ImproveCareNow Talking_about_ibd
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!
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.
I May Struggle At Times

Like most people, I’ve had my share of challenges in life. However, in March 2017 I was met with my biggest challenge to date. I started to feel sick with bad stomach pain. As time went on I noticed the pain was getting worse. I started to lose my appetite and was vomiting multiple times a day. My parents called the doctor, and they said it was probably a stomach bug. They recommended waiting two weeks to let the virus run its course.
It's Okay to be Different

A few years ago, I gave one of my older brothers a children’s book called “It’s Okay to be Different.” The book was downright hilarious. It contained colorful pictures of people “being different” and being okay with it. Didn’t you know that “it’s okay to come in last?” Or, my favorite, “it’s okay to eat macaroni and cheese in the bathtub.” As you might guess, I gave this book to my brother to poke fun at him, not on a serious note. However, the book had a good point. IT IS okay to be different. In fact, it’s pretty flippin’ awesome.
My journey with UC

My name is Norma. I’m 17 and I have battled ulcerative colitis since I was 10. I was born and raised in a small town near Mexico City, but a year ago my Mom and I moved to Los Angeles, California. Currently I am a senior in high school and hopefully next year I'll be attending Harvard University (YEP, HARVARD!).
For years I spent my time looking for someone to blame, it didn't matter who. I blamed myself for not being "normal" or healthy enough. I blamed my Dad (who battles UC as well), and I blamed God. I needed a reason for why I was going through such hell; why I couldn't attend school like my friends; why I had to take so many medications; why I had to go an outrageous amount of times to the restroom. I fell into a deep depression.
The worst part is that, at the time, I didn't realize this was affecting my parents as well. They lived every single step of the way with me. I think that having IBD is awful, but having to watch your kid struggle with IBD must be even more awful.
My Monthly Infusion Routine

An infusion during Thanksgiving week?
Yeah, I’ve had to get infusions on or close to Halloween, Cinco de Mayo, New Years, my birthday and other holidays too. Turns out my health doesn’t really consider fun, festive or eventful times in life as suitable excuses to delay my infusions. So, I’ve learned to roll with it, scheduling infusions that I know will wipe me out for a couple of days every month for almost six years now. I’ve had a lot of infusions in my life, so it’s pretty routine for me, but I wanted to write down step-by-step what my experience is like in case it’s helpful to others.
