LOOP Blog

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My daughter asked me to write an honest retrospective on how she wasn't always like how she is now. The changes happened on her terms, in her time, on her own. And, as well as I know her, even I didn't see it coming. I view that as the “even better” part.

It was a Monday and I had a migraine.

The hospital room was grey and muted.  I was on my side with my eyes closed, trying to wish away the headache. A suave, slicked-hair doctor – the new GI for the week – strode into the room, the curtains whooshing slightly with his arrival, followed by his resident, and my mother stood up from her chair. They all stood at the foot on my bed, a semi-circle, as I pulled my legs closer to me and rolled onto my back.



 

I’m delighted to announce that on Tuesday December 17 the Patient Centered Outcomes Research Institute (PCORI) gave two major awards that will enable us to advance our work in ImproveCareNow.

One award is for $1,000,000 over 18 months for ImproveCareNow to create a Patient Powered Research Network (PPRN) to develop tools to boost patient and family engagement and implement patient reported outcomes.  The Principal Investigators are Peter Margolis, MD, PhD and Michael Seid, PhD at Cincinnati Children’s Hospital, and Richard Colletti, MD, at the University of Vermont.

The second award is for $7,000,000 over 18 months to develop a Clinical Data Research Network (CDRN) called the National Pediatric Learning Health System, initially consisting of 8 major children’s hospitals (all participating in ImproveCareNow) plus 3 improvement networks, including ImproveCareNow.  The Principal Investigators are Christopher Forrest, MD, PhD at Children’s Hospital of Philadelphia, and Peter Margolis, MD, PhD.

These awards are the results of the outstanding work of everyone participating in the ImproveCareNow Network, and in particular those who helped to prepare the extensive proposals for these awards.

Congratulations!  This is a great opportunity for us to continue our innovation, discovery and improvement!

Richard B. Colletti, MD

Network Director, ImproveCareNow

Why?

I ask myself this question as I cry at night.

Why is my child sick?  Why has he been diagnosed with this disease?  Why so young?

Why?   

I ask his doctor this question at his appointment.

Why does it not get better with treatment?  Why so many medicines? Why surgery?

Why?

I ask this question to God as I pray.

Why does this child suffer like this?  Why does he have this cross to carry? Why him?

Why?

No one will ever forget the day that their child was diagnosed with Crohn’s disease or Ulcerative colitis.  From that point on, everything becomes “before and after.”  When you have a sick child, all else seems to stop.  Your world, your life, your very being centers around helping him or her; all else falls to the side.  At least it did in our home when Jimmy was diagnosed.

My name is Liz.  My husband, Jason, and I have three sons.  Our youngest son, Jimmy, was diagnosed with UC in October of his kindergarten year.  We had a very rough year and a half trying to get him into remission.  Currently, he is a happy, healthy eight year old with the help of Humira.

Now our goal is to build up what was lost during those years of active disease.  We are checking off delayed milestones – riding a two wheeler, trying sports, as well as physical milestones like delayed growth and loss of those precious front teeth.  These diseases affect the whole person and the whole family in ways it is hard for those who have not lived it to comprehend.  It is our role as parents to help shift the focus off of why and onto how - how do we build up our children?

In October 2013 I attended my third ImproveCareNow Learning Session as the parent representative for Riley Hospital for Children.  It is the development of these “how’s” that inspired me to get involved with ImproveCareNow and with my care team at Riley.  Not only do we want to understand how these children get this disease and how to treat it, but I love that ImproveCareNow focuses on other how’s - like how to achieve a higher remission rate, how to increase adherence and how to transfer children successfully into adult care.

At the Fall 2013 Learning Session there were twenty parents in attendance.  As pre-work for the session, the parents were asked to answer two questions:

What is your vision of improved care?

What does pre-visit planning with your child mean for you?

The objective of asking parents to answer both these questions, and our attendance at the Learning Session, was to give perspective on the whole picture of these diseases.

[Editor’s Note: Liz D is the mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]

Have you ever felt like the Internet holds a vast amount of both the scariest and most wonderful information all at the same time?   Do you feel like when you’re searching for “good” news, hope or inspiration the only things you find are stories of darkness or bad news?  Well, there is a brand new place to share inspiration, hope and great stories from people just like you and me - who live with IBD.  This website also has a collection of trusted resources to visit for the most up-to-date information on Crohn’s disease and ulcerative colitis.

It’s called Empowered by Kids! Here is the link: http://empoweredbykids.com so you can check it out if you haven’t already. On it you’ll find stories and videos by kids and parents from around the country and the UK sharing their amazing IBD journeys (my story was just featured on December 8th). These  bring to light the many wonderful things these families have done to make a difference in the lives of others with IBD.  Empowered by Kids has given these patients and family members a place to share their voices, and to share the many ways we all can help make things better and easier for others with IBD.

Think of the number of people that could be impacted by each story! Wow, doesn’t that make you want to send your story in?  Wait, there's more!  Some of the stories on this site were collected and printed in a book especially for newly diagnosed IBD patients and families – to remind them that they are not alone. The Book of Hope is now being given out at ImproveCareNow centers. It’s all part of the amazing work happening within the ImproveCareNow Network. Together, we are making a difference for all patients and families impacted by IBD.

If you know someone who would like to share their story on Empowered by Kids, here’s the link to the online contact form http://empoweredbykids.com/our-mission/contacts. They can also send an email to [email protected] and share their story that way too.

[Editor's note: Tyler Moon is currently a C3N Project Patient Scholar and member of the ImproveCareNow Patient Advisory Council. He asked us to share this post on his behalf.]

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.

Flare. It’s a common, yet dreaded, word used by IBD patients.

You would think that being a Crohn’s patient for nearly ten years, it would be a word I’d be quite comfortable with.   Or at least a word that I use when describing my medical history and disease symptoms to others…but, ironically, it’s not.

I’ve always been one to downplay the severity of nearly everything going on inside my disease-stricken body.  I’m sure many of you know just what I’m talking about.  These responses may look all too familiar to some of you…

“Today was a relaxing day…I got some good reading done!”  (While this is true, I strategically left out the part about doing 90% of that reading while in the bathroom.)

“Yes I had surgery last week, but no worries it was pretty minor”.  (Is there really anything minor about months and months of recovery time?!)

Or, my personal favorite…“Yeah, today was a good day!”  (Did I mention my “day” began when I was finally able to drag my fatigued body out of bed at 4 pm?)

While I pride myself on having a positive attitude and outlook most of the time, I’ve found that this positivity is also sometimes a warning sign that simply says one thing…denial!  My ability to seemingly immediately emphasize these “silver linings” is a way in which I deny what is actually going on with me to others, but more importantly, to myself.  Because let’s be real, who really wants to admit the reality of all that a flare entails!

And that, my friends, is why the word “flare” is not a common word in my vocabulary and I assure you it is not because I have been in remission for most of, or even half of, the last ten years.  It is because I don’t want to admit it.  For some reason, in my mind admitting this kind of thing threatens my ability to come up with endless silver linings and possibilities.  However, seeing that I have spent the majority of my time over the last four months between my bed, the bathroom, and the couch, I think it is safe to say…I am in a flare.

Saying those simple words is incredibly humbling for me.

Going from being a super independent 20-something to living back at home with my parents, needing help with the most basic of tasks is a huge lesson in humility.  I like to think that I can do it all, I can handle it.  And most days, that is absolutely true.  But sometimes, sometimes doing it all on your own isn’t necessary, and sometimes is just simply isn’t possible.

It is times like these in which I have to set aside my pride and rely on the support system around me to keep me going.

I must swallow my pride enough to reach out to the friend or family member that has said “let me know if you need anything” to say, I just really need someone to do a few loads of laundry for me, or could you come over this afternoon just to keep me company.

Yet one of the most humbling experiences I’ve had while being in a flare is that, quite simply, people can have a way of surprising you in the most unexpected ways.

Maybe the surprise comes when waking up to a chai tea latte (soy of course J) sitting on my night stand left there by my best friend stopping in as I was napping.

Perhaps it occurs when opening a package full of get well letters from a class of third graders, covered with drawings of the most adorable penguins because their wonderful teacher, and my dear friend, told them they were my favorite.

Or maybe it’s receiving an email from an IBD friend that simply says hey, I met another Crohn’s patient who is having a hard time and I think you’d really be able to help her.  And in that sentence, those few simple words, my sense of purpose is restored.

Humbling.  All of it is so incredibly humbling.

So here’s to being thankful for so many lessons in humility, and hoping that remission is right around the corner. And if it’s not, maybe it’ll be around the next one.

Yearly flu shots are encouraged for kids with IBD, and those who are closest to them, because the flu can be very serious in someone taking immunosuppressant drugs or who has a chronic illness.  Also, because the flu is a viral infection it can stimulate the immune system and could cause a flare.

For many reasons. But one that comes to mind right away is that we didn't get to opt-in to this disease. We are in - all in. Over the course of this journey, we have had to learn to navigate many paths. We've experienced phone call processes, waiting rooms, treatments, and planning around a disease that at times consumes our thoughts and actions. We didn't navigate these paths for a higher purpose or with greatness in mind. We did it because we had to. And on some many occasions, the work of navigating was hard. We found ourselves exhausted by the tasks and fearful of the next step.

And then suddenly, there was this opportunity. One that I could choose. One that was organized around the idea of improvement.  A place to use my insight and experiences - what had become my expertise as a parent of a chronically ill child - to add value and depth.  Because, you see, I NEEDED to have a place to use this knowledge I now have. I desperately wanted my work of navigating and fighting to matter, not just for my son...but on a larger scale.

The first time someone on my team asked my opinion or my thoughts...the first time I came to a Learning Session and someone asked me to weigh in on a conversation, our journey became easier...because it was needed.

Jennie David and Sami Kennedy are co-chairs of the Patient Advisory Council (PAC), having taken over for the group’s founder and former chair, Jill Plevinsky. The PAC is a group of young, passionate and motivated patients with IBD who draw from their own personal experiences with chronic illness to educate and enlighten clinicians, researchers and other collaborators on how to design health care innovations that are making it possible for patients (and families) and their care teams to communicate more meaningfully with each other, to work together to investigate lifestyle changes that might have an impact on health and to truly share in decision-making about care – with the ultimate goal of getting more kids healthier, faster (and keeping them healthier longer).

Sami and Jennie – affectionately known as Gutsy 1 and Gutsy 2 or Jami – are not new to us. They have been active members of the PAC since early 2012 – when, without realizing it, they ‘jumped on the fast-track to super high-level engagement’. Since joining the PAC they have been engaged with ImproveCareNow and the C3N Project – and are well-known for their stirring contributions to LOOP.  Recently their role has deepened as they have been co-developing educational content and delivering presentations at Learning Sessions (our Fall 2013 Learning Session was approved for a record 14.5 CME and 15 CNE credits for eligible participants), participating on innovation teams and engaging with centers 1:1 to encourage patient involvement network-wide. They do all this on top of already full schedules – because they know, first hand, how transformative this work is.

It is transformative not only for ImproveCareNow and the C3N Project – which are collaborating to change the face of chronic illness care through innovative engagement and self-tracking approaches like the PAC and Passive PRO – but also for the patients themselves. As Jennie and Sami explained at the Learning Session earlier this month – “we weren’t always like this”. Starting as young kids getting handed diagnoses they didn’t ask for – Sami and Jennie have transformed into outspoken patient leaders; mentors and advocates for others living with IBD. It is their hope that many more will join them and that together – with a strong, sustainable culture of patient engagement through the PAC - they will continue to inform, educate and co-design a better way to care – one that takes into account the ‘person inside the patient’ and embraces the unique knowledge and perspective (and yes, expertise) that each patient brings to the table.

Here are Jennie and Sami’s reflections on ImproveCareNow and next steps for the PAC following the Learning Session

As patient advocates, there is something wonderfully refreshing about ImproveCareNow's Patient Advisory Council (PAC). It is unique in the sense that from the network leadership, all the way down to each center, the work of the PAC is celebrated and integrated in ways that outshine perfunctory patient involvement. PAC members are not involved because we have to be, we are involved because a) we want to be and b) care teams want us to be.

Enthusiasm and sincerity are synonymous with ICN, and yet the network is still an exemplary role model for movers and shakers in the pediatric chronic illness world. And so it seems only natural that the PAC emulate the inclusive, collaborative, out-of-the-box thinking as we build our council into an action-oriented, accessible group of patient advocates who actively engage in co-designing health care innovations, in brainstorming new and better ways to engage more patients, and in supporting the incredible efforts of everyone in the network.

The PAC strives to be a thoughtful and accessible resource for ICN care centers - as mentors to patients all the way through to colleagues in research. Over the next six months we plan to strengthen the council in the following ways: firstly we aim to develop and pilot, with the help of several centers, an effective recruitment strategy to welcome energetic and passionate patients into the PAC. Secondly, we believe it is important to create a community and culture of engagement and ownership amongst our PAC members. This is both to ensure members of the PAC are empowered by their experiences and that the council continues to grow and sustain itself. To that end we believe we must develop a sustainable succession plan.

As the co-chairs of the PAC, we remain extraordinarily humbled and thrilled by the endless encouragement and opportunities we have been afforded, and are admittedly a bit blinded by the spotlight. Nevertheless, we are honored to serve as patient advocates and work as part of this incredible network. As always, we will encourage you all (until we're blue in the face or there's a cure for IBD, whichever comes first!) to email us with questions, comments, suggestions, or anything you can think of! Like we said at the Fall Learning Session, we want to be your resources, your cheerleaders, your brain-stormers, and your colleagues.

You can always reach us at [email protected]