ImproveCareNow Self-management
Lifestyle and IBD - A New Web-Based Toolkit for Patients by Patients
Lifestyle and IBD is a new web-based toolkit that the Patient Advisory Council (PAC) began working on in early 2020. As COVID-19 impacted the lives of many across the country and the world, discussions about how IBD impacts how patients live became especially important to members of the PAC and the greater IBD community. Seeing a need, we decided to co-produce a resource - for patients, by patients - that could help others by sharing direct patient experiences, patient-developed information, resource links, and professional information and insights.
It feels darn good to have ICN holding your hand.
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.
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.
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.
Learning to step back...
Hello! My name is Nour (means “light” in Arabic). I graduated from college, where I majored in Cognitive Science and minored in Communication. Since 2011, my diagnosis has changed a few times from Crohn’s disease to ulcerative colitis, and then back to Crohn’s disease. It has been quite a roller-coaster! There was nothing I wanted more than to be symptom free and respond positively to medication. It definitely required patience. To share one interesting fact about me…I have been graying since I was five years old! No, it did not all just suddenly happen in my 20’s! As for my age, I will give you a hint. I was born on the same day and year a historical event occurred in East and West Berlin.
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.
A Journey to Sustain Remission
My son was diagnosed with ulcerative colitis in 2014, at the age of 13. Fast forward to 2018, and I am thrilled that he is in remission and a thriving 11th grader juggling AP classes, SATs, extra-curricular activities, college tours, and yes, medication adherence. However, I’m also here to tell you, it has been a journey to achieve and sustain remission. Like so many of you, my mind raced with a litany of questions for days, weeks, and months after his diagnosis…IBD? Ulcerative colitis? What? No cure? How did my son get this? Next, guilt set in and then more questions…Why had I not heard about IBD before his diagnosis? Is this genetic? Was it the foods I prepared? Could I have prevented it? I was so distraught. I could not fix this, not this time.