Although I’ve ridiculed friends for blogging or Facebook posting about their baby’s poop, there’s really no way to talk about UC without talking about poop. However, because this blog is intended primarily to be a resource to others considering surgery, I don’t intend to let my pre-surgery shitty UC symptoms (pun intended) consume this blog. That said, because I know I have driven myself crazy asking, “Am I sick enough for surgery?”, it’s necessary to talk a bit about my experience with UC (including poop) and the turning point that put me on the path to surgery. I hope my experience offers a little context and help for those considering surgery, which is an intensely difficult and personal decision. I’ll try to keep it brief.
For me, my UC symptoms are fivefold: (1) diarrhea; (2) blood; (3) cramping/pain; (4) frequency; and (5) urgency. Of these, urgency is by far the worst. It takes your life away. For years, I’ve been consumed with always knowing where the nearest bathroom is. It’s the first thing I scope out when I get to a store or a restaurant or a friend’s house. Or when I’m on the road. 10 minute rides can result in an urgent pitstop. Most visits to a store begin (and end) with a trip to the bathroom. I’ve run out of just about any place you can think of to find a bathroom. I’ve used the family restroom or the women’s restroom if the men’s was occupied. I’ve worn underwear liners. I keep a change of clothes in my car. I’ve shit in a bush while walking my dogs. I’ve shit my pants.
Take that intense urgency (e.g., less than 5 minutes to find a bathroom, and often much less), multiply it by 20-30 times a day, add in piercing abdominal pain and cramps, and cap it with some bloody diarrhea, and you have my typical UC flare. Most people I know probably have no idea my situation is that bad. I generally don’t complain about the specifics (for obvious reasons). I’ve been dealing with it so long, it’s just part of my day. I honestly couldn’t tell you what a normal shit is like. I have no idea. My disease also tends to be worst in the early morning and evenings/night, allowing me to get through most work days with only 3-4 trips to the bathroom and relative control. Most days. There are also the days where I’ve hung up on conference calls to run to the bathroom or parked in disabled parking because I didn’t think I could make the run from my normal parking spot.
That’s a major flare. The rest of the time it’s pretty much the same, but slightly less intense or miserable (maybe 10 or 20 times a day, instead of 30). Right now, I’m in a partial steroid-induced remission, but am still going to the bathroom 10+ times a day, including 2-3 times at night, still experiencing some urgency, still bleeding, still cramping. And this is a major improvement from my recent flare.
The bottom line (pun intended?): UC sucks. It is physically uncomfortable and exhausting, and psychologically damaging. Living in a flare is not living at all.
* Office Space (20th Century Fox, 1999)