ImproveCareNow Pac
Today, I got up.
"A journey of a thousand miles, begins with a single step.” – Lao Tzu
Tough things are a part my routine (ahem, thank you Crohn’s). As I write, I’m waiting in yet another doctor’s office, which feels like a part-time job of mine. While I wait, I'm reflecting on the sheer amount of effort it can take to accomplish a thing as simple as getting out of bed.
We all have an escape. Mine is theater.
I’m a therapist and the lead suspect of a murder. Well, I play a character that is!
I’ve always loved theater. I’ve done 12 performances, am on my school’s improv team, and have taken drama in high school every semester. One of my favorite things about theater is that you can act as anyone. It makes me feel better to play characters who have more problems than I do, and that’s saying something. Which is one reason why I’m so excited to perform my soap opera!
From Then Till Now
As I look ahead to my graduation from high school, I want to reflect on my IBD journey. Join me for a trip down memory lane. In 2008, I was diagnosed with Crohn's disease. Since then I have tried several different medications and treatments; I have been in and out of more doctors’ offices, hospitals rooms, and clinics than I care to count. At one point, I began to believe that Remission would never come for me. My future, free from illness, seemed so far away and unachievable; I felt hopeless.
My Journey of Acceptance and Healing
My name is Zehra and I am 20 years old. I began experiencing symptoms that were probably resulting from IBD as early as five years old. I was not officially diagnosed until I was 14. After multiple severe relapses, consisting of profuse blood loss and dramatic weight reduction, my colonoscopy/endoscopy revealed I have Crohn’s disease. Unfortunately, my diagnosis happened at a time of severe disease relapse, which impeded my education significantly. I took several years off during high school to cope with my disease and multiple life challenges, which merited the need for self-care. During this time away from school, I explored my passions further to give me a sense of purpose, productivity, and victory over IBD. After so much struggle, I am finally in my last year of high school, and I'll be graduating in June if all goes well!
PAC Chat Recap – Surgery & IBD
https://flic.kr/ps/3hiKuq
On January 24, the PAC hosted our first ever Twitter chat. We invited the whole ImproveCareNow community, as well as our Social Media followers to join us for an hour so we could chat about Surgery & IBD. In case you missed it, here are some event highlights.
I was afraid to talk about my health
My name is Rosa. I'm 23 years old, and was diagnosed with ulcerative colitis when I was 11. I graduated from Lewis & Clark College in 2016 with a degree in Medical Sociology. I'd like to go back to school at some point, and get a degree in disability studies, social work/counseling, or public health (I still haven't decided which!) I'm hoping to find a job that allows me to use my own experiences with chronic illness to help others dealing with similar issues and frustrations!
PAC IBD Storybook - Coming Soon
ImproveCareNow members are first to receive new, co-produced tools, toolkits and guides – like Finding a Mental Health Provider for Your Child and Teen with IBD, which was co-produced by the Psychosocial Professionals group and members of the ImproveCareNow Community.
We will be releasing a new tool very soon! Join now and be the first to see the Crohn’s & Colitis Storybook.
Surgery & IBD - a PAC Twitter Chat
While surgery may not be a fit for all IBD patients, it’s certainly a topic to discuss. I invite you to join us on Twitter on Wednesday, January 24, 2018 @ 1PM EST as we @ICNPatients talk about surgery and IBD.
Mental health is just as important as physical health
My name is Andi and I’m a freshman at Indiana University-Bloomington where I study Biotechnology, Chemistry, Spanish and Pre-Med. I was diagnosed with Crohn's disease in April of 2008. I currently take Methotrexate, which has kept me in remission for about nine years now. A fun fact about me is that I collect snow globes.
One of my greatest struggles in dealing with a chronic illness, is the mental side effects that come along with it. I can be moody or withdrawn and I find it affects those around me.
Research should benefit patients
I'm Joshua – a 21-year-old Stanford senior. I was diagnosed with Crohn's in the 7th grade and have been, for the most part, in remission since then (I've been on Remicade pretty much continuously). Most people don't know that I can roll my stomach – I'm a pretty open book, so that's all I got!
Since I've only experienced Crohn's-related symptoms 2-3 times in my life, whenever I have any GI symptoms or problems, I always get anxious that "the Crohn's has come back." It can be mentally exhausting at times, but luckily school keeps me busy and distracted.