When I haven’t blogged in a while, it is hard to know where to start. I had a wonderful summer filled with a lot of fun activities and it would be impossible to cover all the happenings in a single post. Last summer I focused on the singular goal of climbing Rainier. This year I spent time doing a lot of different things including camping, rock climbing, hiking peaks, backpacking, bicycling, fly fishing, making art and visiting with family and friends. This was not the summer to get in shape or work on any specific fitness goals; it was a time to let myself bounce from paint brush to climbing hold on a whim and let go of some of the overwhelming feelings that I had been experiencing in the spring due to having too many things on my plate. I even fulfilled my dream of spending an afternoon sketching in my mother-in-law’s beautiful backyard flower garden with a glass of iced tea at my side. While I moved forward in feeling less stressed, my performance in a few sports definitely took a hit. One of those was running.
That was not a good thing with a September biathlon race on the schedule. Last winter, Doug and I started this sport and fell in love with it. Our last race was six months ago. In preparation for the upcoming season, we signed up for our local biathlon club’s late-summer event. This warm-weather race would be done by running or cycling rather than by skiing. I absolutely love biathlon and was excited to get out there with my running shoes and rifle. The course was only 5K, so I wasn’t too worried about my lack of training. Certainly I can run a few miles, I figured. It wasn’t like I had been a couch potato all summer. I had done a little bit of running and had still been active with climbing and hiking.
Unfortunately, I was in for a rude awakening on race day. The event was tougher than I anticipated and I huffed and puffed my way through the course. I couldn’t glide down the hills as I was used to doing on skis so it felt like my legs never got a break. Each lap of the race route ended with a small uphill into the range and I was so out of breath during the shooting bouts that I missed most of my targets. That meant a lot of extra penalty laps. Forget about trying to make a certain time–I decided mid-race that my goal would be to simply run the whole course without walking. I succeeded, but was completely wiped out by the time I reached the finish line.
Even though the race was tough, I still had an absolute blast. It rekindled my desire to train for biathlon. Maybe not at a super intense level (I still want to leave time in my schedule to work on art), but enough that I see some personal improvement.
Another thing that made race day challenging is that I was experiencing watery and profuse ostomy output. I have no idea why—it just happens to me on random occasions. The hard part is that there is no restroom near the biathlon range and the hectic race-day schedule makes it tough to hike back to the lodge to use the facilities. When I am not racing, I am usually helping with scoring or other tasks. My ostomy hadn’t been a problem at other races because I can usually make it six hours between empties. With the higher output, I knew I would have to somehow deal with it out at the range. I thought about taking Imodium, but sometimes that medication makes me feel nauseated, and I didn’t want to feel sick during the race.
To solve the dilemma, I brought closed-end pouches for my two-piece appliance and OstoSolution Seals. When my pouch filled, I dashed off to a secluded spot in the nearby woods to swap it out. The OstoSolutions Ostomy Pouch Disposal Seals made it easy to pack out the full pouches. During the hour I was actually racing, my output slowed down and I didn’t have to worry about it out on the course.
Though it can be frustrating, I really do appreciate it when my stoma acts up and throws me an unexpected challenge. It teaches me to be resourceful and is a good reminder that even on those less-than-ideal days, I refuse to let my ostomy slow me down. Now if only that were the case with my lung and leg power! They are definitely holding me back. In the upcoming months I am going to be busily training for the winter biathlon season so that I won’t get so tired on all those penalty loops.
It’s as harsh out here as on top of peak in a snowstorm. This thought pounded in my head as I cross-country skied down a slope in my second-ever biathlon. The wind was blowing against me so strongly that I had to use my poles to make downward progress. I was freezing in my minimal layers, and I felt eerily alone on the course with no one in sight and snow swirling all around me. The weather was declining rapidly, and I was relieved to be on my final of five laps.
In the distance I could see the biathlon range as I steadily made my way up a final incline. Snow was filling in the trail with drifts, and I felt like I could have walked faster than I was skiing. All that powder would have been much beloved if I were out snowboarding, but I didn’t much appreciate it in a Nordic race. As I got closer to the finish line, I could see the person recording times from a stopwatch. It seemed to take forever for me to reach him. But I finally made it! I finished the race and was super happy that I stuck with it and did not give up. I couldn’t remember doing anything that felt so physically strenuous– not even hiking up Mt. Rainier. Skate skiing is one of the most aerobically intense activities I have ever done.
We wrapped up the weekend with more fun. After completing the race, we stayed overnight at Snow Mountain Ranch/YMCA of the Rockies (the place where the biathlon was held) and even hit up the climbing wall in the pool. The next morning, we got up early and drove to Copper Mountain to go snowboarding.
When the event results came in a day later, I discovered that I had the slowest pace of anyone who finished any of the various distances. It wasn’t a surprise. This is a new activity for me and I didn’t expect to be good at it right away. I had been working on my shooting a bit, but had put very little attention into becoming better at skate skiing. That changed last weekend when I took a beginner lesson and picked up countless tips that will help me improve. I also plan to begin working on my cardiovascular fitness again by running and going skate skiing as much as I can. I know it is going to take a lot of time and many little steps to get better at the sport.
That reminded me a lot of getting back into the fitness activities and sports I loved after ostomy surgery. Like training for biathlon, it wasn’t a quick process. One of the most common questions I get from blog readers is how long it took me to get back to “X” activity. Since a lot of information on that subject is buried in other posts, I thought I would create a summary of how long it took me to return to activities and what some of the challenges were. Keep in mind that I did have some significant complications with my abdominal incision healing due to a rare reaction to my particular suture material. This extended my healing time.
Snowboarding: I did this activity for the first time at around five months post-op, but because it was the end of the season, I was only able to get a few days in. I was surprised at how effortlessly the movement of boarding came back to me after losing so much strength after surgery. The most difficult part was getting back into a standing position after taking a tumble. Due to the crunch-like movement involved, it felt hard on my core. I wore (and still wear) a six-inch wide hernia prevention belt to help support my abdominal muscles. At first I was also careful to not venture onto icy terrain since falling onto my butt hurt the area where my anus had been removed. By the next season (about a year post-op), all that pain was gone and I was able to return to my pre-surgery level of boarding.
Hiking and backpacking: I went on my first backpacking trip at around five months post-op as well. I checked with my surgeon to make sure carrying 25 pounds was okay and then headed into the backcountry at the first opportunity–which happened to be a very cold and snowy April weekend! Once again, I wore a six-inch wide hernia prevention belt and was mindful to keep the weight in my pack light. Doug carried many of my things and helped lift the pack onto my back. Once it was centered on my legs, it didn’t strain my abdominal muscles at all. The cold made this first trip with my ostomy difficult, but I was happy with the extra challenge. I knew if I made it through that, warm weather adventures would be easy.
After this trip, I kept hiking every weekend and slowly upped the distances traveled and amount of weight carried. I went on a few more overnight trips and began hiking 14,000-foot peaks. I remember walking like a turtle on the first one, but I just kept at it. By ten months post-op, I was able to go on an eight-night backpacking trip carrying 52 pounds. Through all these adventures, I was continuously experimenting with supplies and techniques for dealing with my ostomy outdoors and I tried to put myself in challenging situations to maximize my learning and face my fears. For instance, I could easily have changed an appliance before a wilderness trip, but instead I would purposely wait to do it in my tent in the backcountry just so I could get the practice and become confident with my ostomy in those situation.
Running: I waited seven months after surgery to go running and I progressed really slowly. For whatever reason, this activity made me much more fatigued than hiking or backpacking. I also had pains in various areas of my abdominal wall (almost like a stitch or side-ache in the muscles surrounding my stoma) for almost a year after surgery. I never knew exactly what caused this, but it always felt okay again a day or two after running so I chalked it up to muscle fatigue. After all, I had been cut open from belly button to pubic bone. That is bound to affect the abdominal wall a bit! Eventually those muscle aches went away and now I am able to go on long runs with no discomfort. I also wear a six-inch wide hernia prevention during this activity to help support my abdominal wall.
Rock climbing: This is the activity I took the longest to return to. Climbing involves many twisting and stretching movements and a lot of physical exertion. My surgeon never said I had to wait a year to go, but that is what I decided to do in order to give myself plenty of time to heal. I knew my ostomy was permanent and I wanted to do everything in my power to reduce the possibility of a long-term injury like a parastomal or incisional hernia. I was willing to wait as long as it took for my body to tell me I was ready. In the meantime, I worked on hiking and backpacking so it never felt like I was sitting around waiting to climb. To get stronger while I was waiting, I worked with my physical therapist to strengthen my core with gentle and safe exercises. By eleven-months post-op, I finally felt that I was strong enough to rock climb. I started in the gym by ascending routes that were easy and low-angle. Then I started to do the same outside. Over the following year, I slowly bumped up the difficulty of routes I was attempting and ventured onto more vertical terrain. At 22 months post-op, I led my first easy sport route. Now that I am over three years out from surgery, I am climbing in the gym on a weekly basis, doing overhanging routes and am back to scaling rock walls at my pre-surgery level. The only thing that I have yet to do is return to leading traditional routes where I place my own gear. Just like with every other strenuous activity, I always wear a six-inch hernia prevention belt.
Yoga: Like rock climbing, I waited a year to do yoga. I know I could have gone earlier, but I was busy working on the core exercises with my physical therapist and decided to wait to try yoga until my incision area felt solid. Interestingly, I found corpse pose to be one of my most uncomfortable poses. Lying on my back made my incision area ache like crazy. I think this was the result of horrible posture during the first four months after surgery when my incision was extremely painful. During that time, I was protective of the area, and I found myself walking in a hunched-over position. It took a while to reverse that and make my muscles to feel okay with being lengthened again. Nowadays, corpse pose feels fine and the only thing I still have trouble with are bridge positions. My body tells me to go easy on those and so I do! I wear a hernia belt while doing yoga too, but switch to a four-inch model as it is easier to bend with that width.
Bicycling: This sport was gentle on my body and would have been perfect after surgery save for one thing: my butt hurt from having my rectum and anus removed. And this pain was not quick to go away. It took almost a year for the deep muscles in that area to feel like normal again. Fortunately, once I hit six months-post op, my pain had at least diminished enough that I could sit on the seat without too much discomfort. Now I can spend hours on the saddle with no issues.
As I get into my new sport of biathlon, I realize that it is going to take a lot of hard work and patience to get better. I know someday when I am skiing a bit more efficiently and faster, those early times when I struggled up the hills or felt like taking a nap in the snowdrift will seem like a distant memory. It was that way with my ostomy. Getting back to my pre-surgery activity level took perseverance. My progress sometimes seemed dauntingly slow. However, as I moved towards that goal, I celebrated each small victory. Before I knew it I was back on my favorite slopes, trails and rock faces and my life was richer for all the tiny but amazing steps that got me there.
“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
Magazines? Bolts? Barrels? No… I wasn’t reading, building something or making wine. I was sitting in class learning all the terminology to shoot a .22 rifle in a biathlon race. Doug and I decided to give a new sport a try this winter and biathlon looked like a lot of fun. This weekend there was a clinic to learn about rifle safety and how biathlon races work.
I cross-country skied years ago, but it had been at least ten years since I had been on skinny skis. The shooting part was new to me, save for a couple of lucky shots (I hit the target!) with a BB gun in Wyoming. I was a little nervous to try both of these things together, but I am glad I did. I had a great time! There were many newcomers to the sport in the class and it ended up not being intimidating after all. I even managed to hit a few targets during the practical portion of the class. Of course–it will be much more difficult to do that while skiing in an actual race. One of the biggest challenges of biathlon is attempting to hit targets when your heart is pumping fast and you are breathing hard. There is a race in January that I am thinking of doing so I can get a feel for what this really feels like.
At the clinic, I was focusing on keeping my hands warm (the high temperature was a whopping 13 degrees), remembering how to skate ski and figuring out a lot of new vocabulary and skills. I was also hoping that skate skiing wouldn’t irritate the avascular necrosis (AVN) in my left shoulder joint (which fortunately it did not). One thing that I wasn’t thinking about at all was my ostomy. My altered plumbing feels very normal to me now and it rarely enters my mind except when I go to empty my pouch.
That wasn’t the case three years ago. At this time back then, I was a month out of surgery and struggling emotionally. It felt like my ostomy was the only thing I thought about during an entire day. Changes were overwhelming, I was full of anxiety and I wondered if life would ever feel normal again. Even though I had wanted my ostomy for treatment of my UC, I grieved over the changes to my body and cried every single day.
Those times were tough, but I know that I had to go through them to get to where I am now. Returning to an adventurous life after my ostomy didn’t happen all at once; it took a lot of small steps. Had you told me back then that I would be shooting a rifle at a biathlon course in a few years, I would have thought it was crazy! As I enter my fourth year with an ostomy, it is great that life feels so normal again and it is also wonderful to be trying a new sport challenge. I can’t wait to see where my skinny skis take me!
When life gets busy, some things end up on the back burner. Lately, that item has been sleep. There has barely been a night in the past couple of months when I have gotten more than seven hours of shuteye—usually the number has been closer to five and there have been times it has been less.
What has forced sleep onto the back burner? In part, it’s a large, glaciated peak named Mt. Rainier that I will be climbing very soon. Along with my full-time job, life lately has consisted of these four things: hiking peaks every weekend to prepare for Rainier, going to the gym in the evenings to train for Rainier, keeping up with my physical therapy so that my joint issues don’t crop up on Rainier, prepping and packing for the Rainier climb. See a theme here? All these things take up an incredible amount of time. Many evenings I don’t get to bed until late trying to squeeze it all in. Most every training peak we have done has required a wake-up time of 1 a.m. in order to make it to trailheads early so that we can summit peaks before afternoon storms roll in. And even then—we experienced static electricity and buzzing hiking poles on one peak as a rogue storm cloud blew in at 9:30 a.m. Yikes!
With the climb on the front burner and sleep on the back one, my blog has worked its way into the far rear corner of a little-used cupboard behind a large kettle. Tonight I clanked through the pots and pans and dug it out for a quick post. To everyone who has been tuning in to the blog or who have emailed or commented and not gotten an answer: thanks for your patience. I will be back to posting and corresponding regularly once I return from the trip. Below, I am including some photos of our adventures so you can see what I have been up to. Since my last post about five weeks ago, we have climbed six 14ers and four 13ers, including a three-day backpack trip with one of the adventures. Whew!
As I prepare for Rainier, I am starting to get a little nervous about some ostomy-related things. I am wondering what it will be like trying to discreetly swap out closed-end pouches while roped up on a team, including some strangers. I hope I can keep up with my hydration needs. I am afraid that during short breaks, all my time will be used dealing with my ostomy and that I won’t have time to eat and refuel. Will my ostomy supplies make my pack heavier than everyone else’s? I know it will all be fine, but there are a lot of unknowns on the trip.
One thing that has really helped me not worry are the amazing staff at the guide service we will be using, International Mountain Guides. I have explained what having an ostomy is like to them and have asked for their suggestions on everything from dealing with poop on the mountain, to questions about hydration and accommodating my gluten-free diet. It is always a little awkward bringing up the intimate details of life with an ostomy, but being open about it helps me get the answers I need. The staff has made the process so easy. I feel comfortable asking them anything which definitely helps quell the fears.
In many ways though, I love the uncertainty. The best thing I have discovered for becoming confident with my ostomy is to throw myself into new situations wholeheartedly. Through those occurrences, I learn that I can be resourceful and adapt to anything. I can’t wait to see what challenging experiences await me on the gorgeous ice-covered slopes of Mt. Rainier. No doubt I will come back from this adventure with my horizons stretched even farther.
Lately I have become part octopus, part mountain goat and part fish.
The octopus part of me has been juggling tasks at work like crazy. I spent the last couple of months organizing a big festival while also having a bunch of other programs to design and lead. One weekend I was teaching a nature-sketching workshop, the next a toddler class on toads. When I am done typing this post I need to practice my guitar for an upcoming campfire program. I have longed to come home and do something relaxing after this whirlwind, but that is not in the cards this summer. What is on the agenda is Rainier and I need to use every spare minute getting my body ready for the climb.
This leads me to my mountain goat side. Just about every weekend, Doug, his dad and I have climbed a 13,000- or 14,000-foot peak. Each time we do one of the hikes, we have been increasing the weight in our backpacks. Our last hike took us to 14,141-foot South Mt. Elbert. The hike was around 10 miles round trip and I was able to carry 45 pounds with 4,500 feet of elevation gain. I felt really strong and was ecstatic with the accomplishment because this is similar to what I will have to do on Rainier. I still have just over a month of training time before the trip so the plan is to keep doing hikes of this nature, including a few overnight trips, so that we can begin to move more quickly and efficiently on steep terrain with heavy packs. Some evenings after work I have also been going up to the Flatirons in Boulder, CO to hike some shorter and lower (though still steep) peaks.
So far, my joints have been doing great through my training regime. Part of this has to do with the comprehensive physical therapy program I am on. Between my shoulder, hip and Achilles exercises, I spend about 45 minutes most days on physical therapy. It taxes my schedule and makes me stay up later on some nights than I would like, but the benefits have been huge.
The other reason I think that my joints have been doing so well is that I discovered a new exercise: deep-water running. Hiking one or two big peaks each week with a heavy pack is hard on my joints, so in between I have decided to skip running, climbing, zumba and even biking to train as these all make my Achilles tendonitis flare up. I know I will return to all these activities when I get back from Rainier as my Achilles is basically already healed. However, for now I just don’t want to risk re-injuring it since things are going so well and I am able to hike long distances with elevation gain again. I had tried swimming to increase fitness, but the repetitive arm motions aggravated the avascular necrosis in my shoulder. I knew that I had to complement the long weekend hikes with something in order to get enough cardiovascular training in mid-week. But what activity?
I took to the internet to get some ideas and there I discovered the perfect training activity: deep-water running. Doing this exercise would help me build up cardiovascular fitness and muscle strength while giving my joints a chance to rest from the long hikes I was also doing. A quick Google search revealed several instructional videos on deep-water running. and it looked pretty easy. It basically involved putting on a floatation belt, going to the deep end of a pool and running almost like you would on land. The running form ends up being slightly different, but the videos provided enough guidelines that I felt confident to give it a go.
The first time I ventured to the gym to try the new activity I felt awkward because I didn’t travel very far when running in the deep end of a pool. On land, when you increase your running speed and intensity you generally travel a much greater distance. In the the pool, I can run as hard as possible and only travel 15 feet. It reminds me of crazy nightmares where I am being chased by ghosts, monsters or bandits and I am running really fast to get away but not getting anywhere. When I exhaust the length of the deep end, I turn around and head the other direction.
Running in small circles in this way doesn’t feel very interesting compared to running on a scenic trail, but I have to remind myself that it is really no different than running on a treadmill. However, the cardiovascular benefits are huge. Deep-water running really gets the heart rate up. Not to mention that the resistance the water provides has helped me build muscle–and not just in my legs. I move my arms underwater just like I do when I run on land, but because the resistance is so much greater, I have noticed my arms are getting a lot stronger too.
As on land, one has to pay attention to their running form in the water. I find that if I am getting lazy about form, I will start treading water instead of running. Treading water is not nearly as strenuous as running and does not get my heart rate up to an adequate training level. To make sure I am keeping my form, I will actually close my eyes and picture myself running on a trail or road and try to mimic that movement in the pool. Another trick that works well for me is to pick a stationary object on the edge of the pool and pretend it is another runner in a race that I am trying to catch. Both of these things help ensure that I stay in good form and keep my heart rate up.
For workouts, I usually deep-water run for about 45 minutes to an hour and then soak in the hot tub for 15 minutes which feels amazing on my joints. I have been deep-water running 2-3 times a week. A lot of people may be wondering if this influences my ostomy appliance wear-time. I find that being in the pool and hot tub this much does not affect my appliance’s ability to adhere. However, I change my appliance every three to four days regardless of what activities I do. Perhaps if someone was trying to get a seven-day wear-time, swimming might shorten it a bit.
I also do not have to do anything different to get my appliance to stay on in the pool. I basically jump in with my wafer as is (my wafer method is pictured in this post). Some people who have had issues with their appliances staying on in the water have great luck with products such as Sure Seals and Coloplast Brava Elastic Barrier Strip. I have tried both and they work well. I just find that my appliance sticks fine without them for the amount of swimming I do. If I were to take a beach vacation or a trip to a water park where I was in the water all day I would definitely use these. As far as swimming attire when I am deep-water running, I wear a variety of tankini tops with swim shorts and then an Ostomy Secrets Swim Wrap which covers the part of my pouch that sticks out above the low-rise swim shorts.
If you are looking for a gentle-on-the-joints exercise to gain strength I would recommend deep-water running. I only wish I had discovered this activity sooner after surgery. It would have been a great low-impact way to get back into shape once my incision was healed and I could return to water sports.
For now, it has become this octopus-mountain goat-fish’s best option for getting in shape for Rainier. It fits into the busy work schedule, is easy on the joints, and gets the heart pumping. I am feeling more optimistic then ever that as long as the weather cooperates for our ascent, I will be strong enough to stand on that summit.
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.
Happy holidays everyone! I hope that you are having a joyous season and are looking forward to the New Year.
After a rough week, some holiday fun is exactly what I needed. I had several days off from work, and got out to do some active things to get my mind off my recent avascular necrosis (AVN) diagnosis. On Saturday, I did a Rainier training hike up Bear Peak in Boulder, CO, with Doug and his Dad. The hike gained over 2,000 feet of elevation in roughly 3 miles and provided a great workout. I found that my pack did not bug my shoulder as long as I tightened the hip belt enough so that the weight was carried mostly on my hips (thank goodness for a great stoma placement that sits below my pack’s waist-belt). I usually use two hiking poles, but skipped using the left-hand one so that shoulder wouldn’t have to work too hard.
The next day I went to the gym for some Zumba (minus most of the arm motions) and then did a leg workout on the weight machines. On Christmas Eve Doug and I spent a little time up in Boulder where we enjoyed lunch at an Italian restaurant. When we got home, I baked gluten-free cookies in various fun shapes including trout, dinosaurs, and Christmas trees. Next day, on Christmas, we met Doug’s parents at Loveland Ski Area, and I also called my parents in Washington to wish them happy holidays from the lodge. It was a bluebird day on the slopes, and the fresh overnight snowfall made for some awesome boarding. I was concerned that pushing myself up into a standing position on my board after falling or sitting would hurt my shoulder, but it felt okay. My body is a little sore today, but that is to be expected as it was my first day of snowboarding this season.
When I was recovering from ostomy surgery and was dealing with grief and anxiety, I found that keeping busy and getting out to do things with my family and friends helped me feel better. I am finding the same thing is true as I deal with the uncertainty of a new condition.
That said, I have also found that the anxiety levels that have come with my diagnosis of avascular necrosis have felt 100 times worse than what I experienced with ulcerative colitits and my ostomy. I think this is due to several things. First, other than anti-inflammatory meds for pain and physical therapy to help maintain range of motion, there aren’t really any treatments to pursue at this time to halt the progress of my specific case of AVN. From my previous life experiences, when I had an injury or illness, there were always steps to be taken to try to heal the condition and help things improve. It feels very new and foreign to me to have a condition that likely won’t heal and is degenerative.
The stats also aren’t as promising with AVN as they were with my ostomy. Before my ileostomy surgery, I had heard that over 90% of people who had the operation for UC were happy with the results. (I certainly am!) Though there hasn’t been much research on steroid-induced shoulder AVN, I did find a few prognosis statistics in online medical textbooks and journals:
55% of those with humeral-head AVN from steroids get it in both shoulders
76% of those with shoulder AVN also get it in the hips (and 2/3 of that 76% get it bilaterally)
90% of those with AVN in the shoulder due to steroids eventually have it show up in another joint
Third, I am having trouble finding hopeful tales out there of people who have had steroid-induced AVN and went on to lead athletic lives. If you have had AVN related to prednisone and went on to climb, snowboard, backpack, etc., or know someone who has, please email me! When I was getting ready for my ostomy surgery, though there were horror stories out there, I was able to find at least some websites related to the athletic things people were still able to do without their colons. I am trying to find such inspiration for AVN.
Recently, I realized that I needed to get some help to deal with my heightened level of anxiety that came with the recent diagnosis. I couldn’t concentrate on anything, and I was a tearful, scared mess. After my fourth sleepless night in a row, I tried to lift a glass and found I was shaking so badly from anxiety that the water was practically sloshing out over the sides. I sat the glass down, and immediately emailed my primary care doctor. I must have reached her at a good time, because within two minutes my phone rang. We talked for about 20 minutes about the current turn of events and the anxiety. She made me feel so much better and told me that I had dealt with UC and my ostomy so well, but that this was likely just one thing too many for my mind to deal with. After our conversation, I decided to give some medication a try. She also recommended combining the drugs with counseling and meditation, so I have an appointment with a counselor in January and am taking a refresher course for mindfulness meditation in a couple of weeks.
I have always been very thankful that anti-depressant and anxiety medications are available. I know many people who have been helped with these drugs. However, this was my first experience taking them and, just like with my ostomy surgery, I found myself wrestling with stigmas. In my circles especially, where my friends and I are into holistic treatments and solving things through diet and exercise, I really had to fight to not judge myself for needing to take this medication and for being unable to solve my problems in a more natural way. But I also knew I was miserable and that the path to wellness isn’t always so simple. It is important to use all tools available. I am hoping that counseling, medication, meditation, exercise, physical therapy and the support of my family and friends will form the perfect combination to get me through this.
With that said, I promise that I will get back to writing about more things ostomy soon. Before finding out about the AVN, I was working on a post about some great ostomy wraps. Stay tuned for that and my continued Rainier-training adventures.