One of the questions I get most often from readers of my blog is why I chose to have a permanent ileostomy instead of trying j-pouch surgery. Though I have mentioned a few of the reasons in other posts, I decided to address this topic in a little more detail. The point of this post isn’t to tell you that one surgery type is better than the other. They are both very good options. My goal in this writing is to share the thought process I went through to make my choice.
In the course of my illness, all my symptoms, colonoscopies, and genetic testing pointed to Ulcerative Colitis and not Crohn’s. This made me made me a candidate for either surgery type. At age 38 during the time of my surgery, why would I choose to live with a “bag” for the rest of my life?
It wasn’t a decision I took lightly, and I gathered all the information I could. This began when I was still in the hospital, facing the possibility of emergency surgery. The very kind and helpful general surgeon who would have done my surgery had I continued to decline, visited my room almost every day to check in and patiently answer my seemingly endless questions. He introduced me to the words “ileostomy” and “j-pouch” and gave me a great foundation of information to build on.
“The scariest thing for me through this whole ordeal has been the rapid weight loss over the past two weeks. My muscles are gone and when I squat down to the floor to pick something up, I can barely get back up. I feel like I am doing the hardest move on a rock climb just to do some simple movement. I try to do a couple walking laps in the hall everyday to stay strong and keep my legs moving. I just want to be healthy and well again.”
Around this time last fall, I emailed the above update to a couple of good friends while I was in the hospital with my UC flare. I was so weak that it was difficult to do even the most basic things, like stand in the shower or walk up the stairs. I seriously wondered if I would ever be strong enough to rock climb again.
Last night, thanks to the health I regained through surgery, I made my first trip to the rock climbing gym in over a year. At first it felt foreign to put my harness on and tie my figure-8 knot, but once I placed my hands and feet on the holds and began ascending the wall, the movement felt natural to me.
People can be good at all sorts of games. Some are awesome tennis players, and others play a mean game of poker. A few might even be able to pull off an amazing backbend to win a Twister tournament. I am great at the game of “what if,” and wish I wasn’t so competent at it. I find that my mind constantly likes to worry itself over how I will handle some challenging aspect of having an ostomy.
This week, despite no differences in diet or timing, I had a nightmare appliance change. The second I took my wafer off, my stoma started to spew like crazy, and it wouldn’t stop. Minutes whizzed by, then an hour, as I went through half a roll of paper towels trying to keep up with the mess while still trying to make progress with the change. As the clock struck the two-hour mark, I finally had successfully placed a new pouch on. At that exact moment, my mind also decided to play the “what-if” game.
Yesterday was my sixth-month anniversary of my permanent ileostomy surgery, so it seems like a fitting time to start my Ostomy Outdoors blog. I have been active in the outdoors since I was a child, and one of my biggest fears about ostomy surgery was that I would no longer be able to take part in the outdoor adventures that I love, like rock climbing and backpacking. Through writing and short films, this blog will document my return to these activities after having my colon removed due to ulcerative colitis (UC).
My battle with UC began in 1999. It started out very mild but worsened over the years, with 2009 and 2010 bringing my worst symptoms yet. My abdominal pain increased, and I constantly bled, making it hard to keep my iron levels stable, resulting in fatigue. I would sometimes have small accidents and began to put pads in the back of my undies when hiking, just in case. Of course, I was also a little embarrassed about all of this, and except for my husband and parents, never talked to my friends and family about it. I was a master at covering it up. There were a few times my cover was almost blown. I remember once when I was out hiking, my friends got ahead of me on the trail when suddenly I had to go the bathroom. Without any time to inform them of my situation, I ducked behind a boulder to dig an emergency cat hole. They couldn’t see where I had gone, and thought I had disappeared! Needless to say, they were very relieved when they saw me walking towards them again on the trail. Urgency is one thing when you are hiking; it is another matter up on a rock face. Often if I was feeling ill with UC, I would cancel my climbing plans. Still, most of the time I managed to lead an active life with the disease by ignoring the pain and not letting it stop me.