Tag: UC

Mt. Rainier next summer!

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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!

On the Road

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When Doug and I became a couple during college, our very first group purchase was a spatula. We were heading out on a camping trip and realized we would have no way to flip the pancakes we were making for breakfast the next day. We stopped at a grocery store en route to the park and pooled our funds to acquire the best turner that $1.99 could buy.

Our next group purchase was a bit more substantial — a slightly beat-up 1985 Toyota 4×4 truck. The lakes of northern Wisconsin, wilderness of Michigan’s Upper Peninsula, and craggy climbing areas outside of Madison were calling us, yet we had no reliable way of getting there. The truck became our key to adventure. Every weekend we would load it up and head out to the wilds. During a couple of college summers we hit the open road of the western United States for months on end — living out of the back of the pickup and stopping at every climbing area we could find along the way. Those weeks of roaming freely and opening the map each day to decide where we wanted to go next provided some of our most beloved memories together.

One of the things I longed to do most after surgery was to go on a climbing road trip again. I wanted to remember what it felt like to climb all day, cook up dinner at camp, talk about the day’s adventures over a crackling campfire, and then get up to do it all again the next day. Last summer, I wasn’t quite strong enough to rock climb. After training and gaining strength over the winter, my body finally felt ready to spend day after day doing climbing routes. In the beginning of September, Doug and I set out on a 17-day adventure that would include a week of climbing at City of Rocks in Idaho and several days of climbing at Smith Rock in Oregon. While in the Northwest, we also planned to spend time with some good friends who lived in Bend, as well as meet up with my parents for some sightseeing.

As we were traveling and climbing, I noticed that quite a few things had changed since our road trip days long ago:

  • There is now something called the internet. In our college days, I carried a small leather address book and actually wrote to my friends on paper while on the road.
  • Cell phones have replaced pay phones. We used to have to to load up our prepaid calling cards and look for a pay phone to let our parents know we were still alive. Now we just searched around Almo, Idaho, until we discovered the cell phone reception sweet spot. (It was pretty good at the northern-most table on the patio of the Rock Stop general store.)
  • Our trip food budget expanded to include things other than rice and ramen noodles. Though we still cooked most of our meals on this vacation, it was nice to have enough funds to enjoy the food and drink at some of Bend, Oregon’s great brewpubs with our friends.
  • We looked at some of the climbs we did at these areas in our early 20s and wondered how we had the nerve to get up them.
  • Our truck has been replaced by a tiny, fuel-efficient Toyota sedan. It is amazing how much camping and climbing gear we squeezed into that little rig. However, we did bottom out on some three-inch-tall rocks on Idaho’s back roads.
  • I now had an ostomy.

It was easy to forget about this last big change because things felt so much like they had in the past before I had gotten sick with UC and before I had surgery. I was just out there having fun and my stoma did not diminish the joy of a road trip one bit. Other than changing or emptying my appliance, or having to drink extra water to prevent myself from getting dehydrated, I hardly thought about my ostomy at all. It proved to be no trouble during long days on the road, while living in camp or while climbing long routes.

We shot a lot of footage on our road trip and will be putting together a video about the adventure soon. Until then, the following photos share some of the great times Doug and I had on the trip.

Climbing Theater of Shadows on Jackson’s Thumb at City of Rocks. This was my very first lead climb after surgery.
Rappelling off of a route at City of Rocks in Idaho.
Our very cool campsite at City of Rocks.
Sketching at camp.
I love donkeys. We encountered this cutie while walking near our friends’ house in Bend, OR.
Showing off a fresh wound after a full day of climbing at Smith Rock, OR.
Enjoying the McMenamins salt-water soaking pool in Bend, OR.
Spending time with my parents at Crater Lake.
Exploring the mile-long Lava River Cave near Bend, OR.
No road trip is complete without at least one stop at a giant roadside sculpture. Doug and I getting silly during a major windstorm at the huge Conestoga wagon near John Day, OR.

My first post-surgery multi-pitch climb: my imaginings turn into reality (feat. new video)

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In the weeks after making my decision to have a permanent ileostomy, my imaginings of what life was going to be like after surgery played in my head like little movies. There was the one that featured me happily leading hikes with my ostomy at work, and another in which I pictured myself successfully emptying my appliance on backpacking trips. However, the one that I liked to imagine the most involved being on a long multi-pitch climb.

There I was in my mind–hundreds of feet up a steep route and anchored into a small ledge with the climbing rope. I would picture myself removing a full pouch, snapping on a new one and then bagging up the old and tossing it in my pack like it was no big deal at all–as if I had been doing it that way my whole life. I would gaze up at the many pitches yet to go and get ready to climb, barely thinking about my ostomy at all.

As I prepared for and recovered from surgery, these visualizations became an important source of hope for me. I really had no idea if the reality would end up exactly that way I pictured it, but having these images in my head gave me a goal to strive for. I really saw no reason I couldn’t do all the things I was envisioning once I healed up.

One by one, in the year and a half since surgery, I turned those images in my mind into  actualities. I jumped right back into work and led hikes and nature programs. I worked my way into backpacking, even going on an eight-day trip 10 months post-op. Snowboarding, swimming, yoga, biking, short climbs–my return to all these sports has been just as amazing as I had pictured they would be. But there was one thing that was still just a series of images in my head:  the multi-pitch climb. Would dealing with my ostomy on a long, hot climb with small belay ledges be as doable as I had imagined? After all, one of the main reasons I chose to have a permanent ileostomy over j-pouch surgery is that I personally felt it would be easier for me to manage on all-day climbs. I was a little nervous about  putting that notion to the test. As I built up strength in the 20 months since surgery, and worked through some hip and shoulder injuries, I continued to wonder what climbing a long route was going to be like with my ostomy.

Last weekend I finally found out as I went with Doug and his brother and dad to climb Devils Tower in Wyoming. We had all climbed this famous rock formation in 1992 and were excited to give it another go. This reunion-style climb with my family was more than I could have ever asked for as my first post-surgery multi-pitch climb. Being back on the rock with all of them was a blessing.

Our gang on the summit of Devils Tower, WY, 20 years ago.
Our same team on the summit in 2012.
We are tired and thirsty, but safely back at the base.

The 15-minute video below highlights our adventure on the Tower. As I watch it myself, I am in awe at how similar the real images are to the little movie that played in my head in the hospital. For climbing and so many other aspects of my life, the things I imagined and hoped for with my ostomy did turn into reality–a truly amazing reality.

My Week at Camp Oasis

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An hour into my drive home I watched the red-orange landscape around Gypsum, Colorado, transition into the craggy grey of Vail Valley. My mind shifted from busy camp schedules and activities to inward contemplation.

I had just spent the last eight days volunteering as a cabin counselor at the Crohn’s and Colitis Foundation of America’s Camp Oasis, and I had much to process. The hours of uninterrupted thinking time that now lay before me was exactly what I was craving. I turned up the tunes and let my mind go back to all the moments of camp.

My camp experience began with a full day of orientation before the kids arrived. We learned the policies of the camp, information about all the activities and the schedule, and how to help campers with common issues such as homesickness. I had been a little nervous at home, but felt much more prepared after these sessions. I also had a chance to get to know all the other volunteers who were helping out in a variety of roles ranging from cabin counselors to medical staff to kitchen help.

One unexpected thing for me at camp was that I seemed to be the only volunteer cabin counselor who had IBD (as far as I could tell through conversations anyway). Many of my friends who help out at Camp Oasis at some of the locations out east have talked about shared IBD experiences among the counselors. The camp in Colorado is only two years old. I would imagine that in years ahead as campers get to be the age where they can volunteer as counselors, there will be more cabin volunteers who have lived with Crohn’s and Ulcerative Colitis. Whether or not they had IBD, all the volunteers I worked with were absolutely amazing. They gave their time because they wanted to help chronically ill children have the time of their lives at camp, and they did so with enthusiasm and devotion.

Roundup River Ranch, the camp at which the Colorado Camp Oasis is hosted, is a beautiful facility with some of the most energetic, capable and dedicated staff I have had the pleasure of working with. The medical personnel were incredibly caring and the kitchen staff worked tirelessly delicious meals that were enjoyed by all the campers, even those with food intolerances and allergies. The staff camp counselors put vast amounts of time, passion and energy into making sure the kids had the best experience possible. The cookhouse, cabins and medical facility were top-notch. The beds even had Tempur-Pedic mattresses which had been donated.

A view of Roundup River Ranch including the cookhouse and medical building.

I even had a chance to experience the excellent medical facility, called the Depot, at camp myself. On the second day, I came down with a low-grade fever, horrible sore throat and cough. The doctors and nurses felt I just had a cold virus of some sort, but put me up in a private room set aside for ill staff for 24 hours. I was incredibly bummed to miss a day with the campers, but knew I needed the rest. I was reunited with my group and, though still not back to 100%, felt much more energetic for the rest of the week.

I also went over to the medical facility to change my ostomy appliance. I was a little concerned about monopolizing the bathroom in my cabin quarters, so I talked to the nurses and they recommend I come over to the Depot to change. This was nice, since I am not the fastest at my appliance swaps. The skin around my stoma is in beautiful condition, but achieving this takes some time for me. Per recommendations from my WOCN and the home health nurse I worked with after surgery, I  have a meticulous routine that includes a small piece of Duoderm, an Eakin Cohesive Seal, and even a little stoma paste. I can sometimes spend 30 minutes changing out appliances with these steps, especially if my stoma starts spewing. I greatly appreciated having a private place to carry out my skin care routine at camp.

I was a counselor in a cabin of eight 12- and 13-year-old boys. The camp had ended up with a shortage of male staff and volunteers, so each of the boys’ cabins had two female counselors and four male counselors. Most of the camp counselor staff at this camp are paid and there for the whole summer, and volunteers augment the paid staff. Of the six counselors in my cabin, two of us were volunteers. This was nice because there was much expertise, and I never felt like I was left to handle a situation that I wasn’t prepared for. There was always a regular staff person close by to help out.

I got up bright and early one morning to try out the zip-line during a special session set aside for volunteers. It was high! As I stepped off, I was reminded of how the campers were willing to try so many new and challenging activities.

The boys in the cabin were such a great group of kids. Though I struggled a bit with conversation at times (not knowing much about sports teams and being inept at quoting movies–both popular with this age group), I loved working with the kids and cheering them on at all their activities and playing silly cabin games like Mafia and Ninja. Days were filled with all sorts of fun activities like archery, arts and crafts, climbing and zip-lining, horseback riding, boating and fishing. A highlight of the week for me was the talent show. The kids came up with magnificent acts, and I was blown away with how much the children encouraged and cheered each other on while they were watching the performances. It was absolutely beautiful.

The camp’s zip-line.

One of my favorite parts of camp was quietly listening to the children share stories with each other. One day I heard three boys at lunch encouraging a camper who worried that he might not be able to have a career in the military because he had Crohn’s. The other boys were telling him he would be able to do anything he set his mind to. I also heard the children talking to each other about surgeries and medications, belly noises and going to the bathroom a lot. Another counselor in my cabin saw some of the kids showing each other their surgery scars. This is the magic of Camp Oasis; the children are given the opportunity to take part in a fun camp experience while building friendships and bonding with others who truly understand what it is like to have the same chronic illness.

Every night right before bed, each cabin took part in an activity called cabin chat which provided a time to talk and reflect as a small group. The cabin counselors posed several thought-provoking questions for the campers to answer in a quiet and safe atmosphere. These questions were never directly related to illness, but many of the campers answered with things that tied into having Crohn’s or Colitis. Counselors also had the opportunity to answer the questions. During one cabin chat a few days into the session, a question fit well with my experience of having UC, so I shared that I had the disease. I really have no way of knowing if it made a difference to the children. However, I had many conversations about camping, climbing, skiing and canoeing with the youngsters (which were popular topics with several of the boys). Perhaps in some small way the children realized that having ulcerative colitis has not stopped me from leading a full life.

On the final evening of camp, the children made a “web of gratitude” where they came up and told everyone the things that they were thankful for by adding a strand of yarn to a circular frame. Listening to the things that the children shared brought tears to my eyes. It was clear how much this camp experience had meant to them, and I was so happy that I had been part of it.

My three-hour drive home was not nearly enough time to process all the things I had learned at camp… all the inspiration I was feeling… and the amazing memories that will be part of me forever. When I got home I talked to Doug about it for so long that I nearly lost my voice. I don’t know when my work and vacation schedules will allow me to volunteer again, but someday I hope to head back to camp. Volunteering at Camp Oasis was one of the most valuable things I have done. I would highly recommend it to anyone.

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

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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.

No Slowing Down for My Ostomy

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Here are some clues that my schedule has become crazy busy lately:

  • This morning I tried to brush my teeth and put my socks on at the same time. It didn’t go well.
  • Dust bunnies are currently breeding out of control in all corners of my home. I am very glad they are peaceable creatures.
  • The two minutes it took for my oatmeal to cook one morning this week sounded like the perfect time to squeeze in some blogging.
  • I’ve seriously thought about putting on my running shoes while doing errands and chores to see if I can cut my time or get a personal best. I can fold a basket of laundry and put it away in five minutes. I am going for three.
  • I ate spaghetti with sauce from a jar for dinner three times this week.

It is hard not to over-schedule when I am feeling well. Everything sounds fun, and before I know it, I have filled my days with so many activities that I barely have time to sleep. I am still having hip pain, but it has lessened some. My orthopedist can’t find any cause other than a slightly deep hip socket joint that may be causing my bones to rub a bit. Regardless, he thinks it is something I will just have to live with. I can do that. My physical therapist is also working with me on hip alignment issues that could also be part of the problem. The good thing is that both of these individuals think it is fine to run and hike. Despite things hurting a little bit, I am thrilled to be out moving again and I am taking full advantage of every opportunity that presents itself. Doug and I have already gone on two three-day backpacking trips this month, and our summer is only getting started. Breed away dust bunnies… I am going to be ignoring you for a while.

Doug and I on top of Mt. Massive on our second backpacking trip of the season.

I remember wondering if I would ever be able have crazy hectic marathon-like days with an ostomy. Would I be able to manage it in a tight schedule? What about having enough time to empty? Could I eat at any hour of the day? This week was my busiest since surgery, and I am happy to report that insanely full days are completely possible with an ostomy.

On Saturday, I got up at 5 a.m. to go to City Park in Denver to run the Undy 5000. This is a run sponsored by the Colon Cancer Alliance. Proceeds from the race go to pay for colon cancer screenings for the underserved. We have been in the middle of a record heat wave in Colorado, and the high temperature for race day was 103 degrees. I tanked up on water, said hi to some of the people from my local ostomy association who were volunteering at the event, and headed for the start line. The heat was oppressive and I got nauseated during the run despite staying well hydrated. It was definitely not the day to push it, so I enjoyed a more leisurely pace and finished the run in roughly 31 minutes. Even with the heat, my ostomy appliance stuck fine. I indulged in some post-race treats and beverages, perused the booths and then headed home to take a shower and get on to the next activity of the day: a 9+ hour work day.

Showing off my undies in front of the inflatable colon at the Colon Cancer Alliance’s annual Denver Undy 5000.
Sporting my ostomy t-shirt from thegreatbowelmovement.org at the start line for the run.
Everyone gets in the spirit of the Undy 5000 by running in their underwear or other fun bum-related costumes.

Soon I was up in the foothills leading a Jr. Ranger event at one of the parks in the Open Space System where I work as a naturalist. I spent the next 4 hours in 90-degree heat running through a meadow helping youngsters catch insects and teaching about the amazing diversity of bug life in the park. After a quick sandwich-dinner and a practice music session with my coworkers, I told stories and played my guitar as part of an evening sing-a-long and storytelling program for the campers. When we finally packed everything up to head back to the trailhead, it was almost 10 p.m. I had gone full blast from roughly 5 a.m. until 10 p.m. and my ostomy did not slow me down one bit. The only thing that was challenging was staying hydrated, but I had brought a huge personal water container along to the park since there was no potable water there. I drank over 8 liters of water that day.

The next morning Doug and I were up early to head to a friend’s going away pool party. We swam for several hours in the morning and then had a delicious BBQ in the afternoon with burgers, brats and corn on the cob. (I am fortunate in that my ostomy tolerates possible problem foods well when I eat them in conservative amounts, chew a lot and drink plenty of water.) Later that evening we headed back to the pool. I had never been in the water for such a large percentage of a day since having surgery, but my wafer did just fine—even with numerous trips down the water slide and many cannonball jumps.

Doing laps on the water slide at my friend’s pool party.

The crazy week continued. Monday included a doctor’s appointment and an evening dinner with Doug’s parents. Tuesday was filled with work and then my local ostomy association meeting in the evening. I collapsed in bed at 11 p.m. only to get up at 4:30 a.m. for our local Bike to Work Day. It was another scorcher, but the temps weren’t too bad so early in the morning. I rode my bike 7 miles from my house into Golden, and then continued for another 6.5 miles up into the foothills to the park where I work. That part of the ride included 1,900 feet of elevation gain. That evening, I rode back home, ate dinner and went right to bed.

Arriving at my destination after 1,900’ feet of elevation gain during our local Bike to Work Day. My amazing coworkers left encouraging messages for me along my route.

As I type this, I am on the plane traveling to visit my parents for several days in Washington state. This wasn’t the aircraft Doug and I were scheduled to be on (and we certainly weren’t supposed to be in the first class section where we now sit). Our plane left Denver an hour late and we missed our connection to Seattle which also meant we missed the last flight to the small town of Walla Walla where Mom and Dad live. Suddenly life became a bit spontaneous as we had to completely rearrange our plans. The airline put us in first class for our next flight, gave us meal vouchers and are covering our lodging in Seattle until we can catch another flight to eastern Washington in the morning.

Through all these unexpected twists, I hardly even thought of my ostomy. My main curiosity was how my very first trip through airport security since surgery would be. I was fully expecting to have to say something about my ostomy to the TSA personnel. However, I didn’t mention it and went through the metal detector uneventfully like everyone else. I did get asked to run my baggage through the scanner again, but only because I failed to realize that I was supposed to remove my laptop from my luggage. Security didn’t even ask me about the scissors in my ostomy changing kit in my carry-on (which are allowed according to TSA because the blade is under 4 inches long). We shall see if Seattle airport security goes as smoothly with my ostomy.

Blogging while enjoying the surprise first-class seat assignment on the plane.

As soon as I get back home, I have four evenings after work to unpack from this trip and get my things ready for the next adventure: The Crohn’s and Colitis Foundation of America’s Camp Oasis where I will be volunteering for a week as a camp counselor for children ages 7-13.

Through all these activities, my ostomy has faded into the background. I change my appliance twice a week, empty when I need to, eat when it fits in (many times as late as 9 p.m.), and drink a lot of water in the heat. Other than that, I can honestly say I don’t think about it a whole lot and it is not an inconvenience in my life. The longer I have my ostomy, the more I realize how normal everything feels with it– even during the busiest of times and when dealing with last minute changes in plans.

As great as it has been doing so many fun things this month, I know I can’t keep this pace up indefinitely. The dust bunnies will start to haunt me, a personal best at the time it takes to clean the shower will suddenly not sound so cool, and I will want to pull a cookbook off the shelf and actually make something decent for dinner. I am craving lawn chair time with an iced tea and good book instead of a huge “to do” list of things to pack for the next race, bike ride or outdoor trip. My ostomy hasn’t slowed me down one bit, but I think it is time to put the brakes on myself. Well… after the climbing trip we just scheduled for the end of the month that is.

A long restless night

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Darn that almost-to-be supermoon. Its bright light made me think it was morning and it is barely 2 a.m. Jolted awake by hip pain, I was hoping it was almost time to get up and start my day.  Instead, I am faced with some long anxiety-filled hours before the alarm clock is due to ring. It has been a while since I have been up at this hour in pain, but in the past few weeks this scenario has become a regular occurrence.

At this late hour, I am scared, hurting and my mind is having trouble being positive. If you have read some of my recent posts, you know that I have been dealing with recurring hip pain, and that I had an x-ray that showed a possible pelvic stress fracture. However, the  orthopedic surgeon I saw wants me to have an MRI to rule out a few other things rather than simply dismissing my troubles to the probable stress fracture. One of the main reasons he suggested this is because my hips had been hurting a lot at night which could be a red flag for some more serious conditions. The orthopedist said that if my pain happened to ease up significantly before the MRI date, I could actually cancel the appointment. Unfortunately, the pain is not mellowing — it is getting worse.

I try really hard to not be one who dwells on the what ifs, but sometimes expecting that of myself is downright unrealistic. After all, my body hasn’t exactly proven itself trustworthy in that regard. So what is the big fear that has me hanging out in my recliner in the wee hours with a mug of Sleepytime Extra tea instead of snoozing blissfully in my bed? I am scared that I might have osteonecrosis. A major risk factor for this gem-of-a-condition (of which I am experiencing just about every symptom)  is a history of being on high doses of prednisone. I took up to 80 mg per dose when I was in the hospital during my final UC flare. My doctor assured me that the MRI that I am having this Monday is very good at picking up this disease and that he will let me know as soon as possible if anything shows up.

Until then, I am allowing myself the liberty to freak out a little. The results of my test will probably come back showing that everything is fine and that I am just dealing with a stress fracture. But in some strange way, ruminating over one possible worst case scenario at 2 a.m. on a Friday night is helping my brain cope with the uncertainty — because even in my mind’s wost imaginings, I can see glimmers of hope and the realization that I will be okay regardless of any struggles that lie ahead.

With that reassuring thought, I am going to head back to bed, armed with some mindfulness meditation exercises to help me relax and hopefully get some sleep.

Drawing my way out of the doldrums

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My first mainly sedentary week has been hard mentally. I wish so much that I could go for a hike or run, but just walking around the grocery store makes my hip throb with pain, so that is not going to be a reality any time soon. I went swimming at the gym and did an upper-body weight workout. Both of those activities went okay, but it feels like all the amazing  progress I made working out with my personal trainer is going to slip away.

When sadness and anxiety start to take over and I can’t deal with the stress using exercise, I often turn to my nature journal to lift my spirits. Somewhere in those moments when I am looking closely at the pattern of veins in a leaf, and my pen is moving over paper recording what I see, my mind finds peace. Expect to see many drawings in the weeks ahead!

 

Good news: no more crutches!

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For the past three days, I have been nervously awaiting my appointment with an orthopedic surgeon to find out about the injury I mentioned in my last blog post. I am so used to going to the doctor for digestive- and colon-related issues. It felt a bit unsettling to go in for something entirely new like a bone problem. And I was even more anxious because the pain had gotten a little worse over the past couple of days. It had been especially intense at night — even keeping me awake for several hours.

At the clinic, the orthopedic surgeon looked at my x-rays and examined the area of my injury. He thought the stress fracture was small enough that I could ditch the crutches (unless I was having pain) and just take it easy. He said soon I could try some light exercise such as swimming or maybe easy biking, and to listen to my body and stop something if it causes any discomfort. However, because I have been experiencing the worsening pain at night, he wants me to get an MRI in 7-10 days to rule out a few things that could be more serious.

I was so ecstatic as I walked out of the doctor’s office sans crutches. I have a huge appreciation for those who have dealt with them for long periods of time. Using crutches is incredibly tiring, and it was difficult to rely on others to constantly carry my stuff or bring me things. It is next to impossible to have anything in your hands with crutches. My coworkers joked that they were going to get me a cowbell to ring every time I needed help. Thanks goodness I won’t be needing that.

Bye bye crutches!

So I am relieved with the circumstances for now and will cross my fingers that nothing strange shows up on the MRI. I know I will still have to cancel some activities in the upcoming month or so as I heal up, but I am confident that the plans I made for later in the summer will stay intact even if I have to tone them down a notch.

For this weekend, sitting in the grass with my sketchbook still sounds just about right.

Turning 40

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I couldn’t stop smiling as I sat in the stands at Coors Field. I was attending a Colorado Rockies game for my 40th birthday, and the evening had been amazing so far. Planning to ride our bikes to the stadium (to avoid traffic and the parking fee), Doug and I had parked our car about a mile away.  Just as we were about to unload our bikes from the roof rack, a massive storm blew in and we watched lighting streak across the Denver skyline as hail pummeled our car. Once the storm ended, we jumped on our bikes and cruised downtown, breathing in the wonderful spring smell of rain-soaked ground and blossoming trees.

We arrived at the stadium an hour early, so we stopped to enjoy drinks at the Irish pub next door. I was halfway done with my Strongbow Cider when the waitress surprised me with a free birthday shot. I have no idea what was in the fruity purple concoction, but she assured me it didn’t have gluten in it, so down the hatch it went. This was a little more than I would normally drink on a mostly empty stomach with my ostomy, but hey, it was my birthday. Time to throw caution to the wind. My stomach wasn’t empty for long. As soon as we walked over to the stadium, I indulged in one of my favorite treats. I hardly ever eat hamburgers due to having celiac disease (and the fact that they are not that healthy), but Coors Field has a special gluten-free concession stand. Soon I was in my seat, huge burger in hand and eagerly anticipating the game.

Nature even provided some pre-game entertainment for my birthday. Perched on the balcony railing above me, a male house finch was singing his heart out. Over and over he belted out his melodious tune, and I kept thinking that there had to be a female baseball-fan-of-a-finch listening somewhere in the stands. I hope he finds her. There are certainly many great places to tuck a nest in the stadium and then the pair can watch every home game as they raise the next generation of Rockies-loving finches.

If this amazing start to my birthday evening wasn’t great enough, things got even better. The Rockies were clobbering the opposing team in one of the best games I had the pleasure of watching. In between watching unbelievable plays, my mind cycled through memories of being at the stadium so many times before.

It was on a previous visit to Coors Field that my final UC flare first made itself known. I am sure many IBDers know the feeling of thinking they have finally found the magic bullet of probiotics, diet and medication to keep their illness in control, only to have their body fail them yet again. It was during a night similar to this one that I was having fun watching the Rockies when one such disappointing moment came. I got up to use the restroom during the 7th inning stretch and noticed a tiny speck of blood from my intestines on the toilet paper. My heart sank. I left the bathroom and tried to focus on the rest of the game, but all I could think about was the fact that my four-month remission was over and my UC was back. At the time, I had no idea that those initial specks of blood would turn into the massive flare that would cost me my colon. When I look back at my photos from that evening, I see a woman who is blissfully unaware of the major life change that is about to happen. If you would have told me that night that I would have an ostomy a few months later, I would have said you were out of your mind.

Sitting in the stadium on my 40th birthday, I realized that I still had no idea what was around the corner. But if there is one thing I have learned in my 39th year, it is that this uncertainty is okay. Tomorrow would be on its way soon enough, but right now I was enjoying watching the players slide into bases and hearing Doug yell GO TODD at the top of his lungs every time Todd Helton was up to bat. Right now I was having fun singing Take Me out to the Ball Game and seeing the people around me laughing and goofing around with their friends and family. Right now I was smiling as I blew out the candle in my birthday cupcake and made my wish for the year. Right now I was happy that my ostomy had allowed me all these moments.

For me, turning 40 wasn’t something to be sad about. It wasn’t about all the things that I hadn’t done or about goals not yet achieved. Turning 40 was about celebrating all the things I had done. It was about lightning and skyscrapers, house finches on balconies, bike rides through puddles, baseball players getting out of pickles and every other great memory I have from that day and all of those before.