Ostomy awareness comes in small forms too

Today is the one-year anniversary of my Mt. Rainier climb. I can’t believe 12 months have gone by since I stood on the summit. When I returned from the climb, I blogged about the adventure. However, I had intended to write a couple more posts related to the trip. The weeks sped by and I never got around to it. What better time to revisit the topic than on this anniversary?

At our high camp the night before our summit attempt
At the Ingraham Flats high camp the night before our summit attempt

As someone who has a big passion for spreading ostomy awareness, I viewed my trip to Rainier as a great opportunity to share information about ostomies with others and show that anything is possible with a stoma. In fact, as I walked into our pre-trip meeting at the guide service, I had all the things I wanted share with my teammates during introductions neatly figured out in my head. The problem was, things didn’t go as planned.

As we sat in a circle and got ready to meet each other, the lead guide threw out some questions to break the ice and get us started: Tell us who you are, a little bit about your climbing experience and something weird about yourself, she said.

Something weird about myself? That wasn’t the introductory question I had hoped for. Everything I planned to say about my ostomy didn’t fit at all with the concept of weirdness. If anything, I wanted to talk about how normal life with an ostomy was. I came up with another silly non-ostomy-related answer for the question and scrambled to think of another way to bring up my surgery.

As I shared a little bit about my climbing experience in my intro, I did mention that I had been severely ill with ulcerative colitis three years prior and had gone through major surgery to remove my colon. I talked about how much it meant to me to be healthy enough to climb Rainier. However, I didn’t mention any details about the surgery or the fact that I had a stoma or wore an ostomy appliance.

As I left the meeting, I felt disappointed in myself for being vague about my surgery type and not talking more openly about my ostomy. How could I have let such a good opportunity to spread awareness slip by?

That is when it hit me. I didn’t feel like talking about my ostomy in this situation– not because I was ashamed, but because I didn’t want it to define me on the climb. After all, my stoma was really such a small part of me in the bigger picture of my life.

As it turned out, I did succeed in spreading the word about ostomies on my trip–it just happened a little more quietly and gradually than I had originally planned. I ended up having many great one-on-one conversations about my ostomy with most of my teammates when the topic of surgery came up. These small chats with individuals did just as much to spread awareness as a bigger announcement would have. I have also formed lasting friendships with some of my Rainier co-climbers and they continue to learn more about my life with an ostomy as time goes on.

I was more comfortable talking with others one-on-one about my ostomy.
I was more comfortable talking with others one-on-one about my ostomy.

Most importantly, my ostomy made its way to its rightful place on my climbing adventure–in the background. It didn’t become too much of a focus, and my thoughts and energy were left to more important things like cheering on teammates, taking in the beauty of the landscape and feeling the strength of my body making its way up the mountain.

So worry not if you are shy when talking about your stoma. Ostomy awareness comes in many forms:  from a grand campaign to a small heartfelt conversation with a friend.

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The stars aligned for my trip up Rainier (feat. new video)

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.

Our team.
Our team.

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.

Our team rests before roping up and heading to high camp.
Taking a few minutes to rest before roping up and heading to high camp.

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.

Making our way to high camp a couple of hours before the severe storm blows in.
Making our way to high camp a couple of hours before the severe storm blows in. The crevasses were scary but beautiful.
My father-in-law Peter checks out the spectacular post-storm clouds.
My father-in-law Peter checks out the spectacular post-storm clouds.
Home sweet home at high camp.
Home sweet home at our high camp at the “Flats” on the Ingraham Glacier.

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.

Peter, Doug and I on the top of Rainier!
Peter, Doug and I on the top of Rainier! They can’t be seen in the photo, but some ominous storm clouds were gathering to the south. Fortunately they never materialized into much and we had good conditions on the descent.
Descending the upper slopes of the mountain.
Descending the upper slopes of the mountain.
Another team makes its way across the most technical part of the route. A climber crossing a ladder over a large crevasse can be seen in the center of the photo.
Another team makes its way down the route. A climber crossing a ladder over a large crevasse can be seen in the center of the photo.
Doug makes his way across a ladder that bridges a gaping crevasse.
Doug makes his way across a ladder that bridges a gaping crevasse.

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?!

Chatting with Phil Ershler, co-owner of International Mountain Guides, at a rest break.
Chatting with Phil Ershler, co-owner of International Mountain Guides, at a rest break.

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.

On the way to the high camp, we had to move quickly through an area prone to rockfall.
As we crossed the Cowlitz Glacier on the way to high camp, we had to move quickly through an area prone to rockfall.

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.