LOOP Blog

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]

As Sami and I get super-duper-gutsy-psyched for the ImproveCareNow Fall Learning Session, we thought we’d put together quick snapshots of what an #ICNLS is like from our perspective. And voila, here they are, broken down into ‘Before,’ ‘During,’ and ‘After!

Before:

Sami: The excitement of planning and watching others plan. The Learning Session is a labor of love and - true to ICN's motto of "share seamlessly, steal shamelessly" - so much collaboration goes on behind the scenes in the weeks leading up to the LS. Despite the occasional stress, it's a blessing to be a part of such well-coordinated collaboration. My contributions to the LS are never just 'mine' - they've been shaped by a countless number of collaborators.

Jennie: Out of the mountains of emails and over-excited texts between Sami and I, everything was becoming real as plane tickets were booked and bags were packed. It’s kind of like coordinating a flash mob: dozens and dozens of people, all with the same passion for patient-centered care, group together from all corners of the country, lots of people doing one big dance. A lot of excitement, a smidge of nerves, and so very much gutsiness.

During:

Sami: Connecting with individuals representing all centers and roles within ICN. The PAC reps love meeting you - we want to know how we can best partner with you to meet your needs! I learn as much from casual hallway conversations and introductions at the LS as from the formal plenary and breakout sessions. One year ago, I didn't know my present PAC co-chair until I got off the plane in Chicago - so much can change in one year.
Tweeting, blogging, and sharing what I learn with you!! p.s. anyone can join the LS conversation real-time on Twitter using the hashtag #ICNLS.

Jennie: I remember my very first LS. It was as if I’d known everyone there forever – everyone was incredibly sweet and lovely and thrilled to have myself, Sami, and Jill (our amazing former PAC chair) there. I’ll never forget during the opening reception I was introduced to a few people, first names only, and it wasn’t until my head stopped spinning and I put two and two together that I realized I’d just met the biggest movers and groovers in ICN and the C3N Project. What struck me then was that they were just ordinary people who could hold conversations with me and I wasn’t stuck in some small ‘patient only’ box. The LS truly is an environment filled with excitement, respect, brilliance, compassion, and the unwavering attitude that we can all learn from one another (purposely ignoring the standard hierarchy of doctors versus patients/parents, it is doctors and patients/parents).

After:

Sami: Reconnecting and making plans for collaboration with those I've met over the weekend. The LS is "the charger" of ICN - it propels us through the next six months.
Working through the pages and pages of notes I'll leave the LS with - despite the work involved, the LS is magical because it allows you to come with scraps of ideas and gain the inspiration you need to transform those ideas into reality. Sleeping a little - and dreaming about the next Learning Session!

Jennie: There’s always too much excitement, too many possibilities, and so many new connections leaving the LS to get any sleep on the plane home! And that’s what’s so incredible and indescribable about the LS: we pass around and borrow ideas and fire from one another and there’s always so much to start doing! And importantly for patients and parents, we don’t become forgotten in the months between (we’re not simply a perfunctory part of the LS and then we’re dropped), if anything I’ve seen the commitment to meaningful patient engagement grow each time!

We can’t wait to update you after the LS!  But why wait? Learning Sessions have their own hashtag on Twitter so you can keep up with what's happening. Be sure to follow #ICNLS  – and we’ll be sure to tweet as often as we can!

J + S

After a morning GI appointment, my mom wanted to get a coffee before she took me to work. We drove to a local coffee shop and I decided to go in with her to grab a tea. We placed our orders, paid, and as we were leaving, I caught a glimpse of a customer sitting at a table and suddenly recognized him.

He was a clinician from my pediatric hospital – someone I had always thought of as particularly kindly, someone who had incredible bedside manner and a great comfort in speaking to me, and someone who I hadn’t seen since high school. Since I knew I would regret it if I didn't, I walked over and said hi. He promptly hopped up from his chair, reaching out his arms for a hug, and asked how I’d been.

It was this funny moment in which I was no longer a child or a patient but just someone else in a coffee shop - grown, with a hospital ID badge slung around my neck. He couldn’t believe how old I was – “How is it possible you’re done college?” – and grinned at me as I caught him up on my life. I had sent him pictures after I hiked Machu Picchu. He said he’d been to Peru since and thought about me, trying to notice any similarities between my pictures and the Peruvian surroundings. When I told him about graduating with double honors and wanting to pursue a PhD in clinical psychology, he looked at me, smirked, and said, “That does not surprise me one bit.”

He said he was going to a meeting with some of my other former clinicians, and asked if he could pass along the full update on me. Of course I said yes, feeling a little like a movie-star that people cared what I was up to. He will always be one of my favorite clinicians. He made me feel as a kid – and in our short coffee shop interaction – like a whole person with more to offer the world than an over-sized medical chart. I believed in myself not only because my parents were supportive, but because at my sickest I had clinicians like him who saw beyond the medicine to the person.

Monday was my first day back to work after a two-week hospital stay. I walked into my office, collected hugs from my lovely co-workers, and set about logging onto the computer and catching up on emails. The fabulous boost of seeing that clinician in the coffee shop stayed with me. At one point during the day, I saw a patient for one of our studies. He was a gentleman in his 70’s and was in the surgical clinic with his wife. Before I stepped into the room, I made sure to look through his chart and get a sense of who he was – not just what surgery he was having – so I could be engaging and receptive to him as a person and not solely as a patient. I had the loveliest conversation with him and his wife, going out of my way to be open, respectful, personable, and accessible. For example, in going over the study questionnaires, I wanted to be transparent and would turn the page around to show him and his wife what the pages looked liked, explaining what I was asking and writing down so that it didn’t seem secretive or hidden. He would laugh and noticeably relax, and as they saw me throughout the day, our relationship continued to grow so that when I see him after his surgery, I will be a familiar face.

This perhaps seems silly to write a post about. But this is what I hope you've read between the lines – the person inside the patient matters. You never know who’s sitting in front of you, because it’s never just a person of a certain age with a certain disease. Especially in pediatrics, your patients are like caterpillars waiting to become butterflies – you have future doctors and advocates and economists and dancers and athletes and poets in front of you. You have children who are blossoming into themselves, with diverse talents and abilities. As clinicians for children, you have a unique opportunity to build and strengthen relationships with them as they grow emotionally and physically. Your patients will never forget you – good or bad – but why not make the memories they carry with them about how much you supported them?

Because who knows, you just might run into them in a coffee shop one day.

Jennie

At the last ImproveCareNow learning session, a mentor gave me a piece of advice I've carried with me since: "As you go forward, no matter how much training you have or how brilliant you are, never assume you know best. Always listen."

On Saturday mornings, I work as a child life volunteer at Arkansas Children's Hospital, where I follow a variation of the same rule. I play an important role, but before I knock on each and every door, I tell myself that I come last. I am there to listen and try to make make magic happen; no matter how much experience I think I have, the kid is the expert. When I enter a room on the unit with my bag and my clipboard, I am a stranger. By time I leave, I'd like to be a friend - a goal not always attainable, but always set. I try to listen more than I talk. I pick up on the little things. Would she like glitter paint more than regular paint? Princess coloring book or puppies? Should I drop a sheet of stickers in my bag before I come back?

Saturday morning, I met Tyler (name changed) who didn't look like he was having the best day. He was eight and hanging out with his video games, but I've become pretty good at distinguishing bad day faces from good day faces - and this was a bad day. I crouched down by his bed and did a run-down of "my collection" in the playroom. With Tyler, his face lit up when I suggested paint, and so I knew what to suggest next. These are the moments where that goal of making a special connection becomes possible; with the right words and the right timing, I can make a hospital room glow. It's a kind of magic all its own, but one that anyone who works in a children's hospital should recognize.

"Hey Ty, I have an idea." He looked up. "I can bring you some paper to paint." He nodded. "But do you like to paint other things too?" He looked at me funny. "Well, sometimes, I let kids I really like paint my face." This is technically a lie - only one other kid has painted my face in the hospital (his hilarious doctor's idea actually) - but Ty didn't need to know that.

Ever seen a YouTube video where a kid is asked if they'd like to leave for Disney World in about five minutes as a total surprise? He said yes with the same enthusiasm. To be honest, I didn't expect quite such a dramatic response.

His lunch came right at that moment, so I excused myself to finish up my rounds - and encouraged him to eat up. I'd be back soon, and he had work to do then.

Thirty minutes - and several delivered board games and art supplies - later, I was back in Ty's room. "Ready, bud?"

I'm about to show you what happened next - but the best part, and what I can't adequately show you in a photo or even really describe, was how much of a kick he got out of it. He had this mischievous laugh that led one of the nurses in the hallway to peek her head in to see what was going on. When he finished his artistry, he sent me onto the catwalk - or out to the unit hallway, if you'd prefer to call it that - to show me off to the nurses. Finally, I was allowed to take a look in the mirror. (Thanks to my PAC co-chair, fellow blogger, and texting bestie Jennie David for the photo comparison!)

I asked Ty if I could hire him to do my make-up for Winter Formal, but sadly, his schedule has no openings right now.

I get to do this every week. I get so excited about it, which always leads to questions about why I volunteer with sick kids. How could I want to start my weekend in a children's hospital. Isn't it sad. Statements, not questions. I do not deny the sadness, but I have had the privilege of seeing so much happiness. I might come last, but the joy I have at the end of each shift makes me feel like I am first. My work with ImproveCareNow is remarkably similar. You know my name and you hear my stories, but I want you to know that I'm here not just for me, but for every patient - your patient. I represent, but I'm last. I know it's a sentiment that Jennie and I share, and the code by which we work.

I've stopped trying to guess what's ahead for me. My life is changing by the month these days. But I hope that, even as I grow and evolve into new roles, I'll always know how to spark the magic that can get the room to glow. I want to be brilliant as a physician, but more than that, I want "my kids" to feel brilliant.

A hugely gutsy drum roll for an exciting announcement! The Patient Advisory Council (PAC) has two new patient scholars! The Patient Scholars program was pioneered as an initiative to elevate the voices of selected members of the PAC for one full academic year.  Read more >>

We are thrilled by their outstanding applications, determined spirits, and amazing accomplishments - we cannot wait to continue to work with them to build the PAC and ImproveCareNow stronger day by day!

Without further delay, let me introduce our wonderful new Patient Scholars - Katherine & Tyler!!

Katherine: Hi everyone! My name is Katherine and I am incredibly honored and excited to have the opportunity to work with the C3N and ImproveCareNow communities as a patient scholar. I recently graduated from John Carroll University as a marketing and human resource management double major. I have a huge passion for the IBD community and extending networks of care, awareness and support in any way that I can. While I am technically not a "pediatric" patient anymore, I was diagnosed with Crohn's disease as a young teen and have had to navigate some challenging transitions in life while living with this illness. My involvement began about ten years ago around my time of diagnosis. Starting as a youth ambassador for CCFA in my hometown of Columbus, OH to becoming the Co-Chair for CCFA's National Council of College Leaders (NCCL) during college, I have truly found my passion for empowering fellow patients by sharing my own experiences and contributing to education and awareness initiatives. I hope to bring some new ideas and fresh perspective to this group and I'm excited to attend the fall learning session to not only see all of these creative minds and networks at work, but also to learn as much as I can as well as share my experiences with others.

Tyler: My name is Tyler and I’m a high school senior from Westerville, Ohio. I am very involved in my school; being a peer minister, student ambassador, and member of the ski club, math club, and Italian club. I play tennis year-round and for my school as well. I’m a little bit unique in that my family has moved around multiple times. As a result I was diagnosed at Riley Hospital for Children, was a patient at Children’s Hospital of Philadelphia (CHOP), and am currently a patient at Nationwide. I have had Crohn’s disease for 8 years now, being diagnosed when I was only nine years old. My disease has had a big impact on my life and has driven me to be active and make a difference in the IBD community. I have become very involved with ImproveCareNow (ICN), CCFA, and even started my own IBD fundraiser. The IBD community has a special place in my heart because I know firsthand the impact the disease has.   I am very passionate about making a difference and being a voice for patients. I have been a part of ICN for over 2 years now and am very excited to further my involvement as a patient scholar. It is such an honor to be a patient scholar and I am most excited to be attending the fall learning session.  I’m very excited to further my involvement this year as one of the patient scholars!

Welcome to Katherine and Tyler!!!!!!

J + S

 “Actually,” I asked. “Do you have a smaller tegaderm to put over my port?”

The nurse, who’d already begun to open the larger salty green colored package stopped, looking up at me, and asked another nurse in the room to grab a smaller dressing.