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.
Mollydog was always full of crazy antics on our outdoor trips. She liked to hike with 3-foot-long logs in her mouth and knock us off the trail when she passed by. She managed to sneak up to our food stash and wolf down that one special dessert item we were saving for the last day of a trip. Molly loved to sleep between Doug and me with her four legs fully extended so that we were mushed up against the outside walls of our tiny backpacking tent. She relished going for swims, rolling in the mud and then curling up in my sleeping bag.
Muddy Molly on a backpacking trip in Wyoming’s Wind River Range.
This summer, there is an inescapable void. I no longer look over my shoulder when I am hiking to keep from getting whacked, guarding my food at dinnertime is now unnecessary, there is too much space in the tent and my sleeping bag is unusually clean.
Last year on this day, our beloved Mollydog passed away.
Molly joined our small family unit when she was 7 weeks old and took to the trails immediately. For the next 13 1/2 years, we were a party of 3 and were pretty much inseparable. Molly came along on just about every skiing, hiking, backpacking, climbing and canoeing trip we went on. She would often jump in the car as we were packing up, fearing that we might leave her behind. She need not have worried– adventures were always ten times more fun with her along. There were only rare instances when Molly didn’t join us– usually when we were doing long multi-pitch climbs or traveling to an area where dogs weren’t allowed like national parks.
A young Molly heading to the river for a swim.Backpacking in Wyoming’s Wind River Range.
On a three-day backpacking trip this past weekend, my husband and I finished our fifth and sixth 14ers (a peak above 14,000 feet) since the beginning of July. Most summers before this, I was lucky if I did one or two. I have definitely caught the 14er fever. Hiking these peaks has provided me with the perfect opportunity to get outdoors and challenge myself physically while still babying my abdominal muscles. Indoors, I do a battery of physical therapy exercises that safely strengthen my core. In concert, these two activities will prepare me for the more rigorous demands of technical rock climbing in the future.
While hiking these peaks, I have been amazed at how quickly I am progressing and getting my strength back. While I walked the first one at a turtle’s pace, I am now hiking the peaks briskly and with little fatigue. All these successful peak hikes have also made me realize how well I have adapted to my ileostomy. Managing my appliance on the trail using both closed-end and drainable pouches has become second-nature. Moreover, changing my wafer outdoors, which is one of the things I was most fearful of, has proved to be very similar to doing it indoors except that I must pack out the trash (and the views while changing are more spectacular).
However, one aspect of my ileostomy that still baffles me is figuring out how much water to drink. One function of the colon is to absorb water. When it is removed, the small intestine is able to adapt and take on some of this role, but not as well. Because of this, ileostomates must drink more water to avoid dehydration. It has not been unusual for me to drink 8+ quarts of water on some of my all-day hikes. Up to this trip, I have not had any issues with dehydration. However, conditions were different on this excursion. The temperatures while making the strenuous uphill hike to camp were in the 80s which is warm for the elevation we were at. Despite drinking almost 3 quarts of water (some of which included a sport drink mix) and eating plenty of snacks along the way, I got to camp with a headache and bad nausea. Before we proceeded to empty our backpacks and set up our tent, I sat in the shade and drank some more fluids. In about an hour, I felt better. I upped my water intake over the next two days and did not run into the problem again.
“How about going ziplining,” our friend suggested. My first thought was, Absolutely! That sounds fun, I have always wanted to try it. My second thought was, Wait, what about my ostomy? How will my pouching system hold up to zipping through the air in a harness attached to a cable? Not to mention that there won’t be any restrooms for three hours. What if my pouch explodes or leaks? Maybe I should hold off.
Some fears keep you alive– like being afraid to climb higher on a route because it is above your ability, or being terrified of a river crossing because you know it might sweep you off of your feet and send you into the rapids. But there are also those fears that don’t have such dire consequences. The ones that pop into our heads and stop us from doing things that would actually be rewarding and good for us.
I recognized that the fears that were trying to stop me from going ziplining were of the latter variety and purged them from my head. I knew I could go 4-5 hours before draining my pouch– even longer if I pushed it a bit and let my appliance fill up a tad more. I knew the harness would likely cause no problems and that I was strong enough for the adventure. There was no reason not to give it a try.
We signed up for a 5-stage tour through the tree tops at the Crested Butte ski resort. One of the rules was that you couldn’t carry anything in your hands, so I guzzled a bunch of water to avoid getting dehydrated. Then we met with our guides and harnessed up. Much to my delight, the bulky, adjustable one-size-fits all harnesses still worked fine with my pouch. The upper part of the hip belt sat well above my stoma, and the harness barely touched my appliance.
Today Doug, his dad, and I summited the 14,259-foot-tall Longs Peak in Rocky Mountain National Park via the classic Keyhole Route. This was an important ascent for me. I had climbed Longs Peak once before in 2007 and had loved the route. When I was hospitalized for 16 days with my final severe UC flare last fall, I would often walk down to a common area that had huge picture windows facing west and gaze at Longs Peak in the distance. I thought back to the day I stood on its summit, and wondered if I would ever be strong enough to be up there again. Today, I answered that question as I successfully hiked 15 miles with about 5000 feet of elevation gain to reach the summit. This peak was different than the others I have done this summer, as it is graded a class 3 climb. This means that the route has some sections that involve scrambling, or using one’s hands to ascend the rock, yet the terrain wasn’t technical enough to require the use of a rope. There are also areas of exposure where a person wouldn’t want to fall. It felt wonderful to move over rock, and the experience made me look forward to the days when I can climb technical routes again. I just want to heal up a bit more first.
Everything with my ostomy went well during the hike and there is not much to report. I once again used closed-end pouches to eliminate the need to take time to dig a cathole and empty my pouch. This helped ensure that we were on the summit before the afternoon lightning storms came. This ended up being an important detail on this trip, as we dealt with one of the largest lightning storms I have ever witnessed in the mountains later in the afternoon. Fortunately, we had just descended to tree-line when the storm reached its peak intensity and avoided being caught out in the open.
The day before our trip, I discovered that our summit attempt would fall on the United Ostomy Association of America’s (UOAA) second annual Ostomy Awareness Day. I was thrilled! UOAA’s call for this special day is to have “Ostomates Unite and Help Others See Ostomies in a Positive Light!” This is a message that is very dear to me and is one of the reasons I created Ostomy Outdoors.
However, I have to admit that I have not always been as open about having ulcerative colitis or an ostomy as I wish I would have been. Truth is, when I was first in the hospital with my severe ulcerative colitis flare last fall, I hardly wanted to tell anyone about it. Sure, I shared the details with my family and closest friends, but I was less open with others. My coworkers were all curious about why I had suddenly disappeared into the hospital. I sent out vague emails to them telling them I had an auto-immune stomach condition. I was too afraid they might look up ulcerative colitis and see what the symptoms were. Once my hospital stay became lengthier, I did fess up and share the name of the condition. Surprisingly, it felt really good to not have to keep everything to myself, and I found that the people in my life were very supportive.
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, COMountain 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:)
I hope everyone had a great holiday weekend. In between working full time, I have been planning, packing up for and carrying out successful hikes of a few of Colorado’s famed 14ers. This hasn’t left much computer time for blogging. Stay tuned for an entry and video highlighting these ascents soon!
Until then, suffice it to say that so far my ostomy has caused me no issues in returning to the things I love again. I spent a lot of time in the hospital and at home during recovery wondering how in the world I was going to get back into outdoor activities with a stoma and appliance. I have finally discovered the simple answer to this question: just get out there and do it! Of course, you must keep in mind what is sensible in your healing progression, but beyond that, the answers of how to how to deal with your ostomy while you are out there will present themselves as you go. The will to succeed and enjoy your favorite activities again will go a long way in helping you overcome any challenges you might have.
Scaling the upper flank of Mt. Harvard, a Colorado 14er, on July 3, 2011.
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.
There is nothing as satisfying as knowing that you have faced a challenge and succeeded beyond your wildest hopes. That is how my recent four-day backpacking trip to Rocky Mountain National Park over Memorial Day weekend felt. We hiked 3.5 miles from the car and camped for three nights at 10,500 feet, exploring some of the neighboring terrain on day hikes. (The trip is chronicled in a two-part video: Episode 5.)
Throughout the whole trip, I kept having to pinch myself to make sure I wasn’t in some spectacular dream, feeling so strong and healthy. Was it really only four months ago that I was still toting around a wound vac to heal my stubborn abdominal incision? At that time, my wound still hurt too much to even go on the shortest hike. Now here I was in the middle of the remote and snowy mountains, toting a backpack instead of my vac, immersed in the beauty of nature and feeling pretty much unstoppable.
What an amazing week of outdoor adventure it has been. We are still working on the video for our backpacking trip last weekend, as there is a lot of footage to sort through. We hope to get it on the site in the next week.
Until then, we created a short film covering a fun day-hike Doug and I completed along with Doug’s dad and our good friend. Shadow Canyon, leading to South Boulder Peak and Bear Peak in Boulder, Colorado’s famed Flatirons, has always been one of my favorite hikes. It is a challenging ascent that links up two peaks, and has around 3000 feet of elevation gain in a little over 3 miles. I have been day-hiking a bunch to get strong again, and figured I was finally up for something more strenuous. And was I ever! I could not believe how great I felt on the entire hike. Everyday I realize more and more how my diseased colon had held me back. Now that it is gone, I am blissfully getting used to my new “normal” and loving life!
There were a couple of new things to deal with on this excursion. One was scorching temperatures. The high today was 90 degrees–definitely my warmest hike since surgery. I had to really stay on top of hydration and ended up tanking up on water before getting to the trailhead, drinking about 4.5 liters of water on the actual hike and then guzzling another 1.5 liters when I returned home. I am finding that avoiding dehydration on the trail is not that difficult. It just takes planning to make sure you carry enough water, and then some self-discipline to make sure you drink, drink, drink.
Ostomy Outdoors 