Posted by Nour Al-Timimi on April 02, 2021
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.
It is not unusual for IBD patients to have a love-hate relationship with food! In our presentation, we wanted to focus on how diet can be different when recovering from a flare and wanted to identify common trigger foods. In addition to food, being mindful of our mental health is just as imperative! A flare can be very draining physically on the body and can emotionally be just as taxing. We shared some useful resources that can provide patients with healthy alternatives for living well in a chronically ill body.
My presentation segment was on medication maintenance. It is really easy to fall in the mindset that one can discontinue their medication because they start feeling better. It cannot be emphasized enough that it is really important to communicate with your provider before making such a huge decision that could be detrimental to your health. This is more of the case with adults rather than in pediatrics. It is usually the guardian that is administering their child’s medication. Of note, while doing some research on this topic, I found that there are not many resources for children that really illustrates the relationship between medication and gut healing or improvement. The PAC would really like to consider a potential toolkit to make this information available – and it can even help adults as well in adhering to their medication regimen!
As a patient who has lived with ulcerative colitis for the past 10 years, it is still a challenge for me to comfortably share with others about my disease. And I believe a big component that contributes to this reluctance and fear is how society views patients with chronic illness. It is an ongoing struggle of not wanting to be viewed as incapable and as a consequence pushing your body to unfavorable limits. I am grateful to have been able challenge myself to share my experiences with others who might benefit from them via the Community Conference.
I hope you will take a moment to learn about Recovering from Flares in Episode 3 of our imPACt podcast. Here's where to find us:
--