I first learned about the Crohn’s and Colitis Foundation of America’s Camp Oasis when I was stuck in the hospital for 16 days with my final flare-up of ulcerative colitis. I had been researching treatment and surgery options on my laptop from my hospital bed, and somehow stumbled upon a link to a website for the camp. As I was looking through the photos of the children at camp, I was immediately inspired. Knowing how hard dealing with UC was in my 30s, I couldn’t imagine how difficult it must be to have the disease as a child. All the things I took for granted as a youngster, like attending school functions, taking part in school activities like plays or sports, or going to summer camp would all be very challenging. The mission of Camp Oasis is to enrich the lives of children with Crohn’s disease and ulcerative colitis by providing a safe and supportive camp community. As I read about Camp Oasis, I was so deeply moved that I promised myself I would look into volunteering there after I recovered.
In February, I started to research the dates for the camp that takes place in my home state of Colorado. I was happy to discover that I had no work conflicts during one of the sessions and could request time off to be away for a week. I sent in an application, was interviewed, and found out a couple of weeks ago that I was accepted as a volunteer for the camp session for 7- to 13-year-olds in July. Today I went in for some vaccinations that are recommended for all camp staff and volunteers, and I am working on completing my paperwork.
Growing up, I loved being outdoors and my family did a lot of camping. I also took part in some summer camps with Girl Scouts and other organizations where we did nature study, sports, and arts and crafts. These early experiences had a major influence on me and laid the foundations for my love of nature, outdoor adventure, and art. Yet I often wonder: Had I developed IBD at a much younger age, would I have been able to be involved in these things? Thanks to Camp Oasis, many children with IBD do have the chance to take part in such fun, life-enriching experiences. I am eager to help children at camp discover all the amazing things they can accomplish. I can’t wait for July!
Me at camp when I was 11 years old. I am the one in the striped shirt on the far right.
On Sunday I climbed a few feet above the fourth bolt on the wall at the rock climbing gym, held my breath, and jumped off. I felt a few butterflies in my stomach as I free-fell 10 feet before my rope and harness caught me and brought me to a stop. Doug lowered me to the ground where a staff member gave me a smile and a casual “nice job” nod. I had just passed the test to be able to lead climb at our local rock gym. This was my second such test. I had also taken one in Fort Collins last month at the gym we sometimes climb at with Doug’s father.
In lead climbing, a climber clips their rope into protection placed in the rock (or on the artificial gym-wall) as they go. This “pro” is either: 1) temporary equipment that a climber places in cracks outdoors, or 2) permanent, preexisting bolts drilled into the rock or artificial wall. If a climber falls above the last piece they clipped, they will travel some distance before the rope catches. For instance, if a person falls three feet above their pro, they will fall that distance plus three more feet until the rope catches. Factor in a bit of rope stretch and the total distance could be 10 feet. The climbing gym wants to make sure climbers know how to safely clip their rope into the bolts on the wall and fall properly before they will allow you to lead climb.
Top roping is a different style of protecting the climber in which the person will only fall a short distance because the rope is already anchored at the top of the cliff or wall. When I began climbing again a year after ostomy surgery, I started with top rope climbing. Though I am now leading in the gym, it will be a while before I feel confident to lead routes outdoors again where there are more hazards.
Nothing has been a bigger symbol of my climbing progress as being able to get back on the “sharp end” of the rope. I was fearful of what a big fall might feel like after surgery. Would falling several feet in my harness hurt my stoma? Would the resulting tug make my pouch pop off? As has often been the case when returning to my active pursuits, none of my fears came true, and my stoma and pouching system held up just fine through the tests at the gym.
Lead climbing has not been my only measure of progress lately. While climbing weekly, I am quickly moving up the grades and getting on some overhanging routes (steeper than 90 degrees). When I returned to the rock gym five months ago, I didn’t even try to do any marked climbs — I just grabbed any hold on the wall. Soon after, I was only using the “on route” holds, but sticking to routes in the 5.7 range. Last month I ventured into the 5.8 and 5.9 territory, and last weekend I did my first 5.10-. I am feeling powerful and strong with not the slightest pain in my core.
When I got back into climbing, I told myself that I would be happy doing 5.7 routes for the rest of my life if that was all my body could handle. All that mattered was that I could climb again. However, I now see that these restrictions won’t be necessary. By conditioning my body, progressing slowly to build the required strength, and always wearing my six-inch-wide hernia belt, I am quickly returning to my pre-surgery climbing abilities. I look forward to warmer days when I can start climbing outdoors on a regular basis and head out on some much longer routes. And, of course, I’ll share some of those through videos!
Yesterday I cartwheeled, tumbled, and cratered countless times on the slopes while snowboarding. Normally, one might not be pleased with such a performance, but these mishaps were a major milestone for me. Up to this point after surgery, I have been very tentative while snowboarding. To fall so many times meant one thing: I was pushing it on the slopes and feeling absolutely wonderful.
Last year during my initial two times out boarding post-surgery, I fell a lot too. However, that was a different situation because those falls were caused by my muscles being weak. Yesterday, the tumbles happened because I was going faster, turning more aggressively, venturing onto some black diamond runs and even doing some tiny jumps (okay… I only caught a foot of air, but it was something). And most importantly, I had finally let go of some fears that had been holding me back.
During my earlier snowboarding trips this season, I was always afraid of falling. What if I twisted a weird way? Would my body be able to handle it? Though the fears were likely justified in the beginning, I was having growing suspicions that I was babying my body too much while snowboarding the last few times. So, this time I put the trepidations aside and went for it.
As I zipped down the slopes, I not only had some little tumbles, I also managed to squeeze in a few of my most dreaded fall types. One of these was an edge-catch going at a slow speed on a catwalk. My healed butt incision survived the resulting sling-shot slam on to my bum and back just fine. I also did a great snowboard nosedive into fresh powder. My body twisted as it came to a sudden stop, but weathered this graceful move as well as it did during the countless times before surgery. In the late afternoon, the sky clouded up and the light became flat, and I couldn’t see the ungroomed terrain beneath my feet well enough to gauge my speed. I soon found myself in a vertigo-induced cartwheeling fall. Yep, I came away from that one unscathed too.
Getting up from one of my many falls.
By the end of the day, my legs were so fatigued that I could barely link my turns. Doug and I had caught the first (well, about the 20th chair–we were in line) and last chairlifts, and except for a short lunch break, had snowboarded at a hard pace all day long. The conditions were phenomenal and it was just like the old days when we would do countless laps up and down the mountain, not wanting to waste a minute of time on the snow.
I sometimes think back to the time when I was sick with Ulcerative Colitis, and how it felt like my body had betrayed me by attacking itself and causing me to become ill enough to lose my colon. It has been extremely difficult to build up trust in my body after that. Even though I have recovered and regained my health, I still find myself with the unsettling feeling that something else could go wrong. Without trust in my body, it is very difficult to overcome fears that could prevent me from reaching my goals, not only in sports, but in life as a whole. I desperately need to believe in it again! As I put myself through the wringer on the slopes yesterday, I finally felt strong signs that my post-surgery body is working hard to regain my confidence.
My abdominal muscles are the sorest they have been since surgery. No, it isn’t because I started doing crunches, ascended the overhanging roof at the climbing gym or tried some difficult new yoga pose. It is due to having one of the most horrendous respiratory viruses I have had in years. I was hoping my flu shot would have prevented this, but alas, I caught something anyway. Each night for almost a week, I have been up all night coughing violently, and it has made my core very sore– especially around my stoma. Ever paranoid about getting a parastomal hernia, I cringe every time I feel that tickle in my throat. There seems to be no way to stop the cough though, and I know this just has to run its course. In the meantime I have been taking loads of vitamin C, doing sinus rinses, drinking various teas to ease my throat, taking cough medicine and cough drops and trying to get a good night’s sleep which has been almost impossible. Mother nature did provide some relief today in the form of a huge snowstorm. A snow day was called at my work, so I was able to have some extra time to rest at home.
Due to the worries of coughing pressure and my stoma, I have even been wearing my hernia prevention belt 24/7 for the past week. That, along with bracing my stoma area with my hand when I cough, gives my abs a bit of support while I cough. I eagerly removed my appliance on my change day this morning so I could check to see if I had done any damage with all the hacking. I was relieved to find that everything looked fine around my stoma, though the area around it is still sore to the touch. I am hoping it is just strained muscles and will clear up once I get better. It would be unfortunate to be so careful climbing and backpacking, only to get a hernia from something as simple as coughing.
Though it hasn’t been the best week due to illness, there was one absolutely amazing highlight. On Tuesday afternoon, I left work early because I felt so awful. I was about ready to plop down in my bed when I decided to check my Facebook. There I saw a message from my friend congratulating me on winning the WEGO Health Health Activist Best Kept Secret Award for Ostomy Outdoors. I had been feeling so crummy I had forgotten that it was the day to announce the award recipients. I was absolutely shocked to find out I was selected, and the excitement is still sinking in a few days later! Thank you to my husband, Doug, for posting the update when I was feeling a bit too sick and exhausted to write on my blog.
Thank you to everyone at WEGO Health and those who were involved in the nomination and judging process. I am so grateful and humbled to have been selected for the award among so many other dedicated and deserving health activists. Thanks also to everyone who reads and contributes to Ostomy Outdoors. Your thoughts, comments and stories not only help keep me motivated, but provide inspiration and encouragement to others who follow the blog. Together we can all make a difference and help spread awareness for ostomies.
In the initial months after ileostomy surgery, all I craved was normalcy. Life as I knew it had completely disappeared. Gone were the days of getting up and going to the office to work on a variety of enjoyable challenges like writing nature-education curriculum and leading hikes. In my free time, there were no more hiking, snowboarding or running adventures anywhere on the horizon. Instead, life revolved around the wiggly red stoma on my belly. My days played out around endless worries and looked something like this:
7 a.m. How am I going to get my appliance on while my stoma is spewing liquid output everywhere?
9:30 a.m. Okay… got the appliance on. Wait, is that skin showing between my barrier ring and stoma? Geez, maybe I should do it over. My output will certainly eat away my skin if it touches that exposed 1/8 inch. But will it destroy my skin more if I pull the wafer off so soon? I better just do it to be on the safe side.
10:30 a.m. I can’t believe it took me over two hours to get an appliance on and this second one still doesn’t look that great. I need to call Doug and vent about it or I will cry for hours.
10:45 a.m. I need to drink some water. I am already way behind on my liquids today and I haven’t eaten breakfast yet either. I am really not hungry, but Dr. Brown said I need more protein. Is a protein shake and eggs enough?
11:30 a.m.I have only been up for a few hours and I am already tired. Better go take a nap. Am I always going to have to sleep this much?
1:30 p.m. Is that just a regular itch or is it from output touching my skin? Man, this incision hurts. I am not hungry, but I need to eat with my pain pills. I better have some lunch. When are these pain pills going to kick in? Drat, maybe I should have just sucked it up and not taken the pills. What if I become addicted to them?
2 p.m. Why am I watching this stupid TV show? Shouldn’t I be doing something productive? I am just too tired. Dang, I forgot to order those Hollister samples again. I am too tired to do that too. I can’t believe I am about to take another nap. I am supposed to be going for a walk right now, not sleeping.
3:30 p.m. The neighbors must be wondering what happened to me. I am walking so slow and hunched over, but it hurts too much to stand up straight. Is this two-block walk through the park really all I can muster? I can’t believe how much this hurts. This used to be my warm-up walk before I ran five miles, and now I can’t even cover this short distance. And I’m walking as slowly as a turtle.
4 p.m.I miss Doug. I am so lonely stuck here by myself. When is he coming home from work?
5 p.m. Doug is home! Doug is home! Doug is home!
6 p.m. Is this too late to be eating dinner? I am supposed to eat before now, but that isn’t very handy. Is four weeks post-op too soon to eat steamed broccoli if I chew it really, really well? I am so hungry for veggies. What if I get a blockage? Or horrible gas?
7 p.m. Wasn’t that just the 12th time I emptied my pouch for the day? When is this output going to slow down! It is like water. Have I had enough liquids to drink to offset that?
9 p.m. Okay, time to take a shower. Can I get this appliance wet? I better tape plastic wrap all over my belly just to make sure it stays dry and doesn’t peel off.
10 p.m. Time for bed. I should lie on my right side all night just in case I leak. Don’t want to get stool into my open wound.
11 p.m. My back hurts. I sure wish I could lie on my left side but I am too afraid.
12 a.m. Better get up to empty my appliance just in case.
2 a.m. Better get up to empty my appliance just in case.
4 a.m. Better get up to empty my appliance just in case.
7 a.m Thank goodness it is morning but I don’t want to get up. I am going to lie here and cry for a while. Will my life ever be normal again?
And so it went for the initial couple months after surgery. I was overwhelmed and depressed that my entire life now seemed to revolve around my stoma. I tried and tried to picture what things would be like when everything settled down, and I actually learned how to manage my ostomy, but it seemed impossible. I couldn’t see beyond the hard times I was facing in those moments. It was particularly difficult to imagine how I could possibly ever do outdoor sports like snowboarding again.
I wish I would have had a crystal ball back then. Had I, I would have seen that I shouldn’t have worried so much. My ostomy output would settle down as my body adapted. I would figure out my systems and become more efficient with them. My incision would heal. Someday in the not so distant future, my ostomy would feel like a regular part of my life as I returned to work and went on outdoor adventures again. In the crystal ball, I would have seen the point I am at now when everything is so much easier. The normalcy I craved after surgery has been restored to my life.
Last Sunday was a beautiful powder day in the mountains, and Doug and I headed up to go snowboarding. I decided to film the day’s events and create a video showing a typical day on the slopes with my ostomy. I realize everyone’s experiences are going to be a little different regarding their emptying schedule, when they eat, etc. What I hope to show is that once a person adapts to life with an ostomy and gets their own particular systems down, life can feel wonderfully natural again.
It wasn’t very long ago that I wrote I would be going out to run: rain or shine. The one weather element that I had forgotten about is the fierce wind that we often get here on the Front Range of Colorado in the winter. We have had some insanely windy days lately with gusts in the 60+ mph range. I can run in the cold and with all sorts of precipitation, but the wind is unbearable for me. It takes my breath away and blows sand in my eyes. After getting beat down by the wind on several runs, Doug and I decided it might be worthwhile to join a gym again so that we could work out on the bad weather days in more comfort.
Doug and I had joined gyms before and we always made good use of our memberships. They helped us stay motivated to work out. However, our memberships were always the first thing to get axed from the budget during financially hard times. Though money is tighter than ever with medical bills from last year’s health woes, I know that any dollars going into improving my post-op health and fitness are well spent and totally worth sacrifices in other areas.
Two weeks ago we toured a few gyms in our area and joined one that has a plethora of workout options. Running outdoors will always be my favorite after-work exercise activity. Beyond that though, I really like to mix it up. This gym has so much to offer that I have trouble deciding what I want to do on a given day. Yoga, aerobics classes, climbing on the wall, swimming and even ice skating on a huge rink are all options.
Swimming, climbing, yoga or ice skating... which should I do tonight?
The first thing I decided to do was the yoga class. I love yoga, but hadn’t practiced since my final UC flare and surgery. Even a year out, I still have a lot of post-op muscle tightness. I am hoping that doing yoga once a week will help restore some of my flexibility as well as get my posture back in line. I have taken two classes so far and it is going well. There are some poses that I find really difficult… especially anything with even a slight back bend. And crazily I get twinges of belly pain when I lie flat in corpse pose which used to be my most comfortable pose ever. A friend suggested that perhaps it was due to scar tissue in my abdomen. I notice this mild pain when I lie flat on my back and do body scans for meditation too. I am hoping as I continue to stretch out through yoga, it resolves. Regardless of how my body is feeling on a given day, I practice yoga to the best of my ability and make modifications as needed.
I have also been swimming at the gym once a week. I usually start with a 10 minute soak in the hot tub and then swim laps for 30-40 minutes, ending with another 10 minute soak in the hot tub. I also always take a few trips down the indoor water slides to end my workout session. I have no issues with my wafers coming loose with swimming and still get my normal 3-4 day wear time.
I even tried a new aerobic class for me called Zumba. I have absolutely no dancing talent and it was really hard following the moves of the instructor, but I didn’t care. It was just fun to be dancing around to the upbeat music and pretending that I knew what I was doing. I think I am hooked.
In the next week or so I want to get on the weight machines, do some ice skating and try out the climbing wall. Doug and I usually head to a separate, much larger climbing gym every week or so, but it will be nice to use this smaller wall in between those visits.
One interesting thing about going to the gym is the subject of changing in the locker room. Usually I change at home or before I leave work and wear my workout clothes to the gym. However, there are times when this isn’t convenient, or I need to change out of a wet swimsuit. Over the past two weeks, I have made great strides in being more comfortable with the possibility of others seeing my pouch. At first, I would change in the shower stall, but I hated it because it is damp in there and it was hard not to get my clothing wet. Recently, I have just been changing out in the open, but being discreet by facing the locker doors. Another technique that works is to change my top first and then pull it down to cover my ostomy pouch as I change my bottoms. Still, I have decided I don’t care if anyone catches a glimpse of my appliance. Maybe sometime down the road the person who saw it will end up knowing someone who is facing ostomy surgery. Perhaps they will think back and say hey, I saw a woman who had one of those at the gym and it seemed like she was confident with it.
A second item of note is that I signed up for a free personal training session. I had to fill out a medical form, and I was very open about my ostomy on it. I am still waiting for a call from the trainer and am curious to see how it will work out and if they will have ostomy-related questions or if they will have good suggestions for workout modifications at this point, especially with my abdominal muscles.
So overall, I am super excited about all the potential this gym has for my health and for taking things to the next level in my fitness goals.
Happy New Year everyone! I hope 2012 brings health and many blessings.
As I set out to write my first post for 2012, I couldn’t decide if it would be best to look forward and write about my goals for the coming year, or if it would be better to reflect on highlights from 2011. As you are about to find out, I like to juggle a lot of things. I might as well keep up with that tendency and write about both in the same post!
I have never been a fan of creating a formal list of New Year’s goals. I have a lot of interests and love them all… everything from activities at work, working on projects involving ostomy awareness, artistic endeavors, fitness goals, to trips Doug and I want to go on. I get a little frustrated when I try to make a formal goal list because there is so much I want to do! I soon discover that it is probably unrealistic to accomplish it all. That said, there are a few things that are a high priority this year.
I want to do a better job of keeping in touch with my friends and family. To all my family and good friends who are reading this: did most of you get a Christmas card from me??? (Rhetorical question!) I didn’t think so. The same busyness I mentioned above sometimes keeps me from answering emails, writing or calling people, and spending time with my loved ones. I want to be better about making sure these people know how much they mean to me.
I want to continue sharing my thoughts on this site. No need to elaborate much more on this one. I have a huge passion for showing people what is possible after ostomy surgery and hope to keep writing and creating videos.
I want to get back into working on art. My creative endeavors like drawing, painting, blockprinting and keeping illustrated journals are also big passions for me, and I keep another website covering some of those pursuits. If you visit the site you will see that my last post was completed in August. Not so good. And there is a printmaking project that has been gathering dust on my art studio table for over a year. Art needs to be part of my life again. I realize that may mean a few less posts here, as there are only so many hours in a day, but I am going to try to balance both…. all while working and doing outdoor adventures and exercising. Whew! It is going to be a busy year.
I want to go on a climbing road trip. Two weeks, camping near the crags, waking up and firing up the camp stove, climbing routes all day and then coming back to camp to relax with a beer only to do it all again the next day — that is what I am longing for this year. When Doug and I were in college we spent a summer living out of the back of our truck and traveling the west, climbing pretty much non-stop. I am psyched to get back to that, even if it is only for a couple of weeks. I wasn’t strong enough for this type of trip in 2011, but I will be in 2012 and look forward to doing it with an ostomy!
I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December. I am only up to running about three miles right now. However, I have almost a year to train and it seems like I am finally getting off the plateau I have been stuck on. I am feeling so much stronger on runs lately and plan to inch up the intensity a bit in the ensuing weeks.
Now to rewind and reflect on 2011– the first full year of living with my ostomy. There have been so many highlights this year and most of them have already been covered in posts. Great times with friends and family, fun outdoor trips, stellar surgery results– I could write a book on all the amazing things about this year. To keep this post from becoming as long as a large novel, I will cover just a few major categorical highlights. Here are the best of the best for 2011:
Discovering my body’s ability to heal. There are many, many examples of this, but there is one that sticks in my mind the most. Ten weeks after my initial surgery, I had to have an operation on my incision, and my surgeon ended up removing some sutures that my body had reacted poorly to and then fixing things up. The resulting wound had to heal from “the inside out” with the help of a wound vac. Seeing that wound for the first time was a surreal experience. It was 13 cm long by about 3 cm wide and another 1 cm or so deep. I had to detach mentally to view it, and when I did, it reminded me of an interesting dissection project from biology class. Actually, my scientist-side was pretty fascinated– it was certainly not a part of me that I had ever gotten to see before (and hopefully never would again). Right before my eyes I could see my abdominal wall and the layers of skin tissue on the sides of the wound opening. What happened in the following six weeks was even more captivating (okay… except for the pain of the wound vac which was really bad for me at times). The wound filled up with healthy red granulated tissue and then sort of zipped itself up from top to bottom. How did my body know how to do that? It was absolutely amazing! I thought I would end up with a heinous scar, but it actually looks pretty great considering the wound that was there before. Now whenever my body is healing, even from something as small as a pulled muscle, I think about that experience. The body’s ability to heal is truly amazing and something that 2011 will always remind me to celebrate.
So many firsts! After I was sick for a while and then started to feel better, life just got so exciting! In the beginning, the firsts are so small. There was the first walk after surgery, the first time output came out of my stoma, the first appliance change. Things progressed from there… there was the first time I got brave enough to eat a peanut, the first try at putting my favorite jeans back on, drinking my first beer. Then there were all the athletic firsts… snowboarding, hiking a 14er, running, climbing. I am still hitting firsts all the time. Yesterday was the first time I climbed a 5.9-rated route at the gym. It was a delicate climb that required more balance than brute muscle power. Still, it was the first time that I felt like I was back in my old climbing body, doing some of the more athletic climbing movements that I used to. What a way to end 2011!
A new outlook. I write often about how being sick and going through major surgery has changed the way I view things. This has been one of the biggest blessings of 2011. I find examples of this new outlook in even the smallest moments of my life. For instance, a few months ago I was getting ready to lead a campfire program at work. It had been a long week and I was feeling tired and “grumbly” and not into it. Suddenly I remembered how much I missed my job last year and how much I longed to be out in the parks leading programs again. I immediately changed my attitude, got excited about the program and fully seized the moment. I got up on stage and shared information about all the amazing changes animals were going through to prepare for winter. I told stories, sang goofy songs with the kids and had one of the best programs ever. On the drive home I was overcome with emotion because it had felt so good to be out there again doing what I love. Life had given me back all I had ever hoped for and here I had been sulking just a few hours earlier. It was a big reminder to live with a spirit of thankfulness for what I had. Gratefulness, the ability to live more in the moment, the capacity to deal with uncertainty and change– these are just some of the ways I have changed for the better I have made in 2011.
As soon as I am done with this post, I am going to go for a run. I love the thinking-time running gives me, and inevitably, I always start composing blog entries in my head. I am sure as my feet hit the pavement and my thoughts drift off, I will think of hundreds of other things I could have included in this post. Suffice it to say that it has been an incredible year of recovery, growth and change. I am so excited to see what the next year will bring!
After a whirlwind summer of camping, hiking and backpacking just about every weekend, outdoor adventures slowed down for the two of us. Snow and cold returned to the high country and the ski areas weren’t open yet. Once they did open, the snow was abysmal and I didn’t want to risk getting hurt by boarding on icy slopes. We were running and rock climbing (indoors) regularly, but we were not heading out into the mountains. At first, this slow down provided a much-needed break from the exhausting pace we had been keeping up over the warm months. It was fun to stay home on the weekends for a change and watch movies, sleep in and make gourmet breakfasts, and to draw, sew and do some of the other quiet hobbies I enjoy.
However, by December, I was antsy. The period of rest had been great initially, but now I felt like I was spending too much time away from the backcountry. Here I was finally feeling strong and healthy again, and I was sitting around at home weekend after weekend. Last year at this time I would have done anything to be able to go outside and climb a peak on the snow-covered tundra. Now that I was able, it really bothered me that I was not seizing the moment to do so. It was time to get out of the house and back into the high country. As I began to research possible summit ascents, one of my friends suggested that Doug and I try 13,427′ Grizzly Peak– a climb she and her husband had done several years ago in the middle of winter. It sounded perfect; now we just had to wait for a good weather window.
Favorable conditions for hiking above treeline do not present themselves very often in winter. Frigid temperatures and heavy snows can make the high peaks very inhospitable places. The safest winter peak ascents, including Grizzly Peak, involve staying on high ridge tops to avoid avalanche danger. However, these places are extreme weather-wise. The high winds on ridges can expose one to dangerous wind chills and, when mixed with snow, can create whiteout conditions that make the easiest hikes impossible.
I began to watch the forecasts in hopes that one of our days off from work would line up with good weather. Finally, the magical combination presented itself: a Sunday predicted to be 40 degrees at 11,000 feet with cloudless skies.
I knew that dealing with my ostomy on a winter summit attempt could be challenging. Even when the temperatures are above freezing in the mountains, it is almost always windy which makes the air feel absolutely frigid. Because of this, I decided to use closed-end pouches instead of drainables. I knew that this would help lessen my exposure to the elements since swapping out closed-end pouches is super quick. This was a wise decision as the conditions on the hike ended up being far colder than we anticipated. My latest film covers this excursion and shares some of the important things I learned in managing my ostomy in cold temperatures.
There are times during the winter when it feels so good to just stay home and cuddle up with a book and some hot chocolate. But Doug and I love balancing out those slower-paced moments with adventurous trips into the winter backcountry. Yes, these excursions are often fraught with weather uncertainties, numb toes, wind-burned faces and, now, cold fingers from changing ostomy pouches, but they are also filled with immense beauty. It is during these times when life feels most vivid and when our best memories are often made.
Realizing that today is the Winter Solstice and has the shortest daylight period of the year, it is a fitting time to write about my recent nighttime jogging adventures with Doug. Just about every evening after work, we have strapped our headlamps to our noggins and hit the wide dirt trail near our house. Running by headlamp is a unique experience. There was one night that we saw four glowing eyes in the distance, and I froze in my tracks thinking they belonged to a couple of mountain lions coming down from the mesa near our house. As the animals approached, I was relieved to see that they were happy canines out for an evening stroll with their owner. Another night we saw a coyote trot across the trail, forming a silhouette against the dusky sky. We went right over to examine the tracks he left in the snow. Last night I got dizzy as giant snowflakes were illuminated by my headlamp, giving me the feeling that I was moving forward through outer space. Whether the sky is moonlit or pitch-black, temperatures are balmy or frigid, or clouds are misting rain or dumping snow, we will be out there. Lately, running and other exercise has taken on a new importance.
A couple of months ago, I went for my yearly physical. Because of my prednisone use over the past few years, my physician scheduled me for a bone density test. Within a week, the results came back showing that I have osteopenia, which is weakening of the bones and can be a precursor to osteoporosis. My doctors at the hospital last fall had warned me that this would be a possibility since I had been on such high doses of steroids while trying to get my flare under control, so this news wasn’t a huge surprise to me. Still, it was not something an active person like myself wanted to hear.
I first discovered the amazing healing powers of prednisone about a year after being diagnosed with ulcerative colitis. A bad flare had led me to the ER where I was prescribed a 40mg taper of the steroid. I couldn’t believe how fast it worked. Within 4 days my symptoms completely cleared up. I was even able to climb the 14,255-foot Longs Peak two weeks later. However, foreshadowing what would happen when I took prednisone in the future, my symptoms returned when I got down to 10mg. My doctor added another tapering dose which finally ended the flare up. Over the years, it seemed like each time I needed prednisone, it became less and less effective. During my final flare, even high doses did little to control the severe ulcerative colitis.
As surreal as it can be to run the trail near my house a night, it is even crazier to think that such a small period of time on steroids could have had such a long-term effect on my body. I can’t remember the exact dosages and times I was on prednisone over the years, but the following list provides my best recollection:
July 2007- a 40mg taper over about a month’s time and then a few more weeks added when the flare returned
August 2008: a 40mg taper over about a month’s time
April 2009: a 20mg taper over two week’s time
August 2010: started a 40mg taper and ended up being on varying doses of oral and IV steroids for the next 3.5 months, with the highest dose being 80mg
After tallying these times up, it turns out that 6-7 months of my 39+ years of life was spent on varying dosages of steroids. It doesn’t seem like much in the grand scheme of things, but was enough to effect my bones. I know that each of those doses was necessary to get my disease under control at the time, but I am glad that, barring any other health issues, I will not need to take prednisone anymore.
This brings me back to the topic of running at night. Because I am no longer on steroids, my physician thinks that my osteopenia might be reversible with calcium and vitamin D supplementation as well as at least 30 minutes of daily weight-bearing exercise like running. In three years I will be tested again and hopefully it will show less bone weakness. In the middle of the winter when days are short, running at night provides a convenient way for me to get exercise. Though heading to the gym is also a possibility, I have always enjoyed the simplicity of grabbing my running shoes and heading right out my front door.
In years past, I would come up with all kinds of excuses as to why I couldn’t stick to my workout routine in the winter… it was too cold, too icy, too dark and my schedule too busy. But those rationalizations no longer sit well with me. Excuses do not strengthen bones.
One of the questions I see posted on forums often revolves around the ability to drink alcohol with an ostomy. Though every ostomate is different in what they can tolerate, I thought I would share my experiences. Now I will say straightaway that I am not a big drinker. Months can go by where I don’t drink at all. I even sometimes have beers in the fridge that reach their expiration date. Crazy, I know. However, even though I don’t drink that often, there is nothing like cracking open a cold beer after doing a successful climb, relaxing with a brew at a baseball game or enjoying libations at a special occasion.
Enjoying drinks with friends is something I hoped I could still do after surgery, and I am happy to report that I have no problems drinking wine, beer, or other alcoholic beverages with my ileostomy. Here are a few of the things I notice:
If I drink on an empty stomach, I get pure liquid output that rushes through my system, and I can get dehydrated. I make sure to always eat a meal when I drink alcohol. When I do eat food with the alcohol, my output isn’t affected at all.
Even when things don’t rush through, I notice that alcohol still dehydrates me. Therefore, I make sure to drink a lot of water. Last night, I had two drinks and drank two 12 oz glasses of water with each one.
I can drink wine, beer (as long as it is gluten-free due to being gluten intolerant) and any other alcoholic beverages. I notice no appreciable differences in the way they affect my stomach or output.
Some people find that carbonated beverages like beer can cause gas which makes their pouch puff up. I have not found this to be the case and notice no difference from the normal “poofing” I get everyday.
The effects of alcohol seem more pronounced now that I have an ileostomy. I am very careful to assess my transportation options before I drink any alcohol.
Last night there was much reason to celebrate. My friend, Sarah, had passed her prelims and is now a Ph.D. candidate for her Graduate Degree Program in Ecology. Her final next step will be to complete her doctoral dissertation on the research she is doing on elephants in Africa. She even started an organization to help the Tanzanian people form a personal connection with the wildlife in nearby Ruaha National Park in hopes that it will lead to a local ethic of conservation. Sarah is a super inspirational person, and had worked so hard to reach this milestone. Celebrating over margaritas and beer was most definitely in order.
Amanda, Sarah and I celebrating after Sarah aced her Ph.D. prelims.
I often write about how meaningful the small things in life feel after being sick. It felt so good to be sitting there in the bar last night, laughing and enjoying drinks with my friends, basking in the camaraderie and hearing stories of hard tests and accomplishments reached. I looked around and saw everyone at the booths and tables around me smiling and having a fun time. It was one of many moments this year when I had the profound sense that everything is wonderfully normal and good in my life again.
Ostomy Outdoors 
