Last month, I wrote about a climbing road trip that Doug and I took to Idaho and Oregon. We finally completed a video highlighting the vacation. It is a long film at 30 minutes, but there was a lot to cover on this 17-day adventure.
Getting out and traveling with your ostomy provides some very significant confidence-building opportunities. You have to change and empty your appliance in unfamiliar surroundings and you must learn how to adapt to having an ostomy in unique situations. Unknowns abound with each bend in the road and each new town on the map. Dealing with each of these new situations stretches your comfort zone and leads to growth and tenacity. So, if you are just recovering from surgery, plan a trip if you can — even if it is just a weekend getaway. If you have had your surgery for a while, get out on a longer excursion and try something new.
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.
When Doug and I became a couple during college, our very first group purchase was a spatula. We were heading out on a camping trip and realized we would have no way to flip the pancakes we were making for breakfast the next day. We stopped at a grocery store en route to the park and pooled our funds to acquire the best turner that $1.99 could buy.
Our next group purchase was a bit more substantial — a slightly beat-up 1985 Toyota 4×4 truck. The lakes of northern Wisconsin, wilderness of Michigan’s Upper Peninsula, and craggy climbing areas outside of Madison were calling us, yet we had no reliable way of getting there. The truck became our key to adventure. Every weekend we would load it up and head out to the wilds. During a couple of college summers we hit the open road of the western United States for months on end — living out of the back of the pickup and stopping at every climbing area we could find along the way. Those weeks of roaming freely and opening the map each day to decide where we wanted to go next provided some of our most beloved memories together.
One of the things I longed to do most after surgery was to go on a climbing road trip again. I wanted to remember what it felt like to climb all day, cook up dinner at camp, talk about the day’s adventures over a crackling campfire, and then get up to do it all again the next day. Last summer, I wasn’t quite strong enough to rock climb. After training and gaining strength over the winter, my body finally felt ready to spend day after day doing climbing routes. In the beginning of September, Doug and I set out on a 17-day adventure that would include a week of climbing at City of Rocks in Idaho and several days of climbing at Smith Rock in Oregon. While in the Northwest, we also planned to spend time with some good friends who lived in Bend, as well as meet up with my parents for some sightseeing.
As we were traveling and climbing, I noticed that quite a few things had changed since our road trip days long ago:
There is now something called the internet. In our college days, I carried a small leather address book and actually wrote to my friends on paper while on the road.
Cell phones have replaced pay phones. We used to have to to load up our prepaid calling cards and look for a pay phone to let our parents know we were still alive. Now we just searched around Almo, Idaho, until we discovered the cell phone reception sweet spot. (It was pretty good at the northern-most table on the patio of the Rock Stop general store.)
Our trip food budget expanded to include things other than rice and ramen noodles. Though we still cooked most of our meals on this vacation, it was nice to have enough funds to enjoy the food and drink at some of Bend, Oregon’s great brewpubs with our friends.
We looked at some of the climbs we did at these areas in our early 20s and wondered how we had the nerve to get up them.
Our truck has been replaced by a tiny, fuel-efficient Toyota sedan. It is amazing how much camping and climbing gear we squeezed into that little rig. However, we did bottom out on some three-inch-tall rocks on Idaho’s back roads.
I now had an ostomy.
It was easy to forget about this last big change because things felt so much like they had in the past before I had gotten sick with UC and before I had surgery. I was just out there having fun and my stoma did not diminish the joy of a road trip one bit. Other than changing or emptying my appliance, or having to drink extra water to prevent myself from getting dehydrated, I hardly thought about my ostomy at all. It proved to be no trouble during long days on the road, while living in camp or while climbing long routes.
We shot a lot of footage on our road trip and will be putting together a video about the adventure soon. Until then, the following photos share some of the great times Doug and I had on the trip.
Climbing Theater of Shadows on Jackson’s Thumb at City of Rocks. This was my very first lead climb after surgery.Rappelling off of a route at City of Rocks in Idaho.Our very cool campsite at City of Rocks.Sketching at camp.I love donkeys. We encountered this cutie while walking near our friends’ house in Bend, OR.Showing off a fresh wound after a full day of climbing at Smith Rock, OR.Enjoying the McMenamins salt-water soaking pool in Bend, OR.Spending time with my parents at Crater Lake.Exploring the mile-long Lava River Cave near Bend, OR.No road trip is complete without at least one stop at a giant roadside sculpture. Doug and I getting silly during a major windstorm at the huge Conestoga wagon near John Day, OR.
In the weeks after making my decision to have a permanent ileostomy, my imaginings of what life was going to be like after surgery played in my head like little movies. There was the one that featured me happily leading hikes with my ostomy at work, and another in which I pictured myself successfully emptying my appliance on backpacking trips. However, the one that I liked to imagine the most involved being on a long multi-pitch climb.
There I was in my mind–hundreds of feet up a steep route and anchored into a small ledge with the climbing rope. I would picture myself removing a full pouch, snapping on a new one and then bagging up the old and tossing it in my pack like it was no big deal at all–as if I had been doing it that way my whole life. I would gaze up at the many pitches yet to go and get ready to climb, barely thinking about my ostomy at all.
As I prepared for and recovered from surgery, these visualizations became an important source of hope for me. I really had no idea if the reality would end up exactly that way I pictured it, but having these images in my head gave me a goal to strive for. I really saw no reason I couldn’t do all the things I was envisioning once I healed up.
One by one, in the year and a half since surgery, I turned those images in my mind into actualities. I jumped right back into work and led hikes and nature programs. I worked my way into backpacking, even going on an eight-day trip 10 months post-op. Snowboarding, swimming, yoga, biking, short climbs–my return to all these sports has been just as amazing as I had pictured they would be. But there was one thing that was still just a series of images in my head: the multi-pitch climb. Would dealing with my ostomy on a long, hot climb with small belay ledges be as doable as I had imagined? After all, one of the main reasons I chose to have a permanent ileostomy over j-pouch surgery is that I personally felt it would be easier for me to manage on all-day climbs. I was a little nervous about putting that notion to the test. As I built up strength in the 20 months since surgery, and worked through some hip and shoulder injuries, I continued to wonder what climbing a long route was going to be like with my ostomy.
Last weekend I finally found out as I went with Doug and his brother and dad to climb Devils Tower in Wyoming. We had all climbed this famous rock formation in 1992 and were excited to give it another go. This reunion-style climb with my family was more than I could have ever asked for as my first post-surgery multi-pitch climb. Being back on the rock with all of them was a blessing.
Our gang on the summit of Devils Tower, WY, 20 years ago.Our same team on the summit in 2012.We are tired and thirsty, but safely back at the base.
The 15-minute video below highlights our adventure on the Tower. As I watch it myself, I am in awe at how similar the real images are to the little movie that played in my head in the hospital. For climbing and so many other aspects of my life, the things I imagined and hoped for with my ostomy did turn into reality–a truly amazing reality.
Usually it is the big flashy things like climbing ropes, packs or tents that become my most coveted outdoor gear. Lately however, a much simpler and unassuming piece of gear has become one of my favorites.
A couple of months ago UPTT Inc. sent me a One Pass Ostomy Draining Device (OPODD) to try on my adventures. Due to my hip injury, I had to put off testing the device outdoors until a three-day backpacking in Rocky Mountain National Park in June. This, however, did not stop me from trying it indoors. The OPODD is an instrument with two flat rollers that clamps onto your pouch when you want to empty. With one downward motion, the device pushes all pouch contents swiftly out of the tail. Though it took a few tries to get used to the OPODD, once I had the hang of it I found myself reaching for the tool again and again. It is especially useful on those days when my output is thick and difficult to push out of the pouch. One quick swipe of the device and the output is forced out — no matter what its consistency.
I liked the device so much that I was soon using it every time I emptied at home. Though I usually leave the device at home because I seldom carry a purse, the slim design of the OPODD makes it easy to fit in a handbag or tote to be carried anywhere you go.
The OPODD clamps on the pouch. Emptying the contents only takes one smooth downward swipe.
After trying it out, I was convinced that the OPODD was great to use at home. Now it was time to take it into the wilderness with me. Ever mindful of my pack weight, I am very picky about what I choose to bring on backpacking trips. Something has to be highly useful to make the cut. It didn’t take long to realize how happy I was to have the OPODD along on my first backpack adventure of the season. In the middle of cooking dinner on our first night, the sky darkened and big heavy raindrops spilled from the sky. We swiftly donned our rain gear and dashed under the trees with our dinner. Despite being covered by tree branches and Gore Tex, my clothing soaked up the dampness and my teeth began to chatter from the chill. Leave it to my ostomy to decide that this was the best time to produce ample amounts of output. I had to make a trek to the camp privy in a full-on rain storm.
When I got to the backcountry restroom facilities (a pit toilet sitting out in the middle of the woods with no walls or roof), I quickly grabbed my OPODD, clamped it on my pouch, slid it down and had the contents emptied within seconds. Normally it would have been hard to manually work output to the tail-end of my pouch with such cold hands, but maneuvering the device was easy even with the chill-induced clumsiness.
Heading to the privy with my OPODD on a very chilly evening.
That night, the handiness of the OPODD proved itself again. When I do strenuous exercise such as backpacking during the day, my output often slows down or stops almost entirely. That means everything comes out later — often in the middle of the night. Getting up at 2 a.m and walking five minutes away from camp alone is unnerving. Sitting down to empty my appliance by headlamp while surrounded by miles and miles of pitch black wilderness spooks me out. It is one of those times when I swear twigs are being stepped on all around me, and I imagine mountain lions behind every boulder. Pulse racing and goosebumps fully engaged, I want to purge the contents of my pouch as fast as possible and get back to the tent. This particular night, I ended up having to endure this experience a couple of times. It was wonderful to be able to clamp the OPODD on my pouch, slide the contents out quickly and return to the comfort of my sleeping bag and the company of a snoring Doug.
My positive experiences that first day made the device completely worth its weight — and that is really the only issue with bringing the OPODD on outdoor trips. For those who try to backpack on the ultra-light side, the OPODD weighs in at 3.6 ounces. Not heavy by any means, but when one is trying to get their pack weight as low as possible, every ounce counts. Personally I feel that the extra weight is a small price to pay for the ease the device adds to emptying my pouch in the wilderness.
The only challenge I noticed with the OPODD was that it couldn’t slide over the Velcro at the end of my Convatec Pouches. This didn’t end up being an issue though. I would just push the output as far as the Velcro with the OPODD and then drain out the rest manually. This actually worked great because it prevents any output from getting on the device.
You can’t see my OPODD, but it is tucked in my pack as I head out on a backpacking trip in the Mt. Massive Wilderness two weeks after the one in Rocky Mountain National Park. I plan to bring the OPODD on every wilderness excursion in the future.
As I continued to test out the OPODD, I realized that it was going to become an indispensable piece of outdoor gear. Two weeks after the Rocky Mountain National Park trip, Doug and I were out in the backcountry again on a hike up Mt. Massive which included two nights of camping in the wilderness. This time the challenge was mosquitoes which swarmed around me every time I tried to empty. One plus of having an ostomy is that you don’t have to expose your bum when emptying like you would when having a normal bm. Still, the skeeters were happy to attack the uncovered skin on my hands instead. The speed at which the OPODD allowed me to empty prevented me from getting many itchy bites.
From cold hands, to scary dark nights and blood-thirsty insects, the OPODD came to the rescue and allowed me to empty quickly and easily. I never plan to hit the trail without it again.
Here are some clues that my schedule has become crazy busy lately:
This morning I tried to brush my teeth and put my socks on at the same time. It didn’t go well.
Dust bunnies are currently breeding out of control in all corners of my home. I am very glad they are peaceable creatures.
The two minutes it took for my oatmeal to cook one morning this week sounded like the perfect time to squeeze in some blogging.
I’ve seriously thought about putting on my running shoes while doing errands and chores to see if I can cut my time or get a personal best. I can fold a basket of laundry and put it away in five minutes. I am going for three.
I ate spaghetti with sauce from a jar for dinner three times this week.
It is hard not to over-schedule when I am feeling well. Everything sounds fun, and before I know it, I have filled my days with so many activities that I barely have time to sleep. I am still having hip pain, but it has lessened some. My orthopedist can’t find any cause other than a slightly deep hip socket joint that may be causing my bones to rub a bit. Regardless, he thinks it is something I will just have to live with. I can do that. My physical therapist is also working with me on hip alignment issues that could also be part of the problem. The good thing is that both of these individuals think it is fine to run and hike. Despite things hurting a little bit, I am thrilled to be out moving again and I am taking full advantage of every opportunity that presents itself. Doug and I have already gone on two three-day backpacking trips this month, and our summer is only getting started. Breed away dust bunnies… I am going to be ignoring you for a while.
Doug and I on top of Mt. Massive on our second backpacking trip of the season.
I remember wondering if I would ever be able have crazy hectic marathon-like days with an ostomy. Would I be able to manage it in a tight schedule? What about having enough time to empty? Could I eat at any hour of the day? This week was my busiest since surgery, and I am happy to report that insanely full days are completely possible with an ostomy.
On Saturday, I got up at 5 a.m. to go to City Park in Denver to run the Undy 5000. This is a run sponsored by the Colon Cancer Alliance. Proceeds from the race go to pay for colon cancer screenings for the underserved. We have been in the middle of a record heat wave in Colorado, and the high temperature for race day was 103 degrees. I tanked up on water, said hi to some of the people from my local ostomy association who were volunteering at the event, and headed for the start line. The heat was oppressive and I got nauseated during the run despite staying well hydrated. It was definitely not the day to push it, so I enjoyed a more leisurely pace and finished the run in roughly 31 minutes. Even with the heat, my ostomy appliance stuck fine. I indulged in some post-race treats and beverages, perused the booths and then headed home to take a shower and get on to the next activity of the day: a 9+ hour work day.
Showing off my undies in front of the inflatable colon at the Colon Cancer Alliance’s annual Denver Undy 5000.Sporting my ostomy t-shirt from thegreatbowelmovement.org at the start line for the run.Everyone gets in the spirit of the Undy 5000 by running in their underwear or other fun bum-related costumes.
Soon I was up in the foothills leading a Jr. Ranger event at one of the parks in the Open Space System where I work as a naturalist. I spent the next 4 hours in 90-degree heat running through a meadow helping youngsters catch insects and teaching about the amazing diversity of bug life in the park. After a quick sandwich-dinner and a practice music session with my coworkers, I told stories and played my guitar as part of an evening sing-a-long and storytelling program for the campers. When we finally packed everything up to head back to the trailhead, it was almost 10 p.m. I had gone full blast from roughly 5 a.m. until 10 p.m. and my ostomy did not slow me down one bit. The only thing that was challenging was staying hydrated, but I had brought a huge personal water container along to the park since there was no potable water there. I drank over 8 liters of water that day.
The next morning Doug and I were up early to head to a friend’s going away pool party. We swam for several hours in the morning and then had a delicious BBQ in the afternoon with burgers, brats and corn on the cob. (I am fortunate in that my ostomy tolerates possible problem foods well when I eat them in conservative amounts, chew a lot and drink plenty of water.) Later that evening we headed back to the pool. I had never been in the water for such a large percentage of a day since having surgery, but my wafer did just fine—even with numerous trips down the water slide and many cannonball jumps.
Doing laps on the water slide at my friend’s pool party.
The crazy week continued. Monday included a doctor’s appointment and an evening dinner with Doug’s parents. Tuesday was filled with work and then my local ostomy association meeting in the evening. I collapsed in bed at 11 p.m. only to get up at 4:30 a.m. for our local Bike to Work Day. It was another scorcher, but the temps weren’t too bad so early in the morning. I rode my bike 7 miles from my house into Golden, and then continued for another 6.5 miles up into the foothills to the park where I work. That part of the ride included 1,900 feet of elevation gain. That evening, I rode back home, ate dinner and went right to bed.
Arriving at my destination after 1,900’ feet of elevation gain during our local Bike to Work Day. My amazing coworkers left encouraging messages for me along my route.
As I type this, I am on the plane traveling to visit my parents for several days in Washington state. This wasn’t the aircraft Doug and I were scheduled to be on (and we certainly weren’t supposed to be in the first class section where we now sit). Our plane left Denver an hour late and we missed our connection to Seattle which also meant we missed the last flight to the small town of Walla Walla where Mom and Dad live. Suddenly life became a bit spontaneous as we had to completely rearrange our plans. The airline put us in first class for our next flight, gave us meal vouchers and are covering our lodging in Seattle until we can catch another flight to eastern Washington in the morning.
Through all these unexpected twists, I hardly even thought of my ostomy. My main curiosity was how my very first trip through airport security since surgery would be. I was fully expecting to have to say something about my ostomy to the TSA personnel. However, I didn’t mention it and went through the metal detector uneventfully like everyone else. I did get asked to run my baggage through the scanner again, but only because I failed to realize that I was supposed to remove my laptop from my luggage. Security didn’t even ask me about the scissors in my ostomy changing kit in my carry-on (which are allowed according to TSA because the blade is under 4 inches long). We shall see if Seattle airport security goes as smoothly with my ostomy.
Blogging while enjoying the surprise first-class seat assignment on the plane.
As soon as I get back home, I have four evenings after work to unpack from this trip and get my things ready for the next adventure: The Crohn’s and Colitis Foundation of America’s Camp Oasis where I will be volunteering for a week as a camp counselor for children ages 7-13.
Through all these activities, my ostomy has faded into the background. I change my appliance twice a week, empty when I need to, eat when it fits in (many times as late as 9 p.m.), and drink a lot of water in the heat. Other than that, I can honestly say I don’t think about it a whole lot and it is not an inconvenience in my life. The longer I have my ostomy, the more I realize how normal everything feels with it– even during the busiest of times and when dealing with last minute changes in plans.
As great as it has been doing so many fun things this month, I know I can’t keep this pace up indefinitely. The dust bunnies will start to haunt me, a personal best at the time it takes to clean the shower will suddenly not sound so cool, and I will want to pull a cookbook off the shelf and actually make something decent for dinner. I am craving lawn chair time with an iced tea and good book instead of a huge “to do” list of things to pack for the next race, bike ride or outdoor trip. My ostomy hasn’t slowed me down one bit, but I think it is time to put the brakes on myself. Well… after the climbing trip we just scheduled for the end of the month that is.
No more itchy-scratchy. I recently healed a rash under my wafer that had been plaguing me for about four months. In the process, I discovered that figuring out the cause and solution to ostomy skin problems can take some serious detective work. Solving my stubborn case involved some help from my stoma nurse, medication, a wacky new wafer method, and a touch of inspiration from a childhood memory.
I grew up with two brothers, and sometimes we would get into spats. When these unfortunate events happened, I could handle hair pulling, pinching, being kicked and even getting spit at. However, there was one method of sibling warfare that I absolutely dreaded: the snake bite. This involved having my forearm gripped with two hands while the skin was twisted in opposite directions at the same time until a painful sting ensued. A well-executed snake bite would leave my arm red and throbbing.
On several occasions since getting my ostomy surgery, I was certain that my wafers were giving me snake bites.
When I was healing up from surgery and researching ostomy appliances and sports, I read that some people have trouble with their wafers sticking in warm weather due to sweating. As I got back into outdoor activities, I fully expected that this would be the main wafer issue I would have to deal with when doing active sports. However, this ended up not being the case at all; my wafers adhered well through any activity. Instead, I was faced with an entirely different problem related to my ostomy appliance and strenuous sports.
When I was hanging out at home in the months after surgery, I had absolutely no issues with my wafers causing any skin issues. However, once I healed up I started biking and hiking, it seemed like my wafer would get pulled in one direction as I moved, while the skin underneath wanted to move in another. The Coloplast wafers I wore for the initial months after surgery were made out of a fairly non-pliable plastic, and would leave a circle of painful blisters on my skin right around the outer edge of the wafer from this tension. I decided to experiment with a different brand.
I tried Hollister and then Convatec and found that the Convatec ones seemed to move the best with my body contours and movements. I had no further skin issues with my wafers for the first 10 months when I was mainly hiking, snowboarding and biking. Then in January, I started to do activities with more extreme movements, like yoga and climbing, on a weekly basis. All of a sudden, my wafers felt like they were giving me snake bites again–especially near my hip bone.
I have a narrow body, but my stoma measures 1.5 inches at its widest spot. This forces me to use larger sized wafers. When I put a wafer on, it extends past my midline incision scar on one side, and over my hip bone on the other. As I would do high steps while climbing, and twists and bends in yoga, my wafer would pull at my skin at the top of my belly and also near my hip bone. At first I tried protecting my skin with various brands of skin prep, but none made any difference. I tried to stand up while putting on my wafers and made sure I wasn’t pulling the tape part too tight while placing it on my skin. Neither of these things helped. As I was experimenting, I soon realized I had a bigger problem: a very itchy rash began to develop under the tape in the location where my skin had been pulled. Over a matter of weeks, the rash spread to other areas under the hip-bone-side of my wafer.
It was time to seek some help from my stoma nurse. After hearing about my symptoms, she felt it could be a yeast infection and recommended anti-fungal powder. I tried this for three weeks with no improvement.
In the meantime, I started to wonder if perhaps I had developed an allergic reaction to the tape part of my wafers. I really hoped this wasn’t the case. I didn’t want to have to change my ostomy system. I loved the way my wafers stuck so well through sports and swimming, and all my hernia belts and pouch covers were designed to work with my system. I thought an allergy was unlikely though, since there was no rash under the entire left-hand side of the wafer. If I had an allergy to the tape, I assumed it would show up under the entire tape part. Just to rule it out though, I decided to try Convatec’s tapeless wafers for a couple of weeks. My skin did not clear up and continued to get worse.
It was around this time that I recalled another memory. Several years ago, long before my ostomy surgery, I had a nasty, itchy rash that started on my knee and soon spread to my arms and legs. I went to a dermatologist and was diagnosed with bacterial folliculitis. The doctor felt that I had probably nicked my leg shaving and had some hair follicles get infected which eventually spread to follicles on other areas of my body. It took a while, but it finally cleared up with antibiotics.
The rash I was dealing with under my wafer looked exactly like that rash. To top it off, I now had a little area of rash on my stomach far away from my wafer. My stoma nurse recommended that I talk to my doctor to get a prescription for antibiotics. My doctor agreed that it looked like folliculitis, and I began to take Keflex. Within a week of starting the antibiotics, the rash that I had been dealing with for several months completely disappeared. Finally the mystery had been solved! I deduced that the pulling of my skin under the tape had damaged it and allowed a bacterial infection to set in. Without the Keflex, I am positive my rash would not have gone away.
The problem was, I soon felt the familiar sting of my skin being pulled under the tape when I would bend. I knew I had to change the way I was doing things, or my skin would be damaged again and the whole cycle would start over.
To attempt to solve the problem, I tried something a bit unusual. I continued to use my regular Convatec wafers, but cut off all the tape on the right half. The inner circle of Durahesive material seemed to stick just fine without the tape part, but I reinforced it with little strips of 3M Medipore tape in a few strategic spots for added confidence. My skin has always liked Medipore tape, and it is very stretchy so the strips did not place tension on my skin. When I was done, my new tape and wafer method looked a bit like the sun with rays of tape sticking out. I nicknamed it the “sunburst method.” I have now been using this method for two months and it has been working great. My skin is super happy with no more tape snake-bites and no more rash! It has held on perfectly through rock climbing, running a 10k, swimming, and even a recent three-day backpacking trip in warm weather.
This photo shows my new “sunburst method” for attaching my wafer. I trim the manufacturer’s tape away on the hip bone side of my wafer and replace it with strips of 3M Medipore tape. You can see the shine mark where my hip bone is. This new taping system completely avoids this area and my skin is no longer irritated under tape when I climb, do yoga or take part in other sports with a lot of stretching and bending movements.Two months after starting this new taping method and my skin is still healed and happy. Unfortunately, I never took a photo of the rash. Picture hundreds of tiny red raised bumps under where the wafer tape would have been on the left side and you will get the idea.
From eating to product selection to skin care–when you first get an ostomy, everyone tells you that your situation is going to be unique and that you will have to experiment to figure out what works for you. I am only now beginning to realize how unbelievably true this. I wouldn’t be surprised if my sunburst-wafer method was a disaster for someone else even though it worked for me. The point is, make sure to try different things. Don’t settle for supplies and methods that aren’t working well for your individual needs. Keep sleuthing and find the solutions that make living with your one-of-a-kind body and ostomy comfortable.
When I was a kid I didn’t like snake bites, but I did like Nancy Drew books. Nancy would just finish solving some tough case when a new and interesting one would come her way. I have felt a bit like her lately. Now that I have solved the mystery of the itchy rash, what case is next? Last weekend while changing my appliance on the backpacking trip I just mentioned, I noticed a 1/4″ white ulcer-like depression on the side of my stoma about 1/2″ from its base. It looks just like a canker sore. My surgeon and stoma nurse both think it is trauma related, so I am experimenting with cutting my wafer differently to see if it helps. Hmmm–s0 far I haven’t noticed much of a change, but maybe if I try…..
Disappointment is one of the emotions I have the hardest time dealing with. As I was standing at the start line of the Bolder Boulder 10K on Monday waiting for the gun to go off, I wasn’t sure how to prepare my mind for the letdown I was sure to have at the finish line. I knew before I even began to put one foot in front of the next that I had no chance of matching or beating my results from the last time I did this race in 2009. I hadn’t run for at least a month and had just found out from my physical therapist a few days before that I had some major pelvis misalignment issues that were likely causing some of my pain and injury. Though he didn’t say I shouldn’t do the race, he did say I should take it easy and stop to do some exercises and stretches along the route. I had no idea what a taking it easypace would even be. Did that mean I should jog? Walk? I had never done a race where I wasn’t running as fast as I possibly could.
Making my way to the Bolder Boulder starting area at 6:30 a.m.
I was still pondering these questions when the shot fired. I took off at a pace between a jog and a run, but still the questions lingered. What time would I be satisfied with? An hour? Two? Though I don’t have a competitive streak when comparing my performance with others, I am fiercely competitive with myself. Ever since recovering from ostomy surgery, I had wanted to prove that I could do as well in this race as I had before getting so sick. I knew that was impossible with my current painful hip, but there had to be some sort of goal, right?
As I ran down the street and watched the people in my wave pass me one by one, I realized that this race wasn’t going to be about reaching any pace goals. It was about simply being there. After all, just weeks ago Doug had picked up my race package for me. At the time, I couldn’t even make myself open it. I didn’t want to see the running bib that I was sure I wouldn’t be wearing due to what was thought to be a stress fracture in my pelvis. Yet luck had veered my way. The x-ray had been a misread and I had been given the go-ahead to run while undergoing further tests for other pain causes. Here I was immersed in the event that I had wanted to do so much, and all I could focus on were things I had no control over. I couldn’t make my injury go away, and I couldn’t magically make up for a month of lost training time. I could, however, adjust my outlook. As I ran under the banner marking mile two, I flicked an attitude switch in my head from the side that read I am so bummed that I am not going to get the time I hoped for to the one that said I am so amazed to be running through the streets of Boulder surrounded by beautiful views, music on the street corners and onlookers handing out treats to the runners like bacon, cotton candy, and marshmallows.
I much preferred the second attitude and decided to keep the switch there for the remainder of the race. (I did, however, avoid catching any marshmallows. I had already had my fill of those the day before after consuming six of them to slow output before my appliance change.) At every mile marker, I stopped to do the exercises the physical therapist had recommended I do during the race. I knew that these stops were sabotaging my time, but I no longer cared. When my hips started to hurt slightly at mile four, I slowed down the pace. I had no worries. No expectations. In the past, I would never have veered off course to become a target for child with a Super Soaker. Never before had I taken advantage of the offers for high fives from sideline spectators. I don’t remember looking at the stunning vistas of the Flatiron rock formations along the race route in previous race years. At the slower pace, I took all this in.
Every other time I ran the Bolder Boulder, I finished in just under an hour. This time, when I looked at my watch at 59 minutes, I still had a little over a half mile to go. Just for old times’ sake and knowing that I was close to the end of the race, I picked up the pace and ran as fast as I could for that last half mile. I felt strong and vibrant as I entered the stadium and sprinted the final half lap to the finish line. Other than amidst the marshmallow-catching antics earlier in the route, this was the first time I thought of my ostomy during the entire race. I thought of all the things I had gone through since last entering that stadium in 2009, and how lucky I was to be back to health and running there again.
As I crossed the finish line, the letdown and disappointment that I was sure would greet me there had been replaced by delight. And when I finally looked down at my watch to see my time, 1:06:33, I was even more blown away. That was only about eight minutes longer than my 2009 time. This was certainly enough to please my self-competitive side — well, for the most part. In the stands after the race, there was a moment when I lamented to Doug that had I not been injured, I would have really nailed it. He reminded me that I was injured and that I did nail it. Oops, that little attitude switch had gotten bumped into the wrong place again. I put it back to the “here and now” slot, slathered myself with some sunscreen and sat back to watch others racers jubilantly cross the finish line — including a banana, gorilla, coyote, bear ,and unicorn. Hmm… maybe my goal for next year should be to run the Bolder Boulder in costume.
Lately, Ostomy Outdoors has turned into Ostomy Indoors. It feels like it has been so long since I have been outside doing even the smallest outdoor adventure and our video camera has been sitting on the shelf untouched for months. This has all been due to the hip pain that I have been writing about lately. My orthopedist gave me the go-ahead to work out again, yet I am still experiencing significant soreness in my groin and hip. A small uterine fibroid was ruled out as a possible cause, so my doctor wants me to go in for one more MRI just to make sure it isn’t a lower back issue. This has left me in limbo-land; I’m unsure if I should proceed full throttle with my trail running and other strenuous activities, or if I should hold back until I know more. I can work through some pain, but I don’t want to cause an injury.
Maybe as a result of some of this uncertainty, my spirits have hit rock bottom lately. I have been feeling super tired despite getting lots of sleep, and my normally positive attitude has been playing hide and seek with me. Yesterday afternoon, after bidding my brother-in-law and nieces farewell after a fun weekend visit, I spontaneously decided that Doug and I needed to go rock climbing that minute. It was gorgeous outside, and even though I had a daunting to-do list, every cell in my body was telling me I needed to get my body on the rock for some inspiration, or the gloomy emotions that I was experiencing would continue. Also, I was sure that my sore hips could handle the smooth, methodical movement of climbing.
Doug and I are fortunate in that we live in close proximity to some amazing climbing areas. We quickly tossed gear into our packs and within 30 minutes we were driving up Clear Creek Canyon to one of our favorite local spots. As I grabbed my climbing pack out of the car and headed down the trail, an incredible peace came over me. Gone were all thoughts of painful hips. Doug and I were going to be on the rock in a few minutes, and that was all that mattered.
It is hard to describe how much I love rock climbing and how vital it is to my life. Doug and I got into this sport together and have been been climbing since we first met in the college dorms in 1990. That year, we bought our first carabiners, rope, and a beater Toyota pickup to use on climbing trips. We have so many memories on the rock and have made many life decisions based on our shared love of this sport, including my desire to have a permanent ileostomy to treat my UC. To be out climbing with Doug again is joy in its absolute purest form.
However, as I climbed that afternoon and into the evening, there were moments of disappointment when things felt harder than they used to. I had to constantly remind myself to quit comparing my performance to the days of old. Things have changed, and though I may eventually return to my previous climbing abilities, it doesn’t really matter. The important thing is that I was back outside, covered in that wonderful mix of sunscreen, chalk dust, and dirt, and loving the amazing feeling of my body moving upwards over the rock. I ended up having so much fun that I completely forgot about the special solar viewing glasses sitting on my bookshelf at home all set for watching the 7 p.m. eclipse. We completely missed it! At first this disappointed me too, but I decided an afternoon in the canyon climbing and laughing with my sweetie was so much more memorable and important. It was exactly what we both needed.
The inspiration that the spur-of-the-moment climbing excursion brought was also much needed. I hadn’t filmed a video for Ostomy Outdoors in a while, and hadn’t really planned on filming anything yesterday. Along with being in a mental funk, I was also in a creative one. Fortunately, climbing outdoors rekindled the desire to film, and I was glad we had brought the video camera along. At first, being filmed again felt as awkward as getting back on the rock after not climbing outside for months. When the camera rolled, I felt tentative and unsure of what I wanted to say. I wasn’t even sure when we left the canyon if the random footage we filmed could be woven into a coherent movie. I hadn’t really filmed any tips or tricks and wasn’t even sure it had a theme. Once I got home though and watched the clips, a story did begin to emerge. This day at the crags and this little film is about reconnecting with my passion, and discovering its ability to infuse my life with the hope and creativity needed to keep moving forward.
On Sunday I climbed a few feet above the fourth bolt on the wall at the rock climbing gym, held my breath, and jumped off. I felt a few butterflies in my stomach as I free-fell 10 feet before my rope and harness caught me and brought me to a stop. Doug lowered me to the ground where a staff member gave me a smile and a casual “nice job” nod. I had just passed the test to be able to lead climb at our local rock gym. This was my second such test. I had also taken one in Fort Collins last month at the gym we sometimes climb at with Doug’s father.
In lead climbing, a climber clips their rope into protection placed in the rock (or on the artificial gym-wall) as they go. This “pro” is either: 1) temporary equipment that a climber places in cracks outdoors, or 2) permanent, preexisting bolts drilled into the rock or artificial wall. If a climber falls above the last piece they clipped, they will travel some distance before the rope catches. For instance, if a person falls three feet above their pro, they will fall that distance plus three more feet until the rope catches. Factor in a bit of rope stretch and the total distance could be 10 feet. The climbing gym wants to make sure climbers know how to safely clip their rope into the bolts on the wall and fall properly before they will allow you to lead climb.
Top roping is a different style of protecting the climber in which the person will only fall a short distance because the rope is already anchored at the top of the cliff or wall. When I began climbing again a year after ostomy surgery, I started with top rope climbing. Though I am now leading in the gym, it will be a while before I feel confident to lead routes outdoors again where there are more hazards.
Nothing has been a bigger symbol of my climbing progress as being able to get back on the “sharp end” of the rope. I was fearful of what a big fall might feel like after surgery. Would falling several feet in my harness hurt my stoma? Would the resulting tug make my pouch pop off? As has often been the case when returning to my active pursuits, none of my fears came true, and my stoma and pouching system held up just fine through the tests at the gym.
Lead climbing has not been my only measure of progress lately. While climbing weekly, I am quickly moving up the grades and getting on some overhanging routes (steeper than 90 degrees). When I returned to the rock gym five months ago, I didn’t even try to do any marked climbs — I just grabbed any hold on the wall. Soon after, I was only using the “on route” holds, but sticking to routes in the 5.7 range. Last month I ventured into the 5.8 and 5.9 territory, and last weekend I did my first 5.10-. I am feeling powerful and strong with not the slightest pain in my core.
When I got back into climbing, I told myself that I would be happy doing 5.7 routes for the rest of my life if that was all my body could handle. All that mattered was that I could climb again. However, I now see that these restrictions won’t be necessary. By conditioning my body, progressing slowly to build the required strength, and always wearing my six-inch-wide hernia belt, I am quickly returning to my pre-surgery climbing abilities. I look forward to warmer days when I can start climbing outdoors on a regular basis and head out on some much longer routes. And, of course, I’ll share some of those through videos!
Ostomy Outdoors 
