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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Back to Biking and Running (feat. new video)

Today was Bike to Work Day in Denver. I work up in the foothills, and my daily commute is 26 miles round-trip with roughly 2000 feet of elevation gain. Though I did successfully complete this lengthy excursion for this event last summer, I figured it would be a bit too much after surgery when I am not yet at full strength. Instead, I drove to the park-and-ride 5 miles from work, and made a shorter trip on my bike from that starting point. It ended up being perfect. The route had just enough uphill to work my muscles and get my heart rate up without making me too exhausted. As seems to be the case with all outdoor sports I have been trying so far, I had absolutely no issues with my appliance or ostomy. I wore my usual combo of a Nu Hope Cool-Comfort hernia prevention belt under Comfizz briefs to hold it in place. Over this, I wore the same chamois-padded mountain biking shorts I always wore before surgery. This may sound like a lot of layers, but I find it very comfortable, and I love the way my core muscles feel supported.

Actually, the funniest moment of the trip happened before I left the house. I sometimes get phantom urges where it feels like I have to take a BM even though it is physically impossible with my colon gone and everything sewn up. I got these sensations a lot in the first month after surgery; now I only feel them occasionally. Well, this morning as I was making breakfast and packing up when I witnessed one. Forgetting completely about my ostomy, I thought, “I better really try to go the bathroom before I leave, or I will be miserable holding it on the ride with no toilet possibilities on the way.” Then I remembered that this most definitely wouldn’t be an issue and laughed out loud! These are the moments when I really love having my ileostomy instead of ulcerative colitis!

Biking was not my only sport-related accomplishment this week. I also went for my first jog. I hadn’t really planned my grand entrance back into running. I figured my body would tell me when it was time. Well, last Monday, I gazed out the window and got this overwhelming urge to run. And so I did.

As my feet began to rhythmically hit the ground, I paid close attention to my abdomen. One of my silly fears with running was that my insides were going to shake like a maraca with all the space left where my colon once was. But, no, there were no strange sensations in my abdominal cavity. In fact, everything with running felt really natural, as if I had only been away from it for a few weeks and not almost a year. I went at a slow jog and interspersed it with walking as needed. I ended up going three more times during the past week, the last of which is filmed in the following video.

The Nature Nook

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.
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Happy to be Trying, Blunders and All (feat. new video)

There is nothing as satisfying as knowing that you have faced a challenge and succeeded beyond your wildest hopes. That is how my recent four-day backpacking trip to Rocky Mountain National Park over Memorial Day weekend felt. We hiked 3.5 miles from the car and camped for three nights at 10,500 feet, exploring some of the neighboring terrain on day hikes. (The trip is chronicled in a two-part video: Episode 5.)

Throughout the whole trip, I kept having to pinch myself to make sure I wasn’t in some spectacular dream, feeling so strong and healthy. Was it really only four months ago that I was still toting around a wound vac to heal my stubborn abdominal incision? At that time, my wound still hurt too much to even go on the shortest hike. Now here I was in the middle of the remote and snowy mountains, toting a backpack instead of my vac, immersed in the beauty of nature and feeling pretty much unstoppable.

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Loving Life and My New Normal (feat. new video)

What an amazing week of outdoor adventure it has been. We are still working on the video for our backpacking trip last weekend, as there is a lot of footage to sort through. We hope to get it on the site in the next week.

Until then, we created a short film covering a fun day-hike Doug and I completed along with Doug’s dad and our good friend. Shadow Canyon, leading to South Boulder Peak and Bear Peak in Boulder, Colorado’s famed Flatirons, has always been one of my favorite hikes. It is a challenging ascent that links up two peaks, and has around 3000 feet of elevation gain in a little over 3 miles. I have been day-hiking a bunch to get strong again, and figured I was finally up for something more strenuous. And was I ever! I could not believe how great I felt on the entire hike. Everyday I realize more and more how my diseased colon had held me back. Now that it is gone, I am blissfully getting used to my new “normal” and loving life!

There were a couple of new things to deal with on this excursion. One was scorching temperatures. The high today was 90 degrees–definitely my warmest hike since surgery. I had to really stay on top of hydration and ended up tanking up on water before getting to the trailhead, drinking about 4.5 liters of water on the actual hike and then guzzling another 1.5 liters when I returned home. I am finding that avoiding dehydration on the trail is not that difficult. It just takes planning to make sure you carry enough water, and then some self-discipline to make sure you drink, drink, drink.

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A wonderful community of people

I just returned from a four-day backpacking trip in Rocky Mountain National Park. It was an amazing adventure with some unique challenges including some extremely cold temperatures, deep snow and National Park Service requirements to pack out our human waste due to the winter conditions. We shot lots of footage for our next film, so stay tuned!

On a separate topic, last week I went to my very first local ostomy association meeting, sponsored by the Ostomy Association of Metro Denver. I had intended to go much sooner, as I am sure it would have been very benecial right after surgery. Unfortunately, during those first couple of months, I had a few healing hiccups and didn’t feel up to it. After that, other scheduling conflicts always seemed to crop up. Finally, things lined up and I headed to my first meeting.

I was a little nervous at first because I didn’t know what to expect, but those fears quickly vanished as I found myself among some of the most welcoming people I have ever met.

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Here’s to 500 views!

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.

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