Doug and I kicked off the new year by taking part in our very first biathlon race. I decided before the event that I wouldn’t worry about my time or how many targets I hit and just enjoy immersing myself in a new activity. After all, I barely even knew what a biathlon involved three months ago and here I was wearing a race bib and sliding on skis that I waxed myself! What a fun and unexpected way start to 2014!
As for the results of the race–I ended up taking a while to complete the 7.5 kilometers, didn’t shoot that well and skied A LOT of penalty laps (extra skiing due to missing targets). However, today my father-in-law sent some photos that he took of the race and I noticed something: I have a huge smile in just about every photo. Clearly I wasn’t that concerned about my easy pace or any lofty goals; I was simply loving my time on the course.
When I was pondering setting updated goals for 2014, I thought about the biathlon and how I seemed to savor the experience more by not putting so much pressure on myself. Maybe for this next jaunt around the sun it is okay to ease up by not having a huge list of things I want to achieve. I have a general idea of what I hope to accomplish in the next year, but mostly I’d just like to allow some time for a little spontaneity, smile as much as I can and enjoy the journey.
When life gets busy, some things end up on the back burner. Lately, that item has been sleep. There has barely been a night in the past couple of months when I have gotten more than seven hours of shuteye—usually the number has been closer to five and there have been times it has been less.
What has forced sleep onto the back burner? In part, it’s a large, glaciated peak named Mt. Rainier that I will be climbing very soon. Along with my full-time job, life lately has consisted of these four things: hiking peaks every weekend to prepare for Rainier, going to the gym in the evenings to train for Rainier, keeping up with my physical therapy so that my joint issues don’t crop up on Rainier, prepping and packing for the Rainier climb. See a theme here? All these things take up an incredible amount of time. Many evenings I don’t get to bed until late trying to squeeze it all in. Most every training peak we have done has required a wake-up time of 1 a.m. in order to make it to trailheads early so that we can summit peaks before afternoon storms roll in. And even then—we experienced static electricity and buzzing hiking poles on one peak as a rogue storm cloud blew in at 9:30 a.m. Yikes!
With the climb on the front burner and sleep on the back one, my blog has worked its way into the far rear corner of a little-used cupboard behind a large kettle. Tonight I clanked through the pots and pans and dug it out for a quick post. To everyone who has been tuning in to the blog or who have emailed or commented and not gotten an answer: thanks for your patience. I will be back to posting and corresponding regularly once I return from the trip. Below, I am including some photos of our adventures so you can see what I have been up to. Since my last post about five weeks ago, we have climbed six 14ers and four 13ers, including a three-day backpack trip with one of the adventures. Whew!
As I prepare for Rainier, I am starting to get a little nervous about some ostomy-related things. I am wondering what it will be like trying to discreetly swap out closed-end pouches while roped up on a team, including some strangers. I hope I can keep up with my hydration needs. I am afraid that during short breaks, all my time will be used dealing with my ostomy and that I won’t have time to eat and refuel. Will my ostomy supplies make my pack heavier than everyone else’s? I know it will all be fine, but there are a lot of unknowns on the trip.
One thing that has really helped me not worry are the amazing staff at the guide service we will be using, International Mountain Guides. I have explained what having an ostomy is like to them and have asked for their suggestions on everything from dealing with poop on the mountain, to questions about hydration and accommodating my gluten-free diet. It is always a little awkward bringing up the intimate details of life with an ostomy, but being open about it helps me get the answers I need. The staff has made the process so easy. I feel comfortable asking them anything which definitely helps quell the fears.
In many ways though, I love the uncertainty. The best thing I have discovered for becoming confident with my ostomy is to throw myself into new situations wholeheartedly. Through those occurrences, I learn that I can be resourceful and adapt to anything. I can’t wait to see what challenging experiences await me on the gorgeous ice-covered slopes of Mt. Rainier. No doubt I will come back from this adventure with my horizons stretched even farther.
It has been a hard couple of days. I wish I could find my usually positive and hopeful self right now, but the only emotion I seem to be capable of summoning up is dread. I spent several hours last night curled up crying on the couch and probably shed enough tears to fill about three ostomy pouches (yes I was rehydrating). I tried to think on the bright side and I kept telling myself that things could be worse, but I simply could not turn off the waterworks.
One of the things I am trying to deal with are the why me thoughts. I had tried so hard to make good decisions in the course of my ulcerative colitis illness. One of the reasons I wanted my ostomy so much, and made my decision to get one rather quickly once my disease turned severe, is that I wanted to avoid possible side effects of the serious drugs. A lifetime of weak bones or joint pain sounded horrible to me and yet here I am; facing the exact thing I had tried so desperately to avoid. It almost makes me wish I could have had my colon removed the first day I heard the word ulcerative colitis.
I also can’t help blaming myself. There was a point about five months before my disease turned severe when I discussed progressing to the next tier of medications with my GI medical team. I was only experiencing mild UC symptoms at the time, but constant small-scale blood loss from my intestines had made my iron reserves low and we were having trouble managing them at the correct levels. I had been taking mesalamine and doing Rowasa enemas and they had been controlling most of my issues well. However, they were not stopping the constant intestinal bleeding. I was told about Imuran as one possibility and had bloodwork done that confirmed I could take it. I was also told about a probiotic called VSL#3. My choice was to try the VSL #3 and avoid the immunosuppressant at that time.
A short time after starting the VSL #3, I went into the most beautiful remission imaginable and had no UC symptoms whatsoever. It felt like a miracle. Unfortunately, the vacation from UC was a short one. Soon I was hit with my most severe flare ever. I was going to the bathroom 20-28 times a day and could not stay hydrated or maintain my weight. I was in rough shape and was admitted to the hospital and put on a high dose of IV steroids to try to get the flare under control.
Now I can’t help wondering if I had chosen the Imuran five months earlier: Would I have avoided those emergency high-dose steroids and the AVN mess that I now find myself in? I know these thoughts probably aren’t productive. In a way though, it feels like my brain has to chew through these questions to find peace and realize that, yes, I made the best decisions I could at the time.
Above all else though, my biggest issue and the one that had me sobbing at 2 a.m. is fear. I am absolutely terrified of what might be ahead. I was frightened by my UC diagnosis and was anxious about my ostomy surgery, but the AVN diagnosis takes things to a new extreme. I know I only have it confirmed in one shoulder now, but I am actually having a hard time finding stories of steroid-induced AVN where it only affected one joint. I am trying to stay optimistic, but the uncertainties are daunting.
When I saw a counselor to help me cope with anxiety after my ostomy surgery, she gave me some mind exercises to try. One of these was to picture myself sitting in my favorite place outdoors with clouds floating through the blue sky above. She said whenever I had a worry, I should visualize taking it and sitting it on one of the clouds. It was important to acknowledge the fears, but it was also necessary to let them go and not be weighed down—the clouds could hold the weight.
So I thought it might be good to list some of my fears and “put them on the clouds.” Some are small worries, some are larger, but all of them are weighing me down. They are listed in no particular order.
I am afraid my joints are going to die one by one and that I am going to experience endless pain and surgeries.
I am afraid that if the disease progresses, I will never be able to backpack, climb or snowboard again.
I am afraid this might worsen and that I won’t get to attempt Rainier this summer.
I am afraid that Doug is going to miss out on so many things if my AVN got really bad.
I am afraid that someday I won’t be able to work at the park naturalist job that I absolutely love.
I am afraid it would be hard to empty my ostomy appliance while healing from shoulder replacement surgery.
I am afraid I will cease to have inspiration for one of my huge passions in life—my Ostomy Outdoors site—because I will no longer be able to go on adventures. Ditto for my Ostomy Outdoors column in the Phoenix magazine.
If I couldn’t work, I am afraid I won’t be able to afford health insurance.
Without health insurance, I am afraid I wouldn’t be able to get any necessary surgeries.
Without the necessary surgeries, I am afraid I would be doomed to a life of pain.
Just a few tiny concerns, huh? I know that I will work through these fears in due time and that the Heidi that is so full of hope is close by. In fact, I am pretty sure I know where to find her. As soon as my schedule clears, I plan to head up to the mountains and search for my more happy and positive self. I am certain that that part of me is up there, skipping along the trails or zooming down the snow slopes and that soon we will reconnect.
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.
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.
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.
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.
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.
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.
Disappointment is one of the emotions I have the hardest time dealing with. As I was standing at the start line of the Bolder Boulder 10K on Monday waiting for the gun to go off, I wasn’t sure how to prepare my mind for the letdown I was sure to have at the finish line. I knew before I even began to put one foot in front of the next that I had no chance of matching or beating my results from the last time I did this race in 2009. I hadn’t run for at least a month and had just found out from my physical therapist a few days before that I had some major pelvis misalignment issues that were likely causing some of my pain and injury. Though he didn’t say I shouldn’t do the race, he did say I should take it easy and stop to do some exercises and stretches along the route. I had no idea what a taking it easypace would even be. Did that mean I should jog? Walk? I had never done a race where I wasn’t running as fast as I possibly could.
I was still pondering these questions when the shot fired. I took off at a pace between a jog and a run, but still the questions lingered. What time would I be satisfied with? An hour? Two? Though I don’t have a competitive streak when comparing my performance with others, I am fiercely competitive with myself. Ever since recovering from ostomy surgery, I had wanted to prove that I could do as well in this race as I had before getting so sick. I knew that was impossible with my current painful hip, but there had to be some sort of goal, right?
As I ran down the street and watched the people in my wave pass me one by one, I realized that this race wasn’t going to be about reaching any pace goals. It was about simply being there. After all, just weeks ago Doug had picked up my race package for me. At the time, I couldn’t even make myself open it. I didn’t want to see the running bib that I was sure I wouldn’t be wearing due to what was thought to be a stress fracture in my pelvis. Yet luck had veered my way. The x-ray had been a misread and I had been given the go-ahead to run while undergoing further tests for other pain causes. Here I was immersed in the event that I had wanted to do so much, and all I could focus on were things I had no control over. I couldn’t make my injury go away, and I couldn’t magically make up for a month of lost training time. I could, however, adjust my outlook. As I ran under the banner marking mile two, I flicked an attitude switch in my head from the side that read I am so bummed that I am not going to get the time I hoped for to the one that said I am so amazed to be running through the streets of Boulder surrounded by beautiful views, music on the street corners and onlookers handing out treats to the runners like bacon, cotton candy, and marshmallows.
I much preferred the second attitude and decided to keep the switch there for the remainder of the race. (I did, however, avoid catching any marshmallows. I had already had my fill of those the day before after consuming six of them to slow output before my appliance change.) At every mile marker, I stopped to do the exercises the physical therapist had recommended I do during the race. I knew that these stops were sabotaging my time, but I no longer cared. When my hips started to hurt slightly at mile four, I slowed down the pace. I had no worries. No expectations. In the past, I would never have veered off course to become a target for child with a Super Soaker. Never before had I taken advantage of the offers for high fives from sideline spectators. I don’t remember looking at the stunning vistas of the Flatiron rock formations along the race route in previous race years. At the slower pace, I took all this in.
Every other time I ran the Bolder Boulder, I finished in just under an hour. This time, when I looked at my watch at 59 minutes, I still had a little over a half mile to go. Just for old times’ sake and knowing that I was close to the end of the race, I picked up the pace and ran as fast as I could for that last half mile. I felt strong and vibrant as I entered the stadium and sprinted the final half lap to the finish line. Other than amidst the marshmallow-catching antics earlier in the route, this was the first time I thought of my ostomy during the entire race. I thought of all the things I had gone through since last entering that stadium in 2009, and how lucky I was to be back to health and running there again.
As I crossed the finish line, the letdown and disappointment that I was sure would greet me there had been replaced by delight. And when I finally looked down at my watch to see my time, 1:06:33, I was even more blown away. That was only about eight minutes longer than my 2009 time. This was certainly enough to please my self-competitive side — well, for the most part. In the stands after the race, there was a moment when I lamented to Doug that had I not been injured, I would have really nailed it. He reminded me that I was injured and that I did nail it. Oops, that little attitude switch had gotten bumped into the wrong place again. I put it back to the “here and now” slot, slathered myself with some sunscreen and sat back to watch others racers jubilantly cross the finish line — including a banana, gorilla, coyote, bear ,and unicorn. Hmm… maybe my goal for next year should be to run the Bolder Boulder in costume.
My first mainly sedentary week has been hard mentally. I wish so much that I could go for a hike or run, but just walking around the grocery store makes my hip throb with pain, so that is not going to be a reality any time soon. I went swimming at the gym and did an upper-body weight workout. Both of those activities went okay, but it feels like all the amazing progress I made working out with my personal trainer is going to slip away.
When sadness and anxiety start to take over and I can’t deal with the stress using exercise, I often turn to my nature journal to lift my spirits. Somewhere in those moments when I am looking closely at the pattern of veins in a leaf, and my pen is moving over paper recording what I see, my mind finds peace. Expect to see many drawings in the weeks ahead!
In the initial months after ileostomy surgery, all I craved was normalcy. Life as I knew it had completely disappeared. Gone were the days of getting up and going to the office to work on a variety of enjoyable challenges like writing nature-education curriculum and leading hikes. In my free time, there were no more hiking, snowboarding or running adventures anywhere on the horizon. Instead, life revolved around the wiggly red stoma on my belly. My days played out around endless worries and looked something like this:
7 a.m. How am I going to get my appliance on while my stoma is spewing liquid output everywhere?
9:30 a.m. Okay… got the appliance on. Wait, is that skin showing between my barrier ring and stoma? Geez, maybe I should do it over. My output will certainly eat away my skin if it touches that exposed 1/8 inch. But will it destroy my skin more if I pull the wafer off so soon? I better just do it to be on the safe side.
10:30 a.m. I can’t believe it took me over two hours to get an appliance on and this second one still doesn’t look that great. I need to call Doug and vent about it or I will cry for hours.
10:45 a.m. I need to drink some water. I am already way behind on my liquids today and I haven’t eaten breakfast yet either. I am really not hungry, but Dr. Brown said I need more protein. Is a protein shake and eggs enough?
11:30 a.m.I have only been up for a few hours and I am already tired. Better go take a nap. Am I always going to have to sleep this much?
1:30 p.m. Is that just a regular itch or is it from output touching my skin? Man, this incision hurts. I am not hungry, but I need to eat with my pain pills. I better have some lunch. When are these pain pills going to kick in? Drat, maybe I should have just sucked it up and not taken the pills. What if I become addicted to them?
2 p.m. Why am I watching this stupid TV show? Shouldn’t I be doing something productive? I am just too tired. Dang, I forgot to order those Hollister samples again. I am too tired to do that too. I can’t believe I am about to take another nap. I am supposed to be going for a walk right now, not sleeping.
3:30 p.m. The neighbors must be wondering what happened to me. I am walking so slow and hunched over, but it hurts too much to stand up straight. Is this two-block walk through the park really all I can muster? I can’t believe how much this hurts. This used to be my warm-up walk before I ran five miles, and now I can’t even cover this short distance. And I’m walking as slowly as a turtle.
4 p.m.I miss Doug. I am so lonely stuck here by myself. When is he coming home from work?
5 p.m. Doug is home! Doug is home! Doug is home!
6 p.m. Is this too late to be eating dinner? I am supposed to eat before now, but that isn’t very handy. Is four weeks post-op too soon to eat steamed broccoli if I chew it really, really well? I am so hungry for veggies. What if I get a blockage? Or horrible gas?
7 p.m. Wasn’t that just the 12th time I emptied my pouch for the day? When is this output going to slow down! It is like water. Have I had enough liquids to drink to offset that?
9 p.m. Okay, time to take a shower. Can I get this appliance wet? I better tape plastic wrap all over my belly just to make sure it stays dry and doesn’t peel off.
10 p.m. Time for bed. I should lie on my right side all night just in case I leak. Don’t want to get stool into my open wound.
11 p.m. My back hurts. I sure wish I could lie on my left side but I am too afraid.
12 a.m. Better get up to empty my appliance just in case.
2 a.m. Better get up to empty my appliance just in case.
4 a.m. Better get up to empty my appliance just in case.
7 a.m Thank goodness it is morning but I don’t want to get up. I am going to lie here and cry for a while. Will my life ever be normal again?
And so it went for the initial couple months after surgery. I was overwhelmed and depressed that my entire life now seemed to revolve around my stoma. I tried and tried to picture what things would be like when everything settled down, and I actually learned how to manage my ostomy, but it seemed impossible. I couldn’t see beyond the hard times I was facing in those moments. It was particularly difficult to imagine how I could possibly ever do outdoor sports like snowboarding again.
I wish I would have had a crystal ball back then. Had I, I would have seen that I shouldn’t have worried so much. My ostomy output would settle down as my body adapted. I would figure out my systems and become more efficient with them. My incision would heal. Someday in the not so distant future, my ostomy would feel like a regular part of my life as I returned to work and went on outdoor adventures again. In the crystal ball, I would have seen the point I am at now when everything is so much easier. The normalcy I craved after surgery has been restored to my life.
Last Sunday was a beautiful powder day in the mountains, and Doug and I headed up to go snowboarding. I decided to film the day’s events and create a video showing a typical day on the slopes with my ostomy. I realize everyone’s experiences are going to be a little different regarding their emptying schedule, when they eat, etc. What I hope to show is that once a person adapts to life with an ostomy and gets their own particular systems down, life can feel wonderfully natural again.
It was a gorgeously sunny October day last year when I packed up my harness and backpack and headed out the door. No, I wasn’t going on a hike or climb. In fact, the place I was traveling to wasn’t even outside. As I arrived at my destination, I walked down the sidewalk and through the double sliding door of the building. I made my way to the check-in line by the front desk and felt somewhat self-conscious with my huge backpack sticking out of a bag slung over my shoulder. A few moments later, I entered the crowded elevator, where people gave me quizzical glances. Such gear would be expected at a trailhead, but it was not the norm here. However, today, having my pack and harness was as important as it would have been on any hike or climb. As the elevator door opened on the ninth floor, I nervously walked to the department down the hall to meet my wound, ostomy and continence (WOC) nurse for the first time. It was time to have the site of my stoma marked.
I had been told to wear my favorite pants to the meeting so that the location would match with my clothing. However, I also decided to bring my harness and backpack. With outdoor activities being a huge passion in my life, I wanted to make sure that my stoma location would work as well as possible with my gear.
At the meeting, the nurse shared important information about what to expect with output, eating, activities etc. Finally it was time to get the location marked. I felt a little funny explaining to her that along with making sure the spot worked with my belly and with my clothing, I also wanted to test it out with my harness and pack. Fortunately, she didn’t make me feel silly about my request at all, and soon I had a big blue dot on my abdomen about two inches to the right of my belly button and two inches below. This was a good location because it was below my belt line. This meant that gear or clothing waistbands would not rest on my stoma or prevent output from reaching the bottom of my pouch.
When I got home, I stood in front of the mirror and looked at the mark. I tried to picture what it would look like with a stoma there instead. Suddenly, my decision to have the surgery seemed very real, and I felt excited and nervous at the same time. To further discover how my new stoma spot worked with my clothing and gear, I filled up the ostomy appliance my nurse had given me with applesauce and taped it on top of the blue dot on my belly. I then went out to the garage to dig out every backpack I owned. The one I had taken to my nurse visit was my favorite overnight one, but there was also the brand new day pack I had just bought before I got sick again. I had only used it once. And then there was the large load-monster of a pack that I took on very long trips. Would that one work with the ostomy? One by one, I tried on the packs and they all seemed to rest well above my stoma. I was encouraged.
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.