ulcerative colitis – Ostomy Outdoors

Winging it in the Wilderness

Published on October 3, 2016October 3, 2016 by ostomyoutdoors4 Comments

You guys should continue on after Holly Lake and do the Paintbrush/Cascade Canyon Loop, suggested Ranger Josie. We had stuck around to chat with her after her inspiring evening amphitheater talk at Colter Bay Campground during our vacation in Grand Teton National Park in August. When we mentioned our hiking plans for the next day, she explained that instead of stopping at the lake, we could could keep going and complete a 20-mile loop. She had done it earlier in the summer and said it was breathtaking.

20 miles? The longest hike I had ever done in one day was around 13 miles. I was so tired at the end of it I could barely walk. No way was I going to do 20 miles. Anyway, it had been already been an action-packed vacation. Over the previous week we had hiked numerous trails, climbed Middle Teton, bouldered on huge rocks left behind on an old glacial moraine, and paddled canoes on Jackson Lake. I was hoping for a more relaxing plan for our final day. My hope was to sleep in, hike at a leisurely pace to Holly Lake and then sketch and relax. Maybe we could do the 20-mile loop another year as part of a multi-day backpack–with sleeping in between the hiking segments.

As planned, we slept late next morning and didn’t hit the trail until 9:30 a.m. We hiked the seven miles to the lake at a slow pace, stopping along the way to take photos and eat snacks. We reached our destination at 2 p.m. Much to our dismay, the wind was howling and it was too chilly to hang out for hours. I did a quick sketch and we filtered some water for the return trip.

holly-lake-2 — Doug takes in the views at Holly Lake.

As we started to hike back, we passed a sign for Paintbrush Divide–the high point of the canyon was only two more miles above the lake. Hmm, maybe it would be fun to continue up the trail, I thought. Not all the way to the pass, of course, but just a little higher to get some views.

Okay, just a little farther. I ascend he trail above Holly Lake.

We climbed another mile up the canyon and the vistas seemed to get better with each step we took. Still, it was getting to be late afternoon and we figured it was probably prudent to turn around. Already, it would be a 16-mile round trip. As we were taking a photo at our intended high-point, a hiker came down the trail. She recommended we keep going until we could at least see the path up the divide. We figured it couldn’t hurt to at least take a look at the remainder of the route.

Just after a hiker took this photo of our intended high point for the day, she talked us into going a little farther. — Just after a German hiker took this photo of our intended high point for the day, she talked us into going a little farther.

Once we saw the divide before us, the choice was clear. It wasn’t much farther, so we would keep going and turn around once we got to the top. As we made our way up the rocky trail, smoke from a large fire in the northern end of Grand Teton National Park got thicker and obscured the sun. It gave the landscape an eerie, surreal hue that made the hike feel even more adventurous.

up-paintbrush-divide-for-web — High winds caused the Berry Fire in the northern part of the park to flare up during the day. The smoke from the distant fire obscured our views, but created an intriguing atmosphere.

Once we crested the divide, we were blasted by the same strong winds that were fueling the distant fire. We hiked along the pass, taking in the views and making sure not to get too close to the edge for fear of getting blown over it. Just as we were about to head back down, two hikers serendipitously approached us. We found out that they were doing the 20-mile loop, only they were traveling in the opposite direction. They had already gone eleven miles and had nine to go.

Doug and I had a realization, we had already done almost half of the 20-mile loop. Why not keep going?

paintbrush-divide-for-the-web — We are at the top of Paintbrush Divide at 4 p.m., trying to hide from the gale. Hmmm… can we finish 11 more miles before dark? We think so! If not, we have headlamps in our packs.

We only had four hours of daylight to cover eleven miles, so we upped the pace. When the terrain allowed, we speed-walked and even jogged a bit. Within an hour, we were at Lake Solitude and an hour after that we were descending Cascade Canyon and looking at up at the spectacular Grand Teton–a peak we climbed in 1992 when we were youngsters in college.

casdcade-canyon — Is this place even real? It is so beautiful!

By 8 p.m. we were contouring around the shore of Jenny Lake and soon we were back to the car. We had made it before dark!

end-of-the-hike-for-the-web — I am tired but excited that I will make it back to camp before the shower house closes for the evening!

Driving back to the campground, it was hard to comprehend that we had just done a 2o-mile hike. I wasn’t even that sore! I was tremendously happy that we had allowed ourselves the freedom to embark on such a spontaneous adventure. Had we turned around, we would have missed out on one of the most stunning hikes I have ever witnessed.

Spontaneous adventures were something that became elusive for me in later life. In 2006, I was not only diagnosed with ulcerative colitis, I also received the news that I had celiac disease. Due to ulcerative colitis, whenever I traveled, I had to know where restrooms were. With celiac disease, I had to make sure I always packed back-up food in case I couldn’t find gluten-free dining options.

Since my ostomy surgery in 2010, I no longer have to worry about restroom locations for urgency, but I do have to make sure to always have back-up supplies with me. I also have to change my appliance every 3-4 days or my skin isn’t happy. This can impact spontaneity as well. It can be problematic to make a last-minute decision to get up early to climb a peak on a morning when I am scheduled for an appliance change.

With all these things to consider, how do I make sure that I can still have impromptu trips? Simple–I prepare for spontaneity.

This may sound contradictory. After all, spontaneity is the opposite of pre-planning. However, by making sure I am prepared with a few basic supplies, I can be ready for any spur-of-the-moment adventures in the outdoors.

Here are three things I bring with me to make sure I am ready to wing it in the wilderness.

Closed-end ostomy pouches
When on outdoor trips, I most often use drainable pouches and empty them into a “cathole” I dig in the ground. However, I am a hardcore LNT enthusiast, and I strive to follow best practices when disposing of my waste in the backcountry. That means digging holes six inches deep in organically rich soil, 200 feet from water sources, campsites and trails. Unfortunately, good places to bury waste are not always easy to find. Multiply that difficulty by the fact that I have to locate as many as five to eight such places a day with my emptying frequency! If my plans change and I find myself traveling over rocky terrain where digging holes is not possible, or if I need to cover a lot of ground in a hurry (like on our loop hike), swapping out closed-end pouches and packing out the full ones becomes my preferred method for dealing with waste. On every hike I go on, I make sure to bring several closed-end pouches and small plastic bags to pack them out in. Ostosolution Ostomy Pouch Disposal Seals are also handy to snap over the full pouch openings and hold the odor in.

lake-solitude-for-the-web — Swapping out a pouch along the trail above Lake Solitude only took a couple of minutes. Locating a good place to dig a hole and then emptying would have taken at least 15 minutes. This was my third swap on the hike, so it’s easy to see how that time could add up.

Salty food
You won’t catch me with a few energy and protein bars as my only food source in my pack. I bring a stuff sack full of a wide variety of foods including dried fruit, chocolate, cheese and crackers, bars, peanut butter, cookies, and–most importantly–salty snacks. Since getting an ostomy, I seem to be prone to salt depletion on the trail. It usually starts with nausea and dizziness and then progresses to a gnarly headache with fatigue. All I have to do to make it go away is eat something salty. My doctor told me to always hike with plenty of sodium-rich foods so I make it a habit to bring pretzels, jerky, salted nuts and chips such as Fritos. Also, I always bring a little more food than I need. Yes it adds weight to my pack, but it comes in handy if I change my hiking plans mid-way (or if I were to get injured or lost).

Water filter
As an ostomate, I am also prone to dehydration. On most shorter day hikes, I carry a 3-liter CamelBak. However, this would not be adequate on a bigger hike or if I ended up staying out longer than expected. A great way to remain adaptable to changing water needs is to carry a tool to treat water. I have used a variety of methods including iodine tablets, Aquamira and a SteriPEN. However, my favorite water treatment method is using a water filter. These come in a variety of designs, but my number one choice is the Katadyn Gravity Camp 6L Water Filter. You simply place it in a location that is higher than your water bottle or bladder, and let gravity force water through the filter. No pumping is involved and it filters a liter of water in roughly a minute.

water-filter-for-the-web — With darkness fast approaching and five more miles to go, we were grateful to have the ability to filter water quickly. I drank seven liters on the hike.

When we were trying to choose whether or not to complete the 20-mile Paintbrush/Cascade Canyon loop hike, we thought about the late hour, our stamina, and encountering mountain lions or bears in the darkness. However, my ostomy never entered the equation as a factor in our decision. I knew that by preparing for spontaneity, I was all set for the unplanned adventure!

My favorite products for dealing with ostomy waste in the backcountry

Published on September 21, 2015September 22, 2015 by ostomyoutdoors16 Comments

Just one more cast, I thought, as I tossed my line in the still waters of Middle Willow Lake in the Gore Range of Colorado. It was a phrase I had been repeating to myself all morning, and by that time I had completed dozens of “final” casts– almost every one hooking a hungry brookie. I nervously looked at the blackening clouds coming over the ridge but even the threat of a downpour couldn’t stop me from flinging my line in the lake again. Sure enough– a trout grabbed the elk-hair caddis fly. I reeled the fish in, released the hook from its mouth and watched it swim away.

Suddenly, a swift downdraft disrupted the glassy surface of the the lake and a crack of thunder smashed the silence of the mountain basin. That really would have to be my last cast of the day.

Doug motioned to me from down the lake shore that he too was ready to call it quits. Hail let loose from the sky and pelted my forehead as I hefted my pack onto my back and fastened the hip belt. That is when I noticed the bulging ostomy pouch on my belly and remembered that I had not emptied it since before breakfast; it was now late afternoon. Oh well. It would have to wait. Doug and I threw on our raincoats and made our way through the forest and back to camp.

When the rain didn’t let up for hours, I cursed not emptying my pouch earlier when the weather was fair. I could have taken my sweet time digging a perfect hole in the perfect location while blanketed in warm sunlight. Instead, I was cold, damp and stuck under our cooking tarp watching the torrential rain form small lakes around our backcounty site. Teeth already chattering from the damp chill, there was no way I was going to take a ten-minute hike into the forest surrounding camp to empty my pouch. Fortunately there was another option: in the tent I had a supply of closed-end pouches on hand. Within a few minutes I had a fresh one popped on and the used one bagged up.

Doug waits out the rain under our cooking tarp.

warming-up — It is very important to color-coordinate your mug and jacket while in the backcountry.

Our backpack in the Gore Range has been just one of many outdoor adventures we have embarked on this summer (which is one of the reasons I have been so absent on this blog!) We also went on two more backpacking trips, including a short trip in the Mt. Massive Wilderness and a rugged nine-day adventure in the Sangre de Cristo Wilderness– all in our home state of Colorado. Early June also included a climb of the First Flatiron in Boulder, CO. Each trip was unique, and I loved having a variety of waste management techniques to pull from. In this post I will highlight my favorite products and techniques for dealing with output during those situations when emptying would be inconvenient or impossible. Some of these methods I have written about before and are tried and true for me. Others are new things I have just recently discovered.

Our first backpacking trip of the summer was a three-day adventure in the Mt. Massive Wilderness in Colorado. — Let’s go that way! The summer of 2015 was filled with three amazing backpacking/ fly fishing trips in our home state of Colorado. Our first one was a was a three-day adventure in the Mt. Massive Wilderness.

Trip number two consisted of a four-day hike into the Willow Lakes area of the Gore Range. — Trip number two consisted of a four-day journey in the Willow Lakes area of the Gore Range.

We ended the season with a 9-day off-trail backpacking and fly fishing adventure in the Sangre de Cristo Wilderness in Colorado. — We ended the season with a nine-day mostly off-trail backpacking trip in the Sangre de Cristo Wilderness.

Closed-end pouches
So often, closed-end pouches are labeled as being designed for colostomies. True, ileostomates tend to have more profuse output which makes swapping out multiple pouches everyday an expensive endeavor. However, for certain short-term situations, closed-end pouches can be an incredibly useful tool for all people with ostomies.

There is no place to drain a pouch on long rock climbs such as the First Flatiron, which Doug and I made an ascent of in June. — There is no place to drain a pouch on long rock climbs such as the First Flatiron in Boulder, CO, which Doug and I made an ascent of in June.

Swapping out a closed-end pouch on a climb up the FIrst Flatiron this summer was easy. — Fortunately, swapping out a closed-end pouch on a climb is easy– even while tied in with my harness buckled.

I use them on rock climbs, trips near water, snow adventures and any other times when the environment does not allow for digging holes to bury wast. They are easy and mess-free to swap and pack out. Moreover, lately I have discovered their handiness for nighttime use on backpacking trips.

Though I dig holes and empty 90% of the time while backpacking, overnight emptying has always been a challenge for me. For some reason my digestive system changes when I am doing strenuous activity all-day and I have to empty a lot more at night than I do at home.

In order to minimize my impact on future backpackers, I like to walk a fairly long distance from camp to empty, and I only dig holes in areas where no one would likely set up a campsite in the future. The problem is, places like that are hard to find in pitch blackness. I used to pre-dig a few holes during the day and then make mental notes to find them in the dark, but it was still a challenge to hike to these locations in the middle of the night when I was sleepy. If it was raining, it was even worse. I soon discovered it was a lot safer to stay close to camp and swap out closed-end pouches in the middle of the night. During the day, I would go back to using a drainable pouch.

Hiking into the darkness to find a place to empty my pouch is not my favorite thing to do. I have since started swapping out closed-end pouches at night on wilderness trips so that I don't have to do this. — Hiking into the darkness to find a location to empty my pouch is not my favorite thing to do. I have since started swapping out closed-end pouches at night on wilderness trips so that I don’t have to do this.

It feels great to relax in my sleeping bag knowing I am not going to have to hike off into the dark woods to empty.

Doggie Poo Bags
Managing an ostomy in the wilderness requires packing out used supplies. One of my favorite items to secure used pouches and wafers are simple opaque black doggie-poo bags. They are cheap, non-bulky, and lightweight. Moreover, Ziplock bags can easily un-zip or pop open when jostled. However, doggie poo bags can be tied tightly with an overhand knot. Even when packing out pouches with the the most watery output, I have never had one leak.

LOKSAK OPSAK Odor-proof Barrier Bags
Though doggie-poo or other plastic bags may work well for holding used pouches, they don’t do a good job of containing odors. Even when I double-bag them in a regular Zip-lock bag, the smell still comes through. One great product for solving this dilemma is OPSAK odor proof barrier bags. They come in two different sizes and are great for holding in odors when you need to pack out full ostomy pouches. They are pricey, so I place all my sealed doggy-poo bags into one OPSAK, empty it into the trash at the trailhead, and then save it for another trip.

My pouch pack-out trifecta: the full pouch goes into a doggy-poo bag, that goes into a Ziplock, a few of those go into a Ziplock and than all of it gets placed into a re-usable OPSAK Odor-proof Bag. — My pouch pack-out trifecta: the full pouch goes into a doggy-poo bag, a few of those go into a Ziplock to contain odors a little bit more, and then those get placed into a re-usable OPSAK Odor-proof Bag.

OPSAK bags come in a large size too for a more extended expedition.

OstoSolutions Ostomy Pouch Disposal Seals
Unfortunately, closed-end pouches that are full of ostomy output are incredibly heavy and take up space in one’s pack. I once weighed my full nighttime pouches on a two-night backpack trip and they collectively weighed three pounds. Multiply that for longer trips and the extra weight becomes quite burdensome.

I was faced with such a dilemma on a nine-day backpacking trip in the Sangre De Cristo range of Colorado in August. This trip was a particularly strenuous one with difficult off-trail travel over incredibly steep mountain passes. Our packs were heavy due to the amount of food we had to carry and the last thing I wanted to do was add more weight to my pack in the form of closed-end pouches filled with poop. At first I had planned to just go out into the night to empty to save from carrying the extra weight, but every evening at bed time the storms and torrential rains seemed to roll in.

I scramble up a steep gully with a heavy pack on a 9-day off-trail backpacking trip in the Sangre de Cristo Range, Colorado. — I scramble up a steep gully carrying a heavy pack on a nine-day off-trail backpacking trip in the Sangre de Cristo Wilderness, Colorado.

I didn't need the added weight of full used ostomy pouches in my backpack. — Food and supplies for such a long trip were heavy, and I didn’t need the additional weight of full used ostomy pouches in my backpack.

Fortunately, I found a great way to solve this problem by using some OstoSolutions Ostomy Pouch Disposal Seals that I had brought along. In the tent, I would swap out a closed-end pouch as I always had. However, instead of just tossing the full one into a baggie and tying it shut, I would cap it with an OstoSolutions Seal. In the morning, I would take a long hike from camp and dig a cathole in perfect Leave No Trace style. I would then remove the OstoSolutions Seal from the full pouch and dump the contents in the hole. Finally, I would snap the OstoSolutions Seal back on the now-empty pouch and bag it up to be packed out. The weight savings in packing out used (but no longer full) pouches was huge! The OstoSolutions Seals themselves are very light. I found that packing one for each night (plus a few more for those rare nights when I might have to empty twice) was easily doable. The seals would also be handy in alpine areas where digging holes to empty can cause damage to the delicate environment. A full pouch, capped with an OstoSolutions Seal, could be packed out until one got below treeline. There the seal could be snapped off, and the contents of the pouch buried in a much less fragile place.

I can snap an OstoSolution Seal on my pouch at night and then pop it off later to empty the contents into a cathole (a six-inch deep hole dug in the ground.) — I can snap an OstoSolutions Seal on my full pouch at night and then pop it off later to empty the contents into a cathole (a six-inch deep hole dug in the ground.)

Doug and I descended the steep gully below the notch in this photo on day seven of the trip. It was essential to keep our packs as light as possible in such terrain. — Doug and I descended the steep gully below the notch in this photo on day seven of the Sangre de Cristo trip. Keeping our packs as light as possible was essential in such rugged terrain.

Don’t let a fear of being away from a bathroom prevent you from heading into the wilds. With these four supplies (closed-end pouches, doggie poo bags, OPSAK bags, OstoSolutions Seals), you will be ready for storms, darkness, snow, rock, water, a heavy pack or any other challenges that might present themselves in the backcountry. If these supplies end up not working for you, get creative. An ostomy can be managed in even the craziest situations– it is just a matter of experimenting and finding the right tools for the job.

Yep — Stormy weather seemed to follow us on all of our trips this summer! Doug casts a few more times before we hastily return to camp.

Not another storm! Dealing with my ostomy in foul weather was an everyday occurrence on most of my trips this summer. — Yikes! Yet another storm! Dealing with my ostomy in foul weather was an everyday occurrence.

However, the clouds did part enough that I got some glorious backcountry lake swimming in. — However, the clouds did part occasionally, and I was able to get some glorious backcountry swims in. I do not have to make any special modifications to my ostomy system when swimming– it adheres just fine as is.

These goats have nothing to do with ostomies, but I did see them on one of our trips and they are cute. — These goats have nothing to do with ostomies, but I did see them on one of our trips and they were cute.

Birds and birthday cake

Published on April 19, 2015April 27, 2015 by ostomyoutdoors7 Comments

I turned 43 years old this month and brought in my next year with an overnight camping trip on the wide-open expanses of the Pawnee National Grassland in northeastern Colorado. Unlike last year when I was too stressed out to even celebrate, this birthday was full of calmness (other than the wind which nearly blew us off the prairie.)

All year, I worked hard to re-prioritize various aspects of my life so that I could stop feeling so overwhelmed. This meant saying no to a lot of projects and requests and sometimes disappointing people. It meant spending less time on activities I enjoyed a little in order to make room for things I loved a lot. It meant that, yes, I would miss out on some opportunities and activities, but the reward would be a life that felt closer to my heart and less stressful. Activities like yoga, art and adequate sleep were back in my weekly routine. Pulling into our campsite, I felt light and free knowing that I had rid my life of many of the distractions that had been weighing me down. How wonderful it felt to have no agenda other than to relax and take in this new place with Doug.

We pitched our tent, set up camp and drove the desolate dirt roads that make up the Pawnee’s 21-mile birding tour. With no agenda, we let curiosity be our guide–stopping our car and getting out to explore whenever we saw something that caught our eye. We watched horned larks and McCown’s longspurs devour huge meaty grasshoppers and a saw a green, algae-filled pond that bubbled with squirming salamander tadpoles in its soon-to-evaporate water. Doug took photos of windmills and the landscape while I stopped to sketch.

When we returned to the campground, the winds died down and we made madras lentils from scratch on the camp stove, ate birthday cake and watched the abundant bird life singing from the cottonwoods around our site. As the temperatures tanked, we burrowed into our sleeping bags in the tent, but not before gazing into the vast night sky. With little light pollution, the stars were so bright that it was hard to pick out some of the usually prominent constellations.

Cooking-web-version — I crush some garlic for a tasty meal of homemade madras lentils.

Binoculars-and-Birthday-cak — I watch the bird life while eating birthday cake at the campfire.

The blazing morning sun belied how cold it was when we woke up the next morning, but soon hot drinks were on the stove and we were ready to start the day. After packing up camp, we drove to the popular Pawnee Buttes hiking trail. On the way there, we stopped to scan a prairie dog town along the road for burrowing owls. Much to our amazement, we spotted one in less than a minute! I couldn’t believe how lucky we were to see one of these birds. It was a first sighting for us and a big birthday treat for sure!

Buttes-jumping-for-web — Hooray! Let’s celebrate Heidi’s birthday!!!

Though I will always be a mountain girl, it was wonderful to be visiting the plains for a change. When I was a child, I was captivated with Laura Ingalls Wilder and the Little House on the Prairie books. My family went on many a road to trip to visit the places she lived. It had been a long time since I had been back to exploring a prairie landscape and the wide-open spaces surrounding the Pawnee Buttes Trail were awe-inspiring.

Buttes-hiking — Little hiker on the prairie.

When we reached the trail’s terminus, Doug spotted a horned lizard at the side of the path. I took out my sketchbook and sat down to record the shape of its head, curves of its tail and spiny body. Had the creature not run off after ten minutes, I could have drawn it for hours. Here I was taking this little moment to sketch this little lizard, yet the peace I felt was as boundless as the prairie surrounding me. I could not think of one thing that would have made my birthday more special. I was in heaven.

Prairie-for-web — Enjoying the moment as I sketch a tiny lizard in an immense landscape.

It was time to head back to the city. We bounced down the washboard dirt roads and then finally made it to the smooth pavement of bigger highways. Soon we saw the familiar cityscape of Denver. It was hard to believe we had only traveled 100 miles to get home–the grassland was a different world.

In the days of bucket-lists full of exotic trips, it is easy to think you aren’t living life to the fullest if you aren’t voyaging to far-off locales. It’s not that one shouldn’t dream large, but family needs, lack of money, medical issues– including surgery recovery– and other things can make that safari to Africa or a climb of a Mexican volcano hard to manage.

Instead of feeling bad about what you are unable to do at a certain time, make it a priority to get out on some local excursions. Who’s to say that living fully has to happen in distant lands? I found a treasured moment hiding in six square inches of grass on a vast prairie only two hours from my home. I wonder what other incredible things are to be found right outside my front door?

Lizard-for-web — “Find pleasure in the simple things,” says the wise lizard.

Ostomy awareness comes in small forms too

Published on August 1, 2014August 1, 2014 by ostomyoutdoors1 Comment

Today is the one-year anniversary of my Mt. Rainier climb. I can’t believe 12 months have gone by since I stood on the summit. When I returned from the climb, I blogged about the adventure. However, I had intended to write a couple more posts related to the trip. The weeks sped by and I never got around to it. What better time to revisit the topic than on this anniversary?

At our high camp the night before our summit attempt — At the Ingraham Flats high camp the night before our summit attempt

As someone who has a big passion for spreading ostomy awareness, I viewed my trip to Rainier as a great opportunity to share information about ostomies with others and show that anything is possible with a stoma. In fact, as I walked into our pre-trip meeting at the guide service, I had all the things I wanted share with my teammates during introductions neatly figured out in my head. The problem was, things didn’t go as planned.

As we sat in a circle and got ready to meet each other, the lead guide threw out some questions to break the ice and get us started: Tell us who you are, a little bit about your climbing experience and something weird about yourself, she said.

Something weird about myself? That wasn’t the introductory question I had hoped for. Everything I planned to say about my ostomy didn’t fit at all with the concept of weirdness. If anything, I wanted to talk about how normal life with an ostomy was. I came up with another silly non-ostomy-related answer for the question and scrambled to think of another way to bring up my surgery.

As I shared a little bit about my climbing experience in my intro, I did mention that I had been severely ill with ulcerative colitis three years prior and had gone through major surgery to remove my colon. I talked about how much it meant to me to be healthy enough to climb Rainier. However, I didn’t mention any details about the surgery or the fact that I had a stoma or wore an ostomy appliance.

As I left the meeting, I felt disappointed in myself for being vague about my surgery type and not talking more openly about my ostomy. How could I have let such a good opportunity to spread awareness slip by?

That is when it hit me. I didn’t feel like talking about my ostomy in this situation– not because I was ashamed, but because I didn’t want it to define me on the climb. After all, my stoma was really such a small part of me in the bigger picture of my life.

As it turned out, I did succeed in spreading the word about ostomies on my trip–it just happened a little more quietly and gradually than I had originally planned. I ended up having many great one-on-one conversations about my ostomy with most of my teammates when the topic of surgery came up. These small chats with individuals did just as much to spread awareness as a bigger announcement would have. I have also formed lasting friendships with some of my Rainier co-climbers and they continue to learn more about my life with an ostomy as time goes on.

I was more comfortable talking with others one-on-one about my ostomy.

Most importantly, my ostomy made its way to its rightful place on my climbing adventure–in the background. It didn’t become too much of a focus, and my thoughts and energy were left to more important things like cheering on teammates, taking in the beauty of the landscape and feeling the strength of my body making its way up the mountain.

So worry not if you are shy when talking about your stoma. Ostomy awareness comes in many forms: from a grand campaign to a small heartfelt conversation with a friend.

Patience and progress

Published on January 26, 2014October 30, 2017 by ostomyoutdoors8 Comments

It’s as harsh out here as on top of peak in a snowstorm. This thought pounded in my head as I cross-country skied down a slope in my second-ever biathlon. The wind was blowing against me so strongly that I had to use my poles to make downward progress. I was freezing in my minimal layers, and I felt eerily alone on the course with no one in sight and snow swirling all around me. The weather was declining rapidly, and I was relieved to be on my final of five laps.

In the distance I could see the biathlon range as I steadily made my way up a final incline. Snow was filling in the trail with drifts, and I felt like I could have walked faster than I was skiing. All that powder would have been much beloved if I were out snowboarding, but I didn’t much appreciate it in a Nordic race. As I got closer to the finish line, I could see the person recording times from a stopwatch. It seemed to take forever for me to reach him. But I finally made it! I finished the race and was super happy that I stuck with it and did not give up. I couldn’t remember doing anything that felt so physically strenuous– not even hiking up Mt. Rainier. Skate skiing is one of the most aerobically intense activities I have ever done.

Happily leaving the starting line before the wind and snow picked up. — Happily leaving the starting line before the worst of the storm blew in.

I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets! — I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets at 50 meters away!

We wrapped up the weekend with more fun. After completing the race, we stayed overnight at Snow Mountain Ranch/YMCA of the Rockies (the place where the biathlon was held) and even hit up the climbing wall in the pool. The next morning, we got up early and drove to Copper Mountain to go snowboarding.

A little post-race climbing at the pool.

When the event results came in a day later, I discovered that I had the slowest pace of anyone who finished any of the various distances. It wasn’t a surprise. This is a new activity for me and I didn’t expect to be good at it right away. I had been working on my shooting a bit, but had put very little attention into becoming better at skate skiing. That changed last weekend when I took a beginner lesson and picked up countless tips that will help me improve. I also plan to begin working on my cardiovascular fitness again by running and going skate skiing as much as I can. I know it is going to take a lot of time and many little steps to get better at the sport.

That reminded me a lot of getting back into the fitness activities and sports I loved after ostomy surgery. Like training for biathlon, it wasn’t a quick process. One of the most common questions I get from blog readers is how long it took me to get back to “X” activity. Since a lot of information on that subject is buried in other posts, I thought I would create a summary of how long it took me to return to activities and what some of the challenges were. Keep in mind that I did have some significant complications with my abdominal incision healing due to a rare reaction to my particular suture material. This extended my healing time.

Snowboarding: I did this activity for the first time at around five months post-op, but because it was the end of the season, I was only able to get a few days in. I was surprised at how effortlessly the movement of boarding came back to me after losing so much strength after surgery. The most difficult part was getting back into a standing position after taking a tumble. Due to the crunch-like movement involved, it felt hard on my core. I wore (and still wear) a six-inch wide hernia prevention belt to help support my abdominal muscles. At first I was also careful to not venture onto icy terrain since falling onto my butt hurt the area where my anus had been removed. By the next season (about a year post-op), all that pain was gone and I was able to return to my pre-surgery level of boarding.

Getting up after all the falls on my first post-surgery snowboarding trip was tough on the abs! — Getting on my feet during my first post-surgery snowboarding trip was tough on the abs!

Hiking and backpacking: I went on my first backpacking trip at around five months post-op as well. I checked with my surgeon to make sure carrying 25 pounds was okay and then headed into the backcountry at the first opportunity–which happened to be a very cold and snowy April weekend! Once again, I wore a six-inch wide hernia prevention belt and was mindful to keep the weight in my pack light. Doug carried many of my things and helped lift the pack onto my back. Once it was centered on my legs, it didn’t strain my abdominal muscles at all. The cold made this first trip with my ostomy difficult, but I was happy with the extra challenge. I knew if I made it through that, warm weather adventures would be easy.

After this trip, I kept hiking every weekend and slowly upped the distances traveled and amount of weight carried. I went on a few more overnight trips and began hiking 14,000-foot peaks. I remember walking like a turtle on the first one, but I just kept at it. By ten months post-op, I was able to go on an eight-night backpacking trip carrying 52 pounds. Through all these adventures, I was continuously experimenting with supplies and techniques for dealing with my ostomy outdoors and I tried to put myself in challenging situations to maximize my learning and face my fears. For instance, I could easily have changed an appliance before a wilderness trip, but instead I would purposely wait to do it in my tent in the backcountry just so I could get the practice and become confident with my ostomy in those situation.

A little snow couldn't keep me out of the backcountry once my surgeon gave me the go-ahead to carry a pack again at 5 months post-op. — A little snow couldn’t keep me out of the backcountry once my surgeon gave me the go-ahead to carry a pack again at 5 months post-op.

Running: I waited seven months after surgery to go running and I progressed really slowly. For whatever reason, this activity made me much more fatigued than hiking or backpacking. I also had pains in various areas of my abdominal wall (almost like a stitch or side-ache in the muscles surrounding my stoma) for almost a year after surgery. I never knew exactly what caused this, but it always felt okay again a day or two after running so I chalked it up to muscle fatigue. After all, I had been cut open from belly button to pubic bone. That is bound to affect the abdominal wall a bit! Eventually those muscle aches went away and now I am able to go on long runs with no discomfort. I also wear a six-inch wide hernia prevention during this activity to help support my abdominal wall.

Jumping for joy on my first trail run which happened a little over a year post-op.

Rock climbing: This is the activity I took the longest to return to. Climbing involves many twisting and stretching movements and a lot of physical exertion. My surgeon never said I had to wait a year to go, but that is what I decided to do in order to give myself plenty of time to heal. I knew my ostomy was permanent and I wanted to do everything in my power to reduce the possibility of a long-term injury like a parastomal or incisional hernia. I was willing to wait as long as it took for my body to tell me I was ready. In the meantime, I worked on hiking and backpacking so it never felt like I was sitting around waiting to climb. To get stronger while I was waiting, I worked with my physical therapist to strengthen my core with gentle and safe exercises. By eleven-months post-op, I finally felt that I was strong enough to rock climb. I started in the gym by ascending routes that were easy and low-angle. Then I started to do the same outside. Over the following year, I slowly bumped up the difficulty of routes I was attempting and ventured onto more vertical terrain. At 22 months post-op, I led my first easy sport route. Now that I am over three years out from surgery, I am climbing in the gym on a weekly basis, doing overhanging routes and am back to scaling rock walls at my pre-surgery level. The only thing that I have yet to do is return to leading traditional routes where I place my own gear. Just like with every other strenuous activity, I always wear a six-inch hernia prevention belt.

Leading a climb at Shelf Road in Colorado this fall. I was back to leading sport climbing routes 22 months after surgery.

Yoga: Like rock climbing, I waited a year to do yoga. I know I could have gone earlier, but I was busy working on the core exercises with my physical therapist and decided to wait to try yoga until my incision area felt solid. Interestingly, I found corpse pose to be one of my most uncomfortable poses. Lying on my back made my incision area ache like crazy. I think this was the result of horrible posture during the first four months after surgery when my incision was extremely painful. During that time, I was protective of the area, and I found myself walking in a hunched-over position. It took a while to reverse that and make my muscles to feel okay with being lengthened again. Nowadays, corpse pose feels fine and the only thing I still have trouble with are bridge positions. My body tells me to go easy on those and so I do! I wear a hernia belt while doing yoga too, but switch to a four-inch model as it is easier to bend with that width.

Bicycling: This sport was gentle on my body and would have been perfect after surgery save for one thing: my butt hurt from having my rectum and anus removed. And this pain was not quick to go away. It took almost a year for the deep muscles in that area to feel like normal again. Fortunately, once I hit six months-post op, my pain had at least diminished enough that I could sit on the seat without too much discomfort. Now I can spend hours on the saddle with no issues.

My first bike ride at six months post-op: a short jaunt to see a Rockies game. It did hurt my healing butt a bit, but was tolerable. — I took my first bike ride six months post-op when Doug and I pedaled a short distance to see a baseball game. It did hurt my healing butt, but was tolerable.

As I get into my new sport of biathlon, I realize that it is going to take a lot of hard work and patience to get better. I know someday when I am skiing a bit more efficiently and faster, those early times when I struggled up the hills or felt like taking a nap in the snowdrift will seem like a distant memory. It was that way with my ostomy. Getting back to my pre-surgery activity level took perseverance. My progress sometimes seemed dauntingly slow. However, as I moved towards that goal, I celebrated each small victory. Before I knew it I was back on my favorite slopes, trails and rock faces and my life was richer for all the tiny but amazing steps that got me there.

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
-Ernest Hemingway

Me and my wound vac going for our first trail hike after surgery. I traveled a whopping 1/8 mile and I was thrilled. After having major incision healing complications, this was a huge milestone for me and I went home and celebrated with my first post-op beer. — Me and my wound vac returning from our first trail hike after surgery. This was four months after my operation and I traveled a whopping 1/8 mile. After having major incision healing complications, this was a huge milestone for me and I went home and celebrated with my first post-op beer.

A stone is cast!

Published on November 24, 2013November 26, 2013 by ostomyoutdoors3 Comments

Some of you may already know from my Facebook page that I recently experienced a kidney stone. I am sharing a few more details about the experience here on the blog as dehydration is one of the challenges of having an ileostomy and is something that can contribute to stone formation.

On Sunday, November 3rd, the NOAA forecast called for gorgeous weather. Doug and I had planned to head to the local crag for some climbing. Instead I woke up at 4:30 a.m. with a strange pain in my groin area. Doug heard me stirring, but since the pain was pretty minor, I told him to go back to sleep while I got up to make myself some tea and take a warm shower. Perhaps that would help it go away. I figured maybe I had just pulled a deep muscle, as I had gone for a pretty hard run the evening prior.

When I was in the shower, the pain started to get worse and it was strange because it felt like I already had to urinate again even though I had just gone when I got up. Great, I thought. I bet I am dealing with a urinary tract infection. I noted in my head that if things didn’t get better, I would schedule an appointment to see the doctor when the weekend was over.

After I got out of the shower, I sat down to go to the bathroom and suddenly felt an extremely sharp pain explode in my left flank. I knew right away that I was probably dealing with a kidney stone. I had had one 14 years ago and the pain was reminiscent of that experience. I also knew that this would likely require a trip to the ER. I started to make my way around the house to gather my insurance card, clothes, spare ostomy supply kit and other things I might need. I got about two minutes into that endeavor before I was brought to my knees by an even more intense pain. I crawled up the stairs and yelled for Doug to wake up and help me.

Seasoned from the days when I would wake up screaming from Remicade-induced joint pain or the times when I needed to be taken to the hospital late at night for UC flares, Doug sprang out of bed and into action at top speed as if he had rehearsed it 100 times. He helped me get dressed and he held my hair back when I began to vomit from the pain. I am not sure how I managed to walk on two feet out to the car, but soon we were zooming down the road to the hospital. Curled up in the front seat, I tried to use the mindfullness meditation techniques I had learned after surgery, and I attempted to focus on each breath instead of the waves of pain and nausea I was experiencing. When we got to the ER, Doug ran in to get a wheelchair while I waited doubled-over next to the car. A nurse heading in to start her shift rushed over to help. Within minutes, I was lying in a bed hooked up to an IV with some much needed Dilaudid.

During my eight hours in the ER, the pain was so intense that I still hurt a lot even with the pain medication. The doctor decided to order a CT scan to see how big the stone was. Fortunately, it was 4mm: a size that I could likely pass on my own. However, I still couldn’t be released from the hospital until the stone moved to a place that was a bit less painful. I was sent home when I could finally hold down some Vicodin pills without throwing up. Before leaving, I was told the the CT scan also showed two more 4mm stones–one in each kidney. They couldn’t tell me if, or when, those would decide to make their way down the ureters.

When I got back to our house, Doug made me endless cups of herbal tea and I watched at least two tear-jerker dramas on Netflix which is one of my tried and true methods of feeling better. Every time I would get up to urinate, I would eagerly look in my strainer to see if the stone had passed. Finally, first thing the next morning, it popped out. I was so happy to see that little rock. It reminded me of a precious nugget in a gold pan! Once the stone passed, I had instant relief and was back to running and hiking within a couple of days.

My stone was sent to the lab to be analyzed later that week and I discovered it was the common calcium oxalate variety. I was given a sheet with recommendations for fluid intake and also a list of high-oxalate foods to avoid. Unfortunately, these foods are currently things that make up a larger portion of my diet: spinach, nuts, peanut butter, quinoa, legumes, oatmeal, berries, almond flour (which is a gluten-free baking staple) and chocolate. These are all things I eat a lot because I love them and I thought they were also good for me (well … except for the chocolate). Another thing I am supposed to avoid is salt. This is hard because when I exclude salt from my diet, I start to feel dizzy, weak and nauseated. Due to this and the fact that my blood pressure has gotten very low at times, my doctor recommended last year that I increase my sodium intake–especially when I am active. I feel that an appointment with a dietician may be in order to find out how to best manage having both an ileostomy and a predisposition to kidney stones.

While I wait for an upcoming follow-up appointment, I have been doing a little bit of research on kidney stones for a better understanding. I read that those with IBD and/or ileostomies can be prone to kidney stones due to the way these conditions affect urine volume, urine pH and calcium and oxalate excretion in the body. Interestingly, the calcium oxalate stone I had 14 years ago occurred at the same time I first developed ulcerative colitis symptoms. I am not sure if this is a mere coincidence, but definitely something to ponder.

The take-home message with all of this is that I need to drink a lot more water. I usually try to take in 3-4 liters in a normal day (more when I am doing something active). However, I also know that I have gotten a bit complacent with my hydration. Other than a few isolated times, I haven’t really felt dehydrated since surgery so I figured I was doing okay with my water intake. There were even a few times that I left my water behind on short runs because I thought I felt fine without it. I also got careless about drinking enough at work, oftentimes returning from leading a program to find the water bottle in my pack still full. I guess rather than giving me subtle signs that I needed more H2O, my body decided to give me a huge wake-up call in the form of a kidney stone. It is a lesson I won’t soon forget. In fact, I think it is time to go have a glass of water right now!

Three years!

Published on November 8, 2013November 9, 2013 by ostomyoutdoors8 Comments

When I woke up this morning, I wasn’t sure how to celebrate my 3-year stomaversary. As I made breakfast, I tossed around some ideas. I thought about going to Zumba like I usually did on Friday evenings but it didn’t feel like it honored the specialness of the day enough. I considered taking a sketching excursion, but I really wanted to do something active. Soon the ideal activity popped into my head: I would go on a trail run! Though I recently started running again after a year-long hiatus due to hip woes, I hadn’t yet been off the road. I quickly formulated a plan in my head. After work I would stop at a local park and do my favorite trail running loop and then I would meet Doug in town for a celebratory dinner.

When I climb, I am only thinking about the rock in front of me. When I do yoga, I am focused on my breath. Running is one activity where I can let my mind travel on a whim. On the anniversary of my ostomy, I really wanted to have a chance to contemplate the positive impact that Wilbur the stoma has had on my life. A long run through the gorgeous landscape would provide the perfect opportunity to do that.

Contemplating the amazing journey from illness to health as I take a break on my trail run.

Sometimes I ask myself why it is so important for me to celebrate my ostomy surgery date. I am sure if I had elbow surgery I might note the anniversary as it approached each year, but I don’t know that I would feel the need to set aside time to reflect on the experience and do something special to commemorate it.

When I was in the hospital for 16 days with my final UC flare, many doctors and nurses passed through my room and I had a lot of great conversations about my desire to have permanent ileostomy surgery. There were so many varying thoughts and opinions on the matter. I remember several individuals commenting on the fact that, at age 38, I was awfully young to be considering a permanent ileostomy. Why wouldn’t I want to give the biologics a longer try? If I really wanted surgery, why not at least try a j-pouch? Was I sure I wanted to wear an ostomy pouch for the rest of my life?

Trying to justify my choice to others was extremely difficult. I remember having a heartfelt conversation with my GI doctor and IBD nurse about the things I valued in life and why I thought the ileostomy was the best choice for me. My reasons were often hard to put into words, but inside my heart was screaming. I just want my life back!

My life. The one that included hanging out with my hubby in the mountains and on rock faces. The one that wanted to be able to enjoy a fun dinner out with family and friends without UC food worries. The one that included teaching others about nature out on the trails in my job as a naturalist. I saw the permanent ileostomy as the fastest, least complicated and most predictable way of getting back to the things I loved the most. I never felt that I was too young for surgery. Instead, I felt that I was too young to not take a difficult but important step to get my quality of life back.

So every year, on November 8th, I feel the profound desire to reflect on and celebrate that big decision. It isn’t only a time to honor all of the amazing things I have done in the past three years and my renewed health — it is a celebration of my ability to listen to my heart and follow the treatment path that I felt was right for me.

Happy birthday Wilbur the stoma!

Finding hope amidst the mud

Published on October 9, 2013October 30, 2017 by ostomyoutdoorsLeave a comment

A few weeks ago, Doug and I climbed an eight-pitch rock formation in Rocky Mountain National Park called Spearhead. It was a great adventure and my first big backcountry rock climb since surgery. All went well but as we summited we noticed some huge thunderheads building above us. We descended and got safely back to camp just as the lightning, hail and rain began. We packed out our soggy gear and hiked the six miles back to the trailhead in a light rain. Little did we know at the time, those sprinkles were the start of a weather system that would last five days and flood parts of the Front Range of Colorado. Sections of the roads we traveled on that evening would be completely wiped out, and homes and businesses that we passed by would be damaged or destroyed.

Storm clouds start building rapidly as we summit Spearhead.

Hiking out in the rain with Spearhead in the background. Little did we know that this weather system would last five days and cause disastrous floods on the Front Range. — We hike out in the rain with Spearhead in the background. Little did we know that this weather system would last five days and cause disastrous floods on the Front Range.

Doug and I walked around our own neighborhood during the time of heaviest precipitation and watched small creek beds fill and and overflow their banks and turn into swift rivers. Our immediate area was spared the worst of the rains and did not sustain any damage except for some flooded trails and parks. As we watched the disaster unfold only 20 miles to the north and learned of the immense destruction there, we wondered what we could do to help. We put our names on a volunteer list for a large organization, but were told that it would be a month before needs would be completely assessed and our applications processed.

Our area got a lot of rain, but the only damage was to nearby trails and parks. The flood waters cover our neighborhood ball diamond and bike path in this photo which was taken as the water started to recede. The actual creek (in the upper right corner of the picture) is usually small and only a couple inches deep. — Our area got a lot of rain, but the only damage was to nearby trails and parks. The flood waters cover our neighborhood ball diamond and bike path in this photo which was taken as the water started to recede. The actual creek (just out of view in the upper right corner of the picture) is usually eight feet wide and only a couple inches deep.

A week after the flood Doug and I made a trip up to Boulder, one of the severely impacted towns, to go to a premiere of a climbing film. It was crazy to see how much flood recovery had already happened. Major roads had been cleared, a lot of businesses had reopened and things looked normal on the surface. However, before the presentation, a group of local climbers got up on stage and talked about all the work that still needed to be done. Right after the flood, these individuals saw that their neighbors were in need and simply showed up with shovels and buckets to dig out impacted homes. Soon they had a name: The Mudslingers. The newly formed community-based volunteer group invited everyone to join in and help make a difference. It was easy—all you had to do was show up at their makeshift office in downtown Boulder and they would assign you to a project.

Word of the Mudslingers spread quickly and soon it became a large group made up of people of all different backgrounds—not just climbers. When we were finally available to volunteer this past weekend, we were afraid that there wouldn’t be that many projects left to help with. After all, it had already been three weeks since the flood.

Of course I thought about my ostomy. Would the lifting be too heavy? What would I do with my full pouches out at a flood site with no restrooms for miles? I hadn’t let my ostomy stop me from anything before and I sure wasn’t going to let it hinder me from volunteering. I would wear my hernia prevention belt and ask for help if a task involved heavy lifting. Certainly I could shovel dirt and that was what was most needed. As far as dealing with my waste, I would just do the same thing I did on a mountain: find a somewhat private spot, swap out a closed-end pouch and pack it out.

We showed up at 8:30 a.m. on Sunday and there were about 20 people gathering on the sidewalk outside the office. After signing liability waivers, we jumped in a car with a couple other volunteers and began driving 30 minutes to the site. On the way there, it was hard to even tell there had been a flood. It was a gorgeous day and cows were grazing in farm fields as we passed. Bicyclists were out in droves enjoying the beautiful weather. I kept watching for flood damage, but I couldn’t really see anything save for some puddles in the fields and some grass that looked like it had been matted down by water. I was starting to wonder what kind of work we would be doing. It seemed like the area wasn’t that heavily impacted. I would soon discover that I couldn’t have been more wrong.

When we got within 10 minutes from our destination, I started to see some low-lying areas where it looked like a lot of mud had been cleaned up from yards and piled up. However, it wasn’t until we came face to face with a “road closed” sign that I had the first inkling of the sheer destruction I was about to witness. The house we would be working on was just beyond this sign, so we drove around it. As we turned into the driveway, we noticed that the main road extended only another 50 feet before ending in an abrupt cliff. It had been completely washed out by the flood. “Road gone” may have been more appropriate wording for the sign.

The road 50 feet from the driveway of our work site had been completely washed away.

Across the river a flood moved a garage and filled it with debris. — Across the river the flood moved a garage and filled it with debris.

When we got to the property, I stepped out of the car and looked around in disbelief. The damage was so much worse than I had imagined and my mind had a hard time making sense of the disorder before me. There was a children’s slide up in the branches of a cottonwood and a huge construction dumpster tipped on its side and pushed up against a tree like an empty cardboard box. Across the river an RV sat marooned in silt while a garage had been completely moved off its foundation and stuffed with branches from the force of the water. Jumbled tree limbs, house parts and other random items formed debris piles everywhere. On the property, there were enormous mounds of destroyed belongings: muddy shoes, mattresses, appliances, luggage, packages of unopened chips, a child’s toy, and a crushed TV were just a few of the objects I saw stacked up. Some of the items belonged to the person who lived in the house but many of the things had traveled there from miles upstream. The house had already been dug out by an earlier group of volunteers, but there was still two to three feet of wet silt covering the floor of a barn and a large portion of the yard.

It was hard to comprehend the degree of damage at the site.

Huge debris piles were left behind by the flood. It was hard to comprehend that this spot was once a tiny 4-inch deep creek. — Huge debris piles were left behind. The creek that flowed here before the flood was only a few inches deep.

After looking around for a few minutes, we were briefed on the project. Our main objective in the morning would be to clear large debris out of the mud in the yard so that a tractor could come through and scoop up the remaining dirt. There was such an overwhelming amount of deposited silt that it was hard to know where to take the first scoop. We all just started to dig in. Soon we were finding all sorts of things including a bike, golf clubs, a dog crate, fishing poles, a propeller and even a toilet. The most frustrating thing was that a huge number of window frames had washed down from somewhere up stream and were layered in the silt like sheets of paper. We would dig out one only to find another right underneath. We got so excited when we were able to remove one with the panes still intact, but most were broken and trying to remove all the glass from the mud was impossible. Digging through the mud, it was hard not to get emotional. I knew that every object we found contained a story of someone who had been impacted by the disaster.

Clearing out yet another window frame. We found two more layered under this one. It often felt like we were on an archeological dig. — Clearing out yet another window frame. We found two more layered under this one.

We found many unexpected things in the silt, but this one was a biggest surprise. I did find it humorous that I so often had to search for a toilet with ulcerative colitis and here there was one in the mud! — We discovered many unexpected things in the silt, but this one was the biggest surprise. I found it humorous that I so often had to search for a toilet with ulcerative colitis and here was one in the mud!

Doug chains up a lawn mower so that it can be pulled from the mud.

By lunch we had made some amazing progress. As we sat down to eat, the homeowner, tenant and a neighbor that was also helping with the cleanup came over and told us stories about the flood and its aftermath. The 70-something homeowner now lived in town but rented out the property. She had bought the place in the 1970s and talked about the home’s rich history and all the memories of the time she had lived there. Due to the fact that the home was on a creek that was usually a small trickle, she did not have flood insurance. The homeowner had talked about wanting to give up once she saw the damage because it had been so overwhelming.

The renter who lived in the house had been keeping a close eye on the rising creek only to have a drainage ditch behind the house unexpectedly overflow and quickly inundate the house. He evacuated before things got really bad and thought he would come back to some wet carpeting the next day. Instead he found his house full of deep mud with all his belongings on the first floor and in the barn destroyed. This had been his home for 10 years and he talked about how it was the only place his grandchildren had ever known. It was clear that all the individuals loved this place and that their loss was huge. I couldn’t have imagined going through what they had, and my heart ached for them.

After lunch the crew divided into two teams. One went to dig out the three feet of mud in the barn. The rest of us donned masks and headed into the house to remove insulation and drywall. An earlier group of volunteers had already taken the walls out up to the high water mark soon after the flood, but it was determined that the rest of the drywall up to the ceiling should be taken out. As I was ripping out the walls with the rest of the team, I got really sad. Just a few weeks ago, these were cozy rooms full of someone’s treasured belongings.

Doug tackles the mud in the barn. We were very happy that we invested in rubber boots for the job!

As we finished up in the house, I noticed that the walls along the staircase to the second floor were intact and covered with framed family photos. I held my hand in front of my eyes so that I could block out the area we had gutted and just focus on that one little space untouched by the flood. The comfort and tranquility of the upper stairwell stood out against the piles of broken drywall, dirt and bare studs that had become the barren first floor. I closed my eyes and pictured the lower level becoming a comfy home again. I imagined colorful walls and rugs, artwork on the fridge, comfy furniture and laughter filling the now empty space. Though it would take some time to get there, I knew those things would be a reality thanks to all those who had volunteered.

The stairway to the second floor provided a glimpse of what the house was like in the past and what it would again in the future. — The stairway to the second floor provided a glimpse of what the house was like before the flood and what it would become again in the future.

The day came to a close and I wasn’t the only one full of hope. At the end of the day the man who lived in the house smiled as he talked with me about the how the house would be even better than before once repaired. Walking back to the car, tears welled up when I overheard the homeowner talking on the phone about how overjoyed she was at all the progress that had been made during the day. I looked around and things still seemed so daunting. However, in her eyes the improvement was huge—the property she loved was starting to be recognizable again. As we all got in our cars to leave, she invited us to return to see the place once it was rebuilt.

I know from going through serous illness and ostomy surgery how important it is to have hope. I also know that sometimes it gets lost and you need others to help you find it. In this case hope was well hidden in many feet of thick mud and was particularly hard to locate. Still, it had no chance of remaining concealed with 20 hearty, shovel-wielding volunteers working tirelessly at the site. With each piece of drywall torn out and each bucket of dirt removed, hope was unearthed and the despair of these individuals began to turn into optimism. Words can’t describe how amazing it felt to be there for someone in need and to be part of that transformation.

The stars aligned for my trip up Rainier (feat. new video)

Published on September 2, 2013September 3, 2013 by ostomyoutdoors18 Comments

I must admit it. I have been very fortunate when it comes to my ostomy. I have had the best medical team imaginable through my UC and surgery journey. I have a wonderfully constructed stoma that functions perfectly and my wafers never come loose or leak. As of yet, I haven’t had the troubles with foods or blockages that some people with ostomies do. I don’t take any of this for granted and try to live each day with a sense of gratitude over the way things have turned out and for my restored health.

I felt this same level of thankfulness many times on my Rainier climb. I would stop for a few moments, look around in amazement and think I can’t believe I am really here and then close my eyes and give a silent thanks. Leaving the park after the climb was really hard. I didn’t want to let go of all I had experienced on the mountain. As we drove away, I kept wanting to take one last glance at the peak–as if each additional view would somehow help me better process all that being up there had meant or would make the memories more lasting. My ascent of Rainier couldn’t have turned out more perfectly, and it felt as if the stars had aligned for so many aspects of the trip:

My climbing team was amazing
I climbed with the best group of people that anyone could ask for. We had a total of four guides and eight participants in our team. Just by sheer luck of schedules– two of our guides also happened to be doctors and three of the other clients were nurses. Though I didn’t talk about my ostomy a lot on the climb (I had other things to focus on), having teammates with medical knowledge made bringing it up infinitely easier.

Our group met at the guide service headquarters the day before our climb to go over gear and logistics. After the meeting, I stayed back to talk with Emily Johnston, our lead guide, and also an ER doc. I brought up some of the unique challenges my ostomy presented (hydration, having to empty on rest breaks, etc.). She had some experience with patients who had ostomies and was very understanding and matter-of-fact about it. From that point on, I knew there would be no awkwardness when I had an ostomy-related question or needed to deal with it on a rest break.

All four of our guides were amazing and top-notch. One of our guides, Craig John, had made it to the top of Everest. Liam O’Sullivan, another guide and doctor, had set a speed ascent record on Rainier in 2008. Emily, Liam and Craig had also climbed Rainier over 100 times. Our final guide, Jeff Ward, was certified with both the International Federation of Mountain Guides Associations as well as the American Mountain Guides Association and instructed other alpine guides. Suffice it to say that we were in very good hands.

The other climb participants were some of the nicest people I have met. We formed a quick bond and everyone was so encouraging and supportive of each other. I truly hope that someday we will get to meet up in the mountains and climb together again.

Our team rests before roping up and heading to high camp. — Taking a few minutes to rest before roping up and heading to high camp.

The weather cooperated
Day one was sunny and clear blue, but when we woke up on day two, an angry looking lenticular cloud had situated itself over the top of Rainier. Fortunately, we were only practicing glacier travel skills and rope work near our low camp at Camp Muir that morning. After a short hike to the high camp at the Ingraham Flats in the afternoon and an early dinner, a ferocious thunderstorm blew in. Not only were we surrounded by intense lightning–which was fortunately attracted to the higher ridges and not our camp–but three to four inches of fresh graupel (soft hail-like snow pellets that resemble the innards of a bean bag) fell. The forecast didn’t look good for our summit attempt the next morning either, and we went to bed feeling disappointed that we probably weren’t going to make it any higher on the mountain.

Making our way to high camp a couple of hours before the severe storm blows in. The crevasses were scary but beautiful.

My father-in-law Peter checks out the spectacular post-storm clouds.

Home sweet home at high camp. — Home sweet home at our high camp at the “Flats” on the Ingraham Glacier.

Much to our happy surprise, we woke up to our guides’ voices telling us that the skies had cleared! We quickly ate breakfast (at 11:30 p.m.–yes, that’s right, in the middle of the night), got packed up and then tied in with our assigned rope teams. It was slow going with all the fresh deep graupel on the trail which made it feel like we were walking in deep sand. I was second in line, and for every step forward, I slid a half a step back.

The route was also more technical than it usually was at this time of year. Several larger crevasses had opened up, and we had to cross the gaping abysses by walking across extension ladders secured on each end. When I shined my headlamp into one of the voids I could not see the bottom. As we hiked, we could see that the stars were disappearing in the dark sky– more clouds were coming in. We pushed on and reached the top of Rainier at 7:30 a.m. We were only able to bask in our success for maybe ten minutes before it was time to head down. The clouds were looking alarmingly like the ones that had just dumped on us the previous evening. Even in good weather, the technical crevasse sections of the route had a tendency to cause a bottleneck of climbers. Being stuck waiting in an exposed place surrounded by lightning would have been terrifying and dangerous. Though we all would have loved to spend more time on top, we knew it was not worth the risk. As it turned out, the clouds blew over without incident and we ended up having great conditions for our descent.

Peter, Doug and I on the top of Rainier! They can’t be seen in the photo, but some ominous storm clouds were gathering to the south. Fortunately they never materialized into much and we had good conditions on the descent.

Descending the upper slopes of the mountain.

Another team makes its way across the most technical part of the route. A climber crossing a ladder over a large crevasse can be seen in the center of the photo. — Another team makes its way down the route. A climber crossing a ladder over a large crevasse can be seen in the center of the photo.

Doug makes his way across a ladder that bridges a gaping crevasse.

My ostomy behaved
Two days before I was to leave for my climb, my ostomy acted up for no apparent reason. I had pure liquid output for a while and when I changed my appliance wafer one final time before leaving, I noticed I had numerous ulcers on the surface of my stoma. I had experienced these on many occasions before and even had them biopsied (which only showed non-specific inflammation and not Crohn’s). However, this time there were more ulcers than usual and some of them looked different. Along with he circular ones that I have been getting on the side of my stoma, there were strange elongated amoeba-shaped ulcers on the tip and just barely extending into the inside of my stoma. I thought, Oh no! I don’t need something new to deal with right before heading out on the climb.

I decided not to worry about it. If I had liquid output and had to change my closed end pouches more frequently along the route, so be it. I had also trained with a much heavier pack than I would actually be carrying on the trip. I knew that if I had to bring more water to offset any extra fluid loss, I would be fine with the pack weight.

Luckily, the morning we left the trailhead, my output thickened and my ostomy fell into its usual pattern of having to be emptied every four to six hours. The first day of the climb I was even able to go one stretch of eight hours. When I returned to my lodging after the climb and put on a new wafer, I noticed the ulcers had also started to go away. Whew!

I ran into one of my IBD role models on a rest break
Years ago, Doug did some website work for International Mountain Guides and met with the three guys that ran the company: Eric Simonson, Phil Ershler and George Dunn. When it came time to climb Rainier, we knew we wanted to make the trip with their guide service.

In 2006, when I was first diagnosed with ulcerative colitis, I also found out that Phil Ershler had Crohn’s disease and had recovered from colon cancer. He and his wife Sue had just shared their story in the book Together on Top of the World which chronicled their journey to overcome those challenges and climb the seven summits together. I read the book and went to see them speak at a local climbing shop and was deeply moved. The things that Phil had gone on to do in spite of IBD were truly remarkable. As my disease continued to worsen over the years, Phil’s story remained an inspiration to me.

When we knew we wanted to do our climb with International Mountain Guides, I emailed Phil and asked him his thoughts on doing the climb and what route might work best for me. He gave me some great suggestions and was really encouraging. As luck would have it, we ran into Phil on the way to Camp Muir on day one of our trip. He was descending from a day hike with his wife and a friend and happened to pass by just as we had paused for a rest break. He stopped to chat with our group, and I pulled him aside afterwards to thank him in person for the encouragement and inspiration. I still can’t believe that of all the days on the mountain… and all the people who climb it… and of all the places to take a rest break… we ran into Phil right there that day. Seriously. What are the chances?!

Chatting with Phil Ershler, co-owner of International Mountain Guides, at a rest break.

Though there were many fortuitous things on my climb, there were also aspects that were not just a matter of luck:

I trained really hard
The months before my climb were a roller coaster ride of injury and uncertainty. From being diagnosed with steroid-induced avascular necrosis in my shoulder in December to having hip and Achilles tendon problems in the spring– I really thought I might never be able to do the climb. However, I did everything I could to make it happen. I worked diligently with my physical therapist to get to a point where I could at least hike and aqua-run again and then did those activities week after week. If I was tired after work, I still found the motivation necessary to head to the pool. When the alarm went off at 1 a.m. every weekend to hike a big peak, I rolled out of bed and did it. Once on Rainier, this training made the climb so much easier. I still can’t believe how healthy and strong I felt up there; it was everything I had hoped for.

I was willing to ask tough questions
When I filled out my application for the climb last fall, I was very open about my ostomy. I wrote about the challenges it presented and asked for feedback from the staff about how I could handle these things on the climb. No– it wasn’t easy writing to strangers and explaining ostomy waste and my various needs related to it. However, because I was straightforward and honest about my situation, I got some amazingly helpful suggestions and gained insight into how I could adapt to the conditions I would likely encounter on the trip. Once I got up there, I was able to enjoy the climb and not worry about my ostomy because I knew what to expect.

I did not give in to fears
There were a plethora of things to be nervous about in regards to my ostomy on Rainier. Would I be able to stay hydrated on long days when all our water came from snow and could only be obtained at camp? Would it be really hard to swap full pouches on steep slopes in the cold? What about when being roped up on a team? Would my heavy pack be a problem? How much should I tell my fellow team members about my ostomy and when? I knew rest breaks were kept short. Would I have enough time to empty my appliance plus refuel and hydrate?

Instead of getting too worried about any of these things or letting them stop me from going, I equipped myself with as much information as possible to help me prepare for the trip. Beyond that, I wholeheartedly jumped into the unknown and let it play out minute by minute. There were many times that I had no idea where I would swap out a pouch within the next hour or when a conversation with another person might turn to my ostomy. I figured it out as I went along and that is one of the things that made it such a grand adventure.

On the way to the high camp, we had to move quickly through an area prone to rockfall. — As we crossed the Cowlitz Glacier on the way to high camp, we had to move quickly through an area prone to rockfall.

The video in this post covers some highlights of the trip and conveys the emotions of the climb better than I could ever express in writing. Due to the fast pace of the climb and the fact that we were moving through difficult terrain in roped teams, carrying ice axes and wearing heavy gloves, we weren’t able to record nearly as much footage as we usually do for our films. I plan to do two more written posts in the upcoming weeks covering more details about the Rainier trip: one on the specifics of how I managed my ostomy on the climb and another regarding the sometimes challenging issue of knowing how much information to share with others regarding one’s ostomy.

From peak to pool

Published on June 16, 2013 by ostomyoutdoors13 Comments

Lately I have become part octopus, part mountain goat and part fish.

The octopus part of me has been juggling tasks at work like crazy. I spent the last couple of months organizing a big festival while also having a bunch of other programs to design and lead. One weekend I was teaching a nature-sketching workshop, the next a toddler class on toads. When I am done typing this post I need to practice my guitar for an upcoming campfire program. I have longed to come home and do something relaxing after this whirlwind, but that is not in the cards this summer. What is on the agenda is Rainier and I need to use every spare minute getting my body ready for the climb.

This leads me to my mountain goat side. Just about every weekend, Doug, his dad and I have climbed a 13,000- or 14,000-foot peak. Each time we do one of the hikes, we have been increasing the weight in our backpacks. Our last hike took us to 14,141-foot South Mt. Elbert. The hike was around 10 miles round trip and I was able to carry 45 pounds with 4,500 feet of elevation gain. I felt really strong and was ecstatic with the accomplishment because this is similar to what I will have to do on Rainier. I still have just over a month of training time before the trip so the plan is to keep doing hikes of this nature, including a few overnight trips, so that we can begin to move more quickly and efficiently on steep terrain with heavy packs. Some evenings after work I have also been going up to the Flatirons in Boulder, CO to hike some shorter and lower (though still steep) peaks.

On the summit of 13,5751 Rosalie Peak on May 26, 2013.

Sneaking in a 7 mile hike of 8,144' Green Mountain after work on May 30, 2013. The sun was quickly setting! — Sneaking in a seven-mile hike of 8,144-foot Green Mountain after work on May 30, 2013. The sun was quickly setting!

Summit-South-Elbert-web-ver — A few days later on June 2, 2013 we made it to the summit of 14,141-foot South Mt. Elbert.

And tagged 13,588' Mt. Cosgriff on the way down. — We tagged 13,588-foot Mt. Cosgriff on the way down.

So far, my joints have been doing great through my training regime. Part of this has to do with the comprehensive physical therapy program I am on. Between my shoulder, hip and Achilles exercises, I spend about 45 minutes most days on physical therapy. It taxes my schedule and makes me stay up later on some nights than I would like, but the benefits have been huge.

The other reason I think that my joints have been doing so well is that I discovered a new exercise: deep-water running. Hiking one or two big peaks each week with a heavy pack is hard on my joints, so in between I have decided to skip running, climbing, zumba and even biking to train as these all make my Achilles tendonitis flare up. I know I will return to all these activities when I get back from Rainier as my Achilles is basically already healed. However, for now I just don’t want to risk re-injuring it since things are going so well and I am able to hike long distances with elevation gain again. I had tried swimming to increase fitness, but the repetitive arm motions aggravated the avascular necrosis in my shoulder. I knew that I had to complement the long weekend hikes with something in order to get enough cardiovascular training in mid-week. But what activity?

I took to the internet to get some ideas and there I discovered the perfect training activity: deep-water running. Doing this exercise would help me build up cardiovascular fitness and muscle strength while giving my joints a chance to rest from the long hikes I was also doing. A quick Google search revealed several instructional videos on deep-water running. and it looked pretty easy. It basically involved putting on a floatation belt, going to the deep end of a pool and running almost like you would on land. The running form ends up being slightly different, but the videos provided enough guidelines that I felt confident to give it a go.

The first time I ventured to the gym to try the new activity I felt awkward because I didn’t travel very far when running in the deep end of a pool. On land, when you increase your running speed and intensity you generally travel a much greater distance. In the the pool, I can run as hard as possible and only travel 15 feet. It reminds me of crazy nightmares where I am being chased by ghosts, monsters or bandits and I am running really fast to get away but not getting anywhere. When I exhaust the length of the deep end, I turn around and head the other direction.

Suited up and ready to go in my floatation belt.

With the belt keeping me afloat, I mimic the running motion I would do on land.

Running in small circles in this way doesn’t feel very interesting compared to running on a scenic trail, but I have to remind myself that it is really no different than running on a treadmill. However, the cardiovascular benefits are huge. Deep-water running really gets the heart rate up. Not to mention that the resistance the water provides has helped me build muscle–and not just in my legs. I move my arms underwater just like I do when I run on land, but because the resistance is so much greater, I have noticed my arms are getting a lot stronger too.

As on land, one has to pay attention to their running form in the water. I find that if I am getting lazy about form, I will start treading water instead of running. Treading water is not nearly as strenuous as running and does not get my heart rate up to an adequate training level. To make sure I am keeping my form, I will actually close my eyes and picture myself running on a trail or road and try to mimic that movement in the pool. Another trick that works well for me is to pick a stationary object on the edge of the pool and pretend it is another runner in a race that I am trying to catch. Both of these things help ensure that I stay in good form and keep my heart rate up.

For workouts, I usually deep-water run for about 45 minutes to an hour and then soak in the hot tub for 15 minutes which feels amazing on my joints. I have been deep-water running 2-3 times a week. A lot of people may be wondering if this influences my ostomy appliance wear-time. I find that being in the pool and hot tub this much does not affect my appliance’s ability to adhere. However, I change my appliance every three to four days regardless of what activities I do. Perhaps if someone was trying to get a seven-day wear-time, swimming might shorten it a bit.

I also do not have to do anything different to get my appliance to stay on in the pool. I basically jump in with my wafer as is (my wafer method is pictured in this post). Some people who have had issues with their appliances staying on in the water have great luck with products such as Sure Seals and Coloplast Brava Elastic Barrier Strip. I have tried both and they work well. I just find that my appliance sticks fine without them for the amount of swimming I do. If I were to take a beach vacation or a trip to a water park where I was in the water all day I would definitely use these. As far as swimming attire when I am deep-water running, I wear a variety of tankini tops with swim shorts and then an Ostomy Secrets Swim Wrap which covers the part of my pouch that sticks out above the low-rise swim shorts.

If you are looking for a gentle-on-the-joints exercise to gain strength I would recommend deep-water running. I only wish I had discovered this activity sooner after surgery. It would have been a great low-impact way to get back into shape once my incision was healed and I could return to water sports.

For now, it has become this octopus-mountain goat-fish’s best option for getting in shape for Rainier. It fits into the busy work schedule, is easy on the joints, and gets the heart pumping. I am feeling more optimistic then ever that as long as the weather cooperates for our ascent, I will be strong enough to stand on that summit.

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