LOOP Blog

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 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 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 💚💙

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.

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.

Heidi's #IgniteTalk is a powerful reminder that while IBD may be part of your life, you don't have to do it alone. There is value in connecting with others to give and receive support, in #TalkingAboutIBD because every story matters and has the power to change someone else's story, in offering what you have learned on your journey in the hope that it can help another person outsmart IBD.

Be inspired by Heidi's #IgniteTalk 🔥 

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 🔥

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!

Mahalakshmi (Maha) Parakala is an active member of the Patient Advisory Council and currently serves a co-leader of their recruitment taskforce. She is a LOOP contributor, has presented during ICN Community Conferences, has co-developed IBD resources, and recently co-hosted an episode of the new imPACt podcast. At our Spring Live Online Community Conference, Maha shared her story about discovering patient advocacy and the role it has played in her life during our Engagement Plenary Better Together: Growing our CIRCLE Community to Take Care to the Next Level.

Please enjoy Maha's presentation, which we have shared both as a video and in transcript form, below:

My name is Mira, I am a 15 year high school freshman. I was diagnosed with ulcerative colitis when I was 11. An interesting thing most people don’t know about me is that I’ve been to 25 countries.