ImproveCareNow Pac


Going with the Flow: Observations from an IBD Patient and Employee in Healthcare

On New Year’s Eve, my family has a tradition of writing our New Year’s resolutions on pieces of paper and then sharing them with each other amidst chuckles and teases. However, last year, we decided to do something a little different. “Let’s not choose a resolution,” we said. “And just go with the flow.” That concept could not have been more fitting or appropriate for 2020.


I was ready for boot camp when I got sick

My name is Madeline, and I am 18 years old. I currently attend technical community college but am transferring to a university in Virginia the fall of 2021. While in school I babysit/nanny part time. I was diagnosed with Crohn's disease earlier this year and I am excited to join the PAC. One thing most people don't know about me is that I love to sing.


Top Ten LOOP posts of 2020

So far, in 2020, 50 stories have been shared #InTheLOOP. Thirty-four community members have written about IBD from their perspectives as patients, parents, researchers, clinicians, improvers and friends. They have covered topics ranging from COVID-19 and telehealth, to IBD research and innovation projects, to their struggles, triumphs and hopes for the future. 

LOOP continues to make an impact in the IBD community, as a place where people can share their experiences and perspectives, to help others understand the realities of life with Crohn's disease and ulcerative colitis more clearly, and to keep us all #TalkingAboutIBD. Without further ado, here are the stories you read the most in 2020!


To cope with Crohn's disease, I choreograph South Asian dances.

My name is Rhea - I'm 17 years old and currently a senior in high school. I was diagnosed with Crohn's disease when I was 16 and will be starting Humira soon. One interesting thing about me is that I absolutely love children. I want to study pediatrics in the future!


Dealing with COVID isolation as a high risk patient

 

As a high-risk graduate student who's been remote since March, I'm no stranger to the COVID isolation fatigue that many of us have been experiencing. It’s been a challenge to work, attend classes, take care of my health, and balance daily life without the usual in-person interactions I’m used to. The days can feel like a blur when we do everything from home - setting boundaries and creating some semblance of ‘normalcy’ has been tricky, to say the least.

A few of the things I’ve noticed help me cope right now:


It feels like we've really come full circle

Something that I don’t think a lot of people know is that I recruited Catalina Berenblum (Cat) to join the Patient Advisory Council (PAC), years ago. And now that she’s on-boarded me as the PAC's new Co-Chair, it feels like we’ve really come full circle. If I had known then, what I know now, it would have been an interesting sight to see: a high school freshman leading an orientation call to onboard a future PAC Co-Chair and eventual med student. Obviously, I didn’t know that Cat would become either of those things when I first picked up the phone, but I did expect great things from her right away. From our first conversation, I was sure Cat was going to do something amazing: she became an instant role model to me. That awe I felt was well-founded.


Crohn’s made it hard to participate in simple things

My name is Robbie. I’m 18 and a college student. I was 15 when diagnosed with Crohn's disease; luckily I am in remission now. An interesting fact that people don't know about me is that I captained my school's Trivia team and we went on TV for competitions!


IGNITE – It starts with us.

Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:


It's OK for IBD to take up space in my life

My name is Shira and I'm currently a junior in high school. I was diagnosed with ulcerative colitis in the fall of 2018 but I am being reevaluated for Crohn's disease at the moment. Something interesting about me is that my mom and a few other family members of mine also have IBD!


With IBD, I’ve gained a lot of empathy and perspective and learned a lot about privilege

My name is Seth. I am 17 years old and a rising high school senior.  I was diagnosed with Crohn’s disease in sixth grade. I had a relatively typical path to my diagnosis. After a few years of worsening symptoms (stomach pain, constipation, and vomiting), I went into the hospital, where I had a gastric emptying scan and upper endoscopy, and then labs, a CT Enterography, and finally a colonoscopy. After a few weeks on Prednisone, I started IV Remicade, which I have been on ever since. Outside of Crohn’s, I play trombone and tennis. I’m also very involved in politics, and I was recently an intern for two congressional candidates in Ohio.


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