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Fellow IBDers! What are some things you wish could be improved that would better improve your experience living with this chronic disease?

N

NeverBeenEasier

Hello, I'm a Crohn's patient who will be going to a research conference to discuss what gaps there are in the care of patients living with Inflammatory Bowel Disease.

I lived with Crohn's for around 8 years and have my unique experience surrounding my diagnosis. However, there are certain experiences such as fistulas, obstruction, ostomy, etc. that I have been blessed to not have to deal with.


So! I wanted to reach out to everyone here to see what sort of questions, what innovations, etc. that you are looking forward to and/or what you think needs to be improved upon. I'll provide some examples below:

  1. Why do some patients experience biologic failures moreso than others? What is the biological mechanism behind that?
  2. Do people in the LGBTQIA+ community experience this disease differently? Does hormone therapy impact care and/or the type of medication they are able to receive?
  3. Wearable biotechnology that measures fecal calprotectin through sweat, so we don't have to scoop our poop up.
Hopefully this gives you guys some examples regarding what sort of feedback I am looking for! It can be anything from scientific, monitoring, complications, social, etc.
 
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