Doug and I kicked off the new year by taking part in our very first biathlon race. I decided before the event that I wouldn’t worry about my time or how many targets I hit and just enjoy immersing myself in a new activity. After all, I barely even knew what a biathlon involved three months ago and here I was wearing a race bib and sliding on skis that I waxed myself! What a fun and unexpected way start to 2014!
As for the results of the race–I ended up taking a while to complete the 7.5 kilometers, didn’t shoot that well and skied A LOT of penalty laps (extra skiing due to missing targets). However, today my father-in-law sent some photos that he took of the race and I noticed something: I have a huge smile in just about every photo. Clearly I wasn’t that concerned about my easy pace or any lofty goals; I was simply loving my time on the course.
When I was pondering setting updated goals for 2014, I thought about the biathlon and how I seemed to savor the experience more by not putting so much pressure on myself. Maybe for this next jaunt around the sun it is okay to ease up by not having a huge list of things I want to achieve. I have a general idea of what I hope to accomplish in the next year, but mostly I’d just like to allow some time for a little spontaneity, smile as much as I can and enjoy the journey.
Magazines? Bolts? Barrels? No… I wasn’t reading, building something or making wine. I was sitting in class learning all the terminology to shoot a .22 rifle in a biathlon race. Doug and I decided to give a new sport a try this winter and biathlon looked like a lot of fun. This weekend there was a clinic to learn about rifle safety and how biathlon races work.
I cross-country skied years ago, but it had been at least ten years since I had been on skinny skis. The shooting part was new to me, save for a couple of lucky shots (I hit the target!) with a BB gun in Wyoming. I was a little nervous to try both of these things together, but I am glad I did. I had a great time! There were many newcomers to the sport in the class and it ended up not being intimidating after all. I even managed to hit a few targets during the practical portion of the class. Of course–it will be much more difficult to do that while skiing in an actual race. One of the biggest challenges of biathlon is attempting to hit targets when your heart is pumping fast and you are breathing hard. There is a race in January that I am thinking of doing so I can get a feel for what this really feels like.
At the clinic, I was focusing on keeping my hands warm (the high temperature was a whopping 13 degrees), remembering how to skate ski and figuring out a lot of new vocabulary and skills. I was also hoping that skate skiing wouldn’t irritate the avascular necrosis (AVN) in my left shoulder joint (which fortunately it did not). One thing that I wasn’t thinking about at all was my ostomy. My altered plumbing feels very normal to me now and it rarely enters my mind except when I go to empty my pouch.
That wasn’t the case three years ago. At this time back then, I was a month out of surgery and struggling emotionally. It felt like my ostomy was the only thing I thought about during an entire day. Changes were overwhelming, I was full of anxiety and I wondered if life would ever feel normal again. Even though I had wanted my ostomy for treatment of my UC, I grieved over the changes to my body and cried every single day.
Those times were tough, but I know that I had to go through them to get to where I am now. Returning to an adventurous life after my ostomy didn’t happen all at once; it took a lot of small steps. Had you told me back then that I would be shooting a rifle at a biathlon course in a few years, I would have thought it was crazy! As I enter my fourth year with an ostomy, it is great that life feels so normal again and it is also wonderful to be trying a new sport challenge. I can’t wait to see where my skinny skis take me!
I must admit it. I have been very fortunate when it comes to my ostomy. I have had the best medical team imaginable through my UC and surgery journey. I have a wonderfully constructed stoma that functions perfectly and my wafers never come loose or leak. As of yet, I haven’t had the troubles with foods or blockages that some people with ostomies do. I don’t take any of this for granted and try to live each day with a sense of gratitude over the way things have turned out and for my restored health.
I felt this same level of thankfulness many times on my Rainier climb. I would stop for a few moments, look around in amazement and think I can’t believe I am really here and then close my eyes and give a silent thanks. Leaving the park after the climb was really hard. I didn’t want to let go of all I had experienced on the mountain. As we drove away, I kept wanting to take one last glance at the peak–as if each additional view would somehow help me better process all that being up there had meant or would make the memories more lasting. My ascent of Rainier couldn’t have turned out more perfectly, and it felt as if the stars had aligned for so many aspects of the trip:
My climbing team was amazing
I climbed with the best group of people that anyone could ask for. We had a total of four guides and eight participants in our team. Just by sheer luck of schedules– two of our guides also happened to be doctors and three of the other clients were nurses. Though I didn’t talk about my ostomy a lot on the climb (I had other things to focus on), having teammates with medical knowledge made bringing it up infinitely easier.
Our group met at the guide service headquarters the day before our climb to go over gear and logistics. After the meeting, I stayed back to talk with Emily Johnston, our lead guide, and also an ER doc. I brought up some of the unique challenges my ostomy presented (hydration, having to empty on rest breaks, etc.). She had some experience with patients who had ostomies and was very understanding and matter-of-fact about it. From that point on, I knew there would be no awkwardness when I had an ostomy-related question or needed to deal with it on a rest break.
All four of our guides were amazing and top-notch. One of our guides, Craig John, had made it to the top of Everest. Liam O’Sullivan, another guide and doctor, had set a speed ascent record on Rainier in 2008. Emily, Liam and Craig had also climbed Rainier over 100 times. Our final guide, Jeff Ward, was certified with both the International Federation of Mountain Guides Associations as well as the American Mountain Guides Association and instructed other alpine guides. Suffice it to say that we were in very good hands.
The other climb participants were some of the nicest people I have met. We formed a quick bond and everyone was so encouraging and supportive of each other. I truly hope that someday we will get to meet up in the mountains and climb together again.
The weather cooperated
Day one was sunny and clear blue, but when we woke up on day two, an angry looking lenticular cloud had situated itself over the top of Rainier. Fortunately, we were only practicing glacier travel skills and rope work near our low camp at Camp Muir that morning. After a short hike to the high camp at the Ingraham Flats in the afternoon and an early dinner, a ferocious thunderstorm blew in. Not only were we surrounded by intense lightning–which was fortunately attracted to the higher ridges and not our camp–but three to four inches of fresh graupel (soft hail-like snow pellets that resemble the innards of a bean bag) fell. The forecast didn’t look good for our summit attempt the next morning either, and we went to bed feeling disappointed that we probably weren’t going to make it any higher on the mountain.
Much to our happy surprise, we woke up to our guides’ voices telling us that the skies had cleared! We quickly ate breakfast (at 11:30 p.m.–yes, that’s right, in the middle of the night), got packed up and then tied in with our assigned rope teams. It was slow going with all the fresh deep graupel on the trail which made it feel like we were walking in deep sand. I was second in line, and for every step forward, I slid a half a step back.
The route was also more technical than it usually was at this time of year. Several larger crevasses had opened up, and we had to cross the gaping abysses by walking across extension ladders secured on each end. When I shined my headlamp into one of the voids I could not see the bottom. As we hiked, we could see that the stars were disappearing in the dark sky– more clouds were coming in. We pushed on and reached the top of Rainier at 7:30 a.m. We were only able to bask in our success for maybe ten minutes before it was time to head down. The clouds were looking alarmingly like the ones that had just dumped on us the previous evening. Even in good weather, the technical crevasse sections of the route had a tendency to cause a bottleneck of climbers. Being stuck waiting in an exposed place surrounded by lightning would have been terrifying and dangerous. Though we all would have loved to spend more time on top, we knew it was not worth the risk. As it turned out, the clouds blew over without incident and we ended up having great conditions for our descent.
My ostomy behaved
Two days before I was to leave for my climb, my ostomy acted up for no apparent reason. I had pure liquid output for a while and when I changed my appliance wafer one final time before leaving, I noticed I had numerous ulcers on the surface of my stoma. I had experienced these on many occasions before and even had them biopsied (which only showed non-specific inflammation and not Crohn’s). However, this time there were more ulcers than usual and some of them looked different. Along with he circular ones that I have been getting on the side of my stoma, there were strange elongated amoeba-shaped ulcers on the tip and just barely extending into the inside of my stoma. I thought, Oh no! I don’t need something new to deal with right before heading out on the climb.
I decided not to worry about it. If I had liquid output and had to change my closed end pouches more frequently along the route, so be it. I had also trained with a much heavier pack than I would actually be carrying on the trip. I knew that if I had to bring more water to offset any extra fluid loss, I would be fine with the pack weight.
Luckily, the morning we left the trailhead, my output thickened and my ostomy fell into its usual pattern of having to be emptied every four to six hours. The first day of the climb I was even able to go one stretch of eight hours. When I returned to my lodging after the climb and put on a new wafer, I noticed the ulcers had also started to go away. Whew!
I ran into one of my IBD role models on a rest break
Years ago, Doug did some website work for International Mountain Guides and met with the three guys that ran the company: Eric Simonson, Phil Ershler and George Dunn. When it came time to climb Rainier, we knew we wanted to make the trip with their guide service.
In 2006, when I was first diagnosed with ulcerative colitis, I also found out that Phil Ershler had Crohn’s disease and had recovered from colon cancer. He and his wife Sue had just shared their story in the book Together on Top of the World which chronicled their journey to overcome those challenges and climb the seven summits together. I read the book and went to see them speak at a local climbing shop and was deeply moved. The things that Phil had gone on to do in spite of IBD were truly remarkable. As my disease continued to worsen over the years, Phil’s story remained an inspiration to me.
When we knew we wanted to do our climb with International Mountain Guides, I emailed Phil and asked him his thoughts on doing the climb and what route might work best for me. He gave me some great suggestions and was really encouraging. As luck would have it, we ran into Phil on the way to Camp Muir on day one of our trip. He was descending from a day hike with his wife and a friend and happened to pass by just as we had paused for a rest break. He stopped to chat with our group, and I pulled him aside afterwards to thank him in person for the encouragement and inspiration. I still can’t believe that of all the days on the mountain… and all the people who climb it… and of all the places to take a rest break… we ran into Phil right there that day. Seriously. What are the chances?!
Though there were many fortuitous things on my climb, there were also aspects that were not just a matter of luck:
I trained really hard
The months before my climb were a roller coaster ride of injury and uncertainty. From being diagnosed with steroid-induced avascular necrosis in my shoulder in December to having hip and Achilles tendon problems in the spring– I really thought I might never be able to do the climb. However, I did everything I could to make it happen. I worked diligently with my physical therapist to get to a point where I could at least hike and aqua-run again and then did those activities week after week. If I was tired after work, I still found the motivation necessary to head to the pool. When the alarm went off at 1 a.m. every weekend to hike a big peak, I rolled out of bed and did it. Once on Rainier, this training made the climb so much easier. I still can’t believe how healthy and strong I felt up there; it was everything I had hoped for.
I was willing to ask tough questions
When I filled out my application for the climb last fall, I was very open about my ostomy. I wrote about the challenges it presented and asked for feedback from the staff about how I could handle these things on the climb. No– it wasn’t easy writing to strangers and explaining ostomy waste and my various needs related to it. However, because I was straightforward and honest about my situation, I got some amazingly helpful suggestions and gained insight into how I could adapt to the conditions I would likely encounter on the trip. Once I got up there, I was able to enjoy the climb and not worry about my ostomy because I knew what to expect.
I did not give in to fears
There were a plethora of things to be nervous about in regards to my ostomy on Rainier. Would I be able to stay hydrated on long days when all our water came from snow and could only be obtained at camp? Would it be really hard to swap full pouches on steep slopes in the cold? What about when being roped up on a team? Would my heavy pack be a problem? How much should I tell my fellow team members about my ostomy and when? I knew rest breaks were kept short. Would I have enough time to empty my appliance plus refuel and hydrate?
Instead of getting too worried about any of these things or letting them stop me from going, I equipped myself with as much information as possible to help me prepare for the trip. Beyond that, I wholeheartedly jumped into the unknown and let it play out minute by minute. There were many times that I had no idea where I would swap out a pouch within the next hour or when a conversation with another person might turn to my ostomy. I figured it out as I went along and that is one of the things that made it such a grand adventure.
The video in this post covers some highlights of the trip and conveys the emotions of the climb better than I could ever express in writing. Due to the fast pace of the climb and the fact that we were moving through difficult terrain in roped teams, carrying ice axes and wearing heavy gloves, we weren’t able to record nearly as much footage as we usually do for our films. I plan to do two more written posts in the upcoming weeks covering more details about the Rainier trip: one on the specifics of how I managed my ostomy on the climb and another regarding the sometimes challenging issue of knowing how much information to share with others regarding one’s ostomy.
When life gets busy, some things end up on the back burner. Lately, that item has been sleep. There has barely been a night in the past couple of months when I have gotten more than seven hours of shuteye—usually the number has been closer to five and there have been times it has been less.
What has forced sleep onto the back burner? In part, it’s a large, glaciated peak named Mt. Rainier that I will be climbing very soon. Along with my full-time job, life lately has consisted of these four things: hiking peaks every weekend to prepare for Rainier, going to the gym in the evenings to train for Rainier, keeping up with my physical therapy so that my joint issues don’t crop up on Rainier, prepping and packing for the Rainier climb. See a theme here? All these things take up an incredible amount of time. Many evenings I don’t get to bed until late trying to squeeze it all in. Most every training peak we have done has required a wake-up time of 1 a.m. in order to make it to trailheads early so that we can summit peaks before afternoon storms roll in. And even then—we experienced static electricity and buzzing hiking poles on one peak as a rogue storm cloud blew in at 9:30 a.m. Yikes!
With the climb on the front burner and sleep on the back one, my blog has worked its way into the far rear corner of a little-used cupboard behind a large kettle. Tonight I clanked through the pots and pans and dug it out for a quick post. To everyone who has been tuning in to the blog or who have emailed or commented and not gotten an answer: thanks for your patience. I will be back to posting and corresponding regularly once I return from the trip. Below, I am including some photos of our adventures so you can see what I have been up to. Since my last post about five weeks ago, we have climbed six 14ers and four 13ers, including a three-day backpack trip with one of the adventures. Whew!
As I prepare for Rainier, I am starting to get a little nervous about some ostomy-related things. I am wondering what it will be like trying to discreetly swap out closed-end pouches while roped up on a team, including some strangers. I hope I can keep up with my hydration needs. I am afraid that during short breaks, all my time will be used dealing with my ostomy and that I won’t have time to eat and refuel. Will my ostomy supplies make my pack heavier than everyone else’s? I know it will all be fine, but there are a lot of unknowns on the trip.
One thing that has really helped me not worry are the amazing staff at the guide service we will be using, International Mountain Guides. I have explained what having an ostomy is like to them and have asked for their suggestions on everything from dealing with poop on the mountain, to questions about hydration and accommodating my gluten-free diet. It is always a little awkward bringing up the intimate details of life with an ostomy, but being open about it helps me get the answers I need. The staff has made the process so easy. I feel comfortable asking them anything which definitely helps quell the fears.
In many ways though, I love the uncertainty. The best thing I have discovered for becoming confident with my ostomy is to throw myself into new situations wholeheartedly. Through those occurrences, I learn that I can be resourceful and adapt to anything. I can’t wait to see what challenging experiences await me on the gorgeous ice-covered slopes of Mt. Rainier. No doubt I will come back from this adventure with my horizons stretched even farther.
Last weekend I was reminded why I love using closed-end ostomy pouches on hikes and climbs. I was up on a long ridge between between Loveland Pass and Mt. Sniktau in Colorado. Though it was a gorgeous 75-degree day down in Denver, up at 13,000′ it was blustery and frigid. We left the house at 4:15 a.m. so that we would be done with our climb and back to the car before afternoon thunderstorms came in. I emptied my appliance before leaving the house, but by the time we reached the summit of Mt. Sniktau at around 9 a.m., my pouch was reaching its 1/3 full point. This is typically when I like to empty it.
Problem was, no ideal place to empty a pouch could be found on the entire ascent. The wind was howling and shelter was non-existent. On top of this, there were many feet of snow on the ground. The few places where there was exposed earth, it was frozen solid. There was also no way to go off of the ridge to empty away from the trail. Precarious cornices sat 50 feet to the east of the route and dangerous avalanche slopes could be found 50 feet to the west. Emptying would have meant draining my pouch in the snow close to the area where people travel. Once the snow melted, fecal matter would have been left on top of the ground in a popular area. This was one of those instances when wearing a two-piece ostomy system and using closed-end pouches was almost a necessity.
If you are just finding out that you will be having an ostomy, or are recently out of surgery you may find the sheer number of ostomy appliance choices to be overwhelming. Closed-end, drainable, one-piece, two-piece — what do all these mean and which ones are best suited for various outdoor adventures? A lot of these choices come down to a matter of personal preference. The goal of this post is to share some information on the basic types of appliances and explain how I utilize the various options on peaks and trails. I’d also like to hear what you’re using in the outdoors.
First, ostomy appliances come in one- or two-piece options. With a one-piece appliance, the wafer (also sometimes called a skin barrier) is permanently joined to the bag and cannot be separated–you’re literally stuck with this pouch until you remove the whole thing. The benefits of this style is that it has a low profile and sits very flat against the abdomen. The disadvantage is that because the wafer and bag cannot be separated, you lose the flexibility of being able to swap out different types of pouches unless you take the whole system off your belly. I used one-piece drainable pouches for the first five months after surgery, and on one of my very first major outdoor trips as an ostomate: a three-night early spring backpacking excursion. The ground was snow-covered and frozen on this adventure and I ended up trying to drain my pouch into plastic bags so that I could pack out my waste. It didn’t go well and I got output all over my pants and all over the outside of the bag I was trying to drain into. From that point on, I recognized that a two-piece system would be a better option for my outdoor trips.
With a two-piece appliance, the wafer and pouch are separate and attach to each other with a plastic ring that snaps together much like Tupperware. Once the wafer is on your belly, different styles of pouches can be put on or taken off this ring. These systems are a little higher profile because of the plastic ring. However, there is much flexibility in using them because you can swap out different types of pouches depending on your activities. Due to this, a two-piece appliance is my clear choice for outdoor adventures. Also, I find that even with the plastic ring, two-piece ostomy systems are undetectable under my clothing.
There are also choices for the pouch portion of an ostomy appliance; they come in drainable or closed-end versions. Drainables have a tail that unfolds so that output can be emptied out of the bottom. Once the tail of the pouch is wiped clean, it rolls up and closes with either a clip or a Velcro strip until it needs to be emptied again. A person with an ostomy may use the same drainable pouch for multiple days.
Closed-end pouches have no tail. Once they fill up, they are designed to be thrown away full. Due to their simpler design, they cost less per bag than drainable pouches. However, most ileostomates don’t use them the majority of the time. Due to output coming directly out of the small intestine having higher water content, those with ileostomies usually have to empty their pouches six times a day or more. Even though closed-end pouches have a cheaper per-pouch cost, going through so many in 24 hours makes them impractical and not cost-effective. Generally closed-end pouches are better suited for those with colostomies who may only have to empty a few times a day. That said, there are occasions when closed-end pouches are the perfect tool for those with ileostomies too.
Drainable pouches are my preference most of the time, even on wilderness adventures, as long as I can find a good place to empty. Packing out full closed-end pouches can be heavy due to the high water content of ileostomy output. In fact, I once weighed the trash bag that contained a day’s worth of full closed-end pouches after an all-day climb and it came in at 3.5 pounds! Multiply that for trips that may be several days long and you can see why I use closed-end pouches only when necessary.
However, my hike on the ridge is an example of an ideal time to use a closed-end pouch. I also like using closed-end pouches in other places where it is impossible to empty: on cliff faces when climbing, on rocky peaks where it is impossible to dig a cathole, and on crowded urban trails. Though I haven’t been on a river trip with my ostomy yet, I can also see them being very useful in these situations when one cannot get far enough from a water source to empty. Also, it takes longer to dig a hole in the ground and properly drain my pouch when in the wilderness than to swap out a pouch. There have been a few times when I have been caught in storms and have decided to swap to a closed-end pouch instead of draining in order to minimize my exposure to lightning, high winds, cold rain or other dangerous elements. Both drainable and closed-end options also come in smaller sizes if one wants a tinier pouch for some activities such as swimming.
It is also worth mentioning that there is one other style of two-piece ostomy appliances; they are called adhesive coupling systems. Instead of having a plastic Tupperware-like ring like traditional two-pieces, the wafer has a smooth plastic area and the pouch affixes to this with a sticky adhesive ring. The benefit of these is that, without a plastic ring, they are very flat on the belly. You can still swap out pouch styles by peeling off the old bag from the wafer and sticking on a new one. However, I find that adhesive coupling appliances don’t work well on my outdoor trips . When I peel off the full pouch, a little output inevitably gets on the place where I am supposed to affix a clean one. I then have to fully clean this in order to get the fresh pouch to stick. It ends up being too messy and hard to deal with in the wilderness where there is no water to clean up with. I find it much easier to use the traditional two-piece appliances with plastic rings. Even if a small bit of output gets on the ring, it still snaps together fine and is not messy at all.
A downside of closed-end pouches is that they are a disposable item. I try to make the best environmental choices possible in my daily activities, so I do sometimes cringe when I throw away my bag of closed-end pouches after a climb knowing I have added more to the landfill than I would have if I would have stuck to a drainable that day. I try to remind myself that I do this for a medical reason and to deal with a basic life process of bodily waste removal. In other aspects of my life, I try my best to be gentle on the earth. I take reusable bags to the store, drive a fuel-efficient vehicle, use public transit, buy organic produce to protect wildlife from pesticides, use eco-cleaners to keep toxins out of our water supply, recycle every item possible, and make wise purchases. I hope that, in the grand scheme of things, the impact of the pouches that I throw away is small. I really do only try to use them when absolutely necessary.
When I was on Mount Sniktau on Sunday and decided draining wouldn’t be possible, I even began to wonder if I could find a good place to take off my full pouch and put an empty closed-end one on. It was so windy and there were people everywhere on the ridge. Once my pouch was 1/3 full, I couldn’t find a place to make the switch. I decided I would wait until later to deal with it. The good thing about my ostomy is that, unless I eat something that irritates my stomach and gives me pure liquid output, I have plenty of time to get around to emptying. It is rarely urgent.
As I made my way down the ridge from the summit, more and more people were coming up and I realized I couldn’t be fussy with my site selection for swapping. My pouch was now 1/2 full and I needed to take care of it soon. I ran ahead of Doug and his dad but also saw that some people were heading towards me. I had about 5 minutes before they reached me so I tossed my pack to the side of the trail next to a small pile of rocks and tried to create a wind break. I then dug my supplies out and tied a small doggie poo bag to my pack strap so it wouldn’t blow away (this is what I would throw the full pouch into). Next I pulled down the front of my pant waistband, took my hernia prevention belt off, and quickly swapped out the full pouch for the clean one. Just as I had gotten my clothing back into place and was bagging up my trash, the two hikers approached me. I said hello and we talked for a second about the route. They clearly had no idea I had just dealt with my ostomy. To them, from a distance it probably looked like I was futzing around with my clothing or backpack. One can very discreetly manage their ostomy on the trail with a two-piece system and closed-end pouches.
With all the options out there, it pays to experiment with all the different brands and styles. Don’t feel like you have to use only one type of appliance. Have a dressy occasion where you definitely don’t want your appliance to show? Wear a sleek one-piece that week. Hanging out at the beach all day? Go for a mini drainable pouch that won’t hang out beyond the bottom of your suit. And if, like me, you find yourself needing to empty on a wind-swept ridge with sheer drop-offs on both sides — a two-piece with a closed-end pouch may be just the ticket. Take advantage of all the products out there to make life with your ostomy the best it can be.
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.
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.
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.
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.
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.
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 anext 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?
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.
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.
Beyond great doctors and following the treatment plans they prescribe, one of the things I find most important when dealing with difficult medical conditions is maintaining a sense of hope. I simply have to be able to believe that the possibility of a good outcome exists, even if I know the road to get there might not be easy or certain. When I was facing ostomy surgery, one of my biggest sources of hope was The Phoenix magazine, the official publication of the nonprofit United Ostomy Associations of America. The minute I stumbled upon it online, I subscribed and bought all the back issues. I eagerly read every word of every issue. Along with a vast array of educational articles about products and managing an ostomy, there were countless inspirational stories about people with ostomies who were out there living life to the fullest. I learned about a woman who had hiked the Appalachian Trail and another who had visited China. I found out about a climbing guide in Alaska who had an ostomy and another individual who had climbed Everest. Reading about these people was as important as figuring out how to get my wafer to stick: they allowed me to visualize what my life could be like in the future. They gave me hope.
Last fall, I began contributing to The Phoenix myself by wring the quarterly Ostomy Outdoors column. This is certainly something I never would have visualized as being part of my future while lying in my hospital bed a couple of years ago! Life is full of beautiful surprises and being able to help people through the same magazine that provided so much inspiration for me is humbling.
Whether you are facing surgery, just recovering, or a seasoned ostomate, each issue is full of great articles on supplies, skin care, stories about others who have had ostomy surgery and so many other topics. And now it is even easier to view the publication! The UOAA is offering an online subscription for only $19.95. Find out more information and get a free preview of the online winter issue at the following link.
And speaking of hope — I hope to never let a season go by where The Phoenix doesn’t show up in my mailbox. It is such an invaluable resource for me.
Sometimes after a busy summer season of packing and unpacking for an outdoor trip practically every weekend, I need a break. October and November were quiet months. I did some trail running, but didn’t go on any major adventures. The rest from the hectic pace felt wonderful and much needed.
Another reason I have been taking it easy is that I developed some unusual pain in my left shoulder in mid-October. My shoulder did great on my two-week climbing trip, but a couple of weeks after returning, the joint started to throb and hurt constantly. Ever since I was a teen, I have had off-and-on trouble with tendonitis in that joint and had even been working with my physical therapist over the summer to get my shoulder stronger and resolve these issues. Things had been going splendidly with the therapy, and before my climbing trip, my physical therapist thought I might even be close to not needing another appointment.
Unfortunately, that is not how things worked out. The new shoulder pain is different than what I had come to expect with my occasional bouts of tendonitis. Because of this, both my PT and doctor thought it would be a good idea to get an MRI. The test results showed tendinosis (a chronic form of tendonitis) and also bone-marrow swelling in the head of my humerus. What this means exactly I do not know. My primary care doctor has referred me to orthopedist, but my appointment isn’t for another week. Of course, my mind once again wants to run to all the scary what-ifs of the situation. What if the marrow swelling isn’t from the tendinosis and is instead being caused by… (fill in the blank with numerous frightening conditions here). What if I can never rock climb again? Ahhhhhh……
However, if there is one thing UC and having an ileostomy has taught me, it is that dealing with uncertainty is part of life. Instead of letting myself fall into my usual pattern of worry, I am going to try to forget about my shoulder until my appointment next week and focus on the activities I can do. One of these is hiking. Even with a backpack, hiking doesn’t seem to bother my shoulder at all. And on the plus side–hiking is the most important activity I need to be doing right now to train for Rainier.
So on Sunday, I set out with Doug and his dad to hike up a peak. Our original plan was to hike James Peak (elevation 13,294′). However, just before exiting the freeway for that destination, we had an idea. Let’s do a 14er instead! The road leading to Grays Peak (elevation 14,270′) was just a few exits up the road. Colorado is experiencing a very dry winter, and with the trailhead access snow-free and avalanche danger minimal, it was the perfect chance to get to the top of this peak.
The high temperature for the elevation we were at was in the mid-30-degree range, but with 30 mph winds, it felt much colder. I had packed 28 pounds of gear, including lots of warm clothes, food and three liters of water (Doug also carried an extra liter for me). I was surprised at how great I felt hiking at such high elevations with this weight. I had been expecting it to feel much harder after not hiking any big peaks since July. We made it to the summit in late afternoon and enjoyed the gorgeous views, including those of close-by Torreys Peak, another 14er. Though we had earlier thought about trying to do both peaks, we realized that the late departure from the trailhead on this spontaneous trip would not afford us enough daylight to get in double summits.
My ostomy caused no issues on the hike. I had to swap out closed-end pouches (I prefer these to drainables on peak climbing days) twice during the excursion. At one point on the ascent, I realized that my pouch was getting fairly full. I was behind a ridge that offered some protection from the wind and there was also a tall cairn to duck next to. Doug and his dad were a little ways back on the trail and there was another party about 500 feet behind them. There was no one coming the other direction, so I decided to seize the opportunity to swap out my pouch right there on the side of the trail. I grabbed a small trash bag and fresh pouch out of my pack, ducked behind the cairn, pulled the waistband of my softshell pants down and quickly swapped out pouches. By the time Doug and his dad caught up, I had the used pouch and my other supplies packed up and was ready to keep hiking. I know that on Rainier, I am not going to have much privacy when roped up with teammates on a glacier. It is reassuring to know that I can swap out pouches so quickly and discreetly.
The big challenge for me on this particular hike was the cold and wind. It was even more frigid than during our winter hike up Grizzly Peak last December, captured here on video.
Fortunately, in preparation for Rainier, I had purchased several new clothing items. This was a perfect chance to test them out. One new addition to my outdoor clothing quiver is a super warm down jacket with a hood. I have lighter jackets, but only this one is warm enough for extremely cold conditions. As I stuffed the two pounds of down luxury into my pack before the hike, I really thought it was going to be overkill. However, as I threw this jacket on at breaks and at the summit, I soon realized it was a lifesaver.
Despite taking part in countless winter camping and backpacking trips, ice climbs and peak ascents over the years (including several since my ostomy surgery), I have never been as cold on a trip as I was on this particular hike. I am not sure why this was the case as I was dressed well and eating and drinking plenty. Regardless, some combination of wind, cold, shade, and my body on that given day had me freezing. On the summit I was so chilled that I could hardly grip anything. I had to use my teeth to zip up my jacket. As I descended back to the car, I kept having the urge to lie down and sleep. I would pass a boulder and think wow, that looks like a comfy spot to snooze for a little while. But then I would see Doug and his dad coming up behind me and would realize I didn’t have time for a nap. I don’t know if I was hypothermic, but if not, I was close. I shudder to think about how cold I would have gotten had I decided not to bring that down jacket.
I realize that having an extra-warm clothing item like this during cold temperature activities is especially important with my ostomy. Even though it only takes a couple of minutes to stop along the trail and swap out a pouch, I do have to expose a small section of my belly to the elements. In extremely cold temperatures, it doesn’t take long to lose heat by doing this. Packing conservatively with plenty of warm clothes is of paramount importance.
I can’t wait to head out on our next training hike, and I am starting to compile a list of peaks to attempt that have good winter trailhead access and low avalanche danger. For future training hikes, I will have to progressively increase my pack weight to at least 40 pounds (the expected weight of my pack on Rainier). I guess this means I can bring an extra large lunch next time!