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.

Rainier is on the front burner

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.

On the summit of Mt. Bierstadt at 9:30 a.m. in what we thought was just a rogue misty fog cloud rolling through. Moments after this photo was taken, Doug's hair started to stand on end and our poles started buzzing. We never ran so fast down a mountain.
On the summit of 14,060 ft. Mt. Bierstadt at 9:30 a.m. in what we thought was just a rogue, misty cloud rolling through. Moments after this photo was taken, Doug’s hair started to stand on end and our poles began to buzz. We never ran so fast down a mountain.
Gorgeous views often come with early starts. The moon sets over the saddle between Grays and Torreys peaks.
Breathtaking views often come with early starts. The moon sets over the saddle between 14,270 ft. Grays Peak and 14,267 ft. Torreys Peak.
Taking a breather and soaking in the view after hoofing it up a steep gully on our acent of Mt. Evans with a 45 pound pack.
Taking a breather and soaking in the view after hoofing it up a steep gully on our ascent of 14,264 ft. Mt. Evans with a 45-pound pack. We make our packs heavy for training by carrying bags full of water. I actually threw in a few rocks for extra weight before heading up this slope:) I definitely won’t be doing that on Rainier!
Resting with my 55 lb pack on an 3-day backpacking trip to climb Mt. of the Holy Cross. After a night of sleep at basecamp, our route asended the ridge on the right side.
Resting with my 55 lb. pack on a three-day backpacking trip to climb 14,005 ft. Mount of the Holy Cross. After a night of sleep at base camp we ascended the ridge on the right side of the photo.
A gorgeous early morning sunlight greets us mid-route after starting our hike up Holy Cross at 3 a.m.
Spectacular early morning sunlight greets us mid-route after starting our hike up Mount of the Holy Cross at 3 a.m.
On the summit of Mt. of the Holy Cross.
On the summit of 14,005 ft.  Mount of the Holy Cross.
Descending from Notch Mountain. Mt. of the Holy Cross, which we hiked the day before, can be seen in the background.
Descending from 13, 237 ft. Notch Mountain the day after ascending Mount of the Holy Cross–obvious in the background.
Ascending Mt. Yale with my monster pack in some early morning fog.
Ascending Mt. Yale with my monster pack in some early morning fog.
No Views from the summit of Mt. Yale on this day.
There were no views from the summit of 14, 196 ft. Mt. Yale on this day.
Yet another 3 a.m. alpine start as we leave for Turner Peak.
Yet another 3 a.m. alpine start as we leave for the 13er called Turner Peak, the day after hiking Mt. Yale.
On the summit of Turner Peak. The day before we climbed Mt Yale which is the peak in the center behind the mist cloud.
On the summit of 13,233 ft. Turner Peak. The day before we climbed Mt. Yale which is the peak in the center behind the mist cloud.
For our final training climb we did a chain of peaks: Mt. Chapin, Mt. Chiquita and Mt. Ypsilon. Just for fun we reascended Chiquita on the way back to throw in a little extra elevation gain.
For our final training hike, we did a chain of peaks: 12,454 ft. Mt. Chapin, 13,069 ft. Mt. Chiquita and 13,514 ft. Ypsilon Mountain in Rocky Mountain National Park. Just for fun, we reascended Chiquita on the way back to throw in a little extra elevation gain.
On the summit of Mt. Ypsilon. The next time we are at this elevation will be during our Mt. Rainier trip.
On the summit of 13,514 ft. Ypsilon Mountain. The next time we will be at this elevation will be on Mt. Rainier.

From peak to pool

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.

On the summit of 13,5751 Rosalie Peak on May 26, 2013.
On the summit of 13,5751 Rosalie Peak on May 26, 2013.
Sneaking in a 7 mile hike of 8,144' Green Mountain after work on May 30, 2013. The sun was quickly setting!
Sneaking in a seven-mile hike of 8,144-foot Green Mountain after work on May 30, 2013. The sun was quickly setting!
Summit-South-Elbert-web-ver
A few days later on June 2, 2013 we made it to the summit of 14,141-foot South Mt. Elbert.
And tagged 13,588' Mt. Cosgriff on the way down.
We tagged 13,588-foot Mt. Cosgriff on the way down.

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.

Suited up and ready to go in my floatation belt.
Suited up and ready to go in my floatation belt.
With the belt keeping me afloat, I mimic the running motion I would do on land.
With the belt keeping me afloat, I mimic the running motion I would do on land.

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.

How to select ostomy pouch styles for the outdoors

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.

The ridge between Loveland Pass and Mount Sniktau provided few places to empty a pouch.
The ridge between Loveland Pass and Mount Sniktau provided few places to empty a pouch.

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.

In a one-piece ostomy system, the wafer is permanently attached to the pouch. Because of this, swapping out different pouch styles on the same wafer is impossible.
In a one-piece ostomy system, the wafer is permanently attached to the pouch. Because of this, swapping out different pouch styles on the same wafer is impossible. Pictured is a Coloplast SenSura X-Pro drainable one-piece appliance.

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.

With a two-piece system, the pouches can be separated from the wafer. On the right is a drainable pouch and on the left a closed-end one.
With a two-piece system, the pouches can be separated from the wafer and swapped out. On the left is a drainable pouch and on the right is a closed-end one. Pictured clockwise is a Convatec Sur-fit Natura drainable pouch with an Invisiclose tail, a closed-end pouch, and a Durahesive cut-to-fit wafer.

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.

In adhesive coupling two-piece systems, the wafers and pouches stick together with an sticky ring. They are low profile, but I find them messy to swap out when on outdoor trips.
In adhesive coupling two-piece systems, the wafers and pouches adhere together with an sticky ring. They are wonderfully low profile, but I find them messy to swap out when on outdoor trips. Pictured on the left is a Convatec Esteem Synergy adhesive coupling system and on the right is a Coloplast SenSura Flex wafer and pouch.

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.

On the summit of Sniktau. It was really cold and windy up there with very little shelter.
On the summit of Sniktau. It was really cold and windy up there with very little shelter.

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.

This is the spot where I swapped out my pouch. By the time Doug caught up and snapped this photo, I was finished managing my ostomy and was changing my camera battery. However, from a distance swapping out a pouch doesn't look much different than this. It can be done very discreetly.
This is the spot along the trail where I switched out my pouch. By the time Doug caught up and snapped this photo, I was already finished managing my ostomy and was changing my camera battery. However, from a distance, swapping out a pouch doesn’t look much different than this. It can be done very discreetly.

Wilbur the stoma gets a biopsy

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!

So honored!

It always feels good to get recognized for something, but it is extra special when an award comes from a peer. These folks know the amazing amount of work and passion that can go into a project because they  devote their time and energy to the similar things. About a month ago, fellow blogger Joyce Lameire nominated me for a Versatile Blogger Award. I am incredibly honored that she thought of me. Joyce has both ulcerative colitis and ankylosing spondylitis (AS). Joyce’s blog, ankysponwhat.com features posts about treatments, managing pain and AS news. Lately Joyce has been writing a series of posts that delve into her history with the disease. For those who don’t know, ankylosing spondylitis is often associated with UC. Though I don’t have AS, I have been learning a lot about the disease through her site and would highly recommend checking it out.

In order to accept a Versatile Blogger Award, the following rules must be followed:

  • Display the award certificate on your website.
  • Announce your win with a post and link to whoever presented you with the award.
  • Present 15 awards to deserving bloggers.
  • Drop them a comment to tip them off after you have linked them in the post.
  • Post 7 interesting things about yourself.

It should be no surprise that most of the blogs I follow are IBD-related. There are so many blogs that I absolutely love but I won’t be able to include them all (the list would go on for pages). Here are are 15 of my favorites and the reasons I find them so special.

  • Full Frontal Ostomy Charis, long before we both had blogs, was the very first person that I reached out to online when I was facing ostomy surgery. She is a positive role model and I love her blog and all she does to spread ostomy and IBD awareness.
  • Blood Poop and Tears This is one of the very first blogs I read when I had IBD and then surgery. I love Jackie’s honest account of her life with IBD.
  • Girls with Guts This website and blog is put together by Charis and Jackie (who author the two blogs above). One of the site’s many features are stories of women who have strongly faced the challenges of IBD. Girls with Guts is a huge source of inspiration for me.
  • Inflamed and Untamed Sarah so often puts the exact things I am feeling into words. She does an amazing job of describing the emotional aspects of having IBD and many times I am brought to tears by her writing because I can relate to it so well.
  • Rollin with Outta Colon Cary is an avid cyclist with an ostomy and his blog posts are an artful blend of thoughts on biking, music, photography and the realities of living with an ostomy and the pain of chronic illness. Cary’s posts are full of depth and insight and really get me thinking.
  • Living Bigger with a Colostomy Paul is a fellow outdoor adventurer and I’m inspired by reading about all the things he does with his ostomy. His life is proof that an ostomy does not have to stop a person from doing the things they love.
  • Run Stronger Everyday Even though my running plans have been sidelined due to hip woes, I love reading Abby’s blog. She has been through ostomy surgery and now has a J-pouch. I am not sure when I will be able to return to running (definitely not before my Rainier climb since I can’t risk getting injured), but her blog helps keep me motivated for the day I once again lace up my shoes for a jog.
  • Living Life and Lovin’ It Megan is a newcomer to the ostomy blogging community. I love how she writes about her ostomy experiences in some posts and then things as diverse as chickens and pitcher plants in others. Life is a beautiful mix of so many things and her blog celebrates that.
  • Amazing Adventures- Ostomy Included I only recently discovered this ostomy-and IBD-related blog and am already hooked. Just reading the author’s story reminded me so much of my own—right down to the post-surgery incision complications that I frustratingly faced after surgery. I love this blogger’s adventurous spirit and thoughtful writing and can’t wait for future posts.
  • Gutless Cyclist The author of this blog has also had some health setbacks recently. Despite this, he stays positive and works hard to get back on his bike. Reading his posts fills me with inspiration.
  • Theflowrylife This blog was only started in November 2012, but is already one of my favorites. I love the author’s focus on mindfulness and enjoying the present moment.
  • Love for Mutant Guts It has been great to see Alyssa’s confidence as an IBD health activist grow through her blog. She always has a kind and encouraging word to say too.
  • A Guy with Crohn’s Jeffrey does a great job of spreading IBD awareness. I enjoy reading his posts on a wide variety of topics including gluten-free cooking. To top it off, Jeffrey recently took part in the WEGO Health Health Activist Writer’s Month Challenge and managed to write a post a day for 30 days. I sometimes have trouble writing a post every couple of weeks, so that is a major accomplishment!
  • Intense intestines When I first stumbled upon Brian’s blog I couldn’t believe it. Here was another outdoor-loving person who had gone through ostomy surgery one day after I had. The organization Brian started, The Intense Intestines Foundation, has grown to become one of the most incredible resources for those with IBD.
  • Squirt’s blog Donna is a fellow nature-loving ostomate with an adventurous spirit and that shines through in her blog. She does so much to spread ostomy awareness. I am pretty sure if Donna lived closer, we would be meeting up to explore forests, streams and fields on a regular basis.

Now for the seven interesting  tidbits about my life:

  • I have way too many hobbies. As if the plethora of outdoor sports I enjoy aren’t enough, I love drawing, painting, printmaking, journaling, sewing, tying fishing flies, storytelling, writing, drumming and playing the guitar. Whew! The upside–I can’t remember a time that I was ever really bored.
Drum circle fun.
Playing my djembe.
  • I can do an awesome squirrel voice. This comes in handy for the above-mentioned storytelling hobby and the many puppet shows I conduct for kids as a park naturalist.

    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters.
    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters. (Oh, and I also hand-sewed these three puppets.)
  • Weather fascinates me. Ever since I spotted a twister that came within ½ mile of my house as a child, I have been interested in weather. I have the National Weather Service radar bookmarked on my computer and could watch clouds all day. I was bummed that all my hospital room windows faced east when I was stuck there during my UC and surgery recovery. It drove me crazy to not be able to see the weather coming in from the west.
  • Social media wears me out. Though I enjoy public speaking and teaching, I am a total introvert at heart. I am the person at parties who you see having an in-depth conversation with someone in the corner instead of mingling. In the same way, I love interacting with people one and one through blog comments and emails. However, I definitely fall short in the realm of social media. The pace of Facebook and Twitter is crazy and by the time I process all the information and think of what I want to say, posts are already dead and buried. And I find writing within the 140 character limit of Twitter nearly impossible!
  • I drive a pink scooter. In an effort to keep my carbon footprint as small as possible, I make my 28-mile round-trip commute on my scooter when the weather cooperates (my bike gets 90-95 mpg). With my pink helmet and blond ponytail, I must look like Barbie going down the street because I often get waved to by little girls.
Heading to work on my scooter.
Heading to work on my scooter.
  • I love gummy candy. I try to eat healthy, but I have weakness for gummy bears, octopi, worms or whatever crazy-shaped creations I can find in the candy aisle.
  • I was a really creative kid. When I was a child, my parents set up art studios in the basement for my brothers and I, and stocked them with markers, paints, papers and all sorts of materials. I would spend hours down there drawing and creating art projects. I also used to develop my very own book order forms for my parents to fill out. Once they marked which titles they wanted, I would make little books and write a tale within the pages so that I could fill their order. My brothers and I also used to type up scripts and song sheets for shows and then perform them for our family.
Sitting in my homemade cardboard sleigh during a one of our Christmas productions.
Sitting in the homemade cardboard sleigh during act one of a Christmas production.
Act two involved some singing complete with a microphone. Now if only I actually could have carried a tune!
Act two involved singing in an elf costume (with a cool microphone)! Now if only I could have actually carried a tune.

Back in the wilds!

Heart pounding, quads burning and lungs barely able to keep up — I could not believe I was standing at 13,000 feet again. Yet there I was! Doug and I spent the weekend in Breckenridge with his parents. Our rental was a mere two miles from the Quandary Peak trailhead, so yesterday we decided to head up the trail to see how far we could get.

Doug and I take a break along the Quandary Peak trail.
Doug and I take a break along the Quandary Peak trail.

I had no intentions of making the summit, and just wanted to be out in the mountains moving my body again. With the sudden onset of groin pain in mid-January and an MRI in February that showed gluteal tendinosis in my hip, I had been doing lots of physical therapy and taking a break from hiking. In fact, I was starting to think that my Rainier attempt in July might not happen. I tried to keep my fitness up with biking and swimming (doggie paddling really… I cannot do any overhead swimming strokes because it hurts my shoulder avascular necrosis (AVN) too much). However, those activities hardly replicated the intensity of climbing big peaks with heavy gear at altitude.

Fortunately, last week I got some good news at a much-anticipated appointment with a new orthopedic surgeon. After looking at my MRI, he didn’t see anything in my hip except for the gluteal tendinosis. However, he does not think that the tendinosis is causing the groin pain I have been experiencing because that type of injury typically causes outer hip soreness. This makes sense as the physical therapy I have been doing for the last two months has really helped some of the pain in the outside of my hip, but did little for the groin. The bottom line is that the doctor did not know what was causing the soreness in that part of  my hip; the joint looks healthy. He said sometimes they really can’t find anything and oftentimes these issues resolve on their own with time. He thought it was fine to start training for Rainier again as long as the pain didn’t worsen.

I also talked to him a lot about my shoulder AVN. Though I really liked working with the doctor that diagnosed the condition back in December, this particular orthopedic surgeon has more experience working with patients who have AVN. After looking at my MRI, he felt the AVN in my shoulder may not cause me any further issues. He said the necrotic area is small and that most of the cases he has dealt with have involved a much larger percentage of the humeral head. As a result, it is quite possible that I won’t ever need a joint replacement. Of course, he did say the exact progression is impossible to predict. The doctor said I was really, really lucky that I have not developed AVN in my hip. He has never had a patient that had it in the shoulder that did not also have it in the hip. (Could I be this lucky?!) Though he said it is always possible to develop AVN in another joint at any time down the line, the more time that passes after taking steroids, the better the chance is that this won’t happen. He mentioned that there are a lot of factors at play with steroid-induced AVN that doctors don’t understand. For instance, the window of time for developing AVN after stopping steroids appears to be a lot longer for some people and with some diseases than others.

It was a huge relief leaving the doctor’s office knowing that I had just been given the okay to get back to all my activities. And with my shoulder also feeling so much better, I happily started planning all my new adventures.

Unfortunately, my body wasn’t quite ready to cooperate. The morning after my appointment, I was bending over to pick something up off the floor and I felt a pull in my Achilles tendon. I was so disappointed. I had waited so long for that appointment with the new orthopedist and now I had developed an entirely new issue less than 24 hours later! This is so typical for me. There were many times when I was recovering from ostomy surgery when I would tell my surgeon everything was great at an appointment and then have something go wrong the following day.

Luckily, I had an appointment with my physical therapist that evening so I could at least discuss my latest joint woe with someone. He felt I had probably just strained the Achilles tendon a bit and gave me some stretches and strengthening exercises. Because my pain was minor, he thought I could still train as long as the movement of hiking didn’t irritate the tendon. Obviously if the issue starts to become more painful I will head back to the orthopedic doctor.

So, I wasn’t sure what to expect on the adventure yesterday. Much to my surprise, I felt great and ended up hiking around 5 miles round trip with a couple thousand feet elevation gain, making it to the 13,000′ shoulder of Quandary Peak. My Achilles did not hurt and my hip felt okay. A few times along the way I just stopped and listened to the beautiful sounds of being on a remote mountainside again. I could hear the wind in the tree branches and the snow crystals hitting my jacket and it felt amazing to be out there. I actually pinched myself a couple of times to make sure it wasn’t a dream. The feeling of happiness felt so similar to those first wilderness hikes after my ostomy surgery when I realized that I would still be able to do an activity I loved so much.

Returning from a post-lunch ostomy pouch swap. With the deep snow, I use closed-end pouches instead of drainables and then pack out the full one.
Returning from a post-lunch ostomy pouch swap. With the deep snow, I use closed-end pouches instead of drainables and then packed out the full ones.
Nope. I am not dreaming and pinch myself just to make sure!
Nope. I was not dreaming and I pinched myself just to make sure!
We reached a high point of 13,000' on the shoulder of Quandary Peak. The summit can be seen in the distance.
We reached a high point of 13,000′ on the shoulder of Quandary Peak just as another snow squall came in. The summit can be seen in the distance.

I look forward to the many mountain trips on the horizon as I start to train for Rainier again. If If I end up not summiting the big peak due to all the recent training hiccups, I will be okay with that. If the fun I had today is any indication, just being on that massive and beautiful mountain is going to be a breathtaking experience in and of itself.

Relaxing in the hot tub after our hike with a perfect view of the peak.
Relaxing in the hot tub after our hike with a perfect view of the peak.

Back to the GI doctor’s office

Monday I found myself in a place that I hadn’t been to for a very long time: my GI doctor’s office. After having permanent ileostomy surgery for my UC, I wasn’t sure if I would ever need to be seen there again. However, for the past ten months, I have had canker sore-like ulcers show up on my stoma off and on in different places. I actually noticed the very first of these ulcers while changing my appliance on a backpacking trip last June. I remember calling for Doug through the woods so he could come snap a photo of it. I think he thought I was being cornered by a bear! (joking)

That ulcer was rather deep, and after showing a photo of it to my surgeon, he thought it might be trauma-related and caused by a nick in my stoma. It healed up in a few weeks, and I thought that was that. However, in the autumn I got a couple more ulcers, and since that time, I have had more of them show up and at more frequent intervals. In fact, I have a new one today. The ulcers heal quickly (sometimes too quickly– it is hard to time an appointment with my doctor when they are actually there) and don’t seem to cause any problems. Because the ulcers are a recurring issue, I shared more photos of them with my surgeon and he suggested I have them further investigated at my GI doctor’s office.

I have an awesome GI doctor, but for much of my life with ulcerative colitis, I worked with an equally amazing IBD nurse practitioner. When you have chronic conditions and end up seeing your doctors and nurses again and again, you can really develop a strong and trusting bond with them. My nurse practitioner is a very caring individual and she has worked with me during my worst UC moments. I hadn’t seen her since I was extremely ill and lying in a hospital bed during my final severe UC flare two and a half years ago. It was great seeing her again under much better health! Of course, last week’s ulcers had conveniently healed just in time for the appointment, so I once again had to rely on photos of the ulcers to explain what was going on. Thank goodness Doug is a stoma portrait photographer extraordinaire and we have been documenting the ulcer activity pictorially for months.

After looking at the photos, my nurse felt that the ulcers could be a sign of active IBD. She didn’t call it Crohn’s disease, but said that the ulcers are likely caused by the same inflammation process involved in IBD in general. She talked about how many different genetic factors are showing up in research related to IBD. What is thought of as Crohn’s or ulcerative colitis could actually be a group of different diseases which makes things hard to pinpoint in some cases. (This is my recollection of what she said anyway… I am not the best at explaining medical stuff from memory.) Regardless of the name, the suggested treatment for me was the same: a low dose of Pentasa to see if it helped resolve the ulcers. If the drug does resolve the ulcers, it would be a sign that I am dealing with IBD. If  the ulcers would actually cooperate and show up when I am scheduled for an appointment, I could also get them biopsied to provide a more definitive diagnosis. There is also a possibility that the ulcers could be caused by a virus, but that is less likely due to the recurring nature and how long I have been experiencing them. All in all though, this is a really minor thing. The ulcers seem confined to just my stoma, no other symptoms come with them, and I feel great. My inflammatory markers were fine as well. My nurse said stoma ulcers do happen for many people without progressing up the intestines. That was great news to hear.

When I was sitting in the pharmacy waiting to have the prescription filled, I found myself reflecting on the possibility that my disease was returning– even if only mildly. The weird thing was– I was not worried about it at all. I always thought that finding out my IBD might be back would be terrible news. I would have expected to be scared, disappointed or something along those lines. However, now that I was actually facing that possibility, all I felt was a sense of calm. For someone who has been plagued by anxiety lately, this new found feeling of peace was refreshing.

I didn't expect to read "for inflammatory bowel disease" on a medication label again!
I didn’t expect to read “for inflammatory bowel disease” on a medication label again.

I really can’t put my finger on the one thing that has led to this new outlook. Be it bones or intestines, I am discovering that I am far less worried about my medical issues lately– so much so that I was able to stop taking anti-anxiety meds over a month ago. I went to see a counselor and also went to some anxiety management group sessions which have helped me look at things in a new way. My mindfulness meditation practice has been important in helping me focus on the present too. The positive thoughts and prayers sent by family and friends have also been paramount. I have also been more in touch with my spiritual side which has brought peace.

Another big source of comfort is knowing that I have been blessed with some of the most incredibly kind and skilled doctors and nurses on the planet. Not a day goes by when I don’t think about how grateful I am that everything somehow came together to have each of these individuals on my healthcare team. I know they truly care about my well-being. I can relax knowing that if things should get worse with any of my health conditions, I am in really good hands.

Overall, if I had to sum up the reason I am feeling so good about things lately in one word it would be this: trust.

I trust that I am strong enough to get through anything. I trust that my family and friends will be there to lean on. I trust that my medical team will do their absolute best to take good care of me. I trust that I will always be able to help others by sharing my experiences. And I trust that whatever path I find myself on, I will make it the best journey possible.

Reaching out (feat. new video)

Last Tuesday evening, I left work in a gorgeous swirl of falling snow but promptly got stuck in standstill traffic due to slippery road conditions. I half-thought of exiting the freeway and heading home, but the destination was too important and I knew that getting there would soon melt away any stress that had accumulated on the drive. In fact, it was almost guaranteed that I would leave the event in a good mood. I always do. So where was I heading that had me filled with such eager anticipation?

The fourth Tuesday of every month is my Ostomy Association of Metro Denver meeting. I started going to these meetings as soon as I was healed enough after surgery to get to them and quickly discovered how valuable they were. When you have a condition that is hard to talk about with most people, there is a feeling of instant comfort that comes from being surrounded by others who immediately understand what you are going through. A place where it is okay to talk about normally taboo subjects such as gas, rectums and bowel movements. Now that I have been attending the meetings for almost two years, I cannot imagine not having this support system in my life. I absolutely love talking to those who are facing or recovering from surgery and doing what I can to offer encouragement. I head home from every gathering wishing I had more time to talk to everyone and eager for next month’s meeting to arrive.

One thing that I hear many young people on IBD and ostomy internet forums say is how they often walk into such meetings and feel that they are the only one in their age group there. Many times these people don’t come back for this reason, and I think it is really unfortunate. Regardless of age, everyone can relate to the overwhelming emotions that come with ostomy surgery. Though different for each person, we all have stories of difficult times, fears we are facing, successes we are celebrating and hopes and dreams for our lives beyond illness. Coming together to share our experiences and thoughts on these things can offer profound opportunities for healing. I love the conversations I have at the meetings and learn something from every single person there whether they are 25 or 70 years old.

And guess what? If you wish that there were more people at the meetings your age– stick around. The next time someone else your age is nervously walking down the hall towards the meeting room and peeks in, they will see you there and feel less apprehensive. If that person chooses to also come back next time, it has a ripple effect and soon the group becomes more diverse. Make the meetings be what you want them to be by participating and returning for the next one.

If you don’t have access to a local support group to meet people in person, there are many groups to join on the internet. I wrote a post a while back about the importance of reaching out to others online. One of my biggest twists of luck when I was in the hospital and facing the possibility ostomy surgery was that my room had a good internet connection. Whenever my favorite nurse would see me typing away on my computer at an intense pace, she would always remind of how fortunate I was to be in that room because many of the others on the floor had poor Wi-Fi signals. I don’t know what I would have done without my computer. It became a lifeline from my isolated hospital room and allowed me to meet others who had gone through surgery and gone on to lead active lives.

Because of my own experience in reaching out for help when I was sick, it is a huge priority of mine to try to answer every single comment and email I receive on this site. Sometimes it takes me a little while due to a busy schedule, but you will hear from me if you write. Last fall, an email appeared in my box from another local adventurous ostomate: Lewis Benedict. That initial contact led to other opportunities to meet up including a recent hike of Twin Sisters Peaks in Rocky Mountain National Park. Lewis is now working on his own ostomy awareness website, ostomatevillage.com, and was even on cover of The Phoenix magazine this quarter! I am so proud of his accomplishments and look forward to many future adventures with Lewis and his wife, Tara.

On top of Twin Sisters Peak in Rocky Mountain National Park with Lewis and Tara of Ostmate Village. Check out the video below for more on the adventure!
Our group (including Lewis and Tara of Ostomatevillage.com) poses atop one of the Twin Sisters Peaks in Rocky Mountain National Park. Check out the video below for more on the adventure!

I am thankful everyday that I have met so many amazing people through my ostomy association meetings, OstomyOutdoors.com, and other websites and social media. You all inspire me to no end and help keep me motivated when my own life presents challenges.

I am going to end this post with a video of the hike with Lewis mentioned above. I hope it provides some inspiration to get out there and meet other people with ostomies. If you are feeling alone while facing or recovering from surgery, or if you just want to meet other people who have been through similar things, know that there is a strong ostomy community out there. You just have to reach out.

Next time?

Wow! That looks like fun I thought as I gazed up at The Ridge at Loveland ski area on Sunday and saw three skiers floating down an area of untracked powder. If only we had time to get up there. Doug and I were planning on leaving the ski area early to avoid the nightmare traffic jams that always happen on ski weekends when everyone is trying to get back home to Colorado’s Front Range. Getting to the area where these people had been skiing involved signing a waiver down at the lift ticket office and then riding the new Loveland Ridge Cat. We figured it would take at least an hour to get our pass and then ride all the necessary lifts to get to the area where the snowcat picked skiers up. Not to mention that the snowcat stopped operating at 2:30 p.m. We would really have to rush to catch the last ride.

That seemed like a lot to do for one run, and I almost shrugged it off  thinking it wasn’t worth the hassle. Anyway, we had passes to the ski area and there was always next time, right?

As I sat there in the snow looking up at the snowy ridge, I had this horrible nagging feeling that maybe there wouldn’t be a next time to do that run. I hate having depressing thoughts like that, and I really do try to stay positive as much as I can. However, sometimes the downer feelings sneak in and this was one of those times.

This Thursday, I am going in for an MRI of my left hip. I have been experiencing a rapid worsening of pain in the joint. What started out as a dull ache in the beginning of January has now changed to a sharp pain whenever I lift my leg in a certain position. The joint is starting to hurt when I walk and it feels alarmingly like the avascular necrosis (AVN) in my shoulder. Though I am definitely staying hopeful, I am also scared of what the MRI might reveal. If the results came back showing AVN, I am pretty sure snowboarding black diamond runs on The Ridge would be out of the question.

I suddenly had this incredible drive to get up there and to the run right away. There was no time to waste! Who cared about getting stuck in traffic. Doug and I raced down the mountain, got our passes for the Ridge Cat and made our way up the lifts to the loading zone for the vehicle.

This isn’t the first time since being diagnosed with AVN that I have had these sorts of thoughts. Last Friday I went to a two-hour Zumba dance party at my gym. Doing salsa moves, jumping around and swinging my hips was so much fun, and I smiled the entire time. Still, the dreaded thought once again entered my head: Would this be the last time I would get to dance so hard? Just in case, I closed my eyes and focused on the lovely sensation of my body moving to the music. Don’t ever forget how amazing this is I thought.

A couple of weeks ago I went to the rock climbing gym. My orthopedic surgeon had said it was okay to still climb as long as I followed some restrictions, avoided doing anything that elicited pain, and didn’t push too hard. I started tentatively–not knowing how my shoulder would handle things. Soon I realized that if I only climbed with my arms in front of me and did not do any moves where I was reaching far out to the side or back, I was fine. On the last climb of the day, I paid close attention to how strong and powerful I felt when to reaching up for a hold and making my way to the next one. Would there be a time in the near future when I couldn’t remember what that felt like due to decreased mobility?

First time climbing after my avascular necrosis diagnosis and still going strong.
My first time climbing after my avascular necrosis diagnosis. I was being cautious, but still felt strong.

On New Year’s Eve, I went ice skating with my brother-in-law’s family. As everyone went back to the warming room to take off their skates, I stayed behind and did a few laps. Once again I closed my eyes and tuned into the feeling of my legs gliding over the ice hoping to commit it to memory in the event that I wouldn’t be able to do it again.

Ice skating on New Year's Eve.
Ice skating on New Year’s Eve.

As I sat on The Ridge looking out at the gorgeous snow-capped peaks in the distance, I thought back to the climbing, ice skating and zumba instances and once again wondered if this was the last time I would be clicking my boots into my bindings and flying down a black diamond run. Sure, these thoughts were rather melancholy and I wished I could have been thinking about happier things. However, there was one silver lining to having these feelings: they made me want to soak up the moment and savor every bit of joy that was found there.

I tilted my board towards the fall line and began to slide down the slope. As I picked up speed, I listened to the wind rush past my ears and felt snow crystals touch my smiling cheeks. I felt my body turn into this amazingly coordinated machine and bend and sway with the subtle nuances of the terrain. With years of practice, it knew the exact pressure I needed to exert on the board to make it arc gracefully through the powder. I felt the sensations in my feet as I rolled from my heel-side edge to toe-side and heard the noise of my board slicing its way through the snow. I felt agile, giggly and content and wished that slope could have gone on for at least ten more miles.

I don’t know what Thursday’s test will reveal. Maybe I will have AVN in my hip. Perhaps the pain is just from a tweaked tendon. Whatever the results–that was one heck of a snowboard ride! Perhaps we all need to delight in those amazing moments as if there will be no next time.

Boarding the Loveland Ridge Cat
Boarding the Loveland Ridge Cat.
Unloading from the Ridge Cat. The individual behind me had just reminded us that all the terrain served by the snowcat was expert only. No turning back now!
Eagerly anticipating the run. The individual behind me had just reminded us that all the terrain served by the snowcat was expert-only. No turning back now!