On Heavy Backpacks and Hernia Belts

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.

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.
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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.

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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.

OstoSolutions Ostomy Pouch Disposal Seals: a helpful tool for dealing with ostomy waste outdoors

A couple of summers ago I climbed Devil’s Tower in Wyoming on a 98 degree day. As there was no place to empty up on the rock, I used closed-end pouches and carried the full ones out in my backpack.  As I was rappelling the route upon completion of the climb, I noticed that I could smell ostomy output through my backpack. Oh no! My used ostomy pouches must be leaking out of the plastic bags I put them in, I thought. When I got to the base of the tower,  I opened the lid of my pack with trepidation. However, all was well with my ostomy pouches. They were still nestled securely in three layers of plastic– the final one being an OPSAK odor-proof bag. The heat had simply made things very smelly and no amount of bagging seemed to help. If odor-proof bags couldn’t conceal the smell, I figured nothing could. I accepted that an odoriferous backpack would be my new reality on hot-weather outdoor adventures.

Fortunately, thanks to a new product called OstoSolutions Ostomy Pouch Disposal Seals, my backpack will be smelling a lot fresher. Last fall, a representative from the company contacted me to see if I would give the OstoSolution Seals a try and provide feedback. Though I don’t get paid to promote products, I enjoy trying samples out and letting readers know about supplies that may make managing their ostomy easier. After learning about the OstoSolutions Seals, I was excited to test them out because it seemed like there were many situations where they could be useful for outdoor adventures.

An OstoSolutions Ostomy Pouch Disposal Seal is a lid for the opening of a two-piece ostomy pouch. It snaps on and keeps any odor or output from coming out when a used pouch is thrown away. To insure a tight fit, Ostosolutions Seals are pouch-specific and are available for a wide variety of brands and sizes.

I have an ileostomy and empty my pouch four to eight times a day. Because of this, I usually use drainable pouches and keep one on for three to four days. If I were to use disposable closed-end pouches everyday, I would go through far too many and it would be expensive. However, when I am in places where it is difficult to empty a pouch, for instance on a cliff face or in deep snow, I do use closed-end pouches and pack them out when full. These are the times when I could see the OstoSolutions Seals being practical for me.

The first opportunity I had to try out the seals was while doing volunteer flood-relief work in my home state of Colorado. I was scheduled to help dig out a home in a heavily impacted area and knew there would be no restrooms nearby. I wasn’t comfortable digging a hole to empty and it was difficult to find privacy with 20 other volunteers working at the site. My only option for managing my ostomy waste was to use a closed-end pouch and pack it out. This provided the perfect opportunity to test out one of the OstoSolutions Seals.

After shoveling mud all morning and taking a lunch break, my pouch was finally getting full. I wandered a short distance from the house, ducked behind a tree, discreetly removed my pouch and popped on a fresh one. Then I snapped an OstoSolutions Ostomy Pouch Disposal Seal onto the coupling ring of the full pouch. It was as easy as putting a lid on a food container and completely secure. I did throw the full pouch in Ziplock out of habit, but I wouldn’t have had to. With the seal securely on the pouch, there was absolutely no chance of stool leaking out.

Moving countless buckets of mud as a flood relief volunteer.
We moved countless buckets of mud as flood relief volunteers.
With no restrooms or places to empty my pouch at the site, OstoSolutions made dealing with my waste easy.
With no restrooms or places to empty my pouch at the site, OstoSolutions Seals made dealing with my ostomy waste easy.
OstoSolution Seals simply snap on the pouch's coupling ring for a leak and odor proof seal.
OstoSolutions Seals easily snap on the pouch’s coupling ring for a leak- and odor-proof seal.

I worked for the remainder of the afternoon and used one more seal on a full pouch before finishing up for the day. My husband and I had carpooled to the site with two strangers in their Volkswagen Golf. As we made the hour-long trip back to Boulder, it was comforting to know that no odors would be wafting out of my pack and into the airspace of the small car.

The second test was on a November hike to the top of 14,440 ft. Mt. Elbert in Colorado. I knew it was going to be very cold and windy on the adventure and I hoped that using the OstoSolutions Seals would make swapping out my full pouches faster. I have Raynaud’s disease and when my fingers are exposed to cold temperatures, my circulation becomes impaired. Without blood, they turn waxy white and become prone to frostbite very quickly.

Just 500 feet below the summit, I realized my pouch was getting full. My hiking companions kept going while I dashed behind a boulder to swap out pouches. I quickly lowered my waistband, took off the full pouch and put on a fresh one. After that I snapped an Ostosolutions Seal on the used pouch and tossed it loosely into a stuff sack in my pack.  After a quick dollop of hand sanitizer, my gloves were quickly back on my hands and I was catching up to my friends on the trail. Not having to take the time to close multiple Ziplock bags in the freezing wind saved my fingers. Using OstoSolutions will make swapping out pouches on cold-weather adventures so much easier!

With OstoSolutions Seals, there is not need to double-bag. I simply put the full, closed up pouch in a plastic lined stuff sack.
With OstoSolutions Seals, there is no need to double-bag. I simply put the full, closed up pouch in a plastic-lined stuff sack.
On top of 14,440 ft Mt. Elbert-- the highest peak in Colorado.
On top of 14,440 ft. Mt. Elbert– the highest peak in Colorado.

Though I didn’t get to test out the seals on a hot day like the one on my Devil’s Tower climb, I know that they would be a great tool in these types of conditions. When one disposes of a full pouch in a regular plastic bag, such as a Ziplock, the odors are not contained–especially on warm days. To remedy this I would put all my Ziplocks full of ostomy pouches on a given trip into one large reusable OPSAK brand odor-proof bag. This would work fairly well, but on hot days the OPSAKS never fully contained the odor. Also, the OPSAK bags are expensive, and they would wear out after a while and need to be replaced. With the OstoSolutions Seals, I do not have to worry about using odor-proof bags. Ostomy pouches are already made out of odor-proof materials. By covering the opening with an OstoSolutions Seal, no smells can escape.

On some adventures where it is easy to dig holes in the dirt to empty my pouch into, I use drainable pouches instead of packing out my waste in closed-end ones. However, I may still have to pack out used pouches when I change my whole appliance on multi-day backcountry trips. An OstoSolutions Seal could also be used to snap onto a used drainable pouch awaiting disposal.

The only disadvantage of the seals for me was knowing that I was adding another piece of plastic to the waste stream each time I used one. However, this impact was counteracted by having to toss away far fewer Ziplock bags. The OstoSolutions are also made out of some recycled plastic. I know having an ostomy does result in throwing away a lot of bags, wafers, packaging and other supplies that only have a one-time use. However, these things are necessary for my quality of life without a colon. I choose to focus on all the other important ways I can reduce, reuse and recycle. For instance, I make my own lunches and carry them in re-usable plastic containers, I don’t buy bottled water, I use cloth grocery bags and I recycle every possible thing I can.

Overall, I am very happy with the OstoSolutions Ostomy Pouch Disposal Seals and plan to carry them on my future adventures. With them, used pouch disposal can be fast, discreet and odor-proof.

Check out the OstoSolutions website for more information and special offers.

Another review of the OstoSolutions Seals can be found at http://www.livingbiggerwithcolostomy.com/2014/02/ostosolutions-ostomy-pouch-disposal-seal.html.

Patience and progress

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

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

Happily leaving the starting line before the wind and snow picked up.
Happily leaving the starting line before the worst of the storm blew in.
I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets!
I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets at 50 meters away!

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

A little post-race climbing at the pool.
A little post-race climbing at the pool.
Powder day at Copper Mountain!
Powder day at Copper Mountain!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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