I had to do a double-take when I looked at my Ostomy Outdoors blog counter the other day and saw that it had hit the 500 views mark after only a couple of weeks. I never expected to have so much interest in the site. Thank you to everyone who has read, commented on, or included links on their own websites or Facebook accounts regarding the blog and videos.
I know firsthand the importance of hearing other people’s stories when facing ostomy surgery. The whole experience is a complex stew of hope, fear, excitement and worry. One needs help sorting through these feelings while trying to make sound decisions… usually while feeling very ill on top of it all.
It is crazy what goes through your mind before surgery. Of course, I was worried about all the big things like how painful surgery would be, and how well my stoma would function, and if I would have any complications. But many times, other goofy little worries would pop into my head that should not have been on my radar screen. One of those was whether or not I would be able to eat GORP.
GORP, or good old raisins and peanuts, was a staple of my wilderness diet. I would create all sorts of great mixes with dried fruit, nuts and a variety of chocolates and candies. Yet nuts and raisins are both on the list of foods to be cautious with when you have an ileostomy. I feared that I would never be able to take one of my favorite treats into the wilderness again.
On April 16, Doug and I headed out for our first post-surgery backpacking trip. We chose an easy and short route for the overnight excursion, though weather threw us a challenging curve ball. Still, it felt wonderful to be out there again. There was one other unexpected bonus: the campsite had a privy. After years of constantly scoping out the closest bathroom due to UC, it was funny to find one in the wilderness.
My biggest concern on the trip was keeping my pack light. I wanted to make sure I took it easy on this first excursion to let my body adjust to carrying a load of gear again.
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.
I managed to get three days of snowboarding in this season which is more than I ever would have imagined!
Of course, one would hope that post-surgery improvement in sports would occur in a linear fashion, getting better and better each time. Unfortunately, that was not the case for me. My third day of snowboarding on May 8th (closing day at the resort) was the most frustrating. It had nothing to do with my ostomy, which once again caused no problems at all. The problem was hard-packed snow and not knowing how much beating up my body could handle.
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.
Ostomy Outdoors 