Crohns And Colitis Awareness Week
It's Crohns And Colitis Awareness Week, so I'm going to bitch about this.
I have had Ulcerative Colitis for one-third of my life. It will never, ever go away. There's no cure. The absolute most I can hope for is brief periods of remission.
I've missed out on a lot of life events that most people take for granted in their 20s and 30s. Like, I've been stuck in the bathroom for my kid's field trips, grandparents' funerals, work networking events, movie premiers, family holidays…
I also got written up at work for absences until I explained that I have this illness which will never go away and requested ADA accommodation to attend doctor appointments and medication infusions (without pay). And a cubicle close to the restrooms.
My employer demanded a doctor's note, probably thinking I wouldn't be able to get one.
Joke's on them; my gastroenterologist was more than happy to sign a letter explaining why these accommodations were necessary.
The treatments available are for Inflammatory Bowel Disease are effective in only small percentages of the population, and most of them aren't particularly safe. Steroids (prednisone) work great but wreck my blood sugar control, fuck with my mood, and make me fat. Most of the treatment options involve some level of immunosuppression, and that's not a great thing in a post-COVID world that wants things to be "normal" again.
I'm currently on a kind of experimental treatment that targets mast cells, and it seems to be keeping things under control.
Only through research can a cure for #IBD - or even just effective AND SAFE medications - be realized.
If you're interested in learning more, or donating to the Crohns & Colitis Foundation to help fund research and patient care programs, please visit https://tiltify.com/@sullivantwins/mrgl.
