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Top 4 Things to Know When You're Diagnosed with IBD

When I was diagnosed with ulcerative colitis at 14 years old, I was shocked. I was lucky enough to already have some familiarity with the disease, but I never thought it would happen to me. I had every single textbook symptom, but I still felt so numb and so distant from the new reality I had to face. This isn’t an uncommon feeling, and it can be really hard to know where to start. IBD is a complex disease, so here are some things I found helpful while learning to navigate those first few months after my diagnosis.


I was given this life because I’m strong enough to live it!

My name is Autumn; I am 20 years old and I am currently in college. I am from Ohio and was diagnosed with Crohn’s disease in April of 2008, when I was just six years old. I have had Crohn’s for 14 years this month (April 2022). Something most people don’t know about me is that I absolutely love to travel. Long road trips (at night is my favorite!) and going and seeing places I have never been to before is something I really love and enjoy… I see a lot of adventures in my future! A couple places I would love to visit one day would be Canada and Disney World. OH...I really want to fly on a plane!


Lifestyle and IBD - A New Web-Based Toolkit for Patients by Patients

Lifestyle and IBD is a new web-based toolkit that the Patient Advisory Council (PAC) began working on in early 2020. As COVID-19 impacted the lives of many across the country and the world, discussions about how IBD impacts how patients live became especially important to members of the PAC and the greater IBD community. Seeing a need, we decided to co-produce a resource - for patients, by patients - that could help others by sharing direct patient experiences, patient-developed information, resource links, and professional information and insights.


"The Sudden Obliteration of Expectation": Adjusting to My "New Normal" with IBD

It happens in a series of moments. Sleepless nights. Weight loss. Pain that gets worse with every day. Seeing test results of climbing inflammation numbers. I describe it distilled into one single moment: waking up from my first colonoscopy and hearing the words “ulcerative colitis.”


IGNITE - I don't have to be healthy to be happy.

When Shira joined the Patient Advisory Council - in October 2020 - she wrote that she was looking for a place where she could use her voice to influence the quality of care other people receive - to change someone else's life for the better. Since then, she has set about doing just that - co-chairing the PAC's Advocacy Taskforce and joining the imPACt podcast where she has contributed to patient-led discussions on topics ranging from Parent-Patient Relationships to Arthritis to Queerness & IBD. In her Fall 2021 Live Online Community Conference Ignite Talk, Shira brought us deeper into her IBD journey by sharing a raw and beautiful account of her own self-inquiry and discovery, of learning to lean in during the dark moments and hold space for the hard feelings IBD brings. She challenged us, as she has challenged herself, to acknowledge that, yes, IBD is a burden and it brings a certain loss of control, but it does not mean the loss of one's happiness or identity.

Be inspired by Shira's #IgniteTalk 🔥 


My goal is to eventually help other teens cope with IBD while also coping with mental issues

I'm Rachel, but go by Rach. I'm a 17-year-old rising senior in high school, and about to start a job at Panera Bread. I was diagnosed with Crohn’s in 2016 at age 13. Most people don't know that I love unicorns!! ♥


Episode 9 of the imPACt podcast - IBD Psychology

It was definitely a fascinating experience making this podcast episode where my fellow PAC member, Maha and I interviewed Dr. Jennie David. I especially enjoyed learning more about her profession and remember thinking that I didn’t even know IBD Psychology was its own subfield.


IGNITE - Taking the journey together.

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 🔥 


Shaping the way I view Crohn's

Hello! My name is Jennifer and I am a 16 year old high school student who also works part time at a pizza restaurant. I love meeting new people and enjoy engaging in activities outside of my comfort zone.


Feeding tubes are something more people should know about

Hi, I’m Makenna and I’m here to talk to you about Feeding Tubes. In my experience, they are something not a lot of people know about and I want to change that.


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