When I first heard about my friend Charis’s IBD/Ostomy themed pumpkin decorating contest on her great new Facebook site (http://www.facebook.com/FullFrontalOstomy), I knew I had to enter. However, I had no idea what to do for a design. I went to the store and bought a pumpkin and sat it on my table… waiting for something to come to me.
And it did. While changing my appliance at 6 a.m. my stoma started to act up and spew output. I used to get frantic when this happened, but now I am accustomed to it and just chill out for a while, paper towels in hand and let my stoma do its thing. However, the event did spark the inspiration for my pumpkin. I suddenly knew that the round vegetable on the table would provide the perfect canvas for a portrait of my mischievous stoma! That afternoon, I painted my creation.
One of the questions I get most often from readers of my blog is why I chose to have a permanent ileostomy instead of trying j-pouch surgery. Though I have mentioned a few of the reasons in other posts, I decided to address this topic in a little more detail. The point of this post isn’t to tell you that one surgery type is better than the other. They are both very good options. My goal in this writing is to share the thought process I went through to make my choice.
In the course of my illness, all my symptoms, colonoscopies, and genetic testing pointed to Ulcerative Colitis and not Crohn’s. This made me made me a candidate for either surgery type. At age 38 during the time of my surgery, why would I choose to live with a “bag” for the rest of my life?
It wasn’t a decision I took lightly, and I gathered all the information I could. This began when I was still in the hospital, facing the possibility of emergency surgery. The very kind and helpful general surgeon who would have done my surgery had I continued to decline, visited my room almost every day to check in and patiently answer my seemingly endless questions. He introduced me to the words “ileostomy” and “j-pouch” and gave me a great foundation of information to build on.
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.
“The scariest thing for me through this whole ordeal has been the rapid weight loss over the past two weeks. My muscles are gone and when I squat down to the floor to pick something up, I can barely get back up. I feel like I am doing the hardest move on a rock climb just to do some simple movement. I try to do a couple walking laps in the hall everyday to stay strong and keep my legs moving. I just want to be healthy and well again.”
Around this time last fall, I emailed the above update to a couple of good friends while I was in the hospital with my UC flare. I was so weak that it was difficult to do even the most basic things, like stand in the shower or walk up the stairs. I seriously wondered if I would ever be strong enough to rock climb again.
Last night, thanks to the health I regained through surgery, I made my first trip to the rock climbing gym in over a year. At first it felt foreign to put my harness on and tie my figure-8 knot, but once I placed my hands and feet on the holds and began ascending the wall, the movement felt natural to me.
Snow is soon to fly in the mountains, and my peak ascending opportunities are going to be more limited for a while. I have turned my attention to getting back into running, something I have been neglecting while preparing for and carrying out all of our backpacking and summit trips this summer.
I have decided I want to begin training for the 2012 Crohn’s & Colitis Foundation’s Team Challenge half marathon. I know I won’t be ready by this December, so I plan to work up my strength and endurance and then join the organization’s formal training group next fall. I am super excited. I did several 5K and 10K runs, including one trail running race in my pre-surgery days, but never a half marathon.
In the past, some of my worst ulcerative colitis flares happened when I was training for races. I believe running aggravated my colon. I knew where all the restrooms were on my running routes. Sometimes on routes where no bathrooms were available, I can remember speeding up on the last mile, bursting through my front door and barely making it to the bathroom on time. On trail runs, I used to bring toilet paper and supplies in my waist pack to dig an emergency hole in case I really had to go. Gone are those days! My appliance adheres really well through exercise with no leaking issues to date. As long as I empty before I head out on runs, I will be good to go for hours.
I was looking through a little spiral-bound book that I kept my journal entries and notes in during my hospital stays. I thought it was interesting that last year around this time I was keeping a log of my bowel movements in it to report to the doctors and nurses in the hospital during my final flare. Now I am starting up a running log. What a change!
A log entry in my notebook on day nine of my hospital stay in the fall of 2010.Keeping track of my running distances and miles as I begin training again in the fall of 2011.
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.
Many new ostomates wonder how to deal with their output on hikes, as we usually have to empty our appliances every 4-6 hours. The answer is to dig a “cathole.” This is the term commonly used by backpackers for a hole to bury feces in. Because this is a very important skill for any outdoor enthusiast with an ostomy (or IBD) to have, I created a short video to cover some of the basics.
I am guessing that I have dug around 500 catholes in the backcountry in my lifetime. As an ileostomate, I am increasing that number at a rapid rate. Gone are the pre-ulcerative colitis days of having 1 or 2 bowel movements in a day. Now I consistently empty my pouch around 6 times in 24 hours. On the trips when I don’t use closed-end pouches, that equals 48 catholes on a 7-day trip! Knowing how to properly dig a cathole to protect the environment and water sources is crucial.
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.
Ostomy Outdoors 