Slowing down time between stomaversaries

Yesterday was Wilbur the Stoma’s birthday! I know the past five years since surgery have contained days and days of incredible adventures, but somehow the time has still gone by in a flash. With the sense of normalcy I now have with my stoma, the memories of  those early days are starting to fade.

I love looking back on my blog posts and videos as they help me to connect with who I was in those initial years after surgery, but so much of that time is also a blur. Life sprints ahead when I wish it would meander along in a stroll. It feels like summer was just here, and now the trees are already missing their leaves. Before I know it, I will be celebrating my six-year stomaversary. I want to slow down and savor moments more. Fortunately, I have found a secret for reaching that objective: nature journaling.

I first started nature journaling in the 1990s when my love of keeping diaries and passion for sketching merged and forever changed my relationship with nature. In my journals, I could playfully record natural happenings, curiously ponder what I was witnessing and write down my feelings about it all. At the end of a journaling session, a moment in nature and in my life had been noticed and preserved on the page (and in my memory)! Through my journals, I felt more connected to the natural world and to my soul.

The problem was, despite my best intentions, there were huge chunks of time over the years when I didn’t write or draw in my journals.  My post-surgery years were one of those stretches. What the birds, trees and flowers were doing during those moments I cannot say. And that made me sad.

I don’t get along well with unhappiness, so I am in the process of purging other things from my schedule in order to have more personal time to journal. As small details in the lives of box elders, woodpeckers, praying mantises and other flora and fauna are noted on paper, the hectic pace of my own life slows down and feels richer. Over the past two years, I have filled half the pages in a large sketchbook. That is a big improvement from when my nature journal sat mostly untouched after surgery, but I can do better. I aim to fill the second half of that journal in the next few months.

Mantis sketch

To further build my journaling skills, I attended a three-day workshop in the Marin Headlands of California last weekend with two of my favorite nature journalists, John Muir Laws and Clare Walker Leslie. The experience was beyond-words inspiring. We greeted the birds with our sketchbooks at sunrise, explored the coastline with pens in hand in the afternoon and captured the sunset on our pages. After a short break for dinner, we drew taxidermy mounts in the conference center’s teaching lab until bedtime.  At one point during the trip, I spent an entire hour sketching scat, tracks and other signs left by otters in their travel corridor between a pond and canal. Observing and recording the natural world that keenly for three days straight was remarkable and allowed me to slow down and ground myself in the present. Refreshed and inspirited, I left the workshop with a goal of writing and drawing in my nature journal more frequently.

Journaling on the coast

Otter trail sketch

One of the ideas that resonated most strongly for me was Clare Walker Leslie’s practice of recording daily “small wonders.”  When I didn’t have time to create an entire journal page of nature observations, simply documenting one exceptional image from the day could help connect me with what was happening in the natural world. Whenever I needed to recall those moments, they would be there waiting for me in the pages. I started my first series of these this week, and I am hooked.

Daily sketches

Time can’t actually slow down, and the 365 days until my next stomaversary will come and go whether or not I nature journal. However, closely observing and recording happenings in the natural world  helps each day to stand out. It’s hard for life to be a blur when you are looking with focused eyes. I might record tracks in the snow after winter’s first blizzard, the first blooms of spring, a spotted fawn in the tall summer grass and all the things that make the world so breathtakingly beautiful. Five years ago surgery gave me a second chance at life. It’s time I start paying greater attention.

“Ten times a day something happens to me like this – some strengthening throb of amazement – some good sweet empathic ping and swell. This is the first, the wildest and the wisest thing I know: that the soul exists and is built entirely out of attentiveness.”

~ Mary Oliver

Nature journaling

 

My favorite products for dealing with ostomy waste in the backcountry

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.

Fly fishing before the storm came in.
Fly fishing before the storm came in.

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.
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.
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.
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

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.

Windmill-for-webPawnee-Grasslands-journal-pWhen 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.

 

Marshmallows and paper towel hats: tips for anytime appliance changes

The main room of our condo during a recent vacation with Doug’s parents looked a bit like an outdoor gear store. Snowboards and skis of all sorts lined the wall and a plethora of boots sat in front of the fireplace. Closets, dressers and duffel bags overflowed with Capilene, fleece and Gore-tex clothing. During a week in the mountains near Winter Park, Colorado, we took part in two days of biathlon racing, and one day each of skate skiing, snowboarding and telemark skiing. I also managed to squeeze in some hiking and sketching in my nature journal in Rocky Mountain National Park. With so many activities on the schedule–some of which required an early start–it was hard to know when to fit in my appliance changes.

Our vacation included to days of biathlon racing.
Our vacation included two days of biathlon racing. I would rather change my appliance after dinner and face the biggest volcano of ostomy output than get up at 4 a.m. to change my appliance before a race.
I also put on my telemark skis after not using them for eight years (and then could barely walk for the next week.) I am trying to relearn this skill so I can use my tele skills to get out to some Colorado ski huts next winter. Stay tuned for a post in 2016 about changing your appliance in a communal ski hut.
I also put on my telemark skis after not using them for eight years (and then could barely walk for the next week.) I am trying to relearn this skill so I can use it to take trips to Colorado ski huts next winter. Stay tuned for a post in 2016 about changing your appliance in a communal ski hut.
Since I could barely walk after my day of telemark skiing, I opted to sit down and sketch in my nature journal for one day of the trip.
Since I could barely walk after my day of tele skiing, I opted to sit down and sketch in my nature journal for one day during the trip.
My snowboard was feeling left out, so I took it out for one day on the slopes. My legs were so tired from days of non-stop winter sports, that I completely lost the ability to make my board turn after a few runs. Note to self-- sliding down the entire front side of the Winter Park Resort on your heel edge is not much fun. Best to take a rest day instead.
My snowboard was feeling left out, so I took it out for one day on the slopes. My legs were so tired from days of non-stop winter sports, that I completely lost the ability to make my board turn after a few runs. Note to self– sliding down the entire front side of the Winter Park Resort on your heel edge is not much fun. Best to take a rest day instead.

Unfortunately, appliance changes aren’t that quick for me. Due to pretty acidic ileostomy output, I have to protect my skin with several layers of products. Stoma powder, skin prep, Duoderm, Eakin Seals and paste–I use them all. My changes usually take at least 30 minutes–sometimes longer.  Even when I use all those products, my output chomps through them like a piranha if I try to go longer than three or four days, and I end up with very raw and painful skin.

The the saying "simple is better" does not apply to my appliance changes. I need a lot of layers of products to protect my skin. Putting on all this stuff takes a lot of time and gives my stoma ample chances to expel output everywhere.
The saying “simple is better” does not apply to my appliance changes. I need a lot of layers of products to protect my skin. Putting on all this stuff takes a lot of time and gives my stoma ample chances to expel output everywhere.

Those with an ileostomy know that it can be pretty hard (if not impossible) to find even a short chunk of time when your stoma isn’t pooping. Usually I try to change my appliance in the morning as that is when my stoma is the most quiet. However, on a busy ski vacation (or any time with a full schedule) that plan doesn’t always work. If I already have to wake up at 5 a.m. to make it to a race on time or catch first tracks in powder, it is hard to get up even earlier to fit in an appliance change. Also, I don’t like worrying about when I am eating and how it will impact my appliance swap. If I want to head out to a restaurant for a post-ski meal later in the evening, I go for it even if I know it will be harder to change in the morning due to the extra output. In some cases I will even switch out appliances in the evening right after a big dinner (gulp!) if that is the best way to fit it into my schedule.

If you are wondering if I have a particularly quiet and cooperative stoma, the answer is no. My stoma is a non-stop workhorse and churns out output 24/7.  Fortunately, I have some tricks that allow me to change at any time of the day even when my stoma is active.

Trick number one: Marshmallows
My stoma nurse first let me in on this little secret. If I eat four to six regular-sized marshmallows about 15 minutes before a change, my stoma will usually stop outputting for about 30 minutes–just enough time to finish getting my appliance on.  I can’t make any promises that it will work for you, but I recommend giving it a try. It is the only time you will get to eat marshmallows for health reasons. I have no idea why the very first individual to discover this trick was dining on marshmallows right before changing their appliance, but I sure am thankful for their sweet tooth!

This photo isn't from our winter vacation but does show my love for marshmallows. They are best over a campfire, but I will happily eat them cold before a 5 a.m. appliance change.
This photo isn’t from our winter vacation but does show my love for marshmallows. They are most delicious when toasted over a campfire, but I will happily eat them cold before an early morning appliance change.

Trick number two: Make a hat for your stoma
When I first got my ostomy, I absolutely dreaded changes. They were tear-filled endeavors wrought with frustration because I couldn’t get my barrier ring and wafer on without my stoma pooping all over the place and ruining the adhesives. I turned to the internet for ideas to solve this problem and discovered a post on a forum that suggested wrapping the tip of my stoma with a strip of paper towel. I gave it a try and couldn’t believe how well it worked! Plus I liked that it made my stoma look like it was wearing a cute hat.

Four years later, and I still use this method during every single change. As my stoma chugs out stool, the little hat fills up. When it has reached maximum carrying capacity, I simply pop it off, toss it in the trash can next to me, and wrap on another. Along with collecting output, the stoma hat frees up my hands to put on powder, barrier film, and all the other products that I use to protect my parastomal skin. It also keeps the base of my stoma dry as it absorbs some of the moisture from the mucous membrane.

This little trick allows me to change whenever I need to as it doesn’t matter if my stoma releases output; the hat is always there to catch it. Occasionally, if my output is profuse and watery during a change, the technique doesn’t work as well. However it is better than nothing, and if my output is watery, sometimes gulping down a few extra marshmallows will temporarily slow down the flow until I can finish the change.

I realize that making a hat for a flush stoma won’t work very well, so this trick works best if your ostomy protrudes from your belly a bit.

The only supplies needed for a stoma hat are one-inch-wide strips of paper towel.
The only supplies needed for a stoma hat are one-inch-wide strips of paper towel.
JWilbur my stoma models a poo-catching paper towel hat. To make one, simply wind the paper towel strip around the top of our stoma and you are set to go.
My stoma, Wilbur, models a stylish poo-catching paper towel hat. To make one, simply wind the paper towel strip around the top of your stoma and you are set to go.
It is easy to slid your wafer right over the stoma when it is wearing a hat. Note that under the wafer, I have already put on my Eakin ring and other materials.
It is easy to slide your wafer right over the stoma when it is wearing a hat. Note that under the wafer, I have already put on my Eakin ring and other materials. If you are using a one-piece appliance, you can still use the hat method. Just pop the hat off right before you put your appliance over your stoma.
All pouched up with no mess at all. For those who are wondering about the tape job, I love Convatec wafers but the tape irritates my skin. I cut it off and add my own strips of Medipore tape.
All pouched up with no mess at all. For those who are wondering about the tape job, I love Convatec Durahesive wafers, but the tape irritates my skin. I cut it off and add my own strips of  3M Medipore tape. This combo adheres well through showering, swimming, and all sorts of sweat-inducing sports.

If you feel your ostomy controls your life and confines you to a certain schedule, keep searching and experimenting to find solutions. I’d never have guessed that something as simple as marshmallows and paper towel “hats” would give me the freedom to live with my ostomy on my terms rather than the whims of my stoma.

A challenging late-summer biathlon

When I haven’t blogged in a while, it is hard to know where to start. I had a wonderful summer filled with a lot of fun activities and it would be impossible to cover all the happenings in a single post. Last summer I focused on the singular goal of climbing Rainier. This year I spent time doing a lot of different things including camping, rock climbing, hiking peaks, backpacking, bicycling, fly fishing, making art and visiting with family and friends. This was not the summer to get in shape or work on any specific fitness goals; it was a time to let myself bounce from paint brush to climbing hold on a whim and let go of some of the overwhelming feelings that I had been experiencing in the spring due to having too many things on my plate. I even fulfilled my dream of spending an afternoon sketching in my mother-in-law’s beautiful backyard flower garden with a glass of iced tea at my side. While I moved forward in feeling less stressed, my performance in a few sports definitely took a hit. One of those was running.

The results of some much needed rest and relaxation: a sketch sketch in my nature journal.
Nature journaling may not improve physical fitness, but it is definitely good for my mental health!

That was not a good thing with a September biathlon race on the schedule. Last winter, Doug and I started this sport and fell in love with it. Our last race was six months ago. In preparation for the upcoming season, we signed up for our local biathlon club’s late-summer event. This warm-weather race would be done by running or cycling rather than by skiing. I absolutely love biathlon and was excited to get out there with my running shoes and rifle. The course was only 5K, so I wasn’t too worried about my lack of training. Certainly I can run a few miles, I figured. It wasn’t like I had been a couch potato all summer. I had done a little bit of running and had still been active with climbing and hiking.

Unfortunately, I was in for a rude awakening on race day. The event was tougher than I anticipated and I huffed and puffed my way through the course. I couldn’t glide down the hills as I was used to doing on skis so it felt like my legs never got a break. Each lap of the race route ended with a small uphill into the range and I was so out of breath during the shooting bouts that I missed most of my targets. That meant a lot of extra penalty laps. Forget about trying to make a certain time–I decided mid-race that my goal would be to simply run the whole course without walking. I succeeded, but was completely wiped out by the time I reached the finish line.

Even though the race was tough, I still had an absolute blast. It rekindled my desire to train for biathlon. Maybe not at a super intense level (I still want to leave time in my schedule to work on art), but enough that I see some personal improvement.

Running into the range for my first shooting bout.
Running into the range for my first shooting bout.

 

Here I am shooting in prone position. The ability to use one's elbow for support makes the it a little easier to hit the targets when I am breathing hard.
Here I am shooting in prone position. The ability to use both elbows for support makes it a little easier to hit the targets.
I couldn't hit any targets in the standing position. My breathing was making my rifle wobble everywhere.
I couldn’t hit any targets in the standing position. My labored breathing was making my rifle wobble slightly, making a huge difference at a distance of 50 meters.
With no targets hit, it is off to the penalty lap once I put my rifle on the rack.
With no targets hit, it is off to the penalty loop for five laps once I put my rifle on the rack. Knowing my fate, I am not sure why I am smiling. Could it be because biathlon is so darn fun?

Another thing that made race day challenging is that I was experiencing watery and profuse ostomy output. I have no idea why—it just happens to me on random occasions. The hard part is that there is no restroom near the biathlon range and the hectic race-day schedule makes it tough to hike back to the lodge to use the facilities. When I am not racing, I am usually helping with scoring or other tasks. My ostomy hadn’t been a problem at other races because I can usually make it six hours between empties. With the higher output, I knew I would have to somehow deal with it out at the range. I thought about taking Imodium, but sometimes that medication makes me feel nauseated, and I didn’t want to feel sick during the race.

To solve the dilemma, I brought closed-end pouches for my two-piece appliance and OstoSolution Seals. When my pouch filled, I dashed off to a secluded spot in the nearby woods to swap it out. The OstoSolutions Ostomy Pouch Disposal Seals made it easy to pack out the full pouches. During the hour I was actually racing, my output slowed down and I didn’t have to worry about it out on the course.

Though it can be frustrating, I really do appreciate it when my stoma acts up and throws me an unexpected challenge. It teaches me to be resourceful and is a good reminder that even on those less-than-ideal days, I refuse to let my ostomy slow me down.  Now if only that were the case with my lung and leg power!  They are definitely holding me back. In the upcoming months I am going to be busily training for the winter biathlon season so that I won’t get so tired on all those penalty loops.

Ostomy awareness comes in small forms too

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.
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.

A big city adventure

Usually when Doug and I head out on vacation, it involves traveling into some remote wilderness or challenging ourselves on rock faces. However, this April, we embarked on a different type of adventure as we made a trip to New York City to visit my brothers. Instead of hiking to backcountry lakes and peaks, we walked to different neighborhoods. From Manahattan’s Greenwich Village to Brooklyn’s DUMBO, we enjoyed taking in the unique character of each place. We also strolled through many of the city’s green spaces including Central Park, Prospect Park and the Highline, and visited the Gugenheim, Museum of Modern Art and the Natural History Museum.

On top of the Rock
On top of the Rock
Central-park-sketching
Sketching in Central Park
Exploring Brooklyn on Citibikes
Exploring Brooklyn on Citibikes

Usually on our wilderness trips, I have questions about routefinding, which layers to wear and whether or not the cloud build-up might lead to a storm.  However, on this vacation my queries were of a different sort–  and some of them became relevant when dealing with my ostomy on the trip:

Do New Yorkers ever get tired of being in small, crowded places?
I marveled over how many people lived in the NYC area and how crowded things were. On the L-train that led to my brothers’ neighborhoods in Brooklyn, I often felt like a pickle in a jar–we were packed into the subway so tightly, yet more and more people would cram in at the next stop. If  you lost your balance when the train came to a fast stop, it didn’t matter because there was no room to fall over.

I also couldn’t believe how tiny some of the restaurants we visited were and how we were often eating shoulder to shoulder with the party at the next table. The restrooms in these little establishments were also itty-bitty compared to the multi-stall bathrooms found in most Colorado restaurants.The square footage of the typical New York apartment is also on the small side making for tight quarters when we were staying with my brothers. I loved having ostomy deodorizer along on the trip so I didn’t have to worry about stinking up these small spaces when emptying or changing my appliance. A dozen drops of Hollister’s M9 drops in my pouch completely eliminated any odor. It is pretty darn cool being able to make your poo not stink on command– something that isn’t an option for those with colons!

How can New Yorkers eat dinner so late on a regular basis?
At home, I often run or go to the gym when I get home from work which sometimes has me eating at 8 p.m. It isn’t a problem for me and I don’t notice a difference in my overnight output schedule whether I eat early or late. Still, in NYC we pushed my eating schedule to the max and we sometimes at dinner as late as 9 or 1o p.m. I wondered at first if this would have me emptying all night. Fortunately it didn’t and most nights I was able to sleep tight until morning. Even if I would have had to get up, the inconvenience would have been totally worth the experience of visiting so many fun bars and dining on everything from tasty Thai food to hearty Italian fare, spicy Mexican dishes and New York pizza (gluten free of course!)

Fabiane's Cafe in Brooklyn had the best gluten-free pastries!
Fabiane’s Cafe in Brooklyn had the best gluten-free pastries!

Where do people with IBD find bathrooms in this town?
In the woods, it is easy to find a bathroom anywhere. If you duck behind a tree and dig a hole you are pretty much set to go. In the suburbs, you can often drive to a fast-food restaurant or gas station and easily use the facilities. In New York City, we were always traveling by foot or subway, and it wasn’t easy to find public bathrooms that weren’t reserved for customers. I drink a lot of water to prevent dehydration with my ostomy and I end up urinating a lot. There were many times I thought my bladder was about to burst when I managed to find a restroom in the nick of time. (Thank you, Trump Tower!) Though BM urgency isn’t as much of an issue with my ostomy because I have a lot of control over when I empty, the lack of public restrooms would be incredibly hard during an IBD flare.

Though thoughts about my ostomy did pop into my head a few times on the trip, the vast majority of the time it was at the back of my mind. I was left to focus on fully enjoying the big city adventure and trying to figure out another perplexing question:  how the heck do women cover such long distances in the city in high heels! I have hiked miles and miles on wilderness trails, yet my feet and legs never get so tired as when I visit New York City. People there walk everywhere. Fast. And often in fashionable footwear that doesn’t look very comfortable. I have no idea how they do it. After five days of walking around the city visiting parks and museums, I could barely lift my legs.

My feet feel happy on our initial day of sightseeing in NYC as brothers and I walk across the Williamsburg Bridge. From there we walked to China Town, Little Italy and eventually Lower Manhattan. After five days of pounding concrete on such adventures, I can barely walk!
My feet feel happy on our initial day of sightseeing in NYC as brothers and I walk across the Williamsburg Bridge. From there we walked to Chinatown, Little Italy and eventually Lower Manhattan. After five days of pounding concrete on such adventures, I can barely walk!
Resting my feet on the rooftop after a long day of sightseeing
Resting my feet on the rooftop after a long day of sightseeing

Doug and I had loads of fun visiting the Big Apple, but after six days there, we were ready to return to the wide open spaces and slower pace of Colorado. In the weeks ahead, we look forward to returning to many of our favorite summertime sports in the wilds.