I am writing to you with the hope that I can make your life just a little bit brighter. That hope is what governs my friendships, my academic pursuits, and my involvement in the United Ostomy Associations of America (UOAA) and the Crohn’s and Colitis Foundation of America (CCFA). Throughout my years of illness, I continuously gather knowledge that helps me get through the challenges of Crohn’s disease and having an ostomy. I am willing to share my haphazard collection of thoughts, not because I think I have all the answers, but because I think I might have a few useful things to say. We shall see.
While I write, I think of my wonderful friends. Through CCFA’s Camp Oasis and the UOAA conference, I have been blessed with the privilege of meeting people who share some of my experiences. These beautiful people encourage and support each other when life gets rough, and they rejoice with each other when times are good. I want the best for them, and for you, dear reader. If I have any scrap of advice, encouragement, or empathy to share; if I can alleviate someone’s frustrations just a little, this will be well worth the effort.
I should tell you a bit about myself. For now, we’re just going to skip over the interesting parts of my health history. Here’s why: weird things happen with me. I do have organ systems that are fine, but most have been screwy at some point. One doctor called me a “delicate flower.” Ha. A lot of them look a bit concerned when they look at my chart. Most things are complications of Crohn’s disease and nasty medication side effects, and the rest is just lousy luck and inexplicable quirks.
I was diagnosed with Crohn’s disease when I was 14, I went through all the various treatment options, including a feeding tube, until some of my innards were just beyond saving. The idea of ostomy surgery absolutely terrified me. Turns out the darn thing saved my life, and I am free from some of the challenges of a perpetual Crohn’s flare. My life no longer revolves around bathrooms, and I can eat so many foods that I had to avoid entirely for 8 years.
Those of you familiar with any illness-related community have heard lots of “comeback” stories by now. I think those stories are told to show us that we can overcome our limitations and achieve great things. I respect everyone who has overcome their obstacles and gone on to be awesome, and I will always support their efforts. But I have a serious problem with comeback stories. I am truly happy for the storytellers, but I always feel like they are stronger, better people than me. I definitely have not reached the comeback stage. Every day is a struggle for me, and sometimes I have no idea why I choose to continue waiting for things to turn around. I know I am not the only one who deals with these issues. That, my friends, is why ostomy support groups and online communities exist. We need to stick together!
Love from your partially unstuffed friend
I look forward to hearing from you as you explore and enrich our communities! You can reach me at firstname.lastname@example.org or find me on Facebook