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.
18 thoughts on “The stars aligned for my trip up Rainier (feat. new video)”
Wow. I always thought you were inspirational. Now, climbing Mt Rainier..you are even more inspirational. I know that was no easy feat but you show that IBD shouldn’t stop anyone from doing anything they want to. My challenge right now is to lose weight. I have been struggling with it, but knowing that you could do this climb, my challenge seems very little and I know now I can accomplish it.
I am so glad you had fun and were able to do the hike with no issues. Keep on living your dream and inspiring others.
P.S. Thank you for making me miss the Northwest US now 🙂 I always loved it and want to go back to visit. One day.
Thanks Jeffrey! It was amazing being up there. The summit day itself was challenging, but in many ways the training was the hardest part of the whole thing. All those times I had to get up at 1:00 a.m. to climb a peak or head to the gym after a long day at work and then try to fit all the other things I needed to get done into that training schedule– it was stressful at times!!! However, whenever I felt like skipping a workout for no valid reason, I would picture myself strongly climbing the peak and knew that the only way I would make that happen was to keep up the hard work. I know you can reach your goal as well. Keep envisioning success!
Yes– the Northwest is gorgeous. After the climb we spent a week on the Olympic Peninsula and then some time in Seattle. It was so fun!
AMAZING! Thanks for sharing your photos and story! Love your posts! You are a very strong woman and a great example of what we ostomates can do! Keep climbing!
Thank you! I will keep climbing. Just did a long rock route last weekend and look forward to heading to the crags more in the upcoming weeks. After training so hard for a year to do Rainier, it feels sort of strange to relax and not have a major goal. Still trying to figure out what the next big dream will be.
Totally awesome and very inspiring!
Discovering what I am capable of after surgery has been an amazing journey. Still dreaming up what the next big adventure will be.
I lay in bed last night waiting for my painkillers to kick in reading this. I am in total awe of you. What an incredible story and I have to say that you have inspired me beyond anything or anyone I have met, seen or read about since my operation.
I have decided to get off my arse and get cracking with some of my challenges. The only way for me to do this is to book things really soon. Thank you for inspiring me, can’t wait to read about your next challenge.
Thank you for the kind words. They mean so much! Yes- getting something on the calendar to work towards can really help motivate. Just remember that it is okay to ease into things slowly and set small goals at first. Though I am doing bigger climbs now, it wasn’t that way in the beginning. I started doing really easy hikes at first and worked up from there. I didn’t even rock climb until almost a year after surgery. Each small accomplishment became a stepping stone to getting stronger and moving on to the next, more challenging thing. Even those smaller achievements in the beginning felt so amazing. I remember how awesome it felt to go from only being able to walk a ¼ mile to being strong enough to walk a full one. It was so important to be patient and let my body heal while also pushing myself bit by bit. You will get there!!! Wishing you the best as you set out to reach your goals.
Your strength and motivation are truly inspirational.
I thank you for this account of your successful ascent of Mt. Rainier. You have accomplished the, (almost), impossible!!!!!
Thanks again Les! Hope your research into a possible climb is going well?
Heidi – you are such an inspiration!!! As a new ostomate still getting my mind wrapped around my new life, you help me to realize that whatever the limitations I have in my life, an ostomy is certainly Not one of them! Congrats on your summit of Rainier!
Thanks Kelly! Hang in there. I remember that my ostomy felt limiting at first when I was still healing up from from surgery and learning to manage it— but those feelings were so temporary. Soon I was a pro at dealing with my ostomy and life felt completely normal again. I realized that anything is possible after surgery… a message that becomes more and more clear to me every time I reach a new goal. Figuring out what one is capable of after surgery can be an incredibly profound experience. Best wishes in your journey!
Hi Heidi! I had no idea how intense this “hike” would be! Ha – LOL no. I realized it was long, but I didn’t know you would be camping – in snow. Hiking on Glaciers. Crossing scary ladders! Whew! Looks like you had a great time and all the training paid off! Very Exciting! Congrats and thanks for sharing! 🙂
Still getting caught up on all my blog comments. Didn’t help that our internet just started working after being out for four days due to the floods. Yes the climb up Rainier was full of all sorts of fun and excitement. Our guides kept saying the route was a little complex this year which was code for “you are going to have to cross scary ladders over big melted out crevasses”. I actually thought it was pretty cool though– so beautiful and unlike anything I had ever seen. Not sure what the next goal should be? Maybe to relax? Nah… that will never happen ha ha. Some painting time would be nice though and you have been inspiring me with your little paintings!
Congratulations, and thanks for sharing your experience! I can relate to your description of wanting to turn and catch many “last” looks at the mountain. I’m so glad your planning and hard work paid off, and the weather mostly cooperated.
I have a couple of hiking related questions I’m hoping you can help with.
1. How do you decide how much extra water you need to carry on your hikes? Do you have a formula or calculation to use (say 25% more than your guides recommend to the rest of the group for the day) or is it an educated guess as there are too many variables to consider?
2. Do you have any suggestions for wearing/fitting a backpack with an ileostomy? My stoma is well sited and clear of the straps but the hip belt cuts midway across my pouch and stops output draining to the bottom of the bag. I wondered about putting the pouch on at an angle but if I were to wear the pouch more horizontally, I would not be able to wear the belt that attaches to the pouch and goes around my waist to support it. In spite of having an ileo rather than colostomy, I’m prone to pancaking anyway (with attendant blow outs and leaking) so feel rather apprehensive when the bag isn’t draining properly. I’d appreciate any suggestions.
By the way, I am so glad I decided on an ileostomy. Being continently incontinent with a stoma and pouch has led to an enormous improvement in my quality of life.
Sorry it took me so long to get back. My schedule has been swamped lately and I have been having trouble finding chunks of time to devote to my blog and comments. Thanks for your patience.
1. As far as water– knowing what to bring involves some trial and error so I always pack a little more than I think I will drink. I can always dump it out later if it seems like I am carrying more than I need. As a general rule, I need to bring about one liter extra from what my hiking companions bring on a particular adventure. In other words, if they bring two liters– I bring three. For Rainier, the guide service was great at explaining to me exactly what conditions I should expect on the mountain and when I would have a chance to refill my water and when I should carry a little extra. As usual, it seemed like my one liter extra plan worked well. For instance, on our 6-hour hike up to Camp Muir on the first day I carried 3 liters when my teammates carried two. It was the same for the summit day. I drank three liters from high camp to the summit and back down to the high camp. My teammates all drank two liters. I drank 3-4 additional liters when heading back down from high camp to the trailhead so that ended up being roughly seven liters total for the 16-hour hiking day. The one exception to all of this is that if it is going to be super hot out– I may bring twice as much water. It is not unusual for me to carry a gallon on long hikes where I can’t refill anywhere. If I know I am going to be near a good water source on backcountry dayhikes in the mountains, I sometimes bring a water filter or a small container of Potable Aqua iodine tablets to treat water. Than I don’t have to carry quite as much and can filter or treat water as I go.
Remember also to eat salty snacks when you are drinking this much water to keep your electrolytes balanced.
I will also mention that my small intestine took about 6 months to adapt to being able to take on some water absorbing capabilities and settle into pattern it is now in. Prior to 6 months, I dehydrated a lot more quickly and had to carry even more water.
2. My stoma and pouch sits well below my pack waist belt, so I have not had the issue with it cutting off flow. Have you tried any stoma guards such as Stomaplex or Ostomy Armor? It sounds like even with these the flow might be cut off, but it could be worth a shot. I talked with the guy who makes Ostomy Armor at a product fair and it sounded like he was very open to making custom guards too. I wonder if you explained your predicament to him if he would have any suggestions. Another option might be to put some padding under the area of the pack that rests on your hips. Perhaps this would elevate the strap enough that it wouldn’t cut off the flow? Or perhaps try some different brands of packs to see if any fit better around that area? I don’t wear an elastic belt to hold my pouch on as it seems to stay on fine without. I wonder if you ditched that and used a Nu Hope hernia prevention belt while hiking (which also holds the wafer and pouch down pretty well) if you could then turn your pouch sideways? I wish I had some better suggestions. Just keep experimenting and you are bound to find something that works.
I am so glad to hear that life has improved for you after surgery!
Heidi, thanks very much for your reply, including the reminder re salt. I’ll try some of those suggestions – padding the strap was not something that had occurred to me and is something I can try right away.