A dot marks the spot

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.

The paper cut-out shows where my stoma is. The location between the waist belt and leg loops prevents the harness from rubbing on my stoma. My belly button sits right under the waist belt.

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.

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The long haul (feat. new video)

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.

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Memories of harder times

Last year at this time, I was just beginning my downward spiral into my final severe Ulcerative Colitis flare. Each day of the next few months will be an anniversary of something UC-related, and the flashbacks to those harder times will be abundant: there are the dates of my multiple ER visits, the admission for my 16-day hospital stay, my first Remicade infusion, the day I came to realize that surgery was my best option. It seems like reminders of my past illness are lurking around every corner. But then so are reminders of my amazing recovery.

Healing physically and regaining strength follows a fairly logical and direct path; recovering emotionally is a bit more circuitous. Sometimes it is hard for my brain to grasp all that has happened in the past 12 months. How in the world did I make it through the tough events of the year to get where I am now? It all seems to have gone by so fast, and I don’t believe my mind has fully processed everything yet.

Waking up from surgery on November 8th, 2010

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Dealing with Output on the Trail (feat. new video)

Many new ostomates wonder how to deal with their output on hikes, as we usually have to empty our appliances every 4-6 hours. The answer is to dig a “cathole.” This is the term commonly used by backpackers for a hole to bury feces in. Because this is a very important skill for any outdoor enthusiast with an ostomy (or IBD) to have, I created a short video to cover some of the basics.

I am guessing that I have dug around 500 catholes in the backcountry in my lifetime. As an ileostomate, I am increasing that number at a rapid rate. Gone are the pre-ulcerative colitis days of having 1 or 2 bowel movements in a day. Now I consistently empty my pouch around 6 times in 24 hours. On the trips when I don’t use closed-end pouches, that equals 48 catholes on a 7-day trip! Knowing how to properly dig a cathole to protect the environment and water sources is crucial.

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A Case of 14er Fever Requires a Lot of Water (feat. new video)

On a three-day backpacking trip this past weekend, my husband and I finished our fifth and sixth 14ers  (a peak above 14,000 feet) since the beginning of July. Most summers before this, I was lucky if I did one or two. I have definitely caught the 14er fever. Hiking these peaks has provided me with the perfect opportunity to get outdoors and challenge myself physically while still babying my abdominal muscles. Indoors, I do a battery of  physical therapy exercises that safely strengthen my core. In concert, these two activities will prepare me for the more rigorous demands of technical rock climbing in the future.

While hiking these peaks, I have been amazed at how quickly I am progressing and getting my strength back. While I walked the first one at a turtle’s pace, I am now hiking the peaks briskly and with little fatigue. All these successful peak hikes have also made me realize how well I have adapted to my ileostomy. Managing my appliance on the trail using both closed-end and drainable pouches has become second-nature. Moreover, changing my wafer outdoors, which is one of the things I was most fearful of, has proved to be very similar to doing it indoors except that I must pack out the trash (and the views while changing are more spectacular).

However, one aspect of my ileostomy that still baffles me is figuring out how much water to drink. One function of the colon is to absorb water. When it is removed, the small intestine is able to adapt and take on some of this role, but not as well. Because of this, ileostomates must drink more water to avoid dehydration. It has not been unusual for me to drink 8+ quarts of water on some of my all-day hikes. Up to this trip, I have not had any issues with dehydration. However, conditions were different on this excursion. The temperatures while making the strenuous uphill hike to camp were in the 80s which is warm for the elevation we were at. Despite drinking almost 3 quarts of water (some of which included a sport drink mix) and eating plenty of snacks along the way, I got to camp with a headache and bad nausea. Before we proceeded to empty our backpacks and set up our tent, I sat in the shade and drank some more fluids. In about an hour, I felt better. I upped my water intake over the next two days and did not run into the problem again.

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Crossing the expanse (feat. new video)

“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.

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Celebrating Ostomy Awareness Day on Longs Peak

Today Doug, his dad, and I summited the 14,259-foot-tall Longs Peak in Rocky Mountain National Park via the classic Keyhole Route. This was an important ascent for me. I had climbed Longs Peak once before in 2007 and had loved the route. When I was hospitalized for 16 days with my final severe UC flare last fall, I would often walk down to a common area that had huge picture windows facing west and gaze at Longs Peak in the distance. I thought back to the day I stood on its summit, and wondered if I would ever be strong enough to be up there again. Today, I answered that question as I successfully hiked 15 miles with about 5000 feet of elevation gain to reach the summit. This peak was different than the others I have done this summer, as it is graded a class 3 climb. This means that the route has some sections that involve scrambling, or using one’s hands to ascend the rock, yet the terrain wasn’t technical enough to require the use of a rope. There are also areas of exposure where a person wouldn’t want to fall. It felt wonderful to move over rock, and the experience made me look forward to the days when I can climb technical routes again. I just want to heal up a bit more first.

Everything with my ostomy went well during the hike and there is not much to report. I once again used closed-end pouches to eliminate the need to take time to dig a cathole and empty my pouch. This helped ensure that we were on the summit before the afternoon lightning storms came. This ended up being an important detail on this trip, as we dealt with one of the largest lightning storms I have ever witnessed in the mountains later in the afternoon. Fortunately, we had just descended to tree-line when the storm reached its peak intensity and avoided being caught out in the open.

The day before our trip, I discovered that our summit attempt would fall on the United Ostomy Association of America’s (UOAA) second annual Ostomy Awareness Day. I was thrilled! UOAA’s call for this special day is to have “Ostomates Unite and Help Others See Ostomies in a Positive Light!” This is a message that is very dear to me and is one of the reasons I created Ostomy Outdoors.

However, I have to admit that I have not always been as open about having ulcerative colitis or an ostomy as I wish I would have been. Truth is, when I was first in the hospital with my severe ulcerative colitis flare last fall, I hardly wanted to tell anyone about it. Sure, I shared the details with my family and closest friends, but I was less open with others. My coworkers were all curious about why I had suddenly disappeared into the hospital. I sent out vague emails to them telling them I had an auto-immune stomach condition. I was too afraid they might look up ulcerative colitis and see what the symptoms were. Once my hospital stay became lengthier, I did fess up and share the name of the condition. Surprisingly, it felt really good to not have to keep everything to myself, and I found that the people in my life were very supportive.

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