ImproveCareNow Pac


IGNITE - I choose to ask the hard questions

"Everyone's story matters, and is important, and can change someone else's story!" - Sami Kennedy

Stories matter! They connect us; build awareness, understanding and empathy; they unite us in our pursuit of a common goal and sometimes they even ignite (or reignite) our passion for the work that lies ahead. When PAC member Maddie shared her story – her #IGNITETALK – at our Fall Community Conference the energy in the room was palpable. Here’s the transcript of her talk.


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.


Patient Perspectives: Nutrition & IBD – a New Resource for Patients by Patients

My name is Maddie. I am a member of the Patient Advisory Council (PAC) and a contributor to the PAC’s latest IBD Resource – Patient Perspectives: Nutrition & IBD. This booklet is very important to me and the other contributors who have used nutritional interventions to treat and manage their IBD.

Nutrition is an important part of life and for IBD patients it can play an essential role in overall health. Nutrition can be used as a primary treatment, as well as secondary or complimentary treatment, which can support overall well-being. Sharing our experiences with nutritional interventions helps us raise awareness of how nutrition fits into real-life IBD treatment and management. It allows us to offer support and reassurance to other patients who are making decisions about or coping with nutritional interventions – that they are not alone.


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.


Crohn's has made me realize how strong I actually am

My name is Phoebe and I am 16 years old. I have Crohn’s disease and I was diagnosed one year ago. One thing most people don’t know about me is that I do aerial silks.


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!


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.


Coping - I can do this!

Dealing with IBD comes with a lot of appointments, tests, medications, and procedures. Going through all that, especially when many things happen at once, can and does take a toll on my mental health. I realized that it’s extremely important to have not just one, but a whole system of coping mechanisms to help me get through difficult situations with respect to my health.


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