Hi! I’m Hayden, 23 and I have Ulcerative Colitis. I’ve never shared my condition with anyone besides family and a few close friends I’ve kept close with throughout this ordeal (and a few strangers on the internet 😜), so I figured #CCAwarenessWeek is a good opportunity to write about my story/thoughts. ➖
At 19, I was in my freshman year of college when over the span of a couple weeks, I went from being a perfectly healthy guy to suddenly having to run to the bathroom, fearing if I’d make it in time or not (results varied 👀). I realized something was seriously wrong and met with a GI who scheduled a colonoscopy, and diagnosed me with UC. That was a lot to take in but my doctor was optimistic about treatment options and I never imagined I’d still be dealing with major symptoms four years later. Fast forward to today and we’ve now thrown everything from chemo to biologics to FMT (that’s a fun one) at this monster of a disease with no success; and surgery is on the horizon. Having a major organ removed is frightening, especially with no guarantee of success, but the thought of being able to function normally (even semi-normally?) again is incredible. Currently I’m lucky if I get out for a few hours per day, and even that takes careful planning- not eating beforehand, taking Imodium, etc ➖
As each birthday has gone by since diagnosis without progress, I’ve joked with my parents that I still feel like I’m still 19 and life has simply been on “pause” for the past few years - if only that were possible... Having some of the best years of my life taken from me (in regards to fun, relationships, professional development, etc), missed holidays, trips, etc... has been insanely difficult, but I’m thankful every day that I’m still alive and kicking, and optimistic that someday soon I’ll be free of this beast.
Sorry for the poor writing 😉. To all of you going through something similar, hang in there!
#myIBD #ulcerativecolitis #ccfa #invisibleillness #uc #crohns #ibdfamily #ibdwarrior #spoonies #crohnsandcolitisawarenessweek