IGNITE - IBD is a marathon AND a sprint

Inspiring, honest and motivational. Those were the words used to describe IBD parent, Ildiko's #IgniteTalk. In it she reminded us all of the critically important and unique perspective that parents and caregivers of young people with IBD bring to the discussion. She asked us to remember that while we collaborate on the big challenges that IBD presents, there are also small things we can do to make a difference right now (like watching our language). And she issued a call to action for us to work together to make truly meaningful progress in outcomes for kids with IBD and also to really believe that radical, transformative progress is possible.

Be inspired by Ildiko's #IgniteTalk 🔥

My husband and I were standing on a balcony overlooking the idyllic 7-Mile beach in the Cayman Islands, my kids relaxing on the hotel beds a few feet away. My 9-year-old daughter was mesmerized by an infomercial. It was 2017, but I can replay the scene in slow motion. A nurse had called and said: “Calprotectin is over 2000, where shall I call in the Pentasa?” She was so matter of fact. But that was our moment of diagnosis. And, as you can tell five years later, I cannot adequately describe the weight of that moment. It was the most profound grief, heartbreak, shock, terror, and isolation I had ever felt.

My daughter was (and is) an otherwise healthy, active, bright, very strong-willed, and funny then 3rd-grader with no prior medical history. My son was in middle school. My husband and I were busy professionals who had recently relocated from to the US from Canada. At the time, I was Senior Vice President & General Counsel at a large global pharmaceutical company. I had just finished Wharton’s executive education program. But at that moment on the balcony, the trajectory of my life changed. In that moment, the only thing that mattered was her well-being and her future. I hung up and pretended, as mothers do, that everything was fine – that we were there to enjoy our vacation. We went swimming out on a sandbar in the open water with terrifyingly large stingrays where I planted a big kiss on one because our guide had told us that would bring good luck.

Just a few weeks earlier, we had made an urgent appointment with our wonderful pediatrician when, during a seemingly ordinary winter virus, my daughter had blood in her stool. A few days later we were blindsided to receive a call from her doctor that the Celiac panel had come back positive “but”, she reassuringly told us, “the ESR is normal so the good news is she doesn’t have IBD.” One GI referral and appointment later, with additional tests done, we were given the very good advice to keep our vacation plans, feed her lots of ice cream, and told they would call us. That was the call on the balcony.

As veteran parents of kids with IBD educated me: “IBD is a marathon not a sprint.” That first year or so after diagnosis, it felt like both.

We were in near-constant crisis management mode, but also, as importantly, we were trying our hardest to model normalcy and even fun for the kids. I had so many questions about IBD and honestly so many unsatisfactory answers, including many shoulder shrugs at our appointments. So, I used my days and many sleepless nights to embark on a self-study curriculum of all things IBD. If you’ve written a paper, I’ve probably read it. I think we are lucky to be living in a time where motivated patients and caregivers can really learn any subject, including IBD. And I view this as a really good thing, Dr. Google tropes notwithstanding.

But back in 2017, and I am going to be brutally honest here, I was surprised how little was understood about the pathogenesis of IBDs, how treatment approaches were largely trial and error, how much we relied on indefinite immunosuppression, how relatively common surgeries still were, how modestly effective our therapies were, especially for endoscopic remission, and especially longer term. That’s a hard thing to see as a parent. I desperately wished then (and still do) that modern medicine would roll up its sleeves, deeply investigate every child as an N-of-1 and bring my daughter and all kids fully back to their former health.

All in all, though, we’ve been incredibly fortunate: we have found best-in-class care, thoughtful “shared decision-making”, and my daughter has handled everything with stoicism, maturity, resilience, and even wit. She will sing the Entyvio commercial jingle and yet be wise enough to ignore the risk statements. She started high school this year, is turning 15, runs cross-country and excels at Science Olympiad. She has a great quality of life. And she wants to be a doctor, possibly a pediatric GI, so please look out for her in a few years.

As a parent, I cannot be satisfied with the status quo.

I know too many patients and parents who are struggling. I hear from parents every single day that their hearts are breaking for their kids. And, even in the better case scenarios, we live always waiting for the other shoe to drop. All parents worry about their kids, but IBD parents are in a persistent state of worry and PTSD, even in remission.

We worry about our other kids. We have endured that special torture of seeing your child in pain, suffering, and not having a reliable path or timeline to make them better. We also have to learn to navigate a strange new world of care, learn a new “IBD” language, advocate for our kids, and not lose our own mental and physical health in the process. This is exceedingly hard stuff. So please give parents grace, maintain our trust, and listen to us because ultimately, we are experts in our children.

I thought it appropriate to quote Queen Elizabeth II: 

“Whatever life throws at us our individual responses will be all the stronger for working together and sharing the load.”

This quote really reminded me of ICN. You are all a self-selected group of improvers, by definition not satisfied with the status quo. And you’re all working together collaboratively as a network to improve care for our kids. And that means everything. This is why I agreed and am truly honored to co-chair the Parent and Family Advisory Council with my co-chair Heidi.

As parents, we are here to present a unique and critical perspective, to ensure we are focused on what really matters, and to use our voices to make improvements both big and small.

For example, I strongly support the CREATE™ registry and will continue to do whatever I can—and we can— to get it off the ground. 

I also have a challenge for the community, from parents, to adopt widespread utilization of non-invasive monitoring tools, like point of care intestinal ultrasound, where clinically appropriate.

We can also improve in other areas parents talk about a lot, like mental health and diet. In addition to access to high quality services, there are simple things we can all do that help. For example: thinking about the language we use in front of kids. The mind-body connection is very strong. We can avoid words like “incurable”...IBD isn’t incurable, it just hasn’t been cured yet. And for diet, we can stop talking about diet and food as being “restrictive” and “difficult”. Everything about IBD is restrictive and difficult. Active disease is restrictive and difficult.

Diet is the safest and most effective adjunct therapy we have. It has been a cornerstone of my daughter’s therapy for 5 years, it’s what helped her turn a corner when she was non-responsive to steroids, prevented further hospitalizations, and maintained remission for long periods with a really high quality of life, together with medications. 

The diet-microbiome-immune system interaction, and the emerging evidence of the role of the microbiome in the efficacy of our existing therapies should not be ignored, and we shouldn’t wait for perfect studies to utilize these tools today. The pediatric community has always led on this issue, which remains, in 2022, parents’ and patients’ #1 question.

Stepping back from specific areas of potential improvement, there’s kind of a more general philosophy that I want to talk about. We view every IBD patient as a puzzle, and what parents desperately want is your help to put the individual pieces together for the whole child. That may include specialties outside of GI. Every patient treated as an n-of-1 study, as an opportunity to think and to be intellectually curious, to gather objective and subjective data, to learn, to make connections and to formulate hypotheses from which we can all learn and improve.

When I think back to that day on the balcony in Cayman, I couldn’t have imagined that I would be standing here today. I wouldn’t have imagined how my entire professional life had actually been preparing me for what was to come. I know from experience that every field has dogma and biases that need to be bravely challenged and barriers that need to be systematically addressed. I also know that complex problems, like IBD, can be broken down and that, with the right talent and collective will, every problem is solvable.

My call to action is for us to work together to make truly meaningful progress in outcomes for kids with IBD and also to really believe that radical, transformative progress is possible.

This is what an article in Scientific American stated last year about COVID:

“What is unprecedented is not just the speed and focus with which the community responded to the pandemic but also the singular willingness of scientists all over the world to share new ideas and data immediately and transparently.”

I hope that we can all work with the same sense of urgency and from the same ethos to improve care now. I want to sincerely thank ICN for giving me this incredible opportunity and to all of you for being here and listening. Thank you.

💚💙

Want more 🔥 Ignite? Read all Ignite Talks from patients, parents & clinicians.

Feeling like it's time to take action? No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:

• Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 

• Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 

• Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria

• Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint

• Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa