No, I am not growing a winter coat like all the elk, deer and mountain goats I have seen on my recent outdoor excursions. All the hair I lost after my final UC flare and surgery is finally growing back! I was never sure if the losses to my tresses were due to the myriad of drugs I took for the disease, the rigors of surgery, malnutrition, and protein loss due to the flare or just stress in general, but between 3 and 7 months post-op,my hair fell out in mass quantities. Everyday, innumerable strands would plug up the shower drain, make my fleece jacket look like a Chia Pet, fill my comb, and make me wonder how there could be anything left on my head.
One day this summer when I had my hair pulled back, I noticed a transformation. All over my head were tiny sprouts of hair coming up. In the ensuing weeks, it began to look like I had a second short hairdo hiding underneath my remaining long locks. Though I am sure it will take over a year for these strands to catch up to the rest of my mane, I am happy to know that some day I will be wandering the mountains with my thick braids again.
So, if you have lost some of your hair after surgery, fear not. It does return!
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.
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:)
One of the hardest things in recovering from surgery and getting back into outdoor activities is knowing how to pace yourself. There are times in the months after surgery when there are clear lifting restrictions and guidelines, which provide easy-to-understand parameters for your activities. However, once those restrictions are lifted and you are feeling ready to get back to your normal sport routines, the path isn’t as clear.
Though it may seem like I am doing a lot of outdoor activities since surgery, I have paced myself very slowly. I started out with many short walks. When those felt good, I moved on to longer and steeper excursions. On the hike to Mt. Elbert covered in this video, my legs got extremely tired on the hike out, and I thought perhaps I had overdone it. Still, within three days, my sore muscles had completely recovered–a sign to me that the hike, though strenuous, was not at a level that pushed me too hard. By the next weekend, my muscles were feeling great and ready for a new adventure.
The following is a list of additional things that I am doing to prevent injury:
I always wear my Nu Hope hernia prevention belt when I do any outdoor activity beyond a short, flat-terrain day hike when I am carrying no significant weight (say 10-15 pounds).
I have my husband, Doug, help me lift my heavy backpack on to my shoulders. Once it is resting on my hips, I am better able to handle the weight without straining my abdominal muscles.
I use hiking poles to help with my stability as I get stronger.
I leave for hikes extra early to allow myself the ability to hike at a slower pace with more frequent breaks.
I pay very close attention to my body. So far I haven’t witnessed anything more than normal post-workout muscle aches. However, if I feel something more significant, I will back off and give my body more time to adjust to the next level of activity.
I am working with a physical therapist to strengthen my core muscles using very mild and low-impact exercises that are safe for the level of healing I am at.
My goal for the fall is carrying out a week-long backpacking trip with a few peak ascents. Hopefully with my training regime, I will be ready for this challenge.
Today I went in for a visit with my stoma nurse for a very minor skin irritation issue. Her office is right next to the hospital where I had my surgery and also next door to my surgeon’s office. As I was pulling into the parking lot, I realized I had not been back to this area of medical establishments since mid-March. Quite a record after driving there every couple of weeks for four months while I was preparing for and healing up from my ileostomy surgery. As I drove by, the tiny park next to the hospital caught my eye.
I had some complications after surgery due to my body being difficult and stubborn in its healing, which required some additional hospital stays. At first, I had no idea this little nature-nook-of-a-park even existed. One day, knowing of my love of the outdoors and my somewhat anxious state during one such hospital visit, my surgeon phoned my room and told me that the weather was gorgeous and that I should head outside to visit this place.
Though it was nice outside, it was a bit chilly and I had left my jacket in the trunk of the car before checking in to the hospital a few days prior. I also had a large drain hanging from my butt cheek. Not the most ideal situation, but I had been given permission to go outdoors!!! Nothing could have stopped me. As I headed through the gate of the park, and situated my sore butt carefully on the bench, peace came over me. It was winter, so there were no leaves on the plants, and I only saw one bird up in the branches. Still, this tiny bit of nature provided just the soothing effect I needed. For the first time since checking in, I found my mind wandering away from the hospital to thoughts of future adventures. I wrote in my journal for a while, soaking in the sunshine and fully enjoying the moment until the cool air finally hastened me back inside. I returned to my room feeling rejuvenated and hopeful. Continue reading “The Nature Nook”→
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.
Seventeen years ago today, I married my husband and best friend, Doug. We had already been a couple for four years at that point, which equals a grand total of 21 years together.
Our life together has always been steeped in outdoor adventure. One of our first dates was a winter camping trip to the Porcupine Mountains in the upper peninsula of Michigan.
Snowshoeing on a winter camping trip in the Porcupine Mountains, Michigan, in 1990
Since then, we have made may trips into the wilderness to rock- and ice-climb, backpack and ski. Such trips are often riddled with trials. We have weathered storms for a week in our tent, dealt with some scary moments on climbs and made it through some of those tension-filled arguments that oftentimes erupt between couples during stressful moments in the outdoors. We have always emerged from these events stronger.
On top of Gannett Peak, Wyoming, in 1999
Perhaps facing these adversities in the outdoors together helped us prepare for one of our biggest challenges yet: my severe UC flare up and eventual ileostomy surgery. Just like facing those trying times in the mountains, this experience has helped strengthen our bond and has showed me the depth of my husband’s love for me.
Often in life, it is the simple things that demonstrate love the most. Almost every morning, when I woke up in the hospital around 5 a.m. Doug would be there. During my hospital stay for my final UC flare, he helped get me through the seemingly endless days by bringing my favorite chick-flick DVDs to my room and watching them with me (yes, this included The Notebook–not one of his faves). Doug strolled the same hospital floor walking route with me countless times to help me maintain strength and kept me from becoming too scared when we stopped at the scale in the hall each day to discover I had lost yet another few pounds. When I was too tired and sick to stay in contact with my family, friends and coworkers, he worked hard to keep everyone updated. Doug held my hand during my first Remicade infusion and monitored my vitals even more diligently than my awesome nurses. He took off from work so he could be at the hospital when I was making important decisions about my treatment with the doctors. He came with me to my initial surgery consult so I wouldn’t miss a bit of information.
After surgery, Doug reminded me to push my pain machine button on schedule. He brought me ice chips and summoned the nurses for help. He sat with me during my first couple of appliance changes with the nurse and then helped me when I got home, never once showing any aversion to my new plumbing. He got to know my surgeon and became a partner in my care, oftentimes calling and communicating with him when I was just too exhausted and sleepy. Doug became my wound-care expert when my incision opened up, coming home on his lunch break to painstakingly pack it with gauze–just one of three times he did this each day.
And most importantly, he was always supportive of my desire to have the surgery, and has continuously made me feel beautiful even with the addition of a stoma and pouch on my belly. When I had moments of doubt and tearful times, he was there to lift my spirits and remind me of how awful I felt before the operation and the new life this was going to give me. Now that I am feeling better, he continues to support me by helping to make these films. I pretty inept at most things techie, and could not do this project without his help. My biggest hope for all new ostomates is that they have someone as loving and supportive as my husband in their life to help them get through surgery and on the road to recovery.
Hopefully, in 30 more years we won’t be sitting in rocking chairs on the front porch, but instead will still be swinging from ropes on rock faces. There are likely to be more uncertain times between now and then, but I know after this challenge, we are ready for anything.
Ostomy Outdoors 