ImproveCareNow Transition


Crohn’s swept life as I knew it out from under me

Hi! My name is Mary and I am 19 years old. I am currently in nursing school. I was diagnosed with Crohn's in 2018. One interesting thing about me is that I have 3 nephews and a niece!


What I Need, When It’s Needed – Information on financial and insurance coverage issues

In February 2019 our Engagement Team asked the ICN Community to share what information, knowledge and know-how could help others living with IBD, and how best to get those resources into the hands of people who need them. Two weeks ago we shared feedback and resources related to “Information and resources to support psychosocial health.” Today, we're sharing about "Information on financial and insurance coverage issues."

We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address the topics shared in this post, please contact us so we can share seamlessly.


I’m not sure it’s Crohn’s yet, but I’m building a strong support center within myself

I'm Lexi - a rising high school senior. In December 2019, I was having severe nausea, vomiting, and abdominal pain. The doctor at Urgent Care thought my gallbladder was the cause of my pain and suggested I go to the emergency room immediately to have it removed. At the ER, after many tests, they determined it was not my gallbladder but could not figure out the cause of my pain. I was referred to a pediatric gastroenterologist.


I've begun experiencing more of life

Hi! My name is Laurel and I am a 20-year-old college student, majoring in Human Biology. I was diagnosed with Crohn's disease in 2012 and have been on biologic infusions ever since. One thing many people don't know about me is I absolutely love insects and am minoring in entomology!


Crohn's disease and my camping merit badge

My name is Benjamin and I am a rising senior in high school. I was diagnosed with Crohn's disease when I was 10 and a half. Since then, I have found joy in art, Boy Scouts, numerous sports, and theatre.


There really is strength in numbers.

Hello! My name is Mahalakshmi (Maha for short!), and I am 18 years old. I have Crohn's disease, which was diagnosed two and a half years ago, but I've definitely had it way longer than that. I am attending college in California in the fall as a biology major and I'm excited for what the future holds! My hobbies include singing, acting, spending time with friends and family, and playing board games. One interesting thing about me is that I love languages. I've been bilingual since I was a child and started learning another language in high school that I hope to stick with in the future!


Science is the Voice of Reason

Hi, my name is Rishi, and I’m a 19-year-old Medical Sciences undergrad as well as a Student Researcher at a Children’s hospital. I was diagnosed with Ulcerative Colitis in August of 2016, but most people outside of the IBD community have no idea I have IBD. In addition, many people do not know I lived in the National Radio Quiet Zone for a month last summer: no internet, no cell phone service…nothing!


Packing for College or Moving Out: Some Extra Items for the U-Haul

My patients sometimes like to discuss the “hassles” of preparing to enter the adult world and manage their own health. I run a transition education and co-management program through my center’s IBD clinic, where I try to help parents and patients begin to shift the daily regimen of medical behaviors from parent, to parent-patient, eventually to patient management with support. Part of our time together just includes talking out loud about the best and worst of growing up and launching into the world as young adults.


Transition and Transfer to Adult Care

A:

As healthcare providers, we want our young adults to successfully navigate the health care system as independent individuals. The process of transitioning from pediatric to adult-centered health care should be seamless, and should occur when the adolescent or young adult is in a stable place, both physically and emotionally.


The Transfer Toolkit

The Transfer Toolkit is a 10-page document collaboratively created in 2018 by the Transition-Transfer Innovation Community and reviewed by the Patient Advisory Council and Clinical Practice Committee. Developed by patients and clinicians together, The Transfer Toolkit includes sections that cover important skills and considerations for adolescents approaching the point of transfer to adult care, self-advocacy tips, and more. Each section also includes relevant patient narratives to provide encouragement and real-life advice.


LOOP articles

Transitioning to Adult Care Provider

To Nudge or to Push


My name is Quint

My name is Quint. I am 20 years old and attend college in Massachusetts. I was diagnosed with Crohn’s disease when I was 17, but had symptoms the year leading up to my diagnosis. A fun fact about me is that I love driving. In fact, I drove with my dad around the U.S. the summer before my first year of college. The trip was about 9000 miles and took three weeks. 


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