imagination, it's that it's impossible to tease apart psychological health from physical health - anyone who is nervous feels butterflies in their belly. The psychosocial issues of IBD warrant discussion and reflection and not just from the 'outside in' (i.e., doctors and researchers), but from the inside out, where patients can stand up and say - without shame or embarrassment - that they're struggling and need help. This is a way we can truly improve care now.


It's Good To Have A Voice

Good to have a voiceI’m a big proponent of the patient voice. It’s only natural for me. My second grade teacher actually nicknamed me “She Who Is As Loud As Thunder” for a Thanksgiving program. I was a loud kid, and any of my friends will tell you I haven’t changed much. IBD was a temporary knock down, but it didn’t take me long to get up. On my second day in the hospital after diagnosis, I was making a list of questions for my doctor. I didn’t have the courage to say them just then, but I was making the list and handing it off to my mom. I’ve always been opinionated and talkative, so becoming an engaged patient was an inevitability.

 

So my speechlessness took me by surprise when a professor asked my class (Literature & Illness - sounds like the best class ever, right?) to characterize what it means to be a patient in one word. It was the one word part that stumped me. I can speak my thoughts as a patient in blogs and essays and whatnot, but one word? Coincidentally, I was the final student to be asked, so I was able to listen to my classmates’ answers first. The word powerless came up a lot.

 

And it occurred to me - I’ve rarely felt powerless in my care. Lonely? Yes. Frustrated? I would have shouted that word at you when my Prednisone taper failed back in sophomore year. Scared? Here and there. But powerless? Rarely, if ever. Why? Because I’ve always been allowed to have a voice. My voice has never been shot down. I’ve never needed to settle for being quiet - and maybe that’s why I feel powerful in my care.

 

Having a voice has allowed me to feel comfortable with my treatment plan. It's allowed me to feel okay asking questions. Lists don't get passed over to my mom anymore. It's certainly made me feel prepared for the ultimate transfer to adult care in a couple of years. Most of all, having a voice in my care has given me the confidence to be comfortable with my life with IBD. I would say that's quite the opposite of powerless.

 

Take this week. I’m waiting in the mail-room to pick up my seven week supply of enemas, which came in a very big box. A very big box at least twice my width. And in college, a big box typically indicates (a) cool new furniture or (b) a very special care package from someone who loves you a lot. So, naturally, one of my friends got very excited when my box and I made it back to my dorm. And while I won’t deny that my mother loves me a lot, the contents of the box weren’t quite what my friend was expecting. The best part - after she figured it out, we had the greatest laugh. Two years ago, this might have been awkward. Instead, it was just a hilarious moment among friends. I felt comfortable enough to control the situation and make what easily could have been a negative situation into a positive one.

 

This is the reason I’m such a big advocate for patient involvement in care. There are the obvious reasons - it contributes to better adherence, psychosocial adjustment, and understanding of their disease. But I believe, most importantly, when patients are enthusiastically encouraged to join in the decision-making process - and given the resources to do so effectively - their confidence can skyrocket. I’m certainly a more confident young adult after having IBD for a few years than I was before, and I know my experiences with IBD have been a huge factor in my development.

 

Whether it’s feeling comfortable enough to laugh in my doctor’s appointments or laugh over my friend’s reaction to a box of enemas, it’s the same feeling that’s hit me lately. It’s good to have a voice.

 

Back to class, when it came my turn to define a patient in a single word, I chose changed. That’s really what it is and should be when it comes to the patient voice - not the loss of a voice, but a changed voice. A voice that needs to learn how to join in harmony with others to form a unified care team, but still a voice that can be heard loud and clear.


Better

I'm often asked if I believe ulcerative colitis has changed me for the better.

 

It's a tough question. I can't go back in time and see how my high school years would have played out otherwise. There is no me, as I am now, without ulcerative colitis.

 

Has ulcerative colitis changed me for the better? The simple answer is no. My disease has not changed me outside of my intestines. I am the same girl with a few extra pills. The more complicated answer is yes* - with the asterisk. It's based on a technicality. No, UC has not changed me for the better, but living with UC has.

 

It starts with another girl: one named Tara. She was diagnosed with Crohn's Disease during her second year of medical school. A few years later, Tara had chosen to pursue a career in pediatrics and found herself on the inpatient rotation at my children's hospital in April '08 - the month of my diagnosis and subsequent hospitalization.

 

You can guess how this plays out.

 

I was the "I'm okay" kid in the hospital. I felt so good on steroids and so relieved to have a name for my disease, my answer to most everything became standardized. Did I want a visit from the art therapist? "I'm okay, thanks." Did I want another blanket? "I'm okay, thanks." It was my standard answer, so if asked if I wanted to participate in a mentoring program, I would have probably answered predictably: "I'm okay, thanks."

 

Tara was the mentor this "I'm okay" kid never wanted. She stayed one day after rounds to share her story. A day past diagnosis, I hadn't yet started to think about what a future with IBD meant. Thanks to Tara, I never doubted my potential. From the get-go, I knew Tara's story. If she could continue to pursue her passion with IBD, my possibilities were equally endless. Until I met Tara, I didn't realize mentoring is not an emergency measure; it's a survival skill. Her confidence inspired my confidence.

 

Being a good mentor is not about knowing the "right" thing to say or the "right" moment to say it. There will be moments when you don't know what to say, and there will be moments when it's best to stay quiet and just listen. Being a good mentor is not about the story; it's about the storyteller. The best storytellers - and the best mentors - realize that every story matters - and every story can change another story for the better.

 

Until I met Tara, I never believed a single patient voice could matter. Clearly, as I'm here blogging, I do now.


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