On Heavy Backpacks and Hernia Belts

Published on by ostomyoutdoors18 Comments

It has been a long time since I’ve posted on the OstomyOutdoors.com. Just because I have been quiet doesn’t mean life has been void of adventures. In fact, the reality has been quite the opposite. This has been an incredible year full of many wonderful trips in the wilds. In fact, Doug and I spent the most nights backpacking in the wilderness together this year than we have at any other point in our lives. A total of 25 nights were spent in the backcountry.

The biggest of these trips was a 16-day, 90-mile-long backpack in the Wind River Range of Wyoming in August. What made this trip unique is that it was unsupported; we carried all of our food and fuel with no resupply along the way. This led to us both carrying very heavy loads: our packs on the first day of the trip were over 70 pounds.

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I head out on day one of our 16-day trip with my 70-pound pack. Famous Squaretop Mountain is in the background.
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Only 11 miles to go until camp! I made it, but it was a tough day.

Yes, that is an unusually heavy pack. However, depending on the season, my typical pack weight is still anywhere from 35-55 pounds on mountain trips that are over three days. I am sure all my ultralight backpacking friends are cringing!

Though I have incorporated lightweight gear and packing strategies into my backpacking system, an extreme sensitivity to cold (I am wearing a hat and down jacket in my 68-degree home as I type this) means I must bring a higher-than-average amount of insulating clothing and a very warm down sleeping bag–even in the summer season. I also have Raynaud’s Disease which limits blood flow to my extremities when I am chilled. My fingers and toes become waxy-white and numb and are at an increased risk for cold injury such as frostbite.

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At our Peak Lake campsite, Doug shakes out my 15-degree, 800-fill down sleeping bag. It is a great lightweight bag, but wasn’t warm enough for me on this trip. I had to sleep in every layer I brought along and eventually borrowed Doug’s jacket after several sleepless nights due to being teeth-chatteringly cold. Also, we brought our pyramid shelter which is light but spacious (I dislike being crammed in a tiny tent.) It uses our hiking sticks for a center pole which saves weight. Often we will use the shelter without the inner netting which makes it even lighter. However, on our Wind River Range trip there were too many mosquitoes for that option.
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Our trip in the Wind River Range included many river crossings. The stylish rubbery red shoes I am wearing are Vivobarefoot Ultra 3s. They are lightweight and allow me to safely cross streams without injuring my feet or getting my boots wet (which causes Raynaud’s Disease symptoms in my feet.) They also double as great camp shoes.

Mix the extra weight of these body-warmth necessities with the added ounces of spare ostomy supplies, the bear-proof food storage containers that are increasingly being required on public lands in the west and a few minor luxury items like my sketchbook, and the pounds add up. I am quite sure I am never going to be carrying a 25-pound pack on any trip that is more than an overnighter.

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My sketchbook and small set of watercolors never stays home.
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Our 16-day trip in the Wind River Range involved hiking in black and grizzly bear country so special food storage regulations were in place. The white bags in this photo are called Ursack AllMiteys. They are bear- and rodent-proof and are much lighter to carry than regular plastic bear canisters. Fortunately they were a permitted food storage method in the Wind River Range (they are not yet approved for all public lands.) We brought four Ursacks full of food on our trip plus one additional stuff sack full to hang for the first few nights. It was tough figuring out how much food to bring, but we did well and only went home with a few spare energy bars. We each carried 26 pounds of food.
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My spare ostomy supplies weighed about two pounds. I changed my appliance four times on the trip– once every four days. When it is cold or buggy, I usually change in the tent. Fortunately, my output is fairly thick and things are mess-free if I wrap strips of paper towel around my stoma as I work.
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Here is a close-up photo of my supplies as I work on my change in the tent. Though I only changed four times, I brought enough stuff for eight swaps just to be safe. To keep my supplies as lightweight as possible, I did not bring any closed-end pouches as I sometimes do in case I run into situations where it may be difficult to empty. This meant I was always digging holes (about 70 on the whole trip) including at night and in the rain.

For the most part, I seem to do well as a “pack mule.” For a couple of summers during my late 20s, I worked for the National Outdoor Leadership School (NOLS) instructing 30-day wilderness backpacking courses. We carried monster packs on those trips– something my body seems to have retained the muscle-memory for despite 20 years passing by.  However, one of my biggest concerns when hauling a heavy load– or during any strenuous activity for that matter– is developing a parastomal hernia. So far I have avoided getting one and I would like to keep it that way.

So what do I do to safeguard myself?

First, I made sure to work back into exercise slowly after surgery– especially during the first year post-op. For my early post-surgery backpacking trips, I double-checked my pack weights with my surgeon to make sure it was okay for me to carry various loads. After a while, he said it was fine to listen to my body.

Secondly, I keep my core strong by doing planks and other ab-friendly exercises (once I recovered fully from surgery and got my doctor’s okay, of course!). I also am mindful of not gaining excess weight by eating a healthy diet and exercising regularly. Being overweight can cause pressure against the abdominal wall and increase one’s risk of parastomal hernia.

In addition, Doug lifts my pack up to my back when it is over about 50 pounds. Once the pack is centered on my hips and legs, my core is not stressed at all.

Beyond that, my most important tool is a hernia prevention belt. Though I have heard mixed opinions from surgeons on the degree to which these belts actually prevent hernias, the abdominal muscles around my stoma absolutely feel more supported when I wear it during activities that could be hard on the core. These include backpacking, mountaineering, rock climbing, weight lifting, snowboarding, Zumba, yoga, and coughing/sneezing when I have a cold or the flu! I figure it can’t hurt to stack the odds in my favor by using a belt.

So which belt do I use?

I wanted a belt that provided substantial support for the abdominal wall around my stoma, not just a stretchy band. My WOC nurse recommended the NU-Hope hernia belts so that is the brand I went with. I wear their Flat Panel model in the Cool Comfort Elastic option (shown on page 5 of the Nu-Hope link below.) This belt is designed with prevention in mind and is made of a breathable mesh that works great for activities that work up a sweat. It comes in various widths. I use the 6-inch wide model for most of my activities as I find it the most comfortable. The one exception is for yoga when this size prevents me from bending. Instead, I use the four-inch-wide belt for yoga.

Nu-Hope also makes models with even more support for those who already have a hernia. The belts have a hole for the pouch to extend through that is specific to the size of your flange. If you ever change the wafer size of your appliance, you  will have to get a new belt. Nu-Hope can also make custom belts if the regular sizes don’t work well with your appliance or stoma location.

Nu-Hope has a great online guide for explaining belt sizing.

http://www.nu-hope.com/beltlit.pdf

I also found the Nu-Hope staff to be extremely helpful when I called with questions on sizing before ordering my first belt. Nu-Hope does not sell belts directly. Once you know your  style and size, you order through your main ostomy medical supply company. Also make sure to check your insurance policy as it may cover a portion of your hernia belt.

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Nu-Hope belts come in various widths and colors. Pictured here are the six-inch- and four-inch-wide belts in white and beige in the Flat Panel Cool Comfort Elastic option. Note that the circular portion is sized for your specific flange measurements. Belts come in standard sizes, but Nu-Hope can also make custom ones.
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The Cool Comfort Elastic belt is made out of a breathable mesh and is wonderful for active pursuits.

I only use Nu-Hope Hernia prevention belts, but there are other brands out there. Quite a few manufacturers claim that their products are designed for hernias, but I would suggest checking with your WOC nurse for their brand recommendations. You want to make sure you get a belt that provides firm enough support and they would know which belts patients have had good experiences with.

Even though I love my Nu-Hope Flat Panel belt, I do pair it with a couple of other things to improve its performance.

First, because the width of my waist is smaller than my hips, the belt does tend to ride up to that narrow spot. I remedy this by always wearing my belt under a pair of Comfizz brand High-waist ostomy boxers or briefs. This underwear does an exemplary job of holding the belt in place so it doesn’t shift. In fact, I love these underwear for sports whether or not I am pairing them with my hernia belt. They are also wonderful for concealing your ostomy appliance under form-fitting pants and dresses. Comfizz is a brand out of the UK, but their products are reasonably priced and ship to the USA incredibly quickly. They also have great customer service!

Second, I do get some skin chaffing and soreness from the hernia belt when it is compressed under my backpack hip belt– especially with very heavy loads. I remedy this by sliding some 8″ by 8″ squares of polar fleece in between the hernia belt and my skin. This adds a bit of cushion and prevents friction. Fortunately, the fleece doesn’t make the hernia belt too much warmer to wear, as those areas would be under my thick, non-breathable pack waist belt anyway.

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Pictured are the layers I wear for backpacking when a hip belt can cause extra pressure on the belt and my skin. I wear Comfizz Level-one Boxers over the hernia belt to keep it from riding up. I put a layer of folded fleece between my belt and skin to prevent chafing and soreness.
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Putting on my hernia prevention belt set up before shouldering my heavy pack. All the layers mentioned above can be seen. I also wear a cotton pouch cover to keep the plastic corners of my pouch from chafing my leg. Yes– this is many layers but they are oh-so comfortable!
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This set-up works great for rock climbing too, though I usually don’t need the cushioning fleece pieces without the weight of a heavy pack pressing on my hernia belt.

In the first couple of years after surgery, I used my Nu-Hope hernia prevention belt during all exercise. However, as the years went by and my core got stronger, it felt like overkill for some of my milder activities such as running, cross-country skiing and bicycling. However, I still like some abdominal support when engaging in these sports and found a product I love for them: Comfizz Level-two boxers.  Similar in shape to the regular Comfizz Level-one Boxers, the Level-two have an extra-thick section of stretchy fabric over the abdomen which provides really nice support when I don’t want to wear a full-on hernia belt for less core-intensive exercise. These undergarments are also available as briefs if you prefer that style over boxers.

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On the left are Comfizz Level-one Boxers and on the right are Level-two. You can see the thicker fabric panel on the Level-two Boxers. These undergarments are also available as briefs rather than boxers.

Though there is no way to completely safeguard oneself against a parastomal hernia, these products help me feel much more secure during all my active pursuits. If a hernia or fear of developing one is keeping you from getting out in the wilds, I would encourage you to talk to your WOC nurse and medical team and explore belts and other options that could offer protection.

I am going to end this post with a few more photos from our big trip this summer. Happy hiking!

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Only a mile left to camp! I am tired but happy on day two of our trip. This was one of the hardest with 2,700 feet of elevation gain and a heavy pack.
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The snow levels in the Wind River Range were 200-300 percent of normal. Areas that would normally be snow-free in August were still frozen.
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Doug does a map check on the way to the North Fork of Bull Lake Creek–one of the most remote areas of the Wind River Range. We prefer a traditional map and compass for route finding.
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Doug surveys the landscape from our campsite along the North Fork of Bull Lake Creek beneath Blaurock Pass. This place is breathtaking and is one of my favorite spots in the Winds.
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Testing out my new RockPhone. Too bad the reception wasn’t great at our campsite beneath the Knife Point Glacier. 😉
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The Wind River Range was a prime spot for viewing the total eclipse, but we avoided the crowds by taking in the spectacular event from the base of the remote Knife Point Glacier. We even had our very own two-person eclipse-viewing party–complete with special celebratory trail snacks and a goofy commemorative selfie.
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I ascend the Knife Point Glacier after viewing the total eclipse.
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Is there any place in this range that isn’t spectacular? Here I travel through Indian Basin.
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Doug and I have been to the Wind River Range many times, but had never previously explored the popular Titcomb Basin.
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We are jumping for joy to be in this magnificent Titcomb Basin!
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The peaks of Titcomb Basin, seen from Island Lake, glow in the evening light.
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I stroll through the wildflowers near Clark Lake.
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Doug ascends the pass to the Lozier Lakes. Clark Lake is in the background.
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Doug soaks in the peace of the Porcupine Creek Valley. We saw more grizzly bears (a mom and two cubs) than people during the two days we spent this less-traveled area of the range.
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Doug and I feel the mixed emotions of reaching the end of the trail: happy to have had an amazing trip but sad that the adventure is over. It is always hard to return to civilization after living a life of simplicity in the mountains.

Winging it in the Wilderness

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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.

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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.
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.

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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?

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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.

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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!

 

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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.

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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.

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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!

 

Missing you, Dad

Published on by ostomyoutdoors16 Comments

I have been absent from this blog for a while as I have been going through the hardest time of my life. My family and I lost my father just after the New Year. I haven’t been able to find the words to describe the sadness, so I put off writing about it thinking that maybe it would get easier to write about in time.  It hasn’t. In fact, sometimes my brain has barely processed that he has passed away. Things happen during the day and I think, Oh … I need to tell Dad about that and then I remember he is gone.

I am grateful that—along with my brothers and mom—I was able to spend five weeks with my dad at my parents’ home in Washington before he passed away. As difficult as it was, I cherished that time. There were some good moments when we were able to talk about politics and history and some of my dad’s other favorite subjects. However, most of that time he was not very coherent—or at least it was hard to tell if he comprehended what I was saying to him. That didn’t stop me from telling him how much I loved him, or how thankful I was for his loving support, all that he had provided for our family and what a positive influence he had on me.

I still tell him those things today, hoping that somehow he can hear me.

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My family around the year 1985.

My father wanted to be buried in his home state of Wisconsin, so my family traveled back there for the funeral. During our week there, we spent time visiting many places that were significant to us including our childhood homes, places where our relatives had lived and other favorite sites.

One of my earliest memories as a child was walking with my dad and our dog on the wooded paths and railroad trestle at the Fox River Sanctuary in my hometown. It is interesting that out of the countless memories we make throughout our lives, there are some that contain moments that we later realize are incredibly influential to who we become. Those early nature walks in that special place were of that type.

So on one blustery morning during our time in Wisconsin for the funeral, Doug and I went for a run at the sanctuary and crossed the trestle. It had long been abandoned by the railroad, but other than that it looked exactly how I remembered it. I felt happy to be in the same place where I had once stood as a four-year-old. Back then, my dad would have been around the age I am now, and I wondered what he had been thinking about and dreaming of in those days. Moreover, what had been going on in my young mind? No doubt I soaked up the colors of the leaves and the scents of blooms along the river. Maybe I noticed the sounds of birds. Holding my dad’s hand as we strolled along the railroad tracks, the seeds of my future nature-loving existence were being planted. As I jogged over the trestle in January, I whispered a thank you to him for taking me there long ago.

Running along the trestle at the Fox River Sanctuary where I used to walk with my dad.
Running along the trestle at the Fox River Sanctuary where I used to walk with my dad.

Those trestle walks were just the beginning of the adventures my dad would take me and my family on. He loved spending time with us and it was a rare weekend growing up when we weren’t visiting a historic site, taking in a local festival or fair, or going on a camping trip. Later, our family bought a small RV and took multi-week summer vacations to national parks and historic sites (and amusement parks too–he loved roller coasters).  My dad had a passion for sharing our nation’s natural and cultural heritage with us. Those trips left a lasting imprint on me and made me who I am today. They also influenced my career.

My family enjoyed visiting the many lakes found in Wisconsin, including Green Lake.
My family enjoyed visiting the many lakes in Wisconsin, including Green Lake.
My family tent camping in the Wisconsin Northwoods.
My family (minus my younger brother who is taking the photo) tent camping in the Wisconsin Northwoods.
My dad loved trains and loved sharing their history with us. Here he is on a train museum trip with my brother.

Last week I was preparing an education program in the park system where I now work as a full-time interpretive naturalist. The trails were icy so I was scoping out a route that would be safe for participants to travel on. Even though I had been to the park countless times, every visit seemed to hold something new to discover. On this trip, the frozen lake was covered by a layer of meltwater that reflected the cobalt blue sky. As I took in the breathtaking landscape, I whispered a thank you to my dad for those early experiences that led me to a job I love. Just about every day, I get to help others make meaningful connections to nature and history, just like my dad did for me.

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Hiking at Devils Lake, Wisconsin, was one of my favorite childhood adventures. Little did my dad know then, I would learn to rock climb there years later.

When I was about five years old, my mom and dad bought land, had a house built, and moved the family out to the country so that we could roam the fields and forests instead of the city sidewalks. There my brothers and I happily played on dirt piles, chased grasshoppers, camped in the backyard and picked vegetables in the garden.

Staking out the new homestead with my dad.
Staking out the new homestead with my dad.
My brothers and I (and cat) camping in the backyard.
My brothers and I (and Kitty Jean) camping in the new backyard.
Exploring the backyard on our new skis that Mom and Dad bought us.
Our backyard felt huge when we explored in on our new skis.

Several years ago, I found a book of nature quotes on my dad’s bookshelf that had been published years before my brothers and I were born. In it, my dad had circled a quote by famed naturalist Richard Jeffries. It summed up so well the gifts that my father had had given me over the years.

“If you wish your children to think deep thoughts, to know the holiest emotions, take them to the woods and hills, and give them the freedom of the meadows, the hills purify those who walk upon them.”

Dad, I miss you dearly. I will always think of you when I am in the mountains, meadows and forests. You will travel with me always.

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My dad always sought out new and exciting experiences for weekend family trips–including a wade in Wisconsin’s Hartman Creek.

A Litany of Remembrance

In the rising of the sun and in its going down,
we remember them.
In the blowing of the wind and in the chill of winter,
we remember them.
In the opening of buds and in the rebirth of spring,
we remember them.
In the blueness of the sky and in the warmth of summer,
we remember them.
In the rustling of leaves and in the beauty of autumn,
we remember them.
In the beginning of the year and when it ends,
we remember them.
When we are weary and in need of strength,
we remember them.
When we are lost and sick at heart,
we remember them.
When we have joys we yearn to share,
we remember them.
So long as we live, they too shall live, for they are now a part of us,
as we remember them.

-Poem by Rabbi Sylvan Kamens and Rabbi Jack Riemer

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My dad enjoying the great outdoors with his dogs as a youngster.

Slowing down time between stomaversaries

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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

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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.

 

Fibroid fun!

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Yesterday I had a serious case of deja vu while driving in for a surgery. I vividly remembered a morning four and a half years ago when my hubby and I pulled up to the hospital for my ostomy operation. I had been in a tenuous remission after a severe flare had hospitalized me for a couple of weeks. I was so relieved that nothing had gone wrong and that I was actually going to have the surgery while in a fairly healthy state to rid myself of an organ that had been ruining my life. I was so eager that I wanted to run into the hospital and jump on the operating table.

This time I was equally excited. Though I wasn’t anticipating giving an organ the boot, I was excited to rid myself of some pesky uterine fibroids that had been making my life very miserable. Just like with my ostomy operation, I was so happy when we pulled into the hospital and realized that nothing was going to get in the way of my surgery. Life happenings and a really busy work schedule over the past few months had made scheduling the surgery difficult. To top it off, two weeks ago I came down with a horrible respiratory bug and fever that also resulted in developing viral-induced asthma. There was a chance I was going to have to cancel, but I did everything I could to give my body a boost. I used sinus rinses and warm compresses, took Musinex and my asthma medications religiously. Most importantly, I rested and slept a ton. Three days before my surgery, my illness cleared up and I got the go-ahead from my doctor to proceed. Whew!

I am happy to be in pre-op and ready to rid myself of the fibroid mini-beasts likely lurking in my uterus.
I am happy to be in pre-op and ready to rid myself of the fibroid mini-beasts likely lurking in my uterus.

So what led up to such eagerness over this surgery? Last summer my periods started changing. They were becoming subtly more painful with light bleeding mid-cycle. By December, both these issues worsened exponentially. I had never experienced many menstrual cramps in the past, so I wasn’t exactly sure what “normal” ones were supposed to feel like. However, my gut feeling told me that the level of pain I was experiencing was unusual and that the heavy bleeding certainly warranted some investigating.

I saw my doctor in the beginning of the year and it was determined that fibroids were likely the cause of my issues. I knew I had some. One–a subserosal type that grows on the outside of the uterus– was seen during my ostomy surgery. That one and then another had showed up on a pelvic MRI that I had to investigate hip pain a couple of years ago. A follow-up ultrasound showed that the second fibroid was probably an intramural type which grows within the uterine wall. Back then, I didn’t worry about these as they weren’t causing any symptoms.

Now that I was experiencing worsening problems, I was scheduled for another ultrasound. This test showed that my older fibroids had probably been joined by a new buddy and that it was likely a submucosal type. These rarer fibroids are found on the lining of the uterus and can cause intense pain and bleeding. Yay! How lucky my uterus was to possibly have three types of fibroids. My body always likes to go big!

Unfortunately, I am not a good candidate for a full on hysterectomy due to my ostomy, possible adhesions and the complications that could be involved. That type of surgery would only be done on me as a last resort. Fortunately, there was an option to at least investigate  my uterine lining and–depending on what was found–try to remove and submucosal fibroids that were most likely causing the bulk of my issues. This procedure, called a hysteroscopic myomectomy, would be a minimally invasive and done under general anesthesia. A camera is inserted through the cervix and any offending fibroids or polyps in the uterine lining are removed.  If all went well, I would only have to miss a couple of days of work while healing. I decided to have the procedure done.

Of course I was nervous about some aspects of the surgery. One unlikely but possible complication was perforation of the uterine wall. If that happened and it was bad enough, there was a possibility of needing an emergency hysterectomy through my mid-line incision. I wondered what that would that mean for my ostomy. I have a wonderfully skilled, thorough and caring gynecologist that I definitely wanted to do the procedure. However, he didn’t do these surgeries at the same hospital that my colorectal surgeon works out of. I was told that if something went wrong and I needed an emergency hysterectomy, a general surgeon who was experienced with ostomies would join in the surgery. The thought of putting complete trust in another surgeon to work around my ostomy was difficult. I had to let go of those fears and hope for the best.

In the end, everything went perfectly with the procedure. Two submucosal fibroids were removed and sent to pathology. My doctor is optimistic that this will fix the problems I have been having. There were no issues related to my ostomy either. I emptied my pouch before heading to pre-op. My surgery took a little less than an hour and I spent a couple of hours in post-op recovery. When I woke up my ostomy pouch was still pretty much empty… probably due to the fact that I wasn’t allowed to eat or drink for eight hours beforehand. Though I knew complications were rare, it was such a relief to wake up in post-op and see my belly intact! My surgery was scheduled for a Friday so that I could recover over the weekend, and so far my post-surgical pain hasn’t been too bad. I may even feel up to going to watch my hubby run the Colfax Marathon in Denver tomorrow!

I am almost ready for discharge, but not before enjoying a hot cup of tea to go along with my dilaudid. I think I went through at least a dozen warm blankets during my time at the hospital. Can I please request this service for home?

As I was experiencing all that deja vu on the way to the hospital yesterday, I was excited for the pain relief this surgery would hopefully bring, but I was definitely scared too. Just like with my elective ostomy surgery, I wondered am I really in bad enough shape to warrant having this done?  With any surgery, even the more minor ones, there is an element of the unknown and also the vulnerability that comes with putting complete trust in a medical team. It can make it hard to take the leap… even when health issues are taking a toll on your quality of life. In this case, I was willing to take a chance to be free from misery. Here’s to hoping the surgery did the trick!

Birds and birthday cake

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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

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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 tough start to 2015

Published on by ostomyoutdoors9 Comments

Welcome to 2015 everyone! While in past years I might have celebrated with a big hike, this year I felt a strong yearning to stay at home and relax, so that is what I did. Also, this year I am trying a different approach to the New Year by not setting any big goals for the upcoming 365 days. In fact, I want to do less in 2015. The pace of life lately has felt far too overwhelming for me. I want to ease up and take each day as it comes, filling it with things I enjoy without focusing so much on accomplishing x, y or z.

Part of that plan has to do with a rough end to 2014. My Dad’s health took a turn for the worse in the autumn. It is still hard for me to grasp, as Doug and I went on a trip with my parents to Portland and the Oregon Coast in August and my Dad was doing well. We toured museums, took in the gorgeous oceanfront scenery, visited brew pubs and all seemed fine. However, within a month’s time things changed unexpectedly and his health spiraled downward. I flew out for a visit in the end of October and it was heartbreaking to see the illness take such a toll. My mom has been trying her best to care for him and his doctors are working hard to find a treatment that works. My brothers and I all live far away making it hard to help day-to-day. I wish we were closer to provide more support.

I don’t know what to expect going into the next 365 days, but do any of us really? I do know that finding happiness in the present moment, taking things day-by-day and leaning on others for support is a good way to live in general and has gotten me through other hard times. This seems like a good approach as I head into 2015.

Touring Portland with my parents in August.
Touring Portland with my parents in August.