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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.


PAC Moment: Stress, self-care & school

PAC members weigh in on how they like to manage stress and take care of themselves leading up to school exams or the end of a semester. Here is what they said:


Coronavirus Perspectives: Every day I make lists of things I want to do

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thanks for sharing your perspective, Jen!


Coronavirus Perspectives: Art & music are how I’m coping

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thanks to PAC (Patient Advisory Council) member, Quint for sharing his perspective!


Coronavirus Perspectives: Stay safe and reach out when you need it

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thank you so much to PAC (Patient Advisory Council) member, Becky who shared her perspective on life with IBD in the time of coronavirus and the disease it causes – called COVID 19.


PAC members discuss wellness, creativity, self-care and community

Wellness means different things to different people at different times. And while no single path leads us definitively toward or away from wellness, investing time in the things we love, making supportive connections with friends and family, and caring for ourselves can have an impact. PAC members – Becky, Linden and Quint – share their thoughts on wellness, creativity, self-care and community in this post.


I love my perseverance

I am a second-year engineering major. I tend to be a very academically driven person with high expectations of myself. I love my perseverance, but sometimes my own determination to achieve my goals is my biggest stressor. In my mind I set goals for myself constantly. And naturally when I don’t meet my goals, I am disappointed.

These habits manifest in many facets of my life, but particularly in my academic life. I set goals for tests and grades and expectations for interactions. When I don’t do as well as I would like, it can be rough, and I end up stressed out.


Parent and Caregiver Self-Care Tips

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I am a parent of three children, and all three have Crohn’s disease. My oldest was diagnosed in 2010 and my younger two were both diagnosed at the same time, in 2013. As a parent of one child, let alone three children with IBD, I found life overwhelming, stressful, and mentally and physically draining. Personally, I have found self-care to be a critical piece in coping with the initial diagnosis and the on-going treatment and care of my children. I will be the first to admit I struggle with self-care at times, but at least I have a list:


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