A winter ostomy adventure (feat. new video)

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.

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Happy holidays everyone! (feat. new video)

Homemade lasagna is about to come out of the oven, my wine glass is full, and my body is feeling wonderfully worked out after spending a glorious Christmas day flying down the slopes on my snowboard. Doug and I quickly put together a little Christmas video covering the adventure (and a special thanks to my hubby for editing it all during the short commercial breaks during the Green Bay Packers game). Basking in the Colorado sunshine, hanging out with my sweetie and being elated to do something I love so much became the perfect equation for the silliness in the video. It was an amazingly fun day, and I am blessed to be feeling so well again.

 

I hope you all had a joyous holiday season with those you love. I also send my thoughts out to those who are still in the midst of illness or recovering from surgery. May the upcoming year bring bright days for everyone.

Running ahead of osteopenia

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.

Running by headlamp.

Cheers! Alcohol and the ostomy

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.

Healing the mind as well as the body

I was talking to a good friend on the phone the other day and he was commenting on how happy I look in my Ostomy Outdoors videos. He is absolutely right! I am completely elated to be doing all the things I love again. Some days it seems like I walk around immersed in a complete sense of wonder over how good I feel. To be ill for years and then get a second chance to be healthy again is an amazing thing, and the resulting smiles, laughs and even tears of joy are the real deal.

However, when I was recovering from surgery, there were some times that those smiles were nowhere to be found. About five weeks after my operation, I got lost in a mental funk. I had some complications that had sent me back to the hospital a couple of times after the original surgery, and I had started to worry about all the additional things that could possibly go wrong. On top of that, I seemed to be spiraling into sadness in general. I had trouble sleeping and completely lost my appetite… one morning it took me two hours to eat a hard boiled egg. I didn’t feel like talking to my friends and would lie in bed in the morning, dreading the thought of getting up and starting the day. Usually a motivated person with a gazillion projects on the horizon, I became listless and had little interest in doing anything. Longing for the days before UC, I would curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.

These feelings completely caught me off guard because I was sincerely happy with my decision to have surgery and was completely pleased with the results. I had no regrets whatsoever. Yes, I had gone through some complications, but I knew that the most important thing — my actual ileostomy — was functioning perfectly. I had so much to be thankful for. I had the best surgeon imaginable, my stoma was a gem, my pouch stuck wonderfully, I had only experienced one appliance leak due to wound drainage getting under the wafer, and food was traveling through my ileostomy without a hitch. How could I be so satisfied in one sense but still so sad in another? It made absolutely no sense to me.

Continue reading “Healing the mind as well as the body”

Hand jams and high steps: outdoors on the rock (feat. new video)

Five days ago at our local crag, I stood at the base of a short, easy (5.6) route, looking up and assessing the possible moves and thinking about how my body might handle them. This outdoor climb (on real rock!) looked easy and had obvious holds, but it was still much different than the indoor routes I had been training on. In the gym, the wall is peppered with holds and any time one of the routes (marked with colored tape for various difficulty levels) would get too hard for me, I would simply grab a hold marked with another color to make it easier. It was a different world outdoors. Here, the holds were spread out with far less to choose from than in the gym.

Until that moment, the last time I had been outside on the rock was in July of 2010. Doug and I had taken a nine-day trip to a climbing area called City of Rocks in Idaho. Amazingly, this trip fell right in the middle of the only true remission I ever had in my 10-year history with Ulcerative Colitis. I remember walking to the outhouse in the dark to administer my maintenance dose of Rowasa and wondering if I even needed it. I would check my toilet paper whenever I went to the bathroom, certain there would be blood on it. Astonishingly, for the first time in a very long time, it looked normal. Every time I got to the top of a cliff on that trip I remember pondering how amazing I felt. I seriously thought I might have somehow been spontaneously cured.

Enjoying remission on top of a route at the City of Rocks in July 2010. This was one of the last climbs I did before falling ill with the final severe UC flare that led to my surgery.

Sadly, that joy didn’t last. Two months later my final raging ulcerative colitis flare came on and I found myself lying in a hospital bed instead of sitting on top of a cliff. When I was ill it took a ton of effort just to bend over and pick something up off the floor. I sometimes thought my climbing days were over for good.

But they weren’t. One of the main reasons I chose to have a permanent ileostomy surgery was because I felt that it would give me the best chance of returning to climbing. Still, it was a long road to get back to the rock, and the strenuous nature of the sport made me apprehensive and cautious. It took a lot of time to heal, get strong (I’m still working on that) and gain confidence, but the moment had finally arrived to attempt my first outdoor route after the operation.

Many months had gone by since I last sat at the base of a cliff lacing up my rock shoes in anticipation of an ascent. This time, as I began to climb, I barely recalled what it felt like to dance up a route with the sun warming my back and the wind gently blowing my hair against my face. I had forgotten how amazing it was to have my mind focused only on the cracks and crimpy holds in front of me and nothing else. These things had once been so beloved and familiar to me, and though they now felt foreign, I could sense my body waking up and remembering with every reach, jam, and high step. My passion for climbing had been rekindled, and this was only the beginning.

If you’re new to Ostomy Outdoors, don’t forget to check out all the other adventure videos we’ve put together for you.