In February 2020, just two months after I said Happy Trails to my ICN family, I got a call that my brother was being admitted to the hospital. He had experienced a 30lb weight loss in just two weeks, and reported up to 15 bloody stools per day, fevers, and fatigue. When he told me they suspected he had IBD my jaw about hit the floor. I knew thousands of people with IBD through my years working with ImproveCareNow and their pediatric IBD registry. But until February 2020, IBD had never touched someone I love.

When I heard the news, I rushed to the hospital and sat by his side for the next five days. I asked about his inflammatory markers, the findings on imaging, when we would consult GI, and when the colonoscopy would take place. When his results came back (definitely IBD, type undetermined) we were told it was good news because they are all treated similarly (insert sarcastic tone here)!  As you can imagine, I was not satisfied with this information. I asked questions about therapy and the severity of my brother’s disease. Every time I asked a question, I got that look in return. Was I a nurse? Was I medical? How did I know so much about IBD and the treatment paths? Ultimately, my brother was started on medication (which I disagreed with, but no one would budge 😊) and discharged with a follow up appointment in two months.

At discharge, apart from disagreeing with the initial treatment plan, I felt this bigger, deeper dissatisfaction. Where was the education? Where was the doctor or nurse who sits with the patient and draws a messy picture of a GI tract and shades in the parts most impacted? Where was the person who could answer questions about what he could or couldn’t eat as my family (with the best of intentions) suggested he should remove gluten or spicy food or red meat?

At his follow up appointment, via zoom (thank you, pandemic) I sat with my brother and asked about biopsy results, what the plan was if medications failed him, and what he should look for if that indeed started happening (spoiler alert, it happened). I still got those looks. And there was still no education, no offers of support, no “you have IBD, and this is what that means.” I was the one who provided him with information. I printed out his labs and highlighted the ones to pay attention to and what they meant. I helped him make a food journal so he could identify what foods might trigger a flair. I explained what flairs were and what remission might look like. I talked to him about how it was very likely the medicine he started on wouldn’t work long-term and he might have to switch from 12 pills a day to an injection or infusion.

I stepped in as my brother’s advocate in that first year.

During that time, I watched him lose trust in the medical system; question if he was just a medical record number; go off all medication because he didn’t have someone other than his big sister to tell him that you have to continue therapy even when you’re feeling fine. I watched him flair, lose weight, and start to establish that fragile normalcy of “this is just my life now.” I played the bad guy who pushed medicine and worried too much about weight changes. And all the while, my ability to advocate and my credibility was eroded because my brother didn’t have a relationship with his medical team – no one else was talking about these things. No one was backing me up!

Eventually, there was so much tension in our relationship that it felt harmful, and I made the choice to step away and give us both some space.

My brother struggled for months. His health declined. And then one day, he came to me and asked for help. I stepped in again and helped him get a second opinion and establish a relationship with a new provider. I once again sat with him, and we relived his story. This new physician talked to my brother about what IBD is, the differences between ulcerative colitis and Crohn’s disease, and the therapy path that might better treat and manage his disease. I was still there to explain things and fill some gaps in knowledge, but mostly I advocated for my brother to take ownership of raising his own concerns, fears, and questions.

Switching providers meant starting over completely - new workups, new therapy, but also new hope for health and happiness for my brother. I could imagine a future where the burden of his illness felt a bit lighter to carry and where he could find new ways to thrive in his life; to not feel so caged and defined by IBD, but by his passions and joys. Looking back, even though there were some really hard times, I smile and am grateful for how far we have come.

Throughout this whole journey, I had the support of this community - the ICN community! You all had my back and held my hand when I needed it the most. Your faces and stories were in my mind as I reached deep within myself and said, “you’ve got this, Cori!” All the experiences I had - entering and analyzing ICN data (So. Much. Data.), participating in community conferences, shadowing IBD patients and families, listening to #IgniteTalks, learning from the lived experiences of ICN’s many community members, doing quality improvement work – I didn’t know it at the time, but it filled my toolbox with everything I needed (aside from a medical degree) to support my brother. I’m just so glad I listened and learned because I couldn’t have done it without you. I know that this is 100% true.

Without ICN, my brother’s story would have been much more traumatic, lonely, and frustrating. That's an outcome no one would choose.

ICN may be focused on improving outcomes for kids and adolescents with IBD, but it impacts the lives of adults, too. Kids and adolescents who take part in ICN, grow into adults equipped to take on tasks like advocacy, lessening the weight of carrying a life-long chronic illness and finding ways to focus on their joys and to thrive. ICN doesn’t predict the future, but it can prepare people for what the future throws at them. People (even data and improvement coordinators like me) who spend time learning with others about a diversity of IBD experiences, who share IBD information, knowledge, know-how seamlessly, who ask and answer questions that make a real difference in the lives of those living with IBD, who look at challenges together and say “we can do better, together” find themselves prepared to handle anything. I know, from personal experience, that people come away from ICN wrapped in a comfortable and confident feeling of “I’ve got this.” And that matters!

So, to everyone, my call to action to you is to Join ImproveCareNow! Listen and learn. Be a sponge: for every clinical presentation, every PAC generated panel or toolkit, every #IgniteTalk or idea, every data coordinator hunch. Absorb every moment you are in this precious community. You will develop life skills - you never know when you might need them, but when you do, it feels darn good to have ICN holding your hand.


Get #InTheLOOP with more posts by Cori on the blog >>
Put in your time and energy on behalf of someone else. 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 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 
  • 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)

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