ImproveCareNow Ibd


I was torn between needing to rest, and not wanting to miss out

I had the pleasure of attending the ImproveCareNow Fall Community Conference in Chicago in September. I had a great time meeting my fellow PAC (Patient Advisory Council) peers in person! They helped guide me through the various panels and workshops. I do admit that there were times when I felt overwhelmed. Not necessarily in a ‘negative stimulus’ overload, but overwhelmed with information, discussion, and flow of support from my own peers, parents and families, administrators and providers. There was one point during the conference, quite early in the morning, perhaps no later than 10:00am, where I was struggling to keep my eyes open – my old friend fatigue was back. I had to excuse myself to go back to my room to take a nap. Guilt, another familiar friend, greeted me. I was torn between needing to rest and not wanting to miss out on learning.


Our involvement with ICN has been a family affair

Hello Fellow Improvers! I am Nicole and I have been part of the ICN Community for four years. During this time, I’ve been grateful to enjoy several Community Conferences and have been an active participant in improving care both at the national level with the ICN Parent Working Group (PWG) and locally as the Co-Lead of the Parent/Patient Advisory Team (PPAT) at my care center in Massachusetts. I'm pleased to introduce my family to you!


Relearning to Live

Sure, my parents drilled the whole “eat healthy, sleep well, drink water” thing into me and my sisters, but that was never entirely applicable to me. I had different rules. Having had Crohn’s disease since an early age, I was always seriously underweight and struggled to get enough nutrients. The goal for the first decade of my life was to eat as much as possible and specifically fatty foods that would build up my mass. But I was never hungry anyway; eating always ended in pain so getting enough food into me was truly quite difficult. I even tried supplemental nutrition drinks like Pediasure, Boost, and Kids Essentials but it wasn’t enough to help me gain weight.


A 504 plan helps school staff understand how they can support you

High school can be one of the most interesting times of your life. It’s fast-paced and you are faced with new challenges, experiences, subjects and adventures! High school is a challenge on its own and having IBD makes it even more difficult, especially because of its unpredictability. Going through one of the worst flares of my life during high school, I missed tons of school, and sometimes even when I was present, my body was so tired that I could not pay attention well. It was around this time that my school nurse told me it would be a good idea to get a 504 plan.


Research demonstrates need for greater support for the IBD caregiving community

The National Alliance for Caregiving (NAC) has released a report on caregiving of individuals with Inflammatory Bowel Disease (IBD). Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD – Crohn’s disease and ulcerative colitis.

The full results of the survey can be viewed online at http://www.caregiving.org/ibd


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!


Crohn's has shaped my career path

My name is Rohit and I am 20 years old. Right now, I am a rising junior majoring in Genetics with a Certificate Program in Computational Genetics at an Honors College in New Jersey. I was diagnosed with Crohn's disease in 2016. One interesting thing about me is that I'm the only one above 6 feet (actual height: 6' 2") in my entire immediate family!


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.


My own art of talking about IBD

The way I have felt about making time to explain (or to not explain) my IBD has changed since I was diagnosed seven years ago. Early on I felt like no one understood, and therefore I didn’t put any energy into talking about it. Unhelpful comments and ignorance were hard for me to get past. It took me a long time to realize people can’t understand what they don’t know about.


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