Today is the one-year anniversary of my Mt. Rainier climb. I can’t believe 12 months have gone by since I stood on the summit. When I returned from the climb, I blogged about the adventure. However, I had intended to write a couple more posts related to the trip. The weeks sped by and I never got around to it. What better time to revisit the topic than on this anniversary?
As someone who has a big passion for spreading ostomy awareness, I viewed my trip to Rainier as a great opportunity to share information about ostomies with others and show that anything is possible with a stoma. In fact, as I walked into our pre-trip meeting at the guide service, I had all the things I wanted share with my teammates during introductions neatly figured out in my head. The problem was, things didn’t go as planned.
As we sat in a circle and got ready to meet each other, the lead guide threw out some questions to break the ice and get us started: Tell us who you are, a little bit about your climbing experience and something weird about yourself, she said.
Something weird about myself? That wasn’t the introductory question I had hoped for. Everything I planned to say about my ostomy didn’t fit at all with the concept of weirdness. If anything, I wanted to talk about how normal life with an ostomy was. I came up with another silly non-ostomy-related answer for the question and scrambled to think of another way to bring up my surgery.
As I shared a little bit about my climbing experience in my intro, I did mention that I had been severely ill with ulcerative colitis three years prior and had gone through major surgery to remove my colon. I talked about how much it meant to me to be healthy enough to climb Rainier. However, I didn’t mention any details about the surgery or the fact that I had a stoma or wore an ostomy appliance.
As I left the meeting, I felt disappointed in myself for being vague about my surgery type and not talking more openly about my ostomy. How could I have let such a good opportunity to spread awareness slip by?
That is when it hit me. I didn’t feel like talking about my ostomy in this situation– not because I was ashamed, but because I didn’t want it to define me on the climb. After all, my stoma was really such a small part of me in the bigger picture of my life.
As it turned out, I did succeed in spreading the word about ostomies on my trip–it just happened a little more quietly and gradually than I had originally planned. I ended up having many great one-on-one conversations about my ostomy with most of my teammates when the topic of surgery came up. These small chats with individuals did just as much to spread awareness as a bigger announcement would have. I have also formed lasting friendships with some of my Rainier co-climbers and they continue to learn more about my life with an ostomy as time goes on.
Most importantly, my ostomy made its way to its rightful place on my climbing adventure–in the background. It didn’t become too much of a focus, and my thoughts and energy were left to more important things like cheering on teammates, taking in the beauty of the landscape and feeling the strength of my body making its way up the mountain.
So worry not if you are shy when talking about your stoma. Ostomy awareness comes in many forms: from a grand campaign to a small heartfelt conversation with a friend.
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.”
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!
Some of you may already know from my Facebook page that I recently experienced a kidney stone. I am sharing a few more details about the experience here on the blog as dehydration is one of the challenges of having an ileostomy and is something that can contribute to stone formation.
On Sunday, November 3rd, the NOAA forecast called for gorgeous weather. Doug and I had planned to head to the local crag for some climbing. Instead I woke up at 4:30 a.m. with a strange pain in my groin area. Doug heard me stirring, but since the pain was pretty minor, I told him to go back to sleep while I got up to make myself some tea and take a warm shower. Perhaps that would help it go away. I figured maybe I had just pulled a deep muscle, as I had gone for a pretty hard run the evening prior.
When I was in the shower, the pain started to get worse and it was strange because it felt like I already had to urinate again even though I had just gone when I got up. Great, I thought. I bet I am dealing with a urinary tract infection. I noted in my head that if things didn’t get better, I would schedule an appointment to see the doctor when the weekend was over.
After I got out of the shower, I sat down to go to the bathroom and suddenly felt an extremely sharp pain explode in my left flank. I knew right away that I was probably dealing with a kidney stone. I had had one 14 years ago and the pain was reminiscent of that experience. I also knew that this would likely require a trip to the ER. I started to make my way around the house to gather my insurance card, clothes, spare ostomy supply kit and other things I might need. I got about two minutes into that endeavor before I was brought to my knees by an even more intense pain. I crawled up the stairs and yelled for Doug to wake up and help me.
Seasoned from the days when I would wake up screaming from Remicade-induced joint pain or the times when I needed to be taken to the hospital late at night for UC flares, Doug sprang out of bed and into action at top speed as if he had rehearsed it 100 times. He helped me get dressed and he held my hair back when I began to vomit from the pain. I am not sure how I managed to walk on two feet out to the car, but soon we were zooming down the road to the hospital. Curled up in the front seat, I tried to use the mindfullness meditation techniques I had learned after surgery, and I attempted to focus on each breath instead of the waves of pain and nausea I was experiencing. When we got to the ER, Doug ran in to get a wheelchair while I waited doubled-over next to the car. A nurse heading in to start her shift rushed over to help. Within minutes, I was lying in a bed hooked up to an IV with some much needed Dilaudid.
During my eight hours in the ER, the pain was so intense that I still hurt a lot even with the pain medication. The doctor decided to order a CT scan to see how big the stone was. Fortunately, it was 4mm: a size that I could likely pass on my own. However, I still couldn’t be released from the hospital until the stone moved to a place that was a bit less painful. I was sent home when I could finally hold down some Vicodin pills without throwing up. Before leaving, I was told the the CT scan also showed two more 4mm stones–one in each kidney. They couldn’t tell me if, or when, those would decide to make their way down the ureters.
When I got back to our house, Doug made me endless cups of herbal tea and I watched at least two tear-jerker dramas on Netflix which is one of my tried and true methods of feeling better. Every time I would get up to urinate, I would eagerly look in my strainer to see if the stone had passed. Finally, first thing the next morning, it popped out. I was so happy to see that little rock. It reminded me of a precious nugget in a gold pan! Once the stone passed, I had instant relief and was back to running and hiking within a couple of days.
My stone was sent to the lab to be analyzed later that week and I discovered it was the common calcium oxalate variety. I was given a sheet with recommendations for fluid intake and also a list of high-oxalate foods to avoid. Unfortunately, these foods are currently things that make up a larger portion of my diet: spinach, nuts, peanut butter, quinoa, legumes, oatmeal, berries, almond flour (which is a gluten-free baking staple) and chocolate. These are all things I eat a lot because I love them and I thought they were also good for me (well … except for the chocolate). Another thing I am supposed to avoid is salt. This is hard because when I exclude salt from my diet, I start to feel dizzy, weak and nauseated. Due to this and the fact that my blood pressure has gotten very low at times, my doctor recommended last year that I increase my sodium intake–especially when I am active. I feel that an appointment with a dietician may be in order to find out how to best manage having both an ileostomy and a predisposition to kidney stones.
While I wait for an upcoming follow-up appointment, I have been doing a little bit of research on kidney stones for a better understanding. I read that those with IBD and/or ileostomies can be prone to kidney stones due to the way these conditions affect urine volume, urine pH and calcium and oxalate excretion in the body. Interestingly, the calcium oxalate stone I had 14 years ago occurred at the same time I first developed ulcerative colitis symptoms. I am not sure if this is a mere coincidence, but definitely something to ponder.
The take-home message with all of this is that I need to drink a lot more water. I usually try to take in 3-4 liters in a normal day (more when I am doing something active). However, I also know that I have gotten a bit complacent with my hydration. Other than a few isolated times, I haven’t really felt dehydrated since surgery so I figured I was doing okay with my water intake. There were even a few times that I left my water behind on short runs because I thought I felt fine without it. I also got careless about drinking enough at work, oftentimes returning from leading a program to find the water bottle in my pack still full. I guess rather than giving me subtle signs that I needed more H2O, my body decided to give me a huge wake-up call in the form of a kidney stone. It is a lesson I won’t soon forget. In fact, I think it is time to go have a glass of water right now!
When I woke up this morning, I wasn’t sure how to celebrate my 3-year stomaversary. As I made breakfast, I tossed around some ideas. I thought about going to Zumba like I usually did on Friday evenings but it didn’t feel like it honored the specialness of the day enough. I considered taking a sketching excursion, but I really wanted to do something active. Soon the ideal activity popped into my head: I would go on a trail run! Though I recently started running again after a year-long hiatus due to hip woes, I hadn’t yet been off the road. I quickly formulated a plan in my head. After work I would stop at a local park and do my favorite trail running loop and then I would meet Doug in town for a celebratory dinner.
When I climb, I am only thinking about the rock in front of me. When I do yoga, I am focused on my breath. Running is one activity where I can let my mind travel on a whim. On the anniversary of my ostomy, I really wanted to have a chance to contemplate the positive impact that Wilbur the stoma has had on my life. A long run through the gorgeous landscape would provide the perfect opportunity to do that.
Sometimes I ask myself why it is so important for me to celebrate my ostomy surgery date. I am sure if I had elbow surgery I might note the anniversary as it approached each year, but I don’t know that I would feel the need to set aside time to reflect on the experience and do something special to commemorate it.
When I was in the hospital for 16 days with my final UC flare, many doctors and nurses passed through my room and I had a lot of great conversations about my desire to have permanent ileostomy surgery. There were so many varying thoughts and opinions on the matter. I remember several individuals commenting on the fact that, at age 38, I was awfully young to be considering a permanent ileostomy. Why wouldn’t I want to give the biologics a longer try? If I really wanted surgery, why not at least try a j-pouch? Was I sure I wanted to wear an ostomy pouch for the rest of my life?
Trying to justify my choice to others was extremely difficult. I remember having a heartfelt conversation with my GI doctor and IBD nurse about the things I valued in life and why I thought the ileostomy was the best choice for me. My reasons were often hard to put into words, but inside my heart was screaming. I just want my life back!
My life. The one that included hanging out with my hubby in the mountains and on rock faces. The one that wanted to be able to enjoy a fun dinner out with family and friends without UC food worries. The one that included teaching others about nature out on the trails in my job as a naturalist. I saw the permanent ileostomy as the fastest, least complicated and most predictable way of getting back to the things I loved the most. I never felt that I was too young for surgery. Instead, I felt that I was too young to not take a difficult but important step to get my quality of life back.
So every year, on November 8th, I feel the profound desire to reflect on and celebrate that big decision. It isn’t only a time to honor all of the amazing things I have done in the past three years and my renewed health — it is a celebration of my ability to listen to my heart and follow the treatment path that I felt was right for 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.
Lately I have become part octopus, part mountain goat and part fish.
The octopus part of me has been juggling tasks at work like crazy. I spent the last couple of months organizing a big festival while also having a bunch of other programs to design and lead. One weekend I was teaching a nature-sketching workshop, the next a toddler class on toads. When I am done typing this post I need to practice my guitar for an upcoming campfire program. I have longed to come home and do something relaxing after this whirlwind, but that is not in the cards this summer. What is on the agenda is Rainier and I need to use every spare minute getting my body ready for the climb.
This leads me to my mountain goat side. Just about every weekend, Doug, his dad and I have climbed a 13,000- or 14,000-foot peak. Each time we do one of the hikes, we have been increasing the weight in our backpacks. Our last hike took us to 14,141-foot South Mt. Elbert. The hike was around 10 miles round trip and I was able to carry 45 pounds with 4,500 feet of elevation gain. I felt really strong and was ecstatic with the accomplishment because this is similar to what I will have to do on Rainier. I still have just over a month of training time before the trip so the plan is to keep doing hikes of this nature, including a few overnight trips, so that we can begin to move more quickly and efficiently on steep terrain with heavy packs. Some evenings after work I have also been going up to the Flatirons in Boulder, CO to hike some shorter and lower (though still steep) peaks.
So far, my joints have been doing great through my training regime. Part of this has to do with the comprehensive physical therapy program I am on. Between my shoulder, hip and Achilles exercises, I spend about 45 minutes most days on physical therapy. It taxes my schedule and makes me stay up later on some nights than I would like, but the benefits have been huge.
The other reason I think that my joints have been doing so well is that I discovered a new exercise: deep-water running. Hiking one or two big peaks each week with a heavy pack is hard on my joints, so in between I have decided to skip running, climbing, zumba and even biking to train as these all make my Achilles tendonitis flare up. I know I will return to all these activities when I get back from Rainier as my Achilles is basically already healed. However, for now I just don’t want to risk re-injuring it since things are going so well and I am able to hike long distances with elevation gain again. I had tried swimming to increase fitness, but the repetitive arm motions aggravated the avascular necrosis in my shoulder. I knew that I had to complement the long weekend hikes with something in order to get enough cardiovascular training in mid-week. But what activity?
I took to the internet to get some ideas and there I discovered the perfect training activity: deep-water running. Doing this exercise would help me build up cardiovascular fitness and muscle strength while giving my joints a chance to rest from the long hikes I was also doing. A quick Google search revealed several instructional videos on deep-water running. and it looked pretty easy. It basically involved putting on a floatation belt, going to the deep end of a pool and running almost like you would on land. The running form ends up being slightly different, but the videos provided enough guidelines that I felt confident to give it a go.
The first time I ventured to the gym to try the new activity I felt awkward because I didn’t travel very far when running in the deep end of a pool. On land, when you increase your running speed and intensity you generally travel a much greater distance. In the the pool, I can run as hard as possible and only travel 15 feet. It reminds me of crazy nightmares where I am being chased by ghosts, monsters or bandits and I am running really fast to get away but not getting anywhere. When I exhaust the length of the deep end, I turn around and head the other direction.
Running in small circles in this way doesn’t feel very interesting compared to running on a scenic trail, but I have to remind myself that it is really no different than running on a treadmill. However, the cardiovascular benefits are huge. Deep-water running really gets the heart rate up. Not to mention that the resistance the water provides has helped me build muscle–and not just in my legs. I move my arms underwater just like I do when I run on land, but because the resistance is so much greater, I have noticed my arms are getting a lot stronger too.
As on land, one has to pay attention to their running form in the water. I find that if I am getting lazy about form, I will start treading water instead of running. Treading water is not nearly as strenuous as running and does not get my heart rate up to an adequate training level. To make sure I am keeping my form, I will actually close my eyes and picture myself running on a trail or road and try to mimic that movement in the pool. Another trick that works well for me is to pick a stationary object on the edge of the pool and pretend it is another runner in a race that I am trying to catch. Both of these things help ensure that I stay in good form and keep my heart rate up.
For workouts, I usually deep-water run for about 45 minutes to an hour and then soak in the hot tub for 15 minutes which feels amazing on my joints. I have been deep-water running 2-3 times a week. A lot of people may be wondering if this influences my ostomy appliance wear-time. I find that being in the pool and hot tub this much does not affect my appliance’s ability to adhere. However, I change my appliance every three to four days regardless of what activities I do. Perhaps if someone was trying to get a seven-day wear-time, swimming might shorten it a bit.
I also do not have to do anything different to get my appliance to stay on in the pool. I basically jump in with my wafer as is (my wafer method is pictured in this post). Some people who have had issues with their appliances staying on in the water have great luck with products such as Sure Seals and Coloplast Brava Elastic Barrier Strip. I have tried both and they work well. I just find that my appliance sticks fine without them for the amount of swimming I do. If I were to take a beach vacation or a trip to a water park where I was in the water all day I would definitely use these. As far as swimming attire when I am deep-water running, I wear a variety of tankini tops with swim shorts and then an Ostomy Secrets Swim Wrap which covers the part of my pouch that sticks out above the low-rise swim shorts.
If you are looking for a gentle-on-the-joints exercise to gain strength I would recommend deep-water running. I only wish I had discovered this activity sooner after surgery. It would have been a great low-impact way to get back into shape once my incision was healed and I could return to water sports.
For now, it has become this octopus-mountain goat-fish’s best option for getting in shape for Rainier. It fits into the busy work schedule, is easy on the joints, and gets the heart pumping. I am feeling more optimistic then ever that as long as the weather cooperates for our ascent, I will be strong enough to stand on that summit.
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.
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.
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.
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.
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.
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.
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!