Thank you for posting this. I have ulcerative colitis and have had for 35 years. IBD is difficult, often painful, and embarrassing. Research has found some very helpful treatments like Entyvio but there is still no cure. The gut is a complicated system including a "microbiome" that varies tremendously from person to person. I do know there is more research now than ever before.
Raising awareness is important. So is providing support and raising funds for research.
Little things can really matter. Even though I am doing much better on Entyvio, yesterday I had painful cramping and urgency in a store. I asked the nearest shop attendant where the facilities were, and he said there were none. He gave me directions to public facilities near the store. I almost cried, but instead explained calmly I had ulcerative colitis and couldn't wait. He kindly let me through into the staff area where I was able to use the loo. Not ideal as he had to take me through the staff lunchroom etc., and wait nearby, but his simple kindness helped me greatly.
Years with this rotten disease has taught me that asking for help is ok.
IBD is relentless and life long. It is hard that even people very close to me really do not know how exhausting and emotionally draining it can be. Explaining you can't wait is hard. Explaining your fatigue, and why going on a family outing where toilet facilities will be scarce is too stressful are hard, too.
I really appreciate the signs on disabled loo doors saying not all disabilities are visible. Sometimes it is the urgency alone, but often I just want a private place to deal with my symptoms without worrying I am freaking out everyone in the shared facilities. A small thing but when you have IBD it feels huge.
To my fellow IBD "experts," a toast to your courage, perseverance, and downright grit. And thank you to the health professionals who help us, and the researchers looking for the cause and cure.