ImproveCareNow Pac


We can use our shared experiences to create resources we wish we would've had.

Hi everyone! My name is Maitri, and I attend the Ohio State University (yes, the "the" is obnoxious but absolutely necessary). I am majoring in Neuroscience, and plan on attending medical school! I also work as a part-time PCA at Nationwide Children's Hospital. I was diagnosed with Ulcerative Colitis when I was 15. An interesting thing that most people don't know about me is that I am trilingual - I speak Gujarati, Hindi, and English!


PAC Moment: Holiday Stress & Eating

Last December, @ICNPatients shared how holiday stress and eating can affect IBD and their wellbeing. We are re-sharing today, because we are coming into the summer holiday season. With more gatherings and food offerings on the horizon, we hope you'll take a PAC moment to learn how patients with IBD might experience these celebrations:


Episode 7 of the imPACt podcast - IBD & Identity

Did you miss us? We briefly interrupted our regular, every-other-Friday podcast release schedule. It was for a really good cause though - we released a special episode of imPACt to celebrate World IBD Day (May 19) and talk about the importance of Advocacy! Now we're back and hope you'll join us today for our chat about IBD & Identity.


What I Wish I Knew About J-Pouch/Ostomy Takedown Surgery

Hello everyone, it’s Hannah! In early December of 2020, I had my ostomy reversal or takedown surgery to create my J-Pouch. I knew from talking with my doctor some of what to expect: waking up with lots of tubes, feeling tired and sore. But it was through reading articles about other people’s J-pouch experiences (those who just had surgery and those who have lived with their pouch for some time) that I was able to prepare myself for what to anticipate physically after surgery. Looking back now, I realize I’ve learned a lot, that there are things I wish I had known, and that I want to share what I’ve learned so others can know what to expect.  


PAC Moment: Listening, Validation & Understanding

PAC members weigh in on how friends and family can best support them when they share about their IBD or are having a hard time. Here's what they say:


World IBD Day - Special Episode of the imPACt podcast - Advocacy & Talking About IBD

World IBD Day is May 19. It happens every year and is a time for #TalkingAboutIBD. It's important to share our lived experiences with Crohn's disease or ulcerative colitis (also known as Inflammatory Bowel Disease or IBD), to raise awareness of these often invisible illnesses and to build momentum and advocacy for positive changes to IBD care and outcomes. Join us for a special episode of the imPACt podcast this #worldIBDday 💚💙


In reality, vulnerability is a sign of strength.

 

Hey! My name is Caitlyn, I'm an 18 year old freshman in college. I was only just recently diagnosed with Crohn's disease in December of 2020, but I have struggled with symptoms for a while. An interesting fact about me is that I grew up in a military family and have lived all over the country.


There is no better outlet for understanding your diseases than through other patients

My name is Nicole and I am 21 years old. I was diagnosed with Crohn's disease on my 16th birthday and Primary Sclerosing Cholangitis (PSC) just a few months later. These diagnoses were heartbreaking, but I did not let them stop me. I am graduating magna cum laude with a Bachelor's of Science in Biology and will be returning to my hometown of Cincinnati, Ohio to work as a Genetic Counseling Assistant to pursue my passion in genetics.


IGNITE - Learning to give myself grace.

Fionna is an active member of the Patient Advisory Council, and is currently co-leading their communications taskforce. In this role, she is collaborating with other PAC members and ImproveCareNow to bring the stories and voices of the PAC to even more people in new and exciting ways. This spring she helped to launch the imPACt podcast, which is a new way to connect with and listen to young people talking about life with IBD. It is through the PAC that Fionna was recently able to tap into support, understanding and validation as she coped with a UC flare. She credits the PAC and this experience with helping her shift her mindset about healthy resilience, exploring the benefits of opening up and being vulnerable, and learning how to be flexible and give herself grace during tough times.

Be inspired by Fionna's #IgniteTalk 🔥


Episode 5 of the imPACt podcast - Managing School with IBD

I'm Vanessa - one of the PAC communications team leads - I am currently a HS junior and on tennis team. I've had to learn how to talk to my teachers, coach, teammates and friends about Crohn's and tell them when I feel sick or have an infusion. Being open has helped me build trusting relationships with them. Managing IBD, school and sports is definitely a challenge, but having a strong support system and being able to communicate with them openly has made it a lot easier to succeed. I'll be talking more about it on the podcast today - join me!


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