Patience and progress

It’s as harsh out here as on top of peak in a snowstorm. This thought pounded in my head as I cross-country skied down a slope in my second-ever biathlon. The wind was blowing against me so strongly that I had to use my poles to make downward progress. I was freezing in my minimal layers, and I felt eerily alone on the course with no one in sight and snow swirling all around me. The weather was declining rapidly, and I was relieved to be on my final of five laps.

In the distance I could see the biathlon range as I steadily made my way up a final incline. Snow was filling in the trail with drifts, and I felt like I could have walked faster than I was skiing. All that powder would have been much beloved if I were out snowboarding, but I didn’t much appreciate it in a Nordic race. As I got closer to the finish line, I could see the person recording times from a stopwatch. It seemed to take forever for me to reach him. But I finally made it! I finished the race and was super happy that I stuck with it and did not give up. I couldn’t remember doing anything that felt so physically strenuous– not even hiking up Mt. Rainier. Skate skiing is one of the most aerobically intense activities I have ever done.

Happily leaving the starting line before the wind and snow picked up.
Happily leaving the starting line before the worst of the storm blew in.
I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets!
I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets at 50 meters away!

We wrapped up the weekend with more fun. After completing the race, we stayed overnight at Snow Mountain Ranch/YMCA of the Rockies (the place where the biathlon was held) and even hit up the climbing wall in the pool. The next morning, we got up early and drove to Copper Mountain to go snowboarding.

A little post-race climbing at the pool.
A little post-race climbing at the pool.
Powder day at Copper Mountain!
Powder day at Copper Mountain!

When the event results came in a day later, I discovered that I had the slowest pace of anyone who finished any of the various distances. It wasn’t a surprise. This is a new activity for me and I didn’t expect to be good at it right away. I had been working on my shooting a bit, but had put very little attention into becoming better at skate skiing. That changed last weekend when I took a beginner lesson and picked up countless tips that will help me improve. I also plan to begin working on my cardiovascular fitness again by running and going skate skiing as much as I can. I know it is going to take a lot of time and many little steps to get better at the sport.

That reminded me a lot of getting back into the fitness activities and sports I loved after ostomy surgery. Like training for biathlon, it wasn’t a quick process. One of the most common questions I get from blog readers is how long it took me to get back to “X” activity. Since a lot of information on that subject is buried in other posts, I thought I would create a summary of how long it took me to return to activities and what some of the challenges were. Keep in mind that I did have some significant complications with my abdominal incision healing due to a rare reaction to my particular suture material. This extended my healing time.

Snowboarding:  I did this activity for the first time at around five months post-op, but because it was the end of the season, I was only able to get a few days in. I was surprised at how effortlessly the movement of boarding came back to me after losing so much strength after surgery. The most difficult part was getting back into a standing position after taking a tumble. Due to the crunch-like movement involved, it felt hard on my core. I wore (and still wear) a six-inch wide hernia prevention belt to help support my abdominal muscles. At first I was also careful to not venture onto icy terrain since falling onto my butt hurt the area where my anus had been removed. By the next season (about a year post-op), all that pain was gone and I was able to return to my pre-surgery level of boarding.

Getting up after all the falls on my first post-surgery snowboarding trip was tough on the abs!
Getting on my feet during my first post-surgery snowboarding trip was tough on the abs!

Hiking and backpacking: I went on my first backpacking trip at around five months post-op as well. I checked with my surgeon to make sure carrying 25 pounds was okay and then headed into the backcountry at the first opportunity–which happened to be a very cold and snowy April weekend!  Once again, I wore a six-inch wide hernia prevention belt and was mindful to keep the weight in my pack light. Doug carried many of my things and helped lift the pack onto my back. Once it was centered on my legs, it didn’t strain my abdominal muscles at all. The cold made this first trip with my ostomy difficult, but I was happy with the extra challenge. I knew if I made it through that, warm weather adventures would be easy.

After this trip, I kept hiking every weekend and slowly upped the distances traveled and amount of weight carried. I went on a few more overnight trips and began hiking 14,000-foot peaks. I remember walking like a turtle on the first one, but I just kept at it. By ten months post-op, I was able to go on an eight-night backpacking trip carrying 52 pounds.  Through all these adventures, I was continuously experimenting with supplies and techniques for dealing with my ostomy outdoors and I tried to put myself in challenging situations to maximize my learning and face my fears. For instance, I could easily have changed an appliance before a wilderness trip, but instead I would purposely wait to do it in my tent in the backcountry just so I could get the practice and become confident with my ostomy in those situation.

A little snow couldn't keep me out of the backcountry once my surgeon gave me the go-ahead to carry a pack again at 5 months post-op.
A little snow couldn’t keep me out of the backcountry once my surgeon gave me the go-ahead to carry a pack again at 5 months post-op.

Running: I waited seven months after surgery to go running and I progressed really slowly. For whatever reason, this activity made me much more fatigued than hiking or backpacking. I also had pains in various areas of my abdominal wall (almost like a stitch or side-ache in the muscles surrounding my stoma) for almost a year after surgery. I never knew exactly what caused this, but it always felt okay again a day or two after running so I chalked it up to muscle fatigue. After all, I had been cut open from belly button to pubic bone. That is bound to affect the abdominal wall a bit! Eventually those muscle aches went away and now I am able to go on long runs with no discomfort. I also wear a six-inch wide hernia prevention during this activity to help support my abdominal wall.

Jumping for joy on my first trail run which happened a little over a year post-op.
Jumping for joy on my first trail run which happened a little over a year post-op.

Rock climbing: This is the activity I took the longest to return to. Climbing involves many twisting and stretching movements and a lot of physical exertion. My surgeon never said I had to wait a year to go, but that is what I decided to do in order to give myself plenty of time to heal. I knew my ostomy was permanent and I wanted to do everything in my power to reduce the possibility of a long-term injury like a parastomal or incisional hernia. I was willing to wait as long as it took for my body to tell me I was ready. In the meantime, I worked on hiking and backpacking so it never felt like I was sitting around waiting to climb. To get stronger while I was waiting, I worked with my physical therapist to strengthen my core with gentle and safe exercises. By eleven-months post-op, I finally felt that I was strong enough to rock climb. I started in the gym by ascending routes that were easy and low-angle. Then I started to do the same outside. Over the following year, I slowly bumped up the difficulty of routes I was attempting and ventured onto more vertical terrain. At 22 months post-op, I led my first easy sport route. Now that I am over three years out from surgery, I am climbing in the gym on a weekly basis, doing overhanging routes and am back to scaling rock walls at my pre-surgery level. The only thing that I have yet to do is return to leading traditional routes where I place my own gear. Just like with every other strenuous activity, I always wear a six-inch hernia prevention belt.

Leading a climb at Shelf Road in Colorado this fall. I was back to leading sport climbing routes 22 months after surgery.
Leading a climb at Shelf Road in Colorado this fall. I was back to leading sport climbing routes 22 months after surgery.

Yoga: Like rock climbing, I waited a year to do yoga. I know I could have gone earlier, but I was busy working on the core exercises with my physical therapist and decided to wait to try yoga until my incision area felt solid. Interestingly, I found corpse pose to be one of my most uncomfortable poses. Lying on my back made my incision area ache like crazy. I think this was the result of horrible posture during the first four months after surgery when my incision was extremely painful. During that time, I was protective of the area, and I found myself walking in a hunched-over position. It took a while to reverse that and make my muscles to feel okay with being lengthened again. Nowadays, corpse pose feels fine and the only thing I still have trouble with are bridge positions. My body tells me to go easy on those and so I do!  I wear a hernia belt while doing yoga too, but switch to a four-inch model as it is easier to bend with that width.

Bicycling: This sport was gentle on my body and would have been perfect after surgery save for one thing: my butt hurt from having my rectum and anus removed. And this pain was not quick to go away. It took almost a year for the deep muscles in that area to feel like normal again. Fortunately, once I hit six months-post op, my pain had at least diminished enough that I could sit on the seat without too much discomfort. Now I can spend hours on the saddle with no issues.

My first bike ride at six months post-op: a short jaunt to see a Rockies game. It did hurt my healing butt a bit, but was tolerable.
I took my first bike ride six months post-op when Doug and I pedaled a short distance to see a baseball game. It did hurt my healing butt, but was tolerable.

As I get into my new sport of biathlon, I realize that it is going to take a lot of hard work and patience to get better. I know someday when I am skiing a bit more efficiently and faster, those early times when I struggled up the hills or felt like taking a nap in the snowdrift will seem like a distant memory. It was that way with my ostomy. Getting back to my pre-surgery activity level took perseverance.  My progress sometimes seemed dauntingly slow. However, as I moved towards that goal, I celebrated each small victory. Before I knew it I was back on my favorite slopes, trails and rock faces and my life was richer for all the tiny but amazing steps that got me there.

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
-Ernest Hemingway

Me and my wound vac going for our first trail hike after surgery. I traveled a whopping 1/8 mile and I was thrilled. After having major incision healing complications, this was a huge milestone for me and I went home and celebrated with my first post-op beer.
Me and my wound vac returning from our first trail hike after surgery. This was four months after my operation and I traveled a whopping 1/8 mile. After having major incision healing complications, this was a huge milestone for me and I went home and celebrated with my first post-op beer.
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No Slowing Down for My Ostomy

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.

Turning 40

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.

Starting to forget my ostomy is there

After doing many backcountry adventures this season, Doug and I decided a fun weekend of car camping was in order. It was time to have a more luxurious trip complete with a larger tent, a cooler stocked with cold beer and soda, a guitar to make music, and pancakes and eggs for gourmet breakfasts.

Gluten-free pancakes!
No camping trip is complete without a little music

Some good friends from our original home state of Wisconsin were vacationing near Gunnison, CO, so we chose to camp along the nearby Taylor River so we could do some activities together. One of these was a three-hour zip-line adventure that I will write about in a future post. We also enjoyed fly fishing and mountain biking.

Suited up to begin my zip line adventure in Crested Butte, CO
Mountain biking on the Lower Loop Trail in Crested Butte, CO

Despite sweating in my waders for hours, bouncing down the trail on my bike, or wearing a harness when zip-lining, my appliance stayed on just fine. Making s’mores also had its benefits due to the output-thickening-power of marshmallows. I found that it was a wonderful excuse to eat many of these gooey, delectable treats.

Honestly, I hardly thought about my ostomy the entire time. In fact, on one afternoon fly fishing excursion, I forgot to bring along my toilet paper and other supplies in case I needed to go into the woods to empty my pouch. Fortunately, I was able to wait until I got back to camp that evening with no problems. Not the smartest situation, but it did prove to me that I am sometimes starting to forget my ostomy is there!

On the last day of the trip I had to change my appliance. The campsites were fairly close together, and we had a campground host that loved to stop by at random times. Therefore, I decided to head into our small pyramid-style gear tent for the change. It was the perfect spot to spread out my supplies and work, and before long I emerged with a new pouch on my belly, ready for the day’s adventures.

Changing my appliance in the gear tent

So, if you are not ready for a backpacking excursion, at least head out on a car camping trip. It is loads of fun. And as an added bonus, you will have a weekend free of splashback while emptying your ostomy appliance in the wonderfully deep campground pit toilets:)

So Many Videos!

We never imagined how many views this blog might get, and we’re pleasantly surprised. Thank you to the many readers out there, and thanks to all the other bloggers who have cross-posted material from Ostomy Outdoors.

Now that we’ve been rolling out material for a couple of months, we realize the new follower could become overwhelmed, especially in the video department.

To that end, there’s a dedicated page called Adventure Videos, linked in the top menu bar. It lists all of our videos chronologically, starting with the short introduction that was created just after the idea of Ostomy Outdoors was hatched. As of today, there are eight separate clips (the epic backpacking chronicle had to be split into two parts).

So if there are some you haven’t seen yet, sit back, relax, and enjoy some adventure, Ostomy Outdoors-style.

I hope you’ll leave a comment here with your own outdoor tips, or anything at all you’d like to share.

Back to Biking and Running (feat. new video)

Today was Bike to Work Day in Denver. I work up in the foothills, and my daily commute is 26 miles round-trip with roughly 2000 feet of elevation gain. Though I did successfully complete this lengthy excursion for this event last summer, I figured it would be a bit too much after surgery when I am not yet at full strength. Instead, I drove to the park-and-ride 5 miles from work, and made a shorter trip on my bike from that starting point. It ended up being perfect. The route had just enough uphill to work my muscles and get my heart rate up without making me too exhausted. As seems to be the case with all outdoor sports I have been trying so far, I had absolutely no issues with my appliance or ostomy. I wore my usual combo of a Nu Hope Cool-Comfort hernia prevention belt under Comfizz briefs to hold it in place. Over this, I wore the same chamois-padded mountain biking shorts I always wore before surgery. This may sound like a lot of layers, but I find it very comfortable, and I love the way my core muscles feel supported.

Actually, the funniest moment of the trip happened before I left the house. I sometimes get phantom urges where it feels like I have to take a BM even though it is physically impossible with my colon gone and everything sewn up. I got these sensations a lot in the first month after surgery; now I only feel them occasionally. Well, this morning as I was making breakfast and packing up when I witnessed one. Forgetting completely about my ostomy, I thought, “I better really try to go the bathroom before I leave, or I will be miserable holding it on the ride with no toilet possibilities on the way.” Then I remembered that this most definitely wouldn’t be an issue and laughed out loud! These are the moments when I really love having my ileostomy instead of ulcerative colitis!

Biking was not my only sport-related accomplishment this week. I also went for my first jog. I hadn’t really planned my grand entrance back into running. I figured my body would tell me when it was time. Well, last Monday, I gazed out the window and got this overwhelming urge to run. And so I did.

As my feet began to rhythmically hit the ground, I paid close attention to my abdomen. One of my silly fears with running was that my insides were going to shake like a maraca with all the space left where my colon once was. But, no, there were no strange sensations in my abdominal cavity. In fact, everything with running felt really natural, as if I had only been away from it for a few weeks and not almost a year. I went at a slow jog and interspersed it with walking as needed. I ended up going three more times during the past week, the last of which is filmed in the following video.