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.

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.

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

As the countdown to the ICN Strategic Planning Meeting dwindled, I began to pack my bag for my 30-hour trip to Washington DC. While I was truly excited to see my ICN family and my better half (cough cough, Sami), the summer heat pricked at my cheeks and I could already tell that I was worn out from working and my flare before my trip even began. But anyone who knows me will tell you that I’m incredibly (and sometimes stupidly) stubborn, and so I set my sights on Washington and boarded the plane.

Reuniting with Sami was wonderful! It did involve giving her the wrong directions to where I was standing at first – but we finally found one another in the airport and eventually made our way to the hotel. As an early birthday present, Sami had packed a ‘Twizzlers Party’ (note: my current flare leaves my diet restricted to only a few things, most notably Twizzlers and an assortment of candy). We dutifully ate the candy and caught up on life and all things gutsy - as good gutsy girls do.

Thursday morning found us up early, as the alarm went off playing a Taylor Swift melody (of course). We got ready and headed down to the beginning of the meeting, where a one pound bag of Twizzlers was waiting for us for a flare-friendly lunch (you know you’re loved when!). As always, Sami and I continued to be overcome with delight and excitement at how sincerely patients are considered and integrated into the strategic planning for the network. ICN truly wants to improve care this very moment for children and their families, but they know they need everyone’s input to do it. I think it’s fair to say that we’re all pretty thrilled with the exciting things that will continue to develop in the years to come.

But this post isn’t really about Washington DC or the ICN Strategic Planning meeting. It’s about being nearly 22, fresh out of college and into a ‘real person’ job, and very sick. It’s about my body not working the way I want it too and being simultaneously frustrated and determined. By the time I was ready to head back home, a mere 24ish hours after arriving, my body was throbbing with pain and the dryness of my mouth and quickened pace of my heartbeat informed me that I was quite dehydrated. The thought of the two plane rides home – getting into the airport at midnight and then having to get up early the next day for a doctor’s appointment and work – made me make my ‘this is ridiculous’ face. I just wanted to be home. Well, moreover, I just wanted to feel better.

On the flight from Toronto to Halifax, I found my aisle seat, 27D, where the window passenger was sitting with her multitude of bags. “Do you think there’s someone sitting in between us?” She asked, fumbling with her purse. I shrugged and offered a diplomatic response of uncertainty, suggesting she use an overhead bin to store some of her things. The pilot came over the PA to announce that the flight was totally full, every seat was taken, and to use space as wisely as possible. So much for some elbow room, I thought.

I sat and waited for the middle seat person to claim his or her seat. By this time the plane was largely full, and I was ready for every passing person to point to the seat and slither past me. And then she walked up to the row – she being Ellie Black, a Canadian Olympic gymnast who’s from Halifax. I sat up in my seat, suddenly my heart pounding not because of dehydration but because of my girl crush on this incredible athlete. She pointed to the seat and I jumped out of mine to let her in.

“I’m sorry,” I said. “But you are Ellie Black?” She nodded with a big smile. Of all of the Olympic athletes, I would recognize so few, but the fact that one sat next to me made me momentarily forget about my poorly working body and focus on her. She was kind and lovely and very sweet, happily chatting with me despite her 27+ hour plane journey home from Russia (where she’d been in a competition and taken home two medals). I sat there amazed, 1) that she was talking to me and 2) how incredibly resilient the body can be. It might not seem like it, given that I have no medals or Olympic memories of my own to share, but our bodies had something in common – they are super duper resilient. Hers might be able to do flips and turns while mine struggles with functioning, but ultimately both of our bodies can be pushed to do things most people don’t think is possible.

When the plane finally touched down in Halifax, it was midnight and Ellie and I both blinked awake, having falling asleep mid-flight. I pulled out my agenda book and sheepishly asked her to autograph it, which she agreed to without hesitation, addressing it personally to me. In her script writing, she scrawled, ‘Dream Big’, and handed it back to me, smiling. I thanked her profusely and safely tucked the autograph back in my bag.

Maybe the airplane-gods thought I needed a little pick-me-up, or maybe it was just plain ol’ luck, but whatever it was, it reminded me that even if my body doesn’t work perfectly, I am still a champion, a fighter, and a resilient person. And now compliments of the heart-warming and inspirational words residing in the back of my planner, I can carry that message with me wherever I go.

Jennie

This 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.

I’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

[Editor's Note:  Erin Moore is "Doin' it for Drew"!  Drew has Cystic Fibrosis (CF).  CF is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide).  It is a chronic illness - meaning until a cure is found, CF is forever.  Erin is collaborating with the C3N Project; exploring the creation of a Collaborative Chronic Care Network for CF.  This post was originally featured on Erin's blog - 66 roses.]

I arrive for our clinic appointment around 7:45am. The last time we were here was 3 months ago. Usually, we are ushered back to a room within 15 minutes of arrival. A nurse greets us shortly thereafter to review our medicine list and address any issues that we've been having. Just the other day he was coughing up a storm but seems to have gotten over it. Should I talk to the dietician about his diet again? His weight is up and his stools seem "normal" but I'm always anxious about his lack of interest in food. I wonder if an RT is available to talk a little bit about his airway clearance. I don't want to be a bother but I sure do think the airway clearance he had in the hospital this summer was more effective. I wish I knew what they were doing differently! 

Next up is the doctor. She asks how things have been going. Today? Great! Last week? I was a little worried, but the cough he had seemed to go away. There was that one day that his stool was a little weird but that got better too, not sure what caused it. And frankly I can't remember back farther than that. She checks him out and wants to review his labs since we are at his anniversary visit. His vitamin D is low, his breathing still sounds a little noisy, and a note that she has from his ENT seems to indicate that he may need another sinus surgery. She feels out whether I'd be open to a bronchoscopy at the same time. Maybe another CT is a better option.  When I talked to the ENT last month it sounded like things were going well? I guess I don't mind if they do a bronchoscopy while he's under for something else, but I remember huge discussion with other CF parents on Facebook about CT scans and all the negative effects of radiation and I don't know that I want to do that? I wish I could find that conversation! I ask questions about a game plan for if he needs IV antibiotics if we grow pseudomonas again, having read online about all different methods used for eradication but not knowing which is best and why. It's hypothetical at the moment because they haven't even swabbed him yet. I just have sort of a busy life and sometimes having a plan provides a sense of comfort for me. She suggests an action plan and I am mostly on board, except for the azithromycin because I saw a presentation somewhere that seemed to show compelling evidence against its use. I wish I could find that presentation to show her! I trust his doctor and want to follow her recommendations, but I have some reservations. I don't think either of us has time to get into this as I've already taken up more than my fair share of appointment time. We agree to wait for the results of the culture to decide a course of action.

Next up is the dietician. Lucky for me, he has a "weird poop" while we are there so she can look at it and provide her thoughts. This isn't what all of his stool looks like. I don't really know how often his stool looks like this - sometimes once a day, sometimes 4 times a day, sometimes once a week. We talk for a bit about enzyme dosing and the calories he's taking in, her offering suggestions for beefing up his intake and me adding them to the "notes" section in my iPhone, hoping I can get them down elsewhere before one of my kids deletes them by accident.

The social worker pops in to address some questions about starting preschool that I had mentioned to the nurse 2 hours ago. I had met with the Psychologist about a year ago to talk about his lack of interest in food, but never followed up, mostly because of both time constraints and cost. If only she could pop in and give me a couple of quick suggestions. But I have to go, we've already been here for almost 4 hours. While waiting for my discharge paperwork, a research assistant shows up to see if I'd be interested in participating in a study about I'm not sure what because my 3yr old is clambering to get out of that office. I agree anyway, get my discharge paperwork and fly out the door.

This summer, we were visiting family in Philadelphia and my son got sick. He was admitted to Children's Hospital of Philadelphia for a pulmonary exacerbation. Not a single morsel of information about him and his history with Cystic Fibrosis was available to the doctors at CHOP. Many phone calls were made between fellows from my personal cell phone to understand his medical history and doctors asked me the same questions day after day before we trusted and understood each other and hashed out what was going on in the days leading to our admission. I know that it was in Drew's best interest that we discuss everything about him ad nauseum, but it blew my mind that in this age of technology, there was no electronic medical health record that the doctors in Philadelphia could access to understand Drew to provide the best care for him quickly.

When Drew was a baby, we kept a diary of his formula intake and the corresponding output. We set up a nice little Excel chart and shared that with our dietician on a very regular basis. I credit that chart for his gained weight and reaching the 50th percentile by the time he was 6 months old and he has been able to maintain that to today when he is almost 3. I know that all patients aren't equal, but wouldn't it be great if that data, if our "patient reported outcomes" were cataloged somewhere so that we could share what we did and how it worked for us? Sure, I could take to the CF Mom's Facebook page and ask about what high calorie snacks work for their 3 year olds and hope that some of those moms are online and eager to provide some feedback. But once that question is asked and answered, it just simply vanishes into cyberspace. I cannot tell you how many times I've said, "I know I've seen that somewhere". Image the power of cataloging that data, those conversations, those findings. It can be used by patients, by doctors, by researchers and teachers. Just thinking about the power of that is what is driving me to stay involved and insist on nothing less.

I think you're seeing my point, a point that was brought out in almost every session I sat through at the NACFC this year. The information that we currently have on patients in between visits is limited. Filling those gaps would give us a more complete picture of health. It would help doctors to intervene at appropriate times, times when patients might not call because in their mind "its just not that bad yet", but doctors are able to identify a problem or a pattern that lets them know the direction something that's "not that bad" is headed. They would be able to more easily determine if certain therapies were actually making a difference through the combine use of passive behavioral and active patient reported data, looking at a real-time view of what is going on with a patient, not what they remember to tell you when they are in clinic. The registry could be enhanced by identifying day to day trends and commonalities in patients sharing mutations. And all of this data can be used by researchers and scientists to figure out every last detail this disease and find therapies that work for every one of us. From a parent's perspective, the C3N is what we need to make life easier and improve outcomes while we wait for our cure.

Mother to teenage son:  “Hey, have you taken your medicine yet?”

Son (playing video games): “I will in a minute!”

Mom (wondering whether it’s worth the fight):  “You know, you’re gonna move out in a few years and you’re going to have be able to do this without me telling you.  And you know you don’t want flare-ups if you can help it!”

Son: “Nope, you’ll have an alarm on your phone and you’ll just call me and keep nagging until I take it.  Can’t wait for that!” [insert sarcasm]

And, end scene.   Mom walks offstage slowly, imagining how many more times she’ll ask before he takes it, if he’ll ever fully be in charge of his body, maybe whether he’ll be living on her couch at 40….

Is this exaggerated?  Maybe.  But I know many families in this boat.  They don’t have emergencies, and they get a clean “Good job, no problems this quarter!”  during the GI checkup. The child has a good quality of life when it comes to school and sports and social time and… it’s because mom stays in charge. She’s in charge of the medicine, the questions for the doctor, all the IBD knowledge necessary to lead a good life.  She’s running this show!

How much should we push our teens to start taking charge and showing responsibility?    It’s difficult.  If we push too little, they don’t grow up.  If we push too hard, they may retreat and we'll keep doing everything anyway “because someone has to.”  And by the way, ‘Why wasn’t that last flare and hospitalization enough to make him wake up and start doing something about it?’