Monday, July 12, 2010

One Year Ago: Flashback to the Beginning of the Final Flare

In one day, I went from top of the world to a minor panic attack.

I ate popcorn. I ate Chick-Fil-A (it was free; my brother and I had dressed up like a cow and received combo meals as a reward). My stomach still hurt a bit sometimes, but not too much. I was in remission. I was "managing" my UC. I was working, going to school, hanging out with friends, back into life. I wasn't missing out on anything. Then, that day a year ago, I went to the bathroom... and there it was. Blood.

My mind raced. No, this couldn't be a flare. This was totally a fluke; it was the popcorn; it was nothing... I went on with my day, and soon convinced myself I had imagined it. I felt totally fine, no pain, no cramps, my appetite was great. But in the back of my mind, a small fear began to grow.

Unfortunately, I had not imagined the blood. It continued, and grew worse. But it still wasn't bad. I didn't really feel sick. I had an incredibly weird arthritis flare where one minute, I was walking, and the next minute, I was on the floor, scratching my head. My legs simply could not hold me up. A few weeks of a wee bit of prednisone (compared to the amount used to treat my UC) did the trick and I soon my legs were working again and my massively swollen joints eventually shrunk back so I could again see my kneecaps. But the bleeding continued. I finished out my summer class. I finished my summer job.

In August, the one-year anniversary of my near-death experience with a horrible flare plus pancreatitis passed. I marked the event with thankfulness, noting how far I'd come since then. See, maybe I was flaring yet again, but I wasn't horribly ill. I was still eating, mostly, and I was managing. I was functioning. Alas, I'd spoken too soon. A few days later, I found myself in the ER, throwing up and massively dehydrated.

A few days of fluids, pain meds and nausea meds and I was back on my somewhat unsteady feet. We all knew this was just a "Band-Aid" fix - nothing was done to bring the flare-up under control. They discharged me and the next day I packed up my car and moved into my new apartment. The following day, I started the fall semester. Note to self: any semester that starts two days after you get discharged from the hospital with unresolved problems will probably not turn out so well.

The semester continued, and it became apparent that I was not doing so hot. I wasn't terribly ill, and the flare-up was progressing quite slowly, but I knew I was reaching the end of the line. They doubled my Remicade dosage and I planned to get infused more frequently. This was pretty much my last hope, and I knew it wouldn't work forever. After a scope that revealed a sick, ulcerated colon, my GI doctor and I had a long, long appointment that concluded with a referral to Dr. A, the surgeon. My colon's days were numbered. We decided that the best plan was to wait until the end of the semester, then have surgery over Christmas. We discussed how important it was to do the surgery when I wasn't on steroids, when I was well-nourished, and when I wasn't flaring.

A few weeks later, though, I was much worse. I couldn't eat, I couldn't sleep, I was bleeding like mad, and I was in a ton of pain. GI Dr gave me two choices: get admitted for IV steroids, or tough it out at home on oral steroids. Guess which one I chose? ;) The first day on steroids, I sat on the couch crying as I tried to force myself to eat something. You can't take that much steroids on an empty stomach, as they are very caustic. After two bites, I had to run to the bathroom. I was so sick. I was having such intense stomach pain. I went to the student health center, where the concerned doctor strongly suggested the hospital as a potential solution. I declined... they gave me stronger pain meds.

Then... I got the swine flu. I'm not kidding. Oh, yeah. Fortunately, I knew what I had, and within a few hours of falling ill, I started antivirals, so it wasn't a horrible experience or anything. My stomach condition just continued to deteriorate. The massive dose of steroids made me want to munch on food, but putting anything in my mouth resulted in so much pain and sickness... it was hysterical. I'd stand there, staring at all the food in the cupboard, take some out, stare at it, decide it wasn't worth it, put it away, close the cupboard, walk away, walk to the fridge, open it up, take out some food, stare at it, put it away... hopefully no one was watching me! ;)

I'd be up all night pooping my guts out. I wasn't really eating, so I had no idea how it was possible to have this much diarrhea. Finally, one morning, I was so dehydrated that I was slurring my words. This typically is not a good sign. So my roommate took me to the doctor. After some IV fluids, I perked up a bit, but by this time, my GI doctor had been called. The steroids were a last resort. And they weren't working. It was time. I was getting admitted. And I'd be leaving without my colon. And so I embarked on this journey as a semi colon...

Hannah ;)

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