ImproveCareNow Resources


What I Wish You Knew About IBD & Holidays

Invisible illnesses, like Crohn's disease and ulcerative colitis, don't take time off for the holidays. Learning about what your friends and family members who live with IBD may be experiencing is a powerful way to demonstrate your caring and support, and to also include them in holiday plans in ways that work for them.


PAC Moment: IBD & Sun Safety

Sun safety is important for everyone, but if you are living with IBD (and taking certain medications) it may be even more important for you to protect your skin from the sun.



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:


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.  


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 🔥 


Know your iron status: Iron deficiency and IBD

Anemia is common in IBD and iron deficiency is the leading cause. Studies show up to 95% of individuals newly diagnosed with IBD are iron deficient. Learn more about iron deficiency and IBD from the ICN Registered Dietitian group, including common symptoms, as well as what to expect with testing, treatment, management and prevention.


Episode 3 of the imPACt Podcast

I had the pleasure of presenting at the Spring 2021 Live Online Community Conference last week on the topic of “Recovering from Flares”. Myself and other PAC members discussed things like: what a flare looks like, how a patient can anticipate a flare and what steps they can take in communicating with their providers and family to avoid serious health repercussions. Our goal was to really emphasize proactivity and empower patients to take charge of their health. 

I'm really excited about this topic and have shared a bit more about it below, including how you can listen as we continue the conversation in Episode 3 of the imPACt podcast this Friday.


Resources for caregivers and professionals caring for IBD patients and their families

In 2019, the National Alliance for Caregiving, in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow, released the first national report, to our knowledge, on caregiving of individuals with inflammatory bowel disease. Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD. It was clear from the study that caregivers needed support, with the report providing insight on who provides that support and caregivers’ perception of their capacity to provide care for the condition. The report also includes policy recommendations and next steps that can be taken in order to improve support for IBD caregivers and their families.

In 2020, NAC followed up this study with two additional resources for caregivers and professionals caring for IBD patients and their families.

  


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