It was a gorgeously sunny October day last year when I packed up my harness and backpack and headed out the door. No, I wasn’t going on a hike or climb. In fact, the place I was traveling to wasn’t even outside. As I arrived at my destination, I walked down the sidewalk and through the double sliding door of the building. I made my way to the check-in line by the front desk and felt somewhat self-conscious with my huge backpack sticking out of a bag slung over my shoulder. A few moments later, I entered the crowded elevator, where people gave me quizzical glances. Such gear would be expected at a trailhead, but it was not the norm here. However, today, having my pack and harness was as important as it would have been on any hike or climb. As the elevator door opened on the ninth floor, I nervously walked to the department down the hall to meet my wound, ostomy and continence (WOC) nurse for the first time. It was time to have the site of my stoma marked.
I had been told to wear my favorite pants to the meeting so that the location would match with my clothing. However, I also decided to bring my harness and backpack. With outdoor activities being a huge passion in my life, I wanted to make sure that my stoma location would work as well as possible with my gear.
At the meeting, the nurse shared important information about what to expect with output, eating, activities etc. Finally it was time to get the location marked. I felt a little funny explaining to her that along with making sure the spot worked with my belly and with my clothing, I also wanted to test it out with my harness and pack. Fortunately, she didn’t make me feel silly about my request at all, and soon I had a big blue dot on my abdomen about two inches to the right of my belly button and two inches below. This was a good location because it was below my belt line. This meant that gear or clothing waistbands would not rest on my stoma or prevent output from reaching the bottom of my pouch.
When I got home, I stood in front of the mirror and looked at the mark. I tried to picture what it would look like with a stoma there instead. Suddenly, my decision to have the surgery seemed very real, and I felt excited and nervous at the same time. To further discover how my new stoma spot worked with my clothing and gear, I filled up the ostomy appliance my nurse had given me with applesauce and taped it on top of the blue dot on my belly. I then went out to the garage to dig out every backpack I owned. The one I had taken to my nurse visit was my favorite overnight one, but there was also the brand new day pack I had just bought before I got sick again. I had only used it once. And then there was the large load-monster of a pack that I took on very long trips. Would that one work with the ostomy? One by one, I tried on the packs and they all seemed to rest well above my stoma. I was encouraged.
When I first heard about my friend Charis’s IBD/Ostomy themed pumpkin decorating contest on her great new Facebook site (http://www.facebook.com/FullFrontalOstomy), I knew I had to enter. However, I had no idea what to do for a design. I went to the store and bought a pumpkin and sat it on my table… waiting for something to come to me.
And it did. While changing my appliance at 6 a.m. my stoma started to act up and spew output. I used to get frantic when this happened, but now I am accustomed to it and just chill out for a while, paper towels in hand and let my stoma do its thing. However, the event did spark the inspiration for my pumpkin. I suddenly knew that the round vegetable on the table would provide the perfect canvas for a portrait of my mischievous stoma! That afternoon, I painted my creation.
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.
When I first got out of the hospital around Thanksgiving in 2010, I was overwhelmed with my ostomy appliance. I remember calling Doug on the phone in tears the first time I tried to change it on my own. Output had gotten all over the place, there was way too much skin showing around my stoma, and I had put the one-piece pouch on quite crooked. Doug had gone to the airport to pick up my Mom so that she could help take care of me during my recovery and wondered why I hadn’t waited until they got home so that they could assist with the change. I didn’t have a good answer. I have a fierce independent streak, and I wanted to prove to myself that I could do it on my own. However, after that disaster I quickly realized that I wasn’t ready. I needed their help, and Doug or Mom assisted me with every single change in those initial weeks.
Though I was feeling better about my appliance after a few weeks, I still wasn’t all that efficient or confident at changing. So I went back to my stoma nurse for a refresher. She gave me some more tips which helped and soon I could change my appliances by myself. Still, it was the one thing ostomy-related that made me cry out of frustration time and time again. My stoma always created output during the change, making things take a long time, and I struggled to get my pattern cut to the right size. I constantly worried that I wasn’t getting things perfect and that I was either going to strangle my poor stoma or that my skin was going to get eaten away from cutting the wafer too big. It was at these times that I had my biggest moments of doubt about backpacking. If I couldn’t even handle doing the changes in my house, with hot running water and oodles of washcloths at my fingertips, how would I possibly do it out in the wilderness? No matter how I tried, I couldn’t picture it as a reality.
The problem was, I was jumping to step 20 when I should have been concentrating on getting the basics down. I realized this was causing undue stress and anxiety, and I began to focus more on the moment and tasks at hand. I could figure out the backpacking part later.
“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.