My favorite products for dealing with ostomy waste in the backcountry

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

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

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

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

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

Doug waits out the rain under our cooking tarp.
Doug waits out the rain under our cooking tarp.
warming-up
It is very important to color-coordinate your mug and jacket while in the backcountry.

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

Our first backpacking trip of the summer was a three-day adventure in the Mt. Massive Wilderness in Colorado.
Let’s go that way! The summer of 2015 was filled with three amazing backpacking/ fly fishing trips in our home state of Colorado. Our first one was a was a three-day adventure in the Mt. Massive Wilderness.
Trip number two consisted of a four-day hike into the Willow Lakes area of the Gore Range.
Trip number two consisted of a four-day journey in the Willow Lakes area of the Gore Range.
We ended the season with a 9-day off-trail backpacking and fly fishing adventure in the Sangre de Cristo Wilderness in Colorado.
We ended the season with a nine-day mostly off-trail backpacking trip in the Sangre de Cristo Wilderness.

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

There is no place to drain a pouch on long rock climbs such as the First Flatiron, which Doug and I made an ascent of in June.
There is no place to drain a pouch on long rock climbs such as the First Flatiron in Boulder, CO, which Doug and I made an ascent of in June.
Swapping out a closed-end pouch on a climb up the FIrst Flatiron this summer was easy.
Fortunately, swapping out a closed-end pouch on a climb is easy– even while tied in with my harness buckled.

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

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

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

Hiking into the darkness to find a place to empty my pouch is not my favorite thing to do. I have since started swapping out closed-end pouches at night on wilderness trips so that I don't have to do this.
Hiking into the darkness to find a location to empty my pouch is not my favorite thing to do. I have since started swapping out closed-end pouches at night on wilderness trips so that I don’t have to do this.
It feels great to relax in my sleeping bag knowing I am not going to have to hike off into the dark woods to empty.
It feels great to relax in my sleeping bag knowing I am not going to have to hike off into the dark woods to empty.

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

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

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

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

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

I scramble up a steep gully with a heavy pack on a 9-day off-trail backpacking trip in the Sangre de Cristo Range, Colorado.
I scramble up a steep gully carrying a heavy pack on a nine-day off-trail backpacking trip in the Sangre de Cristo Wilderness, Colorado.
I didn't need the added weight of full used ostomy pouches in my backpack.
Food and supplies for such a long trip were heavy, and I didn’t need the additional weight of full used ostomy pouches in my backpack.

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

I can snap an OstoSolution Seal on my pouch at night and then pop it off later to empty the contents into a cathole (a six-inch deep hole dug in the ground.)
I can snap an OstoSolutions Seal on my full pouch at night and then pop it off later to empty the contents into a cathole (a six-inch deep hole dug in the ground.)
Doug and I descended the steep gully below the notch in this photo on day seven of the trip. It was essential to keep our packs as light as possible in such terrain.
Doug and I descended the steep gully below the notch in this photo on day seven of the Sangre de Cristo trip. Keeping our packs as light as possible was essential in such rugged terrain.

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

Yep
Stormy weather seemed to follow us on all of our trips this summer! Doug casts a few more times before we hastily return to camp.
Not another storm! Dealing with my ostomy in foul weather was an everyday occurrence on most of my trips this summer.
Yikes! Yet another storm! Dealing with my ostomy in foul weather was an everyday occurrence.
However, the clouds did part enough that I got some glorious backcountry lake swimming in.
However, the clouds did part occasionally, and I was able to get some glorious backcountry swims in. I do not have to make any special modifications to my ostomy system when swimming– it adheres just fine as is.

 

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

 

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How to select ostomy pouch styles for the outdoors

Last weekend I was reminded why I love using closed-end ostomy pouches on hikes and climbs. I was up on a long ridge between between Loveland Pass and Mt. Sniktau in Colorado. Though it was a gorgeous 75-degree day down in Denver, up at 13,000′ it was blustery and frigid. We left the house at 4:15 a.m. so that we would be done with our climb and back to the car before afternoon thunderstorms came in. I emptied my appliance before leaving the house, but by the time we reached the summit of Mt. Sniktau at around 9 a.m., my pouch was reaching its 1/3 full point. This is typically when I like to empty it.

Problem was, no ideal place to empty a pouch could be found on the entire ascent. The wind was howling and shelter was non-existent. On top of this, there were many feet of snow on the ground. The few places where there was exposed earth, it was frozen solid.  There was also no way to go off of the ridge to empty away from the trail. Precarious cornices sat 50 feet to the east of the route and dangerous avalanche slopes could be found 50 feet to the west. Emptying would have meant draining my pouch in the snow close to the area where people travel. Once the snow melted, fecal matter would have been left on top of the ground in a popular area. This was one of those instances when wearing a two-piece ostomy system and using closed-end pouches was almost a necessity.

The ridge between Loveland Pass and Mount Sniktau provided few places to empty a pouch.
The ridge between Loveland Pass and Mount Sniktau provided few places to empty a pouch.

If you are just finding out that you will be having an ostomy, or are recently out of surgery you may find the sheer number of ostomy appliance choices to be overwhelming. Closed-end, drainable, one-piece, two-piece — what do all these mean and which ones are best suited for various outdoor adventures? A lot of these choices come down to a matter of personal preference.  The goal of this post is to share some information on the basic types of appliances and explain how I utilize the various options on peaks and trails. I’d also like to hear what you’re using in the outdoors.

First, ostomy appliances come in one- or two-piece options. With a one-piece appliance, the wafer (also sometimes called a skin barrier) is permanently joined to the bag and cannot be separated–you’re literally stuck with this pouch until you remove the whole thing. The benefits of this style is that it has a low profile and sits very flat against the abdomen. The disadvantage is that because the wafer and bag cannot be separated, you lose the flexibility of being able to swap out different types of pouches unless you take the whole system off your belly. I used one-piece drainable pouches for the first five months after surgery, and on one of my very first major outdoor trips as an ostomate: a three-night early spring backpacking excursion. The ground was snow-covered and frozen on this adventure and I ended up trying to drain my pouch into plastic bags so that I could pack out my waste. It didn’t go well and I got output all over my pants and all over the outside of the bag I was trying to drain into. From that point on, I recognized that a two-piece system would be a better option for my outdoor trips.

In a one-piece ostomy system, the wafer is permanently attached to the pouch. Because of this, swapping out different pouch styles on the same wafer is impossible.
In a one-piece ostomy system, the wafer is permanently attached to the pouch. Because of this, swapping out different pouch styles on the same wafer is impossible. Pictured is a Coloplast SenSura X-Pro drainable one-piece appliance.

With a two-piece appliance, the wafer and pouch are separate and attach to each other with a plastic ring that snaps together much like Tupperware. Once the wafer is on your belly, different styles of pouches can be put on or taken off this ring. These systems are a little higher profile because of the plastic ring. However, there is much flexibility in using them because you can swap out different types of pouches depending on your activities. Due to this, a two-piece appliance is my clear choice for outdoor adventures. Also, I find that even with the plastic ring, two-piece ostomy systems are undetectable under my clothing.

There are also choices for the pouch portion of an ostomy appliance; they come in drainable or closed-end versions. Drainables have a tail that unfolds so that output can be emptied out of the bottom. Once the tail of the pouch is wiped clean, it rolls up and closes with either a clip or a Velcro strip until it needs to be emptied again. A person with an ostomy may use the same drainable pouch for multiple days.

Closed-end pouches have no tail. Once they fill up, they are designed to be thrown away full. Due to their simpler design, they cost less per bag than drainable pouches. However, most ileostomates don’t use them the majority of the time. Due to output coming directly out of the small intestine having higher water content, those with ileostomies usually have to empty their pouches six times a day or more. Even though closed-end pouches have a cheaper per-pouch cost, going through so many  in 24 hours makes them impractical and not cost-effective. Generally closed-end pouches are better suited for those with colostomies who may only have to empty a few times a day. That said, there are occasions when closed-end pouches are the perfect tool for those with ileostomies too.

With a two-piece system, the pouches can be separated from the wafer. On the right is a drainable pouch and on the left a closed-end one.
With a two-piece system, the pouches can be separated from the wafer and swapped out. On the left is a drainable pouch and on the right is a closed-end one. Pictured clockwise is a Convatec Sur-fit Natura drainable pouch with an Invisiclose tail, a closed-end pouch, and a Durahesive cut-to-fit wafer.

Drainable pouches are my preference most of the time, even on wilderness adventures, as long as I can find a good place to empty. Packing out full closed-end pouches can be heavy due to the high water content of ileostomy output. In fact, I once weighed the trash bag that contained a day’s worth of full closed-end pouches after an all-day climb and it came in at 3.5 pounds! Multiply that for trips that may be several days long and you can see why I use closed-end pouches only when necessary.

However, my hike on the ridge is an example of an ideal time to use a closed-end pouch. I also like using closed-end pouches in other places where it is impossible to empty: on cliff faces when climbing, on rocky peaks where it is impossible to dig a cathole, and on crowded urban trails. Though I haven’t been on a river trip with my ostomy yet, I can also see them being very useful in these situations when one cannot get far enough from a water source to empty. Also, it takes longer to dig a hole in the ground and properly drain my pouch when in the wilderness than to swap out a pouch. There have been a few times when I have been caught in storms and have decided to swap to a closed-end pouch instead of draining in order to minimize my exposure to lightning, high winds, cold rain or other dangerous elements.  Both drainable and closed-end options also come in smaller sizes if one wants a tinier pouch for some activities such as swimming.

It is also worth mentioning that there is one other style of two-piece ostomy appliances; they are called adhesive coupling systems. Instead of having a plastic Tupperware-like ring like traditional two-pieces, the wafer has a smooth plastic area and the pouch affixes to this with a sticky adhesive ring. The benefit of these is that, without a plastic ring, they are very flat on the belly. You can still swap out pouch styles by peeling off the old bag from the wafer and sticking on a new one. However, I find that adhesive coupling appliances don’t work well on my outdoor trips . When I peel off the full pouch, a little output inevitably gets on the place where I am supposed to affix a clean one. I then have to fully clean this in order to get the fresh pouch to stick. It ends up being too messy and hard to deal with in the wilderness where there is no water to clean up with. I find it much easier to use the traditional two-piece appliances with plastic rings. Even if a small bit of output gets on the ring, it still snaps together fine and is not messy at all.

In adhesive coupling two-piece systems, the wafers and pouches stick together with an sticky ring. They are low profile, but I find them messy to swap out when on outdoor trips.
In adhesive coupling two-piece systems, the wafers and pouches adhere together with an sticky ring. They are wonderfully low profile, but I find them messy to swap out when on outdoor trips. Pictured on the left is a Convatec Esteem Synergy adhesive coupling system and on the right is a Coloplast SenSura Flex wafer and pouch.

A downside of closed-end pouches is that they are a disposable item. I try to make the best environmental choices possible in my daily activities, so I do sometimes cringe when I throw away my bag of closed-end pouches after a climb knowing I have added more to the landfill than I would have if I would have stuck to a drainable that day. I try to remind myself that I do this for a medical reason and to deal with a basic life process of bodily waste removal. In other aspects of my life, I try my best to be gentle on the earth. I take reusable bags to the store, drive a fuel-efficient vehicle, use public transit, buy organic produce to protect wildlife from pesticides, use eco-cleaners to keep toxins out of our water supply, recycle every item possible, and make wise purchases. I hope that, in the grand scheme of things, the impact of the pouches that I throw away is small. I really do only try to use them when absolutely necessary.

When I was on Mount Sniktau on Sunday and decided draining wouldn’t be possible, I even began to wonder if I could find a good place to take off my full pouch and put an empty closed-end one on. It was so windy and there were people everywhere on the ridge. Once my pouch was 1/3 full, I couldn’t find a place to make the switch. I decided I would wait until later to deal with it. The good thing about my ostomy is that, unless I eat something that irritates my stomach and gives me pure liquid output, I have plenty of time to get around to emptying. It is rarely urgent.

On the summit of Sniktau. It was really cold and windy up there with very little shelter.
On the summit of Sniktau. It was really cold and windy up there with very little shelter.

As I made my way down the ridge from the summit, more and more people were coming up and I realized I couldn’t be fussy with my site selection for swapping. My pouch was now 1/2 full and I needed to take care of it soon. I ran ahead of Doug and his dad but also saw that some people were heading towards me.  I had about 5 minutes before they reached me so I tossed my pack to the side of the trail next to a small pile of rocks and tried to create a wind break. I then dug my supplies out and tied a small doggie poo bag to my pack strap so it wouldn’t blow away (this is what I would throw the full pouch into). Next I pulled down the front of my pant waistband, took my hernia prevention belt off, and quickly swapped out the full pouch for the clean one. Just as I had gotten my clothing back into place and was bagging up my trash, the two hikers approached me. I said hello and we talked for a second about the route. They clearly had no idea I had just dealt with my ostomy. To them, from a distance it probably looked like I was futzing around with my clothing or backpack. One can very discreetly manage their ostomy on the trail with a two-piece system and closed-end pouches.

With all the options out there, it pays to experiment with all the different brands and styles. Don’t feel like you have to use only one type of appliance. Have a dressy occasion where you definitely don’t want your appliance to show? Wear a sleek one-piece that week. Hanging out at the beach all day? Go for a mini drainable pouch that won’t hang out beyond the bottom of your suit. And if, like me, you find yourself needing to empty on a wind-swept ridge with sheer drop-offs on both sides — a two-piece with a closed-end pouch may be just the ticket. Take advantage of all the products out there to make life with your ostomy the best it can be.

This is the spot where I swapped out my pouch. By the time Doug caught up and snapped this photo, I was finished managing my ostomy and was changing my camera battery. However, from a distance swapping out a pouch doesn't look much different than this. It can be done very discreetly.
This is the spot along the trail where I switched out my pouch. By the time Doug caught up and snapped this photo, I was already finished managing my ostomy and was changing my camera battery. However, from a distance, swapping out a pouch doesn’t look much different than this. It can be done very discreetly.

Wilbur the stoma gets a biopsy

On Friday I was having some major déjà vu. However, it wasn’t all in my head. I actually was in a place that I had been before: the outpatient surgery pre-op area of the hospital where I had the colonoscopy that led to me being admitted for a 16-day stay for my final severe UC flare in the autumn of 2010. Except for the fact that I wasn’t feeling sick and hadn’t just been through the worst bowel prep of my life, it felt crazily familiar. The same nurse that had checked me in for that colonoscopy over two years ago checked me in on Friday. He even recognized me! That said, that is where the similarities of the visit ended. Unlike last time, I wasn’t in the outpatient surgery area for anything serious and didn’t even need an IV. I was simply there to have Wilbur, my stoma, biopsied.

In March I wrote about some ulcers on my stoma. After an appointment where I brought some stoma photos showing what had been going on, my IBD nurse prescribed a couple of months of Pentasa to try. Since then, we have been patiently waiting for some ulcers to show up so that they could be biopsied to better determine if I was actually dealing with active IBD. It seemed like every time I would get an ulcer, I couldn’t get in for a biopsy because it was the weekend, I was out-of-town, the ulcers would heal too quickly, or my doctor was not available.

Finally, the perfect chance presented itself. Last Thursday night, I was changing my appliance and spotted a big ulcer that had appeared during the day. The next morning I emailed my IBD nurse and she put things in motion to see if my doctor could squeeze me in for a biopsy. However, my doctor wasn’t working in the GI office that day; she was working at the hospital so I would have to see her there. Within a few hours, everything was set up and I drove from work to the hospital, checked in and was soon on a stretcher in a gown reminiscing about how sick I had been last time I was in that situation.

Once things were ready, I was wheeled down to the room where they do colonoscopies and there I saw my GI doctor for the first time since my UC flare 2.5 years ago. I think my GI doctor is one of the greatest, nicest physicians ever, and I was truly happy to see her again under much better health. We caught up for a bit and talked about the biopsy. She explained the procedure and said she would be using the same tool to remove tissue that she did for intestinal biopsies during routine colonoscopies.

I didn’t even have to take off my wafer. We simply snapped off my pouch, cleaned off the stoma a bit and were set to go. My doctor pinched off a half-dozen tissue samples from my stoma with the tool, including the area of the ulcer. We chatted as she worked and she laughed saying how strange it was to be talking to someone while doing an intestinal biopsy because usually the patients are under sedation. It is pretty handy that stomas have no nerve endings. My stoma bled a little when she plucked off the samples, but the whole procedure was pretty uneventful.

My stoma was completely cooperative and the whole process was mess free until the very end. When the nurse had removed my pouch, she sat it on the table. When we were done, she handed it to me to put back on. It was a fresh pouch from that morning, and I had emptied it before heading to the hospital so it was fairly clean, but there was a bit of output in it from the drive and checking in to pre-op. I had fully intended to put on a clean pouch on after the biopsy and had brought with me.  However, when the nurse handed me the  one we had removed I thought Oh… maybe I can just re-use this since it is fairly clean. Big mistake. Trying to put on the half-full pouch while in a reclined position didn’t go so well and I ended up spilling a small amount of output on my belly. It was a little embarrassing, but the doctor and nurses helped me clean up and were so nice about it that it seemed like no big deal at all. I tossed the old pouch, put on a totally clean one and was good to go.

In the days since the biopsy, Wilbur has started to look like he was attacked by a vicious woodpecker. There are small, circular, ulcer-like depressions in every spot where tissue samples were removed. Though the sores are scary to look at, they should heal in a couple of weeks.

On Tuesday I got the results of the biopsy. It showed non-specific inflammation, but no signs of Crohn’s disease or ischemia (lack of blood flow to tissue). We will keep an eye on things for any changes, but the doctor said that such inflammation could be caused by something as basic as mild surface irritation from my pouch.

It is a relief to know that these ulcers are likely harmless and it feels great to have this and so many other concerns resolved as I head into summer. My shoulder avascular necrosis is feeling great with physical therapy, my hip pain appears to be caused by something pretty benign, and my recent Achilles tendon heel tweak hasn’t been hurting when doing my Rainier training hikes. It definitely feels like the dark cloud that has been hovering over me all winter is finally dissipating. I am really hoping that the sunshine sticks around for a while!

So honored!

It always feels good to get recognized for something, but it is extra special when an award comes from a peer. These folks know the amazing amount of work and passion that can go into a project because they  devote their time and energy to the similar things. About a month ago, fellow blogger Joyce Lameire nominated me for a Versatile Blogger Award. I am incredibly honored that she thought of me. Joyce has both ulcerative colitis and ankylosing spondylitis (AS). Joyce’s blog, ankysponwhat.com features posts about treatments, managing pain and AS news. Lately Joyce has been writing a series of posts that delve into her history with the disease. For those who don’t know, ankylosing spondylitis is often associated with UC. Though I don’t have AS, I have been learning a lot about the disease through her site and would highly recommend checking it out.

In order to accept a Versatile Blogger Award, the following rules must be followed:

  • Display the award certificate on your website.
  • Announce your win with a post and link to whoever presented you with the award.
  • Present 15 awards to deserving bloggers.
  • Drop them a comment to tip them off after you have linked them in the post.
  • Post 7 interesting things about yourself.

It should be no surprise that most of the blogs I follow are IBD-related. There are so many blogs that I absolutely love but I won’t be able to include them all (the list would go on for pages). Here are are 15 of my favorites and the reasons I find them so special.

  • Full Frontal Ostomy Charis, long before we both had blogs, was the very first person that I reached out to online when I was facing ostomy surgery. She is a positive role model and I love her blog and all she does to spread ostomy and IBD awareness.
  • Blood Poop and Tears This is one of the very first blogs I read when I had IBD and then surgery. I love Jackie’s honest account of her life with IBD.
  • Girls with Guts This website and blog is put together by Charis and Jackie (who author the two blogs above). One of the site’s many features are stories of women who have strongly faced the challenges of IBD. Girls with Guts is a huge source of inspiration for me.
  • Inflamed and Untamed Sarah so often puts the exact things I am feeling into words. She does an amazing job of describing the emotional aspects of having IBD and many times I am brought to tears by her writing because I can relate to it so well.
  • Rollin with Outta Colon Cary is an avid cyclist with an ostomy and his blog posts are an artful blend of thoughts on biking, music, photography and the realities of living with an ostomy and the pain of chronic illness. Cary’s posts are full of depth and insight and really get me thinking.
  • Living Bigger with a Colostomy Paul is a fellow outdoor adventurer and I’m inspired by reading about all the things he does with his ostomy. His life is proof that an ostomy does not have to stop a person from doing the things they love.
  • Run Stronger Everyday Even though my running plans have been sidelined due to hip woes, I love reading Abby’s blog. She has been through ostomy surgery and now has a J-pouch. I am not sure when I will be able to return to running (definitely not before my Rainier climb since I can’t risk getting injured), but her blog helps keep me motivated for the day I once again lace up my shoes for a jog.
  • Living Life and Lovin’ It Megan is a newcomer to the ostomy blogging community. I love how she writes about her ostomy experiences in some posts and then things as diverse as chickens and pitcher plants in others. Life is a beautiful mix of so many things and her blog celebrates that.
  • Amazing Adventures- Ostomy Included I only recently discovered this ostomy-and IBD-related blog and am already hooked. Just reading the author’s story reminded me so much of my own—right down to the post-surgery incision complications that I frustratingly faced after surgery. I love this blogger’s adventurous spirit and thoughtful writing and can’t wait for future posts.
  • Gutless Cyclist The author of this blog has also had some health setbacks recently. Despite this, he stays positive and works hard to get back on his bike. Reading his posts fills me with inspiration.
  • Theflowrylife This blog was only started in November 2012, but is already one of my favorites. I love the author’s focus on mindfulness and enjoying the present moment.
  • Love for Mutant Guts It has been great to see Alyssa’s confidence as an IBD health activist grow through her blog. She always has a kind and encouraging word to say too.
  • A Guy with Crohn’s Jeffrey does a great job of spreading IBD awareness. I enjoy reading his posts on a wide variety of topics including gluten-free cooking. To top it off, Jeffrey recently took part in the WEGO Health Health Activist Writer’s Month Challenge and managed to write a post a day for 30 days. I sometimes have trouble writing a post every couple of weeks, so that is a major accomplishment!
  • Intense intestines When I first stumbled upon Brian’s blog I couldn’t believe it. Here was another outdoor-loving person who had gone through ostomy surgery one day after I had. The organization Brian started, The Intense Intestines Foundation, has grown to become one of the most incredible resources for those with IBD.
  • Squirt’s blog Donna is a fellow nature-loving ostomate with an adventurous spirit and that shines through in her blog. She does so much to spread ostomy awareness. I am pretty sure if Donna lived closer, we would be meeting up to explore forests, streams and fields on a regular basis.

Now for the seven interesting  tidbits about my life:

  • I have way too many hobbies. As if the plethora of outdoor sports I enjoy aren’t enough, I love drawing, painting, printmaking, journaling, sewing, tying fishing flies, storytelling, writing, drumming and playing the guitar. Whew! The upside–I can’t remember a time that I was ever really bored.
Drum circle fun.
Playing my djembe.
  • I can do an awesome squirrel voice. This comes in handy for the above-mentioned storytelling hobby and the many puppet shows I conduct for kids as a park naturalist.

    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters.
    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters. (Oh, and I also hand-sewed these three puppets.)
  • Weather fascinates me. Ever since I spotted a twister that came within ½ mile of my house as a child, I have been interested in weather. I have the National Weather Service radar bookmarked on my computer and could watch clouds all day. I was bummed that all my hospital room windows faced east when I was stuck there during my UC and surgery recovery. It drove me crazy to not be able to see the weather coming in from the west.
  • Social media wears me out. Though I enjoy public speaking and teaching, I am a total introvert at heart. I am the person at parties who you see having an in-depth conversation with someone in the corner instead of mingling. In the same way, I love interacting with people one and one through blog comments and emails. However, I definitely fall short in the realm of social media. The pace of Facebook and Twitter is crazy and by the time I process all the information and think of what I want to say, posts are already dead and buried. And I find writing within the 140 character limit of Twitter nearly impossible!
  • I drive a pink scooter. In an effort to keep my carbon footprint as small as possible, I make my 28-mile round-trip commute on my scooter when the weather cooperates (my bike gets 90-95 mpg). With my pink helmet and blond ponytail, I must look like Barbie going down the street because I often get waved to by little girls.
Heading to work on my scooter.
Heading to work on my scooter.
  • I love gummy candy. I try to eat healthy, but I have weakness for gummy bears, octopi, worms or whatever crazy-shaped creations I can find in the candy aisle.
  • I was a really creative kid. When I was a child, my parents set up art studios in the basement for my brothers and I, and stocked them with markers, paints, papers and all sorts of materials. I would spend hours down there drawing and creating art projects. I also used to develop my very own book order forms for my parents to fill out. Once they marked which titles they wanted, I would make little books and write a tale within the pages so that I could fill their order. My brothers and I also used to type up scripts and song sheets for shows and then perform them for our family.
Sitting in my homemade cardboard sleigh during a one of our Christmas productions.
Sitting in the homemade cardboard sleigh during act one of a Christmas production.
Act two involved some singing complete with a microphone. Now if only I actually could have carried a tune!
Act two involved singing in an elf costume (with a cool microphone)! Now if only I could have actually carried a tune.

Back to the GI doctor’s office

Monday I found myself in a place that I hadn’t been to for a very long time: my GI doctor’s office. After having permanent ileostomy surgery for my UC, I wasn’t sure if I would ever need to be seen there again. However, for the past ten months, I have had canker sore-like ulcers show up on my stoma off and on in different places. I actually noticed the very first of these ulcers while changing my appliance on a backpacking trip last June. I remember calling for Doug through the woods so he could come snap a photo of it. I think he thought I was being cornered by a bear! (joking)

That ulcer was rather deep, and after showing a photo of it to my surgeon, he thought it might be trauma-related and caused by a nick in my stoma. It healed up in a few weeks, and I thought that was that. However, in the autumn I got a couple more ulcers, and since that time, I have had more of them show up and at more frequent intervals. In fact, I have a new one today. The ulcers heal quickly (sometimes too quickly– it is hard to time an appointment with my doctor when they are actually there) and don’t seem to cause any problems. Because the ulcers are a recurring issue, I shared more photos of them with my surgeon and he suggested I have them further investigated at my GI doctor’s office.

I have an awesome GI doctor, but for much of my life with ulcerative colitis, I worked with an equally amazing IBD nurse practitioner. When you have chronic conditions and end up seeing your doctors and nurses again and again, you can really develop a strong and trusting bond with them. My nurse practitioner is a very caring individual and she has worked with me during my worst UC moments. I hadn’t seen her since I was extremely ill and lying in a hospital bed during my final severe UC flare two and a half years ago. It was great seeing her again under much better health! Of course, last week’s ulcers had conveniently healed just in time for the appointment, so I once again had to rely on photos of the ulcers to explain what was going on. Thank goodness Doug is a stoma portrait photographer extraordinaire and we have been documenting the ulcer activity pictorially for months.

After looking at the photos, my nurse felt that the ulcers could be a sign of active IBD. She didn’t call it Crohn’s disease, but said that the ulcers are likely caused by the same inflammation process involved in IBD in general. She talked about how many different genetic factors are showing up in research related to IBD. What is thought of as Crohn’s or ulcerative colitis could actually be a group of different diseases which makes things hard to pinpoint in some cases. (This is my recollection of what she said anyway… I am not the best at explaining medical stuff from memory.) Regardless of the name, the suggested treatment for me was the same: a low dose of Pentasa to see if it helped resolve the ulcers. If the drug does resolve the ulcers, it would be a sign that I am dealing with IBD. If  the ulcers would actually cooperate and show up when I am scheduled for an appointment, I could also get them biopsied to provide a more definitive diagnosis. There is also a possibility that the ulcers could be caused by a virus, but that is less likely due to the recurring nature and how long I have been experiencing them. All in all though, this is a really minor thing. The ulcers seem confined to just my stoma, no other symptoms come with them, and I feel great. My inflammatory markers were fine as well. My nurse said stoma ulcers do happen for many people without progressing up the intestines. That was great news to hear.

When I was sitting in the pharmacy waiting to have the prescription filled, I found myself reflecting on the possibility that my disease was returning– even if only mildly. The weird thing was– I was not worried about it at all. I always thought that finding out my IBD might be back would be terrible news. I would have expected to be scared, disappointed or something along those lines. However, now that I was actually facing that possibility, all I felt was a sense of calm. For someone who has been plagued by anxiety lately, this new found feeling of peace was refreshing.

I didn't expect to read "for inflammatory bowel disease" on a medication label again!
I didn’t expect to read “for inflammatory bowel disease” on a medication label again.

I really can’t put my finger on the one thing that has led to this new outlook. Be it bones or intestines, I am discovering that I am far less worried about my medical issues lately– so much so that I was able to stop taking anti-anxiety meds over a month ago. I went to see a counselor and also went to some anxiety management group sessions which have helped me look at things in a new way. My mindfulness meditation practice has been important in helping me focus on the present too. The positive thoughts and prayers sent by family and friends have also been paramount. I have also been more in touch with my spiritual side which has brought peace.

Another big source of comfort is knowing that I have been blessed with some of the most incredibly kind and skilled doctors and nurses on the planet. Not a day goes by when I don’t think about how grateful I am that everything somehow came together to have each of these individuals on my healthcare team. I know they truly care about my well-being. I can relax knowing that if things should get worse with any of my health conditions, I am in really good hands.

Overall, if I had to sum up the reason I am feeling so good about things lately in one word it would be this: trust.

I trust that I am strong enough to get through anything. I trust that my family and friends will be there to lean on. I trust that my medical team will do their absolute best to take good care of me. I trust that I will always be able to help others by sharing my experiences. And I trust that whatever path I find myself on, I will make it the best journey possible.

Mt. Rainier next summer!

I have a brand new goal to work toward for next summer: a climb of Mt. Rainier (14,411 feet) in Washington’s Cascade Range. Ever since Doug and I backpacked on the lower forested flanks of Mt. Rainier on the Wonderland Trail when we were in college, I have wanted to try the peak. Doug and I had talked of doing it a couple years ago with his Dad, but my illness and surgery delayed those plans. I am ready to dust off this dream, and the three of us will finally give it a go.

A painting of Rainier that I did in 2003. Can’t wait for my adventure there next summer! Copyright 2003 Heidi Skiba.

Though Doug and I rock climb a lot, we do not have experience on peaks with large glaciers (and Rainier is the most heavily glaciated mountain in the Lower 48). We know it would be too dangerous to try Rainier on our own. Therefore, we will be doing the ascent with a guide service, International Mountain Guides (IMG).  This company leads mountaineering trips all over the world and has some of the best guides in the business.

As it turns out, one of the owners of IMG, Phil Ershler, has Crohn’s disease. He and his wife, Susan Ershler, wrote the book Together on Top of the World. The book describes Phil’s challenges with Crohn’s disease and colon cancer and tells the story of the couple’s journey to climb the highest peak on each of the seven continents despite these odds. I went to see Phil and Susan speak in-person in Boulder shortly after they released their book in 2007. This was roughly a year after I had been officially diagnosed with ulcerative colitis, and  I was scared  of what my recent diagnosis might mean to my outdoor adventure-filled life. Their words gave me much hope. I read their amazing book shortly after hearing them speak and was further inspired.

As we started to research our climb with IMG, I emailed Phil to find out if he felt that any of the Rainier trips were feasible with my ostomy. The last thing I wanted to do was get excited about a trip only to find out I might be denied due to my medical condition. I was candid about the extra challenges I now face after ileostomy surgery, but Phil was very encouraging and suggested the route he thought might work out the best. He also warned me that Rainier trips fill very quickly and to get our application in as soon as the 2013 dates were published.

He wasn’t kidding. We knew the trip dates would be published while we were on our climbing road trip, so we were driving into town from our camp every other day to find a place to connect to the internet and check. Turns out the dates were published on the one day we didn’t get to town. By the time we checked the following day, there was only one trip left with three openings during the month-long window of time we wanted.  Thankfully we secured our spots!

Before being officially accepted on the climb, the guide service emailed me with more specifics on the route so that I knew what I was likely to face on the mountain. Among several challenges, the ascent to high camp involves carrying a 40-pound pack for five miles with 5,000 feet of elevation gain.  The final day of the route includes a five- to six-hour ascent to the summit and then a descent all the way to the trailhead. This means a round-trip travel time for that day of up to 16 hours. I had been very open on my application paperwork about my ostomy and the challenges it can present (such as dehydration and my limitations of carrying super heavy loads). The staff  wanted to make sure the conditions of the climb seemed doable to me. IMG was super accommodating and helpful about it all and explained some steps I could take to help meet my hydration and pack-weight needs within the confines of the trip. They were even set up to deal with my gluten-free diet.

After carrying a 40- to 55-pound backpack on several trips since surgery, I was sure that I could handle the load on this climb–especially with time for additional training. Just as I carried extra water on some long all-day climbs this summer, so I would on Rainier. I already had a lot of experience swapping out my ostomy pouches in frigid temperatures and with a harness on. I had no concerns about that part of things. I was sure the climb was within my abilities, but I also had to get signed forms from my regular doctor and surgeon stating that they approved of my participation. After outlining the specifics of the trip to them, neither had any reservations about me taking part in the climb. I was set to go!

It is just starting to settle in that I am actually going to be attempting Rainier. I can’t describe the excitement I am feeling for this adventure. The route that was recommended to me is the easiest one that IMG uses on Rainier. It is a three-and-a-half day trip starting at a beautiful place called Paradise (5,400 feet). We will carry our loads to Camp Muir (10,080 feet) and then move on to a higher camp at the Ingraham Glacier the following day. On the final day of the trip, we will attempt the summit (conditions permitting) and descend to the trailhead. Pack weights are less on this route than most others because some group gear is kept at the already-established camps.

I have to admit that I was really drawn to do one of the longer or more remote Rainier trips described on IMG’s site like the Emmons Glacier climb or even a six-day seminar that includes a lot of technical skill instruction plus an ascent of the peak. In my mind, I am still the woman who has gone on several 30-day backpacking and mountaineering trips into the remote wilderness carrying 75 pounds of gear on my back, but I have to acknowledge that my body has changed since then. I am still learning what it is capable of after surgery and this trip will be a perfect test. I am fully confident that it will be strong enough for this route, and after that, who knows? Maybe I will want to do a longer or more difficult trip on Rainier or another peak down the line. Right now, I am ecstatic to have the chance to take part in this climb.

Let the training begin!

My Week at Camp Oasis

An hour into my drive home I watched the red-orange landscape around Gypsum, Colorado, transition into the craggy grey of Vail Valley. My mind shifted from busy camp schedules and activities to inward contemplation.

I had just spent the last eight days volunteering as a cabin counselor at the Crohn’s and Colitis Foundation of America’s Camp Oasis, and I had much to process. The hours of uninterrupted thinking time that now lay before me was exactly what I was craving. I turned up the tunes and let my mind go back to all the moments of camp.

My camp experience began with a full day of orientation before the kids arrived. We learned the policies of the camp, information about all the activities and the schedule, and how to help campers with common issues such as homesickness. I had been a little nervous at home, but felt much more prepared after these sessions. I also had a chance to get to know all the other volunteers who were helping out in a variety of roles ranging from cabin counselors to medical staff to kitchen help.

One unexpected thing for me at camp was that I seemed to be the only volunteer cabin counselor who had IBD (as far as I could tell through conversations anyway). Many of my friends who help out at Camp Oasis at some of the locations out east have talked about shared IBD experiences among the counselors. The camp in Colorado is only two years old. I would imagine that in years ahead as campers get to be the age where they can volunteer as counselors, there will be more cabin volunteers who have lived with Crohn’s and Ulcerative Colitis. Whether or not they had IBD, all the volunteers I worked with were absolutely amazing. They gave their time because they wanted to help chronically ill children have the time of their lives at camp, and they did so with enthusiasm and devotion.

Roundup River Ranch, the camp at which the Colorado Camp Oasis is hosted, is a beautiful facility with some of the most energetic, capable and dedicated staff I have had the pleasure of working with. The medical personnel were incredibly caring and the kitchen staff worked tirelessly delicious meals that were enjoyed by all the campers, even those with food intolerances and allergies. The staff camp counselors put vast amounts of time, passion and energy into making sure the kids had the best experience possible. The cookhouse, cabins and medical facility were top-notch. The beds even had Tempur-Pedic mattresses which had been donated.

A view of Roundup River Ranch including the cookhouse and medical building.

I even had a chance to experience the excellent medical facility, called the Depot, at camp myself. On the second day, I came down with a low-grade fever, horrible sore throat and cough. The doctors and nurses felt I just had a cold virus of some sort, but put me up in a private room set aside for ill staff for 24 hours. I was incredibly bummed to miss a day with the campers, but knew I needed the rest. I was reunited with my group and, though still not back to 100%, felt much more energetic for the rest of the week.

I also went over to the medical facility to change my ostomy appliance. I was a little concerned about monopolizing the bathroom in my cabin quarters, so I talked to the nurses and they recommend I come over to the Depot to change. This was nice, since I am not the fastest at my appliance swaps. The skin around my stoma is in beautiful condition, but achieving this takes some time for me. Per recommendations from my WOCN and the home health nurse I worked with after surgery, I  have a meticulous routine that includes a small piece of Duoderm, an Eakin Cohesive Seal, and even a little stoma paste. I can sometimes spend 30 minutes changing out appliances with these steps, especially if my stoma starts spewing. I greatly appreciated having a private place to carry out my skin care routine at camp.

I was a counselor in a cabin of eight 12- and 13-year-old boys. The camp had ended up with a shortage of male staff and volunteers, so each of the boys’ cabins had two female counselors and four male counselors. Most of the camp counselor staff at this camp are paid and there for the whole summer, and volunteers augment the paid staff. Of the six counselors in my cabin, two of us were volunteers. This was nice because there was much expertise, and I never felt like I was left to handle a situation that I wasn’t prepared for. There was always a regular staff person close by to help out.

I got up bright and early one morning to try out the zip-line during a special session set aside for volunteers. It was high! As I stepped off, I was reminded of how the campers were willing to try so many new and challenging activities.

The boys in the cabin were such a great group of kids. Though I struggled a bit with conversation at times (not knowing much about sports teams and being inept at quoting movies–both popular with this age group), I loved working with the kids and cheering them on at all their activities and playing silly cabin games like Mafia and Ninja. Days were filled with all sorts of fun activities like archery, arts and crafts, climbing and zip-lining, horseback riding, boating and fishing. A highlight of the week for me was the talent show. The kids came up with magnificent acts, and I was blown away with how much the children encouraged and cheered each other on while they were watching the performances. It was absolutely beautiful.

The camp’s zip-line.

One of my favorite parts of camp was quietly listening to the children share stories with each other. One day I heard three boys at lunch encouraging a camper who worried that he might not be able to have a career in the military because he had Crohn’s. The other boys were telling him he would be able to do anything he set his mind to. I also heard the children talking to each other about surgeries and medications, belly noises and going to the bathroom a lot. Another counselor in my cabin saw some of the kids showing each other their surgery scars. This is the magic of Camp Oasis; the children are given the opportunity to take part in a fun camp experience while building friendships and bonding with others who truly understand what it is like to have the same chronic illness.

Every night right before bed, each cabin took part in an activity called cabin chat which provided a time to talk and reflect as a small group. The cabin counselors posed several thought-provoking questions for the campers to answer in a quiet and safe atmosphere. These questions were never directly related to illness, but many of the campers answered with things that tied into having Crohn’s or Colitis. Counselors also had the opportunity to answer the questions. During one cabin chat a few days into the session, a question fit well with my experience of having UC, so I shared that I had the disease. I really have no way of knowing if it made a difference to the children. However, I had many conversations about camping, climbing, skiing and canoeing with the youngsters (which were popular topics with several of the boys). Perhaps in some small way the children realized that having ulcerative colitis has not stopped me from leading a full life.

On the final evening of camp, the children made a “web of gratitude” where they came up and told everyone the things that they were thankful for by adding a strand of yarn to a circular frame. Listening to the things that the children shared brought tears to my eyes. It was clear how much this camp experience had meant to them, and I was so happy that I had been part of it.

My three-hour drive home was not nearly enough time to process all the things I had learned at camp… all the inspiration I was feeling… and the amazing memories that will be part of me forever. When I got home I talked to Doug about it for so long that I nearly lost my voice. I don’t know when my work and vacation schedules will allow me to volunteer again, but someday I hope to head back to camp. Volunteering at Camp Oasis was one of the most valuable things I have done. I would highly recommend it to anyone.