Usually when Doug and I head out on vacation, it involves traveling into some remote wilderness or challenging ourselves on rock faces. However, this April, we embarked on a different type of adventure as we made a trip to New York City to visit my brothers. Instead of hiking to backcountry lakes and peaks, we walked to different neighborhoods. From Manahattan’s Greenwich Village to Brooklyn’s DUMBO, we enjoyed taking in the unique character of each place. We also strolled through many of the city’s green spaces including Central Park, Prospect Park and the Highline, and visited the Gugenheim, Museum of Modern Art and the Natural History Museum.
Usually on our wilderness trips, I have questions about routefinding, which layers to wear and whether or not the cloud build-up might lead to a storm. However, on this vacation my queries were of a different sort– and some of them became relevant when dealing with my ostomy on the trip:
Do New Yorkers ever get tired of being in small, crowded places?
I marveled over how many people lived in the NYC area and how crowded things were. On the L-train that led to my brothers’ neighborhoods in Brooklyn, I often felt like a pickle in a jar–we were packed into the subway so tightly, yet more and more people would cram in at the next stop. If you lost your balance when the train came to a fast stop, it didn’t matter because there was no room to fall over.
I also couldn’t believe how tiny some of the restaurants we visited were and how we were often eating shoulder to shoulder with the party at the next table. The restrooms in these little establishments were also itty-bitty compared to the multi-stall bathrooms found in most Colorado restaurants.The square footage of the typical New York apartment is also on the small side making for tight quarters when we were staying with my brothers. I loved having ostomy deodorizer along on the trip so I didn’t have to worry about stinking up these small spaces when emptying or changing my appliance. A dozen drops of Hollister’s M9 drops in my pouch completely eliminated any odor. It is pretty darn cool being able to make your poo not stink on command– something that isn’t an option for those with colons!
How can New Yorkers eat dinner so late on a regular basis?
At home, I often run or go to the gym when I get home from work which sometimes has me eating at 8 p.m. It isn’t a problem for me and I don’t notice a difference in my overnight output schedule whether I eat early or late. Still, in NYC we pushed my eating schedule to the max and we sometimes at dinner as late as 9 or 1o p.m. I wondered at first if this would have me emptying all night. Fortunately it didn’t and most nights I was able to sleep tight until morning. Even if I would have had to get up, the inconvenience would have been totally worth the experience of visiting so many fun bars and dining on everything from tasty Thai food to hearty Italian fare, spicy Mexican dishes and New York pizza (gluten free of course!)
Where do people with IBD find bathrooms in this town?
In the woods, it is easy to find a bathroom anywhere. If you duck behind a tree and dig a hole you are pretty much set to go. In the suburbs, you can often drive to a fast-food restaurant or gas station and easily use the facilities. In New York City, we were always traveling by foot or subway, and it wasn’t easy to find public bathrooms that weren’t reserved for customers. I drink a lot of water to prevent dehydration with my ostomy and I end up urinating a lot. There were many times I thought my bladder was about to burst when I managed to find a restroom in the nick of time. (Thank you, Trump Tower!) Though BM urgency isn’t as much of an issue with my ostomy because I have a lot of control over when I empty, the lack of public restrooms would be incredibly hard during an IBD flare.
Though thoughts about my ostomy did pop into my head a few times on the trip, the vast majority of the time it was at the back of my mind. I was left to focus on fully enjoying the big city adventure and trying to figure out another perplexing question: how the heck do women cover such long distances in the city in high heels! I have hiked miles and miles on wilderness trails, yet my feet and legs never get so tired as when I visit New York City. People there walk everywhere. Fast. And often in fashionable footwear that doesn’t look very comfortable. I have no idea how they do it. After five days of walking around the city visiting parks and museums, I could barely lift my legs.
Doug and I had loads of fun visiting the Big Apple, but after six days there, we were ready to return to the wide open spaces and slower pace of Colorado. In the weeks ahead, we look forward to returning to many of our favorite summertime sports in the wilds.
A couple of summers ago I climbed Devil’s Tower in Wyoming on a 98 degree day. As there was no place to empty up on the rock, I used closed-end pouches and carried the full ones out in my backpack. As I was rappelling the route upon completion of the climb, I noticed that I could smell ostomy output through my backpack. Oh no! My used ostomy pouches must be leaking out of the plastic bags I put them in, I thought. When I got to the base of the tower, I opened the lid of my pack with trepidation. However, all was well with my ostomy pouches. They were still nestled securely in three layers of plastic– the final one being an OPSAK odor-proof bag. The heat had simply made things very smelly and no amount of bagging seemed to help. If odor-proof bags couldn’t conceal the smell, I figured nothing could. I accepted that an odoriferous backpack would be my new reality on hot-weather outdoor adventures.
Fortunately, thanks to a new product called OstoSolutions Ostomy Pouch Disposal Seals, my backpack will be smelling a lot fresher. Last fall, a representative from the company contacted me to see if I would give the OstoSolution Seals a try and provide feedback. Though I don’t get paid to promote products, I enjoy trying samples out and letting readers know about supplies that may make managing their ostomy easier. After learning about the OstoSolutions Seals, I was excited to test them out because it seemed like there were many situations where they could be useful for outdoor adventures.
An OstoSolutions Ostomy Pouch Disposal Seal is a lid for the opening of a two-piece ostomy pouch. It snaps on and keeps any odor or output from coming out when a used pouch is thrown away. To insure a tight fit, Ostosolutions Seals are pouch-specific and are available for a wide variety of brands and sizes.
I have an ileostomy and empty my pouch four to eight times a day. Because of this, I usually use drainable pouches and keep one on for three to four days. If I were to use disposable closed-end pouches everyday, I would go through far too many and it would be expensive. However, when I am in places where it is difficult to empty a pouch, for instance on a cliff face or in deep snow, I do use closed-end pouches and pack them out when full. These are the times when I could see the OstoSolutions Seals being practical for me.
The first opportunity I had to try out the seals was while doing volunteer flood-relief work in my home state of Colorado. I was scheduled to help dig out a home in a heavily impacted area and knew there would be no restrooms nearby. I wasn’t comfortable digging a hole to empty and it was difficult to find privacy with 20 other volunteers working at the site. My only option for managing my ostomy waste was to use a closed-end pouch and pack it out. This provided the perfect opportunity to test out one of the OstoSolutions Seals.
After shoveling mud all morning and taking a lunch break, my pouch was finally getting full. I wandered a short distance from the house, ducked behind a tree, discreetly removed my pouch and popped on a fresh one. Then I snapped an OstoSolutions Ostomy Pouch Disposal Seal onto the coupling ring of the full pouch. It was as easy as putting a lid on a food container and completely secure. I did throw the full pouch in Ziplock out of habit, but I wouldn’t have had to. With the seal securely on the pouch, there was absolutely no chance of stool leaking out.
I worked for the remainder of the afternoon and used one more seal on a full pouch before finishing up for the day. My husband and I had carpooled to the site with two strangers in their Volkswagen Golf. As we made the hour-long trip back to Boulder, it was comforting to know that no odors would be wafting out of my pack and into the airspace of the small car.
The second test was on a November hike to the top of 14,440 ft. Mt. Elbert in Colorado. I knew it was going to be very cold and windy on the adventure and I hoped that using the OstoSolutions Seals would make swapping out my full pouches faster. I have Raynaud’s disease and when my fingers are exposed to cold temperatures, my circulation becomes impaired. Without blood, they turn waxy white and become prone to frostbite very quickly.
Just 500 feet below the summit, I realized my pouch was getting full. My hiking companions kept going while I dashed behind a boulder to swap out pouches. I quickly lowered my waistband, took off the full pouch and put on a fresh one. After that I snapped an Ostosolutions Seal on the used pouch and tossed it loosely into a stuff sack in my pack. After a quick dollop of hand sanitizer, my gloves were quickly back on my hands and I was catching up to my friends on the trail. Not having to take the time to close multiple Ziplock bags in the freezing wind saved my fingers. Using OstoSolutions will make swapping out pouches on cold-weather adventures so much easier!
Though I didn’t get to test out the seals on a hot day like the one on my Devil’s Tower climb, I know that they would be a great tool in these types of conditions. When one disposes of a full pouch in a regular plastic bag, such as a Ziplock, the odors are not contained–especially on warm days. To remedy this I would put all my Ziplocks full of ostomy pouches on a given trip into one large reusable OPSAK brand odor-proof bag. This would work fairly well, but on hot days the OPSAKS never fully contained the odor. Also, the OPSAK bags are expensive, and they would wear out after a while and need to be replaced. With the OstoSolutions Seals, I do not have to worry about using odor-proof bags. Ostomy pouches are already made out of odor-proof materials. By covering the opening with an OstoSolutions Seal, no smells can escape.
On some adventures where it is easy to dig holes in the dirt to empty my pouch into, I use drainable pouches instead of packing out my waste in closed-end ones. However, I may still have to pack out used pouches when I change my whole appliance on multi-day backcountry trips. An OstoSolutions Seal could also be used to snap onto a used drainable pouch awaiting disposal.
The only disadvantage of the seals for me was knowing that I was adding another piece of plastic to the waste stream each time I used one. However, this impact was counteracted by having to toss away far fewer Ziplock bags. The OstoSolutions are also made out of some recycled plastic. I know having an ostomy does result in throwing away a lot of bags, wafers, packaging and other supplies that only have a one-time use. However, these things are necessary for my quality of life without a colon. I choose to focus on all the other important ways I can reduce, reuse and recycle. For instance, I make my own lunches and carry them in re-usable plastic containers, I don’t buy bottled water, I use cloth grocery bags and I recycle every possible thing I can.
Overall, I am very happy with the OstoSolutions Ostomy Pouch Disposal Seals and plan to carry them on my future adventures. With them, used pouch disposal can be fast, discreet and odor-proof.
It’s as harsh out here as on top of peak in a snowstorm. This thought pounded in my head as I cross-country skied down a slope in my second-ever biathlon. The wind was blowing against me so strongly that I had to use my poles to make downward progress. I was freezing in my minimal layers, and I felt eerily alone on the course with no one in sight and snow swirling all around me. The weather was declining rapidly, and I was relieved to be on my final of five laps.
In the distance I could see the biathlon range as I steadily made my way up a final incline. Snow was filling in the trail with drifts, and I felt like I could have walked faster than I was skiing. All that powder would have been much beloved if I were out snowboarding, but I didn’t much appreciate it in a Nordic race. As I got closer to the finish line, I could see the person recording times from a stopwatch. It seemed to take forever for me to reach him. But I finally made it! I finished the race and was super happy that I stuck with it and did not give up. I couldn’t remember doing anything that felt so physically strenuous– not even hiking up Mt. Rainier. Skate skiing is one of the most aerobically intense activities I have ever done.
We wrapped up the weekend with more fun. After completing the race, we stayed overnight at Snow Mountain Ranch/YMCA of the Rockies (the place where the biathlon was held) and even hit up the climbing wall in the pool. The next morning, we got up early and drove to Copper Mountain to go snowboarding.
When the event results came in a day later, I discovered that I had the slowest pace of anyone who finished any of the various distances. It wasn’t a surprise. This is a new activity for me and I didn’t expect to be good at it right away. I had been working on my shooting a bit, but had put very little attention into becoming better at skate skiing. That changed last weekend when I took a beginner lesson and picked up countless tips that will help me improve. I also plan to begin working on my cardiovascular fitness again by running and going skate skiing as much as I can. I know it is going to take a lot of time and many little steps to get better at the sport.
That reminded me a lot of getting back into the fitness activities and sports I loved after ostomy surgery. Like training for biathlon, it wasn’t a quick process. One of the most common questions I get from blog readers is how long it took me to get back to “X” activity. Since a lot of information on that subject is buried in other posts, I thought I would create a summary of how long it took me to return to activities and what some of the challenges were. Keep in mind that I did have some significant complications with my abdominal incision healing due to a rare reaction to my particular suture material. This extended my healing time.
Snowboarding: I did this activity for the first time at around five months post-op, but because it was the end of the season, I was only able to get a few days in. I was surprised at how effortlessly the movement of boarding came back to me after losing so much strength after surgery. The most difficult part was getting back into a standing position after taking a tumble. Due to the crunch-like movement involved, it felt hard on my core. I wore (and still wear) a six-inch wide hernia prevention belt to help support my abdominal muscles. At first I was also careful to not venture onto icy terrain since falling onto my butt hurt the area where my anus had been removed. By the next season (about a year post-op), all that pain was gone and I was able to return to my pre-surgery level of boarding.
Hiking and backpacking: I went on my first backpacking trip at around five months post-op as well. I checked with my surgeon to make sure carrying 25 pounds was okay and then headed into the backcountry at the first opportunity–which happened to be a very cold and snowy April weekend! Once again, I wore a six-inch wide hernia prevention belt and was mindful to keep the weight in my pack light. Doug carried many of my things and helped lift the pack onto my back. Once it was centered on my legs, it didn’t strain my abdominal muscles at all. The cold made this first trip with my ostomy difficult, but I was happy with the extra challenge. I knew if I made it through that, warm weather adventures would be easy.
After this trip, I kept hiking every weekend and slowly upped the distances traveled and amount of weight carried. I went on a few more overnight trips and began hiking 14,000-foot peaks. I remember walking like a turtle on the first one, but I just kept at it. By ten months post-op, I was able to go on an eight-night backpacking trip carrying 52 pounds. Through all these adventures, I was continuously experimenting with supplies and techniques for dealing with my ostomy outdoors and I tried to put myself in challenging situations to maximize my learning and face my fears. For instance, I could easily have changed an appliance before a wilderness trip, but instead I would purposely wait to do it in my tent in the backcountry just so I could get the practice and become confident with my ostomy in those situation.
Running: I waited seven months after surgery to go running and I progressed really slowly. For whatever reason, this activity made me much more fatigued than hiking or backpacking. I also had pains in various areas of my abdominal wall (almost like a stitch or side-ache in the muscles surrounding my stoma) for almost a year after surgery. I never knew exactly what caused this, but it always felt okay again a day or two after running so I chalked it up to muscle fatigue. After all, I had been cut open from belly button to pubic bone. That is bound to affect the abdominal wall a bit! Eventually those muscle aches went away and now I am able to go on long runs with no discomfort. I also wear a six-inch wide hernia prevention during this activity to help support my abdominal wall.
Rock climbing: This is the activity I took the longest to return to. Climbing involves many twisting and stretching movements and a lot of physical exertion. My surgeon never said I had to wait a year to go, but that is what I decided to do in order to give myself plenty of time to heal. I knew my ostomy was permanent and I wanted to do everything in my power to reduce the possibility of a long-term injury like a parastomal or incisional hernia. I was willing to wait as long as it took for my body to tell me I was ready. In the meantime, I worked on hiking and backpacking so it never felt like I was sitting around waiting to climb. To get stronger while I was waiting, I worked with my physical therapist to strengthen my core with gentle and safe exercises. By eleven-months post-op, I finally felt that I was strong enough to rock climb. I started in the gym by ascending routes that were easy and low-angle. Then I started to do the same outside. Over the following year, I slowly bumped up the difficulty of routes I was attempting and ventured onto more vertical terrain. At 22 months post-op, I led my first easy sport route. Now that I am over three years out from surgery, I am climbing in the gym on a weekly basis, doing overhanging routes and am back to scaling rock walls at my pre-surgery level. The only thing that I have yet to do is return to leading traditional routes where I place my own gear. Just like with every other strenuous activity, I always wear a six-inch hernia prevention belt.
Yoga: Like rock climbing, I waited a year to do yoga. I know I could have gone earlier, but I was busy working on the core exercises with my physical therapist and decided to wait to try yoga until my incision area felt solid. Interestingly, I found corpse pose to be one of my most uncomfortable poses. Lying on my back made my incision area ache like crazy. I think this was the result of horrible posture during the first four months after surgery when my incision was extremely painful. During that time, I was protective of the area, and I found myself walking in a hunched-over position. It took a while to reverse that and make my muscles to feel okay with being lengthened again. Nowadays, corpse pose feels fine and the only thing I still have trouble with are bridge positions. My body tells me to go easy on those and so I do! I wear a hernia belt while doing yoga too, but switch to a four-inch model as it is easier to bend with that width.
Bicycling: This sport was gentle on my body and would have been perfect after surgery save for one thing: my butt hurt from having my rectum and anus removed. And this pain was not quick to go away. It took almost a year for the deep muscles in that area to feel like normal again. Fortunately, once I hit six months-post op, my pain had at least diminished enough that I could sit on the seat without too much discomfort. Now I can spend hours on the saddle with no issues.
As I get into my new sport of biathlon, I realize that it is going to take a lot of hard work and patience to get better. I know someday when I am skiing a bit more efficiently and faster, those early times when I struggled up the hills or felt like taking a nap in the snowdrift will seem like a distant memory. It was that way with my ostomy. Getting back to my pre-surgery activity level took perseverance. My progress sometimes seemed dauntingly slow. However, as I moved towards that goal, I celebrated each small victory. Before I knew it I was back on my favorite slopes, trails and rock faces and my life was richer for all the tiny but amazing steps that got me there.
“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
Doug and I kicked off the new year by taking part in our very first biathlon race. I decided before the event that I wouldn’t worry about my time or how many targets I hit and just enjoy immersing myself in a new activity. After all, I barely even knew what a biathlon involved three months ago and here I was wearing a race bib and sliding on skis that I waxed myself! What a fun and unexpected way start to 2014!
As for the results of the race–I ended up taking a while to complete the 7.5 kilometers, didn’t shoot that well and skied A LOT of penalty laps (extra skiing due to missing targets). However, today my father-in-law sent some photos that he took of the race and I noticed something: I have a huge smile in just about every photo. Clearly I wasn’t that concerned about my easy pace or any lofty goals; I was simply loving my time on the course.
When I was pondering setting updated goals for 2014, I thought about the biathlon and how I seemed to savor the experience more by not putting so much pressure on myself. Maybe for this next jaunt around the sun it is okay to ease up by not having a huge list of things I want to achieve. I have a general idea of what I hope to accomplish in the next year, but mostly I’d just like to allow some time for a little spontaneity, smile as much as I can and enjoy the journey.
Magazines? Bolts? Barrels? No… I wasn’t reading, building something or making wine. I was sitting in class learning all the terminology to shoot a .22 rifle in a biathlon race. Doug and I decided to give a new sport a try this winter and biathlon looked like a lot of fun. This weekend there was a clinic to learn about rifle safety and how biathlon races work.
I cross-country skied years ago, but it had been at least ten years since I had been on skinny skis. The shooting part was new to me, save for a couple of lucky shots (I hit the target!) with a BB gun in Wyoming. I was a little nervous to try both of these things together, but I am glad I did. I had a great time! There were many newcomers to the sport in the class and it ended up not being intimidating after all. I even managed to hit a few targets during the practical portion of the class. Of course–it will be much more difficult to do that while skiing in an actual race. One of the biggest challenges of biathlon is attempting to hit targets when your heart is pumping fast and you are breathing hard. There is a race in January that I am thinking of doing so I can get a feel for what this really feels like.
At the clinic, I was focusing on keeping my hands warm (the high temperature was a whopping 13 degrees), remembering how to skate ski and figuring out a lot of new vocabulary and skills. I was also hoping that skate skiing wouldn’t irritate the avascular necrosis (AVN) in my left shoulder joint (which fortunately it did not). One thing that I wasn’t thinking about at all was my ostomy. My altered plumbing feels very normal to me now and it rarely enters my mind except when I go to empty my pouch.
That wasn’t the case three years ago. At this time back then, I was a month out of surgery and struggling emotionally. It felt like my ostomy was the only thing I thought about during an entire day. Changes were overwhelming, I was full of anxiety and I wondered if life would ever feel normal again. Even though I had wanted my ostomy for treatment of my UC, I grieved over the changes to my body and cried every single day.
Those times were tough, but I know that I had to go through them to get to where I am now. Returning to an adventurous life after my ostomy didn’t happen all at once; it took a lot of small steps. Had you told me back then that I would be shooting a rifle at a biathlon course in a few years, I would have thought it was crazy! As I enter my fourth year with an ostomy, it is great that life feels so normal again and it is also wonderful to be trying a new sport challenge. I can’t wait to see where my skinny skis take me!
I must admit it. I have been very fortunate when it comes to my ostomy. I have had the best medical team imaginable through my UC and surgery journey. I have a wonderfully constructed stoma that functions perfectly and my wafers never come loose or leak. As of yet, I haven’t had the troubles with foods or blockages that some people with ostomies do. I don’t take any of this for granted and try to live each day with a sense of gratitude over the way things have turned out and for my restored health.
I felt this same level of thankfulness many times on my Rainier climb. I would stop for a few moments, look around in amazement and think I can’t believe I am really here and then close my eyes and give a silent thanks. Leaving the park after the climb was really hard. I didn’t want to let go of all I had experienced on the mountain. As we drove away, I kept wanting to take one last glance at the peak–as if each additional view would somehow help me better process all that being up there had meant or would make the memories more lasting. My ascent of Rainier couldn’t have turned out more perfectly, and it felt as if the stars had aligned for so many aspects of the trip:
My climbing team was amazing
I climbed with the best group of people that anyone could ask for. We had a total of four guides and eight participants in our team. Just by sheer luck of schedules– two of our guides also happened to be doctors and three of the other clients were nurses. Though I didn’t talk about my ostomy a lot on the climb (I had other things to focus on), having teammates with medical knowledge made bringing it up infinitely easier.
Our group met at the guide service headquarters the day before our climb to go over gear and logistics. After the meeting, I stayed back to talk with Emily Johnston, our lead guide, and also an ER doc. I brought up some of the unique challenges my ostomy presented (hydration, having to empty on rest breaks, etc.). She had some experience with patients who had ostomies and was very understanding and matter-of-fact about it. From that point on, I knew there would be no awkwardness when I had an ostomy-related question or needed to deal with it on a rest break.
All four of our guides were amazing and top-notch. One of our guides, Craig John, had made it to the top of Everest. Liam O’Sullivan, another guide and doctor, had set a speed ascent record on Rainier in 2008. Emily, Liam and Craig had also climbed Rainier over 100 times. Our final guide, Jeff Ward, was certified with both the International Federation of Mountain Guides Associations as well as the American Mountain Guides Association and instructed other alpine guides. Suffice it to say that we were in very good hands.
The other climb participants were some of the nicest people I have met. We formed a quick bond and everyone was so encouraging and supportive of each other. I truly hope that someday we will get to meet up in the mountains and climb together again.
The weather cooperated
Day one was sunny and clear blue, but when we woke up on day two, an angry looking lenticular cloud had situated itself over the top of Rainier. Fortunately, we were only practicing glacier travel skills and rope work near our low camp at Camp Muir that morning. After a short hike to the high camp at the Ingraham Flats in the afternoon and an early dinner, a ferocious thunderstorm blew in. Not only were we surrounded by intense lightning–which was fortunately attracted to the higher ridges and not our camp–but three to four inches of fresh graupel (soft hail-like snow pellets that resemble the innards of a bean bag) fell. The forecast didn’t look good for our summit attempt the next morning either, and we went to bed feeling disappointed that we probably weren’t going to make it any higher on the mountain.
Much to our happy surprise, we woke up to our guides’ voices telling us that the skies had cleared! We quickly ate breakfast (at 11:30 p.m.–yes, that’s right, in the middle of the night), got packed up and then tied in with our assigned rope teams. It was slow going with all the fresh deep graupel on the trail which made it feel like we were walking in deep sand. I was second in line, and for every step forward, I slid a half a step back.
The route was also more technical than it usually was at this time of year. Several larger crevasses had opened up, and we had to cross the gaping abysses by walking across extension ladders secured on each end. When I shined my headlamp into one of the voids I could not see the bottom. As we hiked, we could see that the stars were disappearing in the dark sky– more clouds were coming in. We pushed on and reached the top of Rainier at 7:30 a.m. We were only able to bask in our success for maybe ten minutes before it was time to head down. The clouds were looking alarmingly like the ones that had just dumped on us the previous evening. Even in good weather, the technical crevasse sections of the route had a tendency to cause a bottleneck of climbers. Being stuck waiting in an exposed place surrounded by lightning would have been terrifying and dangerous. Though we all would have loved to spend more time on top, we knew it was not worth the risk. As it turned out, the clouds blew over without incident and we ended up having great conditions for our descent.
My ostomy behaved
Two days before I was to leave for my climb, my ostomy acted up for no apparent reason. I had pure liquid output for a while and when I changed my appliance wafer one final time before leaving, I noticed I had numerous ulcers on the surface of my stoma. I had experienced these on many occasions before and even had them biopsied (which only showed non-specific inflammation and not Crohn’s). However, this time there were more ulcers than usual and some of them looked different. Along with he circular ones that I have been getting on the side of my stoma, there were strange elongated amoeba-shaped ulcers on the tip and just barely extending into the inside of my stoma. I thought, Oh no! I don’t need something new to deal with right before heading out on the climb.
I decided not to worry about it. If I had liquid output and had to change my closed end pouches more frequently along the route, so be it. I had also trained with a much heavier pack than I would actually be carrying on the trip. I knew that if I had to bring more water to offset any extra fluid loss, I would be fine with the pack weight.
Luckily, the morning we left the trailhead, my output thickened and my ostomy fell into its usual pattern of having to be emptied every four to six hours. The first day of the climb I was even able to go one stretch of eight hours. When I returned to my lodging after the climb and put on a new wafer, I noticed the ulcers had also started to go away. Whew!
I ran into one of my IBD role models on a rest break
Years ago, Doug did some website work for International Mountain Guides and met with the three guys that ran the company: Eric Simonson, Phil Ershler and George Dunn. When it came time to climb Rainier, we knew we wanted to make the trip with their guide service.
In 2006, when I was first diagnosed with ulcerative colitis, I also found out that Phil Ershler had Crohn’s disease and had recovered from colon cancer. He and his wife Sue had just shared their story in the book Together on Top of the World which chronicled their journey to overcome those challenges and climb the seven summits together. I read the book and went to see them speak at a local climbing shop and was deeply moved. The things that Phil had gone on to do in spite of IBD were truly remarkable. As my disease continued to worsen over the years, Phil’s story remained an inspiration to me.
When we knew we wanted to do our climb with International Mountain Guides, I emailed Phil and asked him his thoughts on doing the climb and what route might work best for me. He gave me some great suggestions and was really encouraging. As luck would have it, we ran into Phil on the way to Camp Muir on day one of our trip. He was descending from a day hike with his wife and a friend and happened to pass by just as we had paused for a rest break. He stopped to chat with our group, and I pulled him aside afterwards to thank him in person for the encouragement and inspiration. I still can’t believe that of all the days on the mountain… and all the people who climb it… and of all the places to take a rest break… we ran into Phil right there that day. Seriously. What are the chances?!
Though there were many fortuitous things on my climb, there were also aspects that were not just a matter of luck:
I trained really hard
The months before my climb were a roller coaster ride of injury and uncertainty. From being diagnosed with steroid-induced avascular necrosis in my shoulder in December to having hip and Achilles tendon problems in the spring– I really thought I might never be able to do the climb. However, I did everything I could to make it happen. I worked diligently with my physical therapist to get to a point where I could at least hike and aqua-run again and then did those activities week after week. If I was tired after work, I still found the motivation necessary to head to the pool. When the alarm went off at 1 a.m. every weekend to hike a big peak, I rolled out of bed and did it. Once on Rainier, this training made the climb so much easier. I still can’t believe how healthy and strong I felt up there; it was everything I had hoped for.
I was willing to ask tough questions
When I filled out my application for the climb last fall, I was very open about my ostomy. I wrote about the challenges it presented and asked for feedback from the staff about how I could handle these things on the climb. No– it wasn’t easy writing to strangers and explaining ostomy waste and my various needs related to it. However, because I was straightforward and honest about my situation, I got some amazingly helpful suggestions and gained insight into how I could adapt to the conditions I would likely encounter on the trip. Once I got up there, I was able to enjoy the climb and not worry about my ostomy because I knew what to expect.
I did not give in to fears
There were a plethora of things to be nervous about in regards to my ostomy on Rainier. Would I be able to stay hydrated on long days when all our water came from snow and could only be obtained at camp? Would it be really hard to swap full pouches on steep slopes in the cold? What about when being roped up on a team? Would my heavy pack be a problem? How much should I tell my fellow team members about my ostomy and when? I knew rest breaks were kept short. Would I have enough time to empty my appliance plus refuel and hydrate?
Instead of getting too worried about any of these things or letting them stop me from going, I equipped myself with as much information as possible to help me prepare for the trip. Beyond that, I wholeheartedly jumped into the unknown and let it play out minute by minute. There were many times that I had no idea where I would swap out a pouch within the next hour or when a conversation with another person might turn to my ostomy. I figured it out as I went along and that is one of the things that made it such a grand adventure.
The video in this post covers some highlights of the trip and conveys the emotions of the climb better than I could ever express in writing. Due to the fast pace of the climb and the fact that we were moving through difficult terrain in roped teams, carrying ice axes and wearing heavy gloves, we weren’t able to record nearly as much footage as we usually do for our films. I plan to do two more written posts in the upcoming weeks covering more details about the Rainier trip: one on the specifics of how I managed my ostomy on the climb and another regarding the sometimes challenging issue of knowing how much information to share with others regarding one’s ostomy.
When life gets busy, some things end up on the back burner. Lately, that item has been sleep. There has barely been a night in the past couple of months when I have gotten more than seven hours of shuteye—usually the number has been closer to five and there have been times it has been less.
What has forced sleep onto the back burner? In part, it’s a large, glaciated peak named Mt. Rainier that I will be climbing very soon. Along with my full-time job, life lately has consisted of these four things: hiking peaks every weekend to prepare for Rainier, going to the gym in the evenings to train for Rainier, keeping up with my physical therapy so that my joint issues don’t crop up on Rainier, prepping and packing for the Rainier climb. See a theme here? All these things take up an incredible amount of time. Many evenings I don’t get to bed until late trying to squeeze it all in. Most every training peak we have done has required a wake-up time of 1 a.m. in order to make it to trailheads early so that we can summit peaks before afternoon storms roll in. And even then—we experienced static electricity and buzzing hiking poles on one peak as a rogue storm cloud blew in at 9:30 a.m. Yikes!
With the climb on the front burner and sleep on the back one, my blog has worked its way into the far rear corner of a little-used cupboard behind a large kettle. Tonight I clanked through the pots and pans and dug it out for a quick post. To everyone who has been tuning in to the blog or who have emailed or commented and not gotten an answer: thanks for your patience. I will be back to posting and corresponding regularly once I return from the trip. Below, I am including some photos of our adventures so you can see what I have been up to. Since my last post about five weeks ago, we have climbed six 14ers and four 13ers, including a three-day backpack trip with one of the adventures. Whew!
As I prepare for Rainier, I am starting to get a little nervous about some ostomy-related things. I am wondering what it will be like trying to discreetly swap out closed-end pouches while roped up on a team, including some strangers. I hope I can keep up with my hydration needs. I am afraid that during short breaks, all my time will be used dealing with my ostomy and that I won’t have time to eat and refuel. Will my ostomy supplies make my pack heavier than everyone else’s? I know it will all be fine, but there are a lot of unknowns on the trip.
One thing that has really helped me not worry are the amazing staff at the guide service we will be using, International Mountain Guides. I have explained what having an ostomy is like to them and have asked for their suggestions on everything from dealing with poop on the mountain, to questions about hydration and accommodating my gluten-free diet. It is always a little awkward bringing up the intimate details of life with an ostomy, but being open about it helps me get the answers I need. The staff has made the process so easy. I feel comfortable asking them anything which definitely helps quell the fears.
In many ways though, I love the uncertainty. The best thing I have discovered for becoming confident with my ostomy is to throw myself into new situations wholeheartedly. Through those occurrences, I learn that I can be resourceful and adapt to anything. I can’t wait to see what challenging experiences await me on the gorgeous ice-covered slopes of Mt. Rainier. No doubt I will come back from this adventure with my horizons stretched even farther.