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.
Mollydog was always full of crazy antics on our outdoor trips. She liked to hike with 3-foot-long logs in her mouth and knock us off the trail when she passed by. She managed to sneak up to our food stash and wolf down that one special dessert item we were saving for the last day of a trip. Molly loved to sleep between Doug and me with her four legs fully extended so that we were mushed up against the outside walls of our tiny backpacking tent. She relished going for swims, rolling in the mud and then curling up in my sleeping bag.
Muddy Molly on a backpacking trip in Wyoming’s Wind River Range.
This summer, there is an inescapable void. I no longer look over my shoulder when I am hiking to keep from getting whacked, guarding my food at dinnertime is now unnecessary, there is too much space in the tent and my sleeping bag is unusually clean.
Last year on this day, our beloved Mollydog passed away.
Molly joined our small family unit when she was 7 weeks old and took to the trails immediately. For the next 13 1/2 years, we were a party of 3 and were pretty much inseparable. Molly came along on just about every skiing, hiking, backpacking, climbing and canoeing trip we went on. She would often jump in the car as we were packing up, fearing that we might leave her behind. She need not have worried– adventures were always ten times more fun with her along. There were only rare instances when Molly didn’t join us– usually when we were doing long multi-pitch climbs or traveling to an area where dogs weren’t allowed like national parks.
A young Molly heading to the river for a swim.Backpacking in Wyoming’s Wind River Range.
“How about going ziplining,” our friend suggested. My first thought was, Absolutely! That sounds fun, I have always wanted to try it. My second thought was, Wait, what about my ostomy? How will my pouching system hold up to zipping through the air in a harness attached to a cable? Not to mention that there won’t be any restrooms for three hours. What if my pouch explodes or leaks? Maybe I should hold off.
Some fears keep you alive– like being afraid to climb higher on a route because it is above your ability, or being terrified of a river crossing because you know it might sweep you off of your feet and send you into the rapids. But there are also those fears that don’t have such dire consequences. The ones that pop into our heads and stop us from doing things that would actually be rewarding and good for us.
I recognized that the fears that were trying to stop me from going ziplining were of the latter variety and purged them from my head. I knew I could go 4-5 hours before draining my pouch– even longer if I pushed it a bit and let my appliance fill up a tad more. I knew the harness would likely cause no problems and that I was strong enough for the adventure. There was no reason not to give it a try.
We signed up for a 5-stage tour through the tree tops at the Crested Butte ski resort. One of the rules was that you couldn’t carry anything in your hands, so I guzzled a bunch of water to avoid getting dehydrated. Then we met with our guides and harnessed up. Much to my delight, the bulky, adjustable one-size-fits all harnesses still worked fine with my pouch. The upper part of the hip belt sat well above my stoma, and the harness barely touched my appliance.
Today I went in for a visit with my stoma nurse for a very minor skin irritation issue. Her office is right next to the hospital where I had my surgery and also next door to my surgeon’s office. As I was pulling into the parking lot, I realized I had not been back to this area of medical establishments since mid-March. Quite a record after driving there every couple of weeks for four months while I was preparing for and healing up from my ileostomy surgery. As I drove by, the tiny park next to the hospital caught my eye.
I had some complications after surgery due to my body being difficult and stubborn in its healing, which required some additional hospital stays. At first, I had no idea this little nature-nook-of-a-park even existed. One day, knowing of my love of the outdoors and my somewhat anxious state during one such hospital visit, my surgeon phoned my room and told me that the weather was gorgeous and that I should head outside to visit this place.
Though it was nice outside, it was a bit chilly and I had left my jacket in the trunk of the car before checking in to the hospital a few days prior. I also had a large drain hanging from my butt cheek. Not the most ideal situation, but I had been given permission to go outdoors!!! Nothing could have stopped me. As I headed through the gate of the park, and situated my sore butt carefully on the bench, peace came over me. It was winter, so there were no leaves on the plants, and I only saw one bird up in the branches. Still, this tiny bit of nature provided just the soothing effect I needed. For the first time since checking in, I found my mind wandering away from the hospital to thoughts of future adventures. I wrote in my journal for a while, soaking in the sunshine and fully enjoying the moment until the cool air finally hastened me back inside. I returned to my room feeling rejuvenated and hopeful. Continue reading “The Nature Nook”→
Seventeen years ago today, I married my husband and best friend, Doug. We had already been a couple for four years at that point, which equals a grand total of 21 years together.
Our life together has always been steeped in outdoor adventure. One of our first dates was a winter camping trip to the Porcupine Mountains in the upper peninsula of Michigan.
Snowshoeing on a winter camping trip in the Porcupine Mountains, Michigan, in 1990
Since then, we have made may trips into the wilderness to rock- and ice-climb, backpack and ski. Such trips are often riddled with trials. We have weathered storms for a week in our tent, dealt with some scary moments on climbs and made it through some of those tension-filled arguments that oftentimes erupt between couples during stressful moments in the outdoors. We have always emerged from these events stronger.
On top of Gannett Peak, Wyoming, in 1999
Perhaps facing these adversities in the outdoors together helped us prepare for one of our biggest challenges yet: my severe UC flare up and eventual ileostomy surgery. Just like facing those trying times in the mountains, this experience has helped strengthen our bond and has showed me the depth of my husband’s love for me.
Often in life, it is the simple things that demonstrate love the most. Almost every morning, when I woke up in the hospital around 5 a.m. Doug would be there. During my hospital stay for my final UC flare, he helped get me through the seemingly endless days by bringing my favorite chick-flick DVDs to my room and watching them with me (yes, this included The Notebook–not one of his faves). Doug strolled the same hospital floor walking route with me countless times to help me maintain strength and kept me from becoming too scared when we stopped at the scale in the hall each day to discover I had lost yet another few pounds. When I was too tired and sick to stay in contact with my family, friends and coworkers, he worked hard to keep everyone updated. Doug held my hand during my first Remicade infusion and monitored my vitals even more diligently than my awesome nurses. He took off from work so he could be at the hospital when I was making important decisions about my treatment with the doctors. He came with me to my initial surgery consult so I wouldn’t miss a bit of information.
After surgery, Doug reminded me to push my pain machine button on schedule. He brought me ice chips and summoned the nurses for help. He sat with me during my first couple of appliance changes with the nurse and then helped me when I got home, never once showing any aversion to my new plumbing. He got to know my surgeon and became a partner in my care, oftentimes calling and communicating with him when I was just too exhausted and sleepy. Doug became my wound-care expert when my incision opened up, coming home on his lunch break to painstakingly pack it with gauze–just one of three times he did this each day.
And most importantly, he was always supportive of my desire to have the surgery, and has continuously made me feel beautiful even with the addition of a stoma and pouch on my belly. When I had moments of doubt and tearful times, he was there to lift my spirits and remind me of how awful I felt before the operation and the new life this was going to give me. Now that I am feeling better, he continues to support me by helping to make these films. I pretty inept at most things techie, and could not do this project without his help. My biggest hope for all new ostomates is that they have someone as loving and supportive as my husband in their life to help them get through surgery and on the road to recovery.
Hopefully, in 30 more years we won’t be sitting in rocking chairs on the front porch, but instead will still be swinging from ropes on rock faces. There are likely to be more uncertain times between now and then, but I know after this challenge, we are ready for anything.
Ostomy Outdoors 