IGNITE - There is Hope

Have you ever wondered what a doctor might be thinking or feeling when you open up about what's going on physically and emotionally because of IBD - the good, the bad, the embarrassing, the frustrating? When they deliver an IBD diagnosis to a family? When they want to be a source of answers? During her #IgniteTalk at the Fall 2021 Live Online Community Conference, Dr. Rana Ammoury let us peek inside her experience as a pediatric GI and an ICN participant for the past seven years. Her story, beautifully written and delivered, is a genuine reminder of the power of vulnerability, humanity, community and hope. 

Be inspired by Rana's #IgniteTalk 🔥 

Seven years ago, fall of 2014, I started my journey with ImproveCareNow after attending my first conference in the city of Chicago. I had recently joined CHKD and was starting to learn about ICN as a network. I remember that conference as if it were yesterday. At the time, I was a breastfeeding mom on my maternity leave with my child. Sleep was elusive and exhaustion was an understatement. I may have not remembered much of what was discussed at the sessions, for obvious reasons, but I clearly remember how they made me feel. The energy was so high and infectious, it was almost palpable. I felt a sense of awakening, a sense of commitment, a sense of purpose. I knew I was part of something bigger than me, bigger than any of us individually.

Being a doctor comes with a great amount of expectation. Very rarely do people come to us in their finest moments. They bring us their pain, and fear, hoping to find answers.

The hope of answers, understanding, and not having to go alone through tough times is what ICN is all about.

As a physician, I can tell you that healthcare workers are not perfect, nor will we ever be. We are practicing our craft, and while we’d all like to think we’re pretty good at it, we know there is room for improvement. What better way to improve than to join a collaborative network like ImproveCareNow and team with other clinicians, researchers, social workers, nutritionists and most notably, the patients and their parents who are looking to us for answers, the very people we are striving to help, and whose care we tirelessly aim to improve. We are a community where everyone is empowered to learn and continuously improve to bring about more reliable, proactive IBD care for healthier children and youth.

When ICN was formed, it was meant to serve as a bridge between patients and their families who live with IBD every day and the professionals who care for them. Collaboration from both sides of the IBD diagnosis—students of the disease who work towards treatments and a cure, and those who bear the pain, inconvenience, and precariousness of the disease regularly, adjusting their lives to achieve the best possible quality—has proven to be a winning strategy. The expertise of professionalism coupled with the expertise of experience converge at ICN to create a force that’s changed countless lives for the better, but they’re not truly countless—we have the numbers. 82% of the patients in our network are in remission, 57% have sustained remission for at least a year, and 97% are steroid-free. But while those numbers are certainly cause for celebration, we are not finished.

We aren’t finished because the numbers aren’t 100%. We live in a democracy, which means that majorities are often sufficient for our ends; the majority signifies success in the collective public psyche. But when you’re one of the 5% who haven’t yet seen improvement, or the 18% who aren’t yet in remission, or one of the patients out there who are not cared for by an ICN center and don’t yet know how this network can improve your quality of life and support you on your journey, you understand the importance of continuing to strive, because each of those numbers represents a life, and each one of those lives is worth the fight.

ImproveCareNow is a place of honesty and transparency where families feel safe to share what’s going on physically and emotionally because of IBD—the good, the bad, the embarrassing, the frustrating—and that honesty contributes to our confidence as care providers, because we can be real about where we are in the process of working towards achieving remission with clear and reasonable expectations. ICN is a place of inclusivity. In a world that so often excludes those who aren’t standard, this community wants to hear from you, no matter who you are. ICN is a place of empowerment; we want our patients to be fully present in their lives and give themselves permission to not shy away from experiences, big or small, because this disease is big, but it’s not bigger than them. ICN is about continued learning and improving. Because of the work of this network, children with IBD are getting their health back. This network is a melting pot of best practices, and this is the kind of practice that gets results.

As parents, we hope that our children will be and always stay healthy, so when IBD starts to present in a child, there is fear, frustration, inconvenience, and a lack of understanding of why this is even happening. Not many feelings are more unsettling than watching your child’s health deteriorate. The road to diagnosis is sometimes long, especially because you feel lost, and more especially if you commit the ultimate sin of running thumbs-first towards Google, hoping for reliable information. When the diagnosis finally comes, it is accompanied by a stark dichotomy: relief that you finally know what is causing your child’s illness, versus the unsureness of how to deal with the sickness and responsibilities that come with it.

Everybody remembers the moment when they realize things won’t be the same anymore.

Even with years of practice, delivering this information to families about their kids never gets any easier. What gives me comfort is knowing the ICN community is there to support and lift them. It’s a place I, too, can breathe, because I know I don’t have to have all the answers, and I also know that even though someone is hurting today, there is hope.

Interruptions come from IBD. Depression comes from IBD. Adjustment isn’t easy, and while resilience is something to be celebrated, we don’t always give attention to the emotions that formulate the foundation of resilience. All too often, in stories of illness and health, we lament the day of diagnosis and celebrate the day of remission, but each day in-between is just as important. Those days in the middle are where ICN shines.

Jayden is 15-year-old Crohn’s patient of mine who had to have an ileostomy due to stricturing disease. That reality was devastating for him emotionally. I remember the day I was discussing with him and his mom the options available in regards to his care at that moment in time. I could see him gradually withdrawing. Despite all the efforts of the mental health team, child life specialists, and myself to re-engage, educate and reassure him, he remained completely shut down refusing to talk to anyone on the team. Needless to say, he went on to have the surgery, his disease improved but he didn’t. That went on for weeks until he found his voice within the ICN community that helped him cope. You could start seeing the light in his eyes again. The power of community is what makes this organization special to me, along with the many ways it has grown me as a physician, colleague, parent and person.

Our country is divided right now, more so than many of us ever remember in our lifetimes, but when I think about ICN and the people who comprise it, it makes me think of the best of our country. People experiencing the freedom to express themselves and contribute their thoughts and beliefs for the betterment of all of us, people who are willing to listen because we know each other’s battles, the different demographics of religions, races, ethnicities, ages, and experiences that come together to find the common thread, which for us is a path to health and healing.

When we sit with each other face-to-face in collaboration, we all become humanized. We clinicians share in our patients’ and families’ pain as much as we share in their wins. Their success is ours, not just on a professional level, but also on a personal one.

These unprecedented times in which we live are marked by our population being more stressed than ever. The last thing people want to do is “one more thing,” but when it’s something that adds value, that gives you front row seats to a positive transformation in someone’s life, that thing provides a salve for the stress and confusion we’re dealing with today.

It’s a reminder that you’re part of something beautiful, helpful, and real.

I am grateful for what ICN has meant for me. I appreciate the layer of meaning it’s added to my career, the healing it’s brought to so many IBD patients, and the hope it continues to offer to those who have already benefited from it and those who will experience its benefits in the future.

We are indeed stronger together.

Thank you!

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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 save the date to attend our December 8 Virtual Community Conference (this free, web-based event is a great way to learn more about ICN from the patient & parent perspective)
  

• Invite someone to stay #InTheLOOP with our stories on the 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 (We will be posting 3 more #IgniteTalks - like John's - to the blog over the next couple weeks. By signing up, you'll be the first to know!)

• 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 guardian of a child with IBD to join the Parent Working Group - "I believe I have helped other newly diagnosed families not feel as lost as I was. I believe I am making a difference in my community. And none of this would have happened if I hadn't joined the Parent Working Group." - Carrie

• Invite someone to download our 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 (connect with our welcoming & supportive community, and receive IBD resources, stories, and ICN updates & opportunities)