When I first got out of the hospital around Thanksgiving in 2010, I was overwhelmed with my ostomy appliance. I remember calling Doug on the phone in tears the first time I tried to change it on my own. Output had gotten all over the place, there was way too much skin showing around my stoma, and I had put the one-piece pouch on quite crooked. Doug had gone to the airport to pick up my Mom so that she could help take care of me during my recovery and wondered why I hadn’t waited until they got home so that they could assist with the change. I didn’t have a good answer. I have a fierce independent streak, and I wanted to prove to myself that I could do it on my own. However, after that disaster I quickly realized that I wasn’t ready. I needed their help, and Doug or Mom assisted me with every single change in those initial weeks.
Though I was feeling better about my appliance after a few weeks, I still wasn’t all that efficient or confident at changing. So I went back to my stoma nurse for a refresher. She gave me some more tips which helped and soon I could change my appliances by myself. Still, it was the one thing ostomy-related that made me cry out of frustration time and time again. My stoma always created output during the change, making things take a long time, and I struggled to get my pattern cut to the right size. I constantly worried that I wasn’t getting things perfect and that I was either going to strangle my poor stoma or that my skin was going to get eaten away from cutting the wafer too big. It was at these times that I had my biggest moments of doubt about backpacking. If I couldn’t even handle doing the changes in my house, with hot running water and oodles of washcloths at my fingertips, how would I possibly do it out in the wilderness? No matter how I tried, I couldn’t picture it as a reality.
The problem was, I was jumping to step 20 when I should have been concentrating on getting the basics down. I realized this was causing undue stress and anxiety, and I began to focus more on the moment and tasks at hand. I could figure out the backpacking part later.
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.
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.
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.
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.
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.