Posted by ImproveCareNow™ on August 05, 2020
LOOP is a place for ICN Community members to share their stories – experiences, perspectives, wisdom. Since the blog was created in 2012, hundreds of stories have been shared by patients, parents, clinicians, researchers, collaborators and friends. We've recapped our top five, most read stories from patients about life with Crohn’s disease.
Staying warm and comfortable during infusions – Emily & Ella
“So, I decided I wanted to make a sweatshirt, for kids getting IV infusions, that is comfortable, motivational, and most of all does not look like a hospital gown or medical-wear.”
Emily & Ella share the story of how Ella was diagnosed with Crohn’s and how her experience with routine infusions led her to envision creating a comfortable piece of clothing she could wear that wouldn’t interfere with her medical procedure. Their IV Sweatshirt project is a 2019 recipient of an ImproveCareNow Patient and Parent Innovation Fund award.
My Monthly Infusion Routine – Natalie
“I’m still amazed sometimes at how adapted I’ve become to this new normal – how getting infusions every month doesn’t feel like a big deal to me anymore.”
Natalie shares how she prepares for infusions and takes care of herself afterwards. She says may not be able to control when a Crohn’s flare happens, but she can control her infusion routine – and that feels good.
Chronic illness can't be solved like an equation. – Natalie
“I am aware that this balance of life and Crohn’s, of known and unknown, will challenge me physically and mentally forever. But experience tells me that I can cope with that awareness.”
Natalie reflects on how challenging and complicated Crohn’s disease is, and how things can change quickly and without rhyme or reason. She challenges us to not focus only on what we can track and measure, and consider the patient experience as well.
My Biggest Struggle is Dealing with an Invisible Disease – Allison
“I have learned to be open about what I'm dealing with. I make sure to tell my friends if I am feeling under the weather.”
New PAC Member, Allison, writes about how it was hard to adjust to life with an invisible illness. At first, her pain and fatigue were confusing to her friends - they were used to seeing her happy and energetic. Now she’s learned to talk openly about Crohn’s and share if she’s not feeling well.
Personal experience with nutritional interventions – Catalina
“For eight years, I managed my Crohn’s with a combination of the Specific Carbohydrate Diet (SCD) and EEN.”
Catalina writes about her experience and the challenges she faced using nutritional interventions to manage Crohn’s disease. She also shares her hope for the future as we learn more about the role of dietary interventions, specifically the SCD, and their role in treating and managing IBD.
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