ImproveCareNow Pac
Ulcerative Colitis and My “New Normal”
My name is Hannah, and I am a sophomore in high school. In August of 2020, I was diagnosed with ulcerative colitis. Within a couple weeks of that diagnosis, I had my colon removed. After that I had an ostomy for about four months before having my j-pouch surgery in December. One interesting thing that most people don't know about me is that I have moderate hearing loss in my right ear.
PAC Moment: IBD & How Treatments Impact Daily Life
IBD treatment plans are as varied as the patients who live with and follow them. Vanessa shares her experience with IBD and how her treatments impact her daily life:
Patient Advisory Council launches new "imPACt" podcast to connect and talk IBD
Here #InTheLOOP we have been honored to share hundreds of stories from people across our community. We believe strongly in the power of #TalkingAboutIBD and of stories to highlight the real voices, experiences, joys, frustrations, triumphs and struggles of patients who live with IBD every single day. Today, we are very excited to be able to share a whole new way for you to engage with the patient voice - to really hear their stories - by tuning into a brand new podcast by the Patient Advisory Council (PAC) called imPACt! In this podcast PAC members will be talking openly about IBD with a goal of raising awareness and inclusivity, and connecting with listeners, each other and podcast guests.
PAC Moment: IBD & Mental Health
PAC member, Andi, once wrote: “I have learned that mental health is just as important as physical health.” Talking openly about the impacts IBD can have on mental health is important to shed light on how intertwined the two really are. Here’s Quint’s experience:
PAC Moment: Experience with IBD
From diagnosis, to symptoms, to treatments, to (hopefully) remission - every person living with IBD has a unique experience with it. This is Rohit's:
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!