“We need to talk about your fla[re].”*

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)

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5 Responses to “We need to talk about your fla[re].”*

  1. Chris says:

    Is there such thing as one time flare ups, and not a disease? I generally don’t have issues lately, but 3 or 4 times in the last 4 years Ive seen a little blood, had completely debilitating sharp pains (maybe those are cramps), and I always have taken forever, not realizing it until I noticed at work most people are in and out under 5min if not 2, I’m 10 to 20 normally. The blood and cramps never coincided though, and last time that happened might of been a year ago. I could never figure out a trigger though.

    Read a few posts, major props on the courage. Nice, frank, and informative. Apparently you learn to write in college and law school. If someone in your situation finds this it will be a gold mine to them.

  2. Ben says:

    Thanks, Chris. You can definitely have UC-like symptoms without UC. Lots of folks have IBS (irritable bowel syndrome) symptoms without ever having IBD (irritable bowel disease). The digestive tract is a crazy place. Diet, bacterial imbalance, you name it, can all throw it out of whack. And everybody’s work’s a little different. Definitely no harm in asking you doc next time you see him or her though.

  3. Pingback: A New Year | Know Guts

  4. Laura says:

    I just had my first surgery and have been trying to research the next two as much as possible. I had my surgery done on an emergency basis. My UC diagnosis was only one year ago, but in that one year I tried every medicine that exists for the disease. When Remicade and Cyclosporine both failed and I spent 40 days in the hospital this summer, my doctor said my colon had to be removed. Otherwise, I would risk perforation or the colon becoming toxic. I just found your blog, and this one is so similar to what I was experiencing. Like almost exactly what my life was. Except I am 24 and in school and instead of leaving work it would be having to sketch in and out of classes/exams and worrying about having an accident walking to and from class. Everything is not fun right now, 3 weeks out of the first of three surgeries, but in retrospect, living like that was not living at all. It’s sick how “normal” it gets to be constantly in a state of anxiety about when you will have to run to a bathroom next.

    • Ben says:

      So glad to hear you found my blog and that it is helpful. When I was going through this for the first time, I found other people’s experiences the only thing to help deal with all of the emotions. Not sure if you’ve made it to the end of my story, but I’m currently in between surgeries waiting for my second takedown. Not sure when that will happen, given other circumstances in my life, but I will definitely blog about it. Thanks for checking in, and I hope you have a full and speedy recovery.

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