Mar 6, 2018
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here's my facebook post announcing my surgery...
I don't ever write these long posts but this is kind of a big deal and I think I'm entitled. If you've spoken to me (or my parents) at all recently, this is old news for you, but for those of you who are hanging out on the sidelines, here's the official update on my life. Gonna try to keep it short and sweet, but there will probably be a TLDR at the end anyway. Item #1: I'm taking a year off of school to focus on my physical health situation. Item #2: A week from today I'll be in the hospital, hopefully doped up on copious amounts of pain meds after successfully completing the first of a series of three colorectal surgeries. Item #3: I'm having my colon removed, ladies and germs. After two years of struggling to find a medical therapy that would push my ulcerative colitis into remission, I've hit a wall. Unfortunately, I'm out of options short of hiring a witch doctor and a full colectomy has become "inevitable." If nothing else, though, at least I can say I tried. I gave my body a fighting chance and I did what I could to hang onto my large intestine. The thing is though, medicine isn't perfect and while research is still being conducted and new drugs are being developed, the reality of the situation is that I can't live my life this way. In addition to dealing with the inconvenience and anxiety associated with frequent bathroom visits, I've been battling overwhelming fatigue, exhaustion, pain, malnourishment, weakness -- you name it. I like to think I carry myself well and that I put on a brave face with my 3.5 GPA and my smiley summer travel photos but I've been on high doses of corticosteroids for the entirety of these past two years with the exception of a few stray months. In addition to the symptoms of my colitis, the side effects of these meds have been completely destroying me. Give that a quick Google if you feel so inclined. But to stay on prednisone long-term could potentially have life-threatening consequences and I'm not having it. They don't help nearly as much as they hurt and after all this time, I'm tired. I'm sick and tired and I'm sick and tired of being sick and tired. And as scary as surgery (and the pending recovery) is, I've been equally afraid of living an incomplete life. At nineteen years old, to feel this trapped in your own body, trapped in bed while your friends grow, to feel as if there's no way out... it's crushing. I've been crushed by my IBD. And that's okay. These surgeries are going to help me take my life back. Yeah, I'll have an ileostomy for six months and I'll be in pain frequently and I'll be stuck in bed again, but at the end of it all, I'll be pain-free. I'll be able to eat without worrying so much about what'll happen when I do. I'll be able to exercise without feeling faint. I'll be able to sleep through the night for the first time in months, go on roadtrips, focus on what actually matters to me instead of only what requires my immediate attention. I'll be able to do so many things I long since gave up hope of doing. I'll be a new woman, essentially: a new woman given the promise of a more fulfilling life. What a gift that is. Item #4: I'm more terrified than I've ever been. Item #5: I'm more hopeful than I've ever been. TLDR; I'm having my colon taken out. It's scary as all hell, but I'm gonna be so much better off by the time summer rolls around. (Also gimme Netflix recs, pls & thx.)
The c diff monster is back. Oh how I haven't missed going to the bathroom 5-10 times a day. Starting second round of antibiotics and this is my fourth dance with this monster. I feel awful.
Dealing with a awful Endometriosis flare up on top of my Ulcerative Colitis flaring up. I kind of feel like my colon is on fire. Keeping the pain at bay with cannabis oil and edibles today. Trying to keep calm even though my pain is dragging me down.
I’m having a rough night. Started my taper down to 30mg. Been crying on and off today, feeling extremely jittery and I feel like a mess. On top of it. Ulcerative Colitis is acting up. Been running back and forth to the bathroom with my stomach cramping. So over today. Hopefully my Xanax my doctor gave me for while I’m on prednisone kicks in soon so that I can sleep!
Dabs. Staying comfy. Got my pain to chill out with some yummy sprite with a thc/cbd tincture, and just took a couple of thc capsules to see if that won’t help bring down my pain level. Soooo achy today. Ulcerative Colitis is currently kicking ass. I feel so bloated and crampy. :( Binge watching Sword Art Online from the beginning. Bringing back all of the feels.
so like??? it's really weird havin stuff come out of your rectum when it's not attached to anything??? what is going ON DOWN THERE PLEASE DON'T MAKE ME PUSH I HAVE A VERY SORE INCISION