Reaching out (feat. new video)

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

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

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

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

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

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

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

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

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

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Mt. Rainier next summer!

I have a brand new goal to work toward for next summer: a climb of Mt. Rainier (14,411 feet) in Washington’s Cascade Range. Ever since Doug and I backpacked on the lower forested flanks of Mt. Rainier on the Wonderland Trail when we were in college, I have wanted to try the peak. Doug and I had talked of doing it a couple years ago with his Dad, but my illness and surgery delayed those plans. I am ready to dust off this dream, and the three of us will finally give it a go.

A painting of Rainier that I did in 2003. Can’t wait for my adventure there next summer! Copyright 2003 Heidi Skiba.

Though Doug and I rock climb a lot, we do not have experience on peaks with large glaciers (and Rainier is the most heavily glaciated mountain in the Lower 48). We know it would be too dangerous to try Rainier on our own. Therefore, we will be doing the ascent with a guide service, International Mountain Guides (IMG).  This company leads mountaineering trips all over the world and has some of the best guides in the business.

As it turns out, one of the owners of IMG, Phil Ershler, has Crohn’s disease. He and his wife, Susan Ershler, wrote the book Together on Top of the World. The book describes Phil’s challenges with Crohn’s disease and colon cancer and tells the story of the couple’s journey to climb the highest peak on each of the seven continents despite these odds. I went to see Phil and Susan speak in-person in Boulder shortly after they released their book in 2007. This was roughly a year after I had been officially diagnosed with ulcerative colitis, and  I was scared  of what my recent diagnosis might mean to my outdoor adventure-filled life. Their words gave me much hope. I read their amazing book shortly after hearing them speak and was further inspired.

As we started to research our climb with IMG, I emailed Phil to find out if he felt that any of the Rainier trips were feasible with my ostomy. The last thing I wanted to do was get excited about a trip only to find out I might be denied due to my medical condition. I was candid about the extra challenges I now face after ileostomy surgery, but Phil was very encouraging and suggested the route he thought might work out the best. He also warned me that Rainier trips fill very quickly and to get our application in as soon as the 2013 dates were published.

He wasn’t kidding. We knew the trip dates would be published while we were on our climbing road trip, so we were driving into town from our camp every other day to find a place to connect to the internet and check. Turns out the dates were published on the one day we didn’t get to town. By the time we checked the following day, there was only one trip left with three openings during the month-long window of time we wanted.  Thankfully we secured our spots!

Before being officially accepted on the climb, the guide service emailed me with more specifics on the route so that I knew what I was likely to face on the mountain. Among several challenges, the ascent to high camp involves carrying a 40-pound pack for five miles with 5,000 feet of elevation gain.  The final day of the route includes a five- to six-hour ascent to the summit and then a descent all the way to the trailhead. This means a round-trip travel time for that day of up to 16 hours. I had been very open on my application paperwork about my ostomy and the challenges it can present (such as dehydration and my limitations of carrying super heavy loads). The staff  wanted to make sure the conditions of the climb seemed doable to me. IMG was super accommodating and helpful about it all and explained some steps I could take to help meet my hydration and pack-weight needs within the confines of the trip. They were even set up to deal with my gluten-free diet.

After carrying a 40- to 55-pound backpack on several trips since surgery, I was sure that I could handle the load on this climb–especially with time for additional training. Just as I carried extra water on some long all-day climbs this summer, so I would on Rainier. I already had a lot of experience swapping out my ostomy pouches in frigid temperatures and with a harness on. I had no concerns about that part of things. I was sure the climb was within my abilities, but I also had to get signed forms from my regular doctor and surgeon stating that they approved of my participation. After outlining the specifics of the trip to them, neither had any reservations about me taking part in the climb. I was set to go!

It is just starting to settle in that I am actually going to be attempting Rainier. I can’t describe the excitement I am feeling for this adventure. The route that was recommended to me is the easiest one that IMG uses on Rainier. It is a three-and-a-half day trip starting at a beautiful place called Paradise (5,400 feet). We will carry our loads to Camp Muir (10,080 feet) and then move on to a higher camp at the Ingraham Glacier the following day. On the final day of the trip, we will attempt the summit (conditions permitting) and descend to the trailhead. Pack weights are less on this route than most others because some group gear is kept at the already-established camps.

I have to admit that I was really drawn to do one of the longer or more remote Rainier trips described on IMG’s site like the Emmons Glacier climb or even a six-day seminar that includes a lot of technical skill instruction plus an ascent of the peak. In my mind, I am still the woman who has gone on several 30-day backpacking and mountaineering trips into the remote wilderness carrying 75 pounds of gear on my back, but I have to acknowledge that my body has changed since then. I am still learning what it is capable of after surgery and this trip will be a perfect test. I am fully confident that it will be strong enough for this route, and after that, who knows? Maybe I will want to do a longer or more difficult trip on Rainier or another peak down the line. Right now, I am ecstatic to have the chance to take part in this climb.

Let the training begin!

The One Pass Ostomy Draining Device: a great product for the outdoors

Usually it is the big flashy things like climbing ropes, packs or tents that become my most coveted outdoor gear. Lately however, a much simpler and unassuming piece of gear has become one of my favorites.

A couple of months ago UPTT Inc. sent me a One Pass Ostomy Draining Device (OPODD) to try on my adventures. Due to my hip injury, I had to put off testing the device outdoors until a three-day backpacking in Rocky Mountain National Park in June. This, however, did not stop me from trying it indoors. The OPODD is an instrument with two flat rollers that clamps onto your pouch when you want to empty. With one downward motion, the device pushes all pouch contents swiftly out of the tail. Though it took a few tries to get used to the OPODD, once I had the hang of it I found myself reaching for the tool again and again. It is especially useful on those days when my output is thick and difficult to push out of the pouch. One quick swipe of the device and the output is forced out — no matter what its consistency.

I liked the device so much that I was soon using it every time I emptied at home. Though I usually leave the device at home because I seldom carry a purse, the slim design of the OPODD makes it easy to fit in a handbag or tote to be carried anywhere you go.

The OPODD clamps on the pouch. Emptying the contents only takes one smooth downward swipe.

After trying it out, I was convinced that the OPODD was great to use at home. Now it was time to take it into the wilderness with me. Ever mindful of my pack weight, I am very picky about what I choose to bring on backpacking trips. Something has to be highly useful to make the cut. It didn’t take long to realize how happy I was to have the OPODD along on my first backpack adventure of the season. In the middle of cooking dinner on our first night, the sky darkened and big heavy raindrops spilled from the sky. We swiftly donned our rain gear and dashed under the trees with our dinner. Despite being covered by tree branches and Gore Tex, my clothing soaked up the dampness and my teeth began to chatter from the chill. Leave it to my ostomy to decide that this was the best time to produce ample amounts of output. I had to make a trek to the camp privy in a full-on rain storm.

When I got to the backcountry restroom facilities (a pit toilet sitting out in the middle of the woods with no walls or roof), I quickly grabbed my OPODD, clamped it on my pouch, slid it down and had the contents emptied within seconds. Normally it would have been hard to manually work output to the tail-end of my pouch with such cold hands, but maneuvering the device was easy even with the chill-induced clumsiness.

Heading to the privy with my OPODD on a very chilly evening.

That night, the handiness of the OPODD proved itself again. When I do strenuous exercise such as backpacking during the day, my output often slows down or stops almost entirely. That means everything comes out later — often in the middle of the night. Getting up at 2 a.m and walking five minutes away from camp alone is unnerving.  Sitting down to empty my appliance by headlamp while surrounded by miles and miles of pitch black wilderness  spooks me out. It is one of those times when I swear twigs are being stepped on all around me, and I imagine mountain lions behind every boulder. Pulse racing and goosebumps fully engaged, I want to purge the contents of my pouch as fast as possible and get back to the tent. This particular night, I ended up having to endure this experience a couple of times. It was wonderful to be able to clamp the OPODD on my pouch, slide the contents out quickly and return to the comfort of my sleeping bag and the company of a snoring Doug.

My positive experiences that first day made the device completely worth its weight — and that is really the only issue with bringing the OPODD on outdoor trips. For those who try to backpack on the ultra-light side, the OPODD weighs in at 3.6 ounces. Not heavy by any means, but when one is trying to get their pack weight as low as possible, every ounce counts. Personally I feel that the extra weight is a small price to pay for the ease the device adds to emptying my pouch in the wilderness.

The only challenge I noticed with the OPODD was that it couldn’t slide over the Velcro at the end of my Convatec Pouches. This didn’t end up being an issue though. I would just push the output as far as the Velcro with the OPODD and then drain out the rest manually. This actually worked great because it prevents any output from getting on the device.

You can’t see my OPODD, but it is tucked in my pack as I head out on a backpacking  trip in the Mt. Massive Wilderness two weeks after the one in Rocky Mountain National Park. I plan to bring the OPODD on every wilderness excursion in the future.

As I continued to test out the OPODD, I  realized that it was going to become an indispensable piece of outdoor gear. Two weeks after the Rocky Mountain National Park trip, Doug and I were out in the backcountry again on a hike up Mt. Massive which included two nights of camping in the wilderness. This time the challenge was mosquitoes which swarmed around me every time I tried to empty.  One plus of having an ostomy is that you don’t have to expose your bum when emptying like you would when having a normal bm. Still, the skeeters were happy to attack the uncovered skin on my hands instead. The speed at which the OPODD allowed me to empty prevented me from getting many itchy bites.

From cold hands, to scary dark nights and blood-thirsty insects, the OPODD came to the rescue and allowed me to empty quickly and easily. I never plan to hit the trail without it again.

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.

A dot marks the spot

It was a gorgeously sunny October day last year when I packed up my harness and backpack and headed out the door. No, I wasn’t going on a hike or climb. In fact, the place I was traveling to wasn’t even outside. As I arrived at my destination, I walked down the sidewalk and through the double sliding door of the building. I made my way to the check-in line by the front desk and felt somewhat self-conscious with my huge backpack sticking out of a bag slung over my shoulder. A few moments later, I entered the crowded elevator, where people gave me quizzical glances. Such gear would be expected at a trailhead, but it was not the norm here. However, today, having my pack and harness was as important as it would have been on any hike or climb. As the elevator door opened on the ninth floor, I nervously walked to the department down the hall to meet my wound, ostomy and continence (WOC) nurse for the first time. It was time to have the site of my stoma marked.

I had been told to wear my favorite pants to the meeting so that the location would match with my clothing. However, I also decided to bring my harness and backpack. With outdoor activities being a huge passion in my life, I wanted to make sure that my stoma location would work as well as possible with my gear.

The paper cut-out shows where my stoma is. The location between the waist belt and leg loops prevents the harness from rubbing on my stoma. My belly button sits right under the waist belt.

At the meeting, the nurse shared important information about what to expect with output, eating, activities etc. Finally it was time to get the location marked. I felt a little funny explaining to her that along with making sure the spot worked with my belly and with my clothing, I also wanted to test it out with my harness and pack. Fortunately, she didn’t make me feel silly about my request at all, and soon I had a big blue dot on my abdomen about two inches to the right of my belly button and two inches below. This was a good location because it was below my belt line. This meant that gear or clothing waistbands would not rest on my stoma or prevent output from reaching the bottom of my pouch.

When I got home, I stood in front of the mirror and looked at the mark. I tried to picture what it would look like with a stoma there instead. Suddenly, my decision to have the surgery seemed very real, and I felt excited and nervous at the same time. To further discover how my new stoma spot worked with my clothing and gear, I filled up the ostomy appliance my nurse had given me with applesauce and taped it on top of the blue dot on my belly. I then went out to the garage to dig out every backpack I owned. The one I had taken to my nurse visit was my favorite overnight one, but there was also the brand new day pack I had just bought before I got sick again. I had only used it once. And then there was the large load-monster of a pack that I took on very long trips. Would that one work with the ostomy? One by one, I tried on the packs and they all seemed to rest well above my stoma. I was encouraged.

Continue reading “A dot marks the spot”

The long haul (feat. new video)

When I first got out of the hospital around Thanksgiving in 2010, I was overwhelmed with my ostomy appliance. I remember calling Doug on the phone in tears the first time I tried to change it on my own. Output had gotten all over the place, there was way too much skin showing around my stoma, and I had put the one-piece pouch on quite crooked. Doug had gone to the airport to pick up my Mom so that she could help take care of me during my recovery and wondered why I hadn’t waited until they got home so that they could assist with the change. I didn’t have a good answer. I have a fierce independent streak, and I wanted to prove to myself that I could do it on my own. However, after that disaster I quickly realized that I wasn’t ready. I needed their help, and Doug or Mom assisted me with every single change in those initial weeks.

Though I was feeling better about my appliance after a few weeks, I still wasn’t all that efficient or confident at changing. So I went back to my stoma nurse for a refresher. She gave me some more tips which helped and soon I could change my appliances by myself. Still, it was the one thing ostomy-related that made me cry out of frustration time and time again. My stoma always created output during the change, making things take a long time, and I struggled to get my pattern cut to the right size. I constantly worried that I wasn’t getting things perfect and that I was either going to strangle my poor stoma or that my skin was going to get eaten away from cutting the wafer too big. It was at these times that I had my biggest moments of doubt about backpacking. If I couldn’t even handle doing the changes in my house, with hot running water and oodles of washcloths at my fingertips, how would I possibly do it out in the wilderness? No matter how I tried, I couldn’t picture it as a reality.

The problem was, I was jumping to step 20 when I should have been concentrating on getting the basics down. I realized this was causing undue stress and anxiety, and I began to focus more on the moment and tasks at hand. I could figure out the backpacking part later.

Continue reading “The long haul (feat. new video)”

Memories of harder times

Last year at this time, I was just beginning my downward spiral into my final severe Ulcerative Colitis flare. Each day of the next few months will be an anniversary of something UC-related, and the flashbacks to those harder times will be abundant: there are the dates of my multiple ER visits, the admission for my 16-day hospital stay, my first Remicade infusion, the day I came to realize that surgery was my best option. It seems like reminders of my past illness are lurking around every corner. But then so are reminders of my amazing recovery.

Healing physically and regaining strength follows a fairly logical and direct path; recovering emotionally is a bit more circuitous. Sometimes it is hard for my brain to grasp all that has happened in the past 12 months. How in the world did I make it through the tough events of the year to get where I am now? It all seems to have gone by so fast, and I don’t believe my mind has fully processed everything yet.

Waking up from surgery on November 8th, 2010

Continue reading “Memories of harder times”