Three years!

When I woke up this morning, I wasn’t sure how to celebrate my 3-year stomaversary.  As I made breakfast, I tossed around some ideas. I thought about going to Zumba like I usually did on Friday evenings but it didn’t feel like it honored the specialness of the day enough. I considered taking a sketching excursion, but I really wanted to do something active. Soon the ideal activity popped into my head: I would go on a trail run! Though I recently started running again after a year-long hiatus due to hip woes, I hadn’t yet been off the road. I quickly formulated a plan in my head. After work I would stop at a local park and do my favorite trail running loop and then I would meet Doug in town for a celebratory dinner.

When I climb, I am only thinking about the rock in front of me. When I do yoga, I am focused on my breath. Running is one activity where I can let my mind travel on a whim. On the anniversary of my ostomy, I really wanted to have a chance to contemplate the positive impact that Wilbur the stoma has had on my life. A long run through the gorgeous landscape would provide the perfect opportunity to do that.

Contemplating the amazing journey from illness to health as I take a break on my trail run.
Contemplating the amazing journey from illness to health as I take a break on my trail run.

Sometimes I ask myself why it is so important for me to celebrate my ostomy surgery date. I am sure if I had elbow surgery I might note the anniversary as it approached each year, but I don’t know that I would feel the need to set aside time to reflect on the experience and do something special to commemorate it.

When I was in the hospital for 16 days with my final UC flare, many doctors and nurses passed through my room and I had a lot of great conversations about my desire to have permanent ileostomy surgery. There were so many varying thoughts and opinions on the matter. I remember several individuals commenting on the fact that, at age 38, I was awfully young to be considering a permanent ileostomy. Why wouldn’t I want to give the biologics a longer try? If I really wanted surgery, why not at least try a j-pouch? Was I sure I wanted to wear an ostomy pouch for the rest of my life?

Trying to justify my choice to others was extremely difficult. I remember having a heartfelt conversation with my GI doctor and IBD nurse about the things I valued in life and why I thought the ileostomy was the best choice for me. My reasons were often hard to put into words, but inside my heart was screaming. I just want my life back!

My life. The one that included hanging out with my hubby in the mountains and on rock faces. The one that wanted to be able to enjoy a fun dinner out with family and friends without UC food worries. The one that included teaching others about nature out on the trails in my job as a naturalist. I saw the permanent ileostomy as the fastest, least complicated and most predictable way of getting back to the things I loved the most. I never felt that I was too young for surgery. Instead, I felt that I was too young to not take a difficult but important step to get my quality of life back.

So every year, on November 8th, I feel the profound desire to reflect on and celebrate that big decision. It isn’t only a time to honor all of the amazing things I have done in the past three years and my renewed health — it is a celebration of my ability to listen to my heart and follow the treatment path that I felt was right for me.

Happy birthday Wilbur the stoma!

Feasting on Thai food post-run.
Feasting on Thai food post-run.
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Heading to camp

I first learned about the Crohn’s and Colitis Foundation of America’s Camp Oasis when I was stuck in the hospital for 16 days with my final flare-up of ulcerative colitis. I had been researching treatment and surgery options on my laptop from my hospital bed, and somehow stumbled upon a link to a website for the camp. As I was looking through the photos of the children at camp, I was immediately inspired. Knowing how hard dealing with UC was in my 30s, I couldn’t imagine how difficult it must be to have the disease as a child. All the things I took for granted as a youngster, like attending school functions, taking part in school activities like plays or sports, or going to summer camp would all be very challenging. The mission of Camp Oasis is to enrich the lives of children with Crohn’s disease and ulcerative colitis by providing a safe and supportive camp community. As I read about Camp Oasis, I was so deeply moved that I promised myself I would look into volunteering there after I recovered.

In February, I started to research the dates for the camp that takes place in my home state of Colorado. I was happy to discover that I had no work conflicts during one of the sessions and could request time off to be away for a week. I sent in an application, was interviewed, and found out a couple of weeks ago that I was accepted as a volunteer for the camp session for 7- to 13-year-olds in July. Today I went in for some vaccinations that are recommended for all camp staff and volunteers, and I am working on completing my paperwork.

Growing up, I loved being outdoors and my family did a lot of camping. I also took part in some summer camps with Girl Scouts and other organizations where we did nature study, sports, and arts and crafts. These early experiences had a major influence on me and laid the foundations for my love of nature, outdoor adventure, and art. Yet I often wonder: Had I developed IBD at a much younger age, would I have been able to be involved in these things? Thanks to Camp Oasis, many children with IBD do have the chance to take part in such fun, life-enriching experiences. I am eager to help children at camp discover all the amazing things they can accomplish. I can’t wait for July!

Me at camp when I was 11 years old. I am the one in the striped shirt on the far right.

Climbing progress

On Sunday I climbed a few feet above the fourth bolt on the wall at the rock climbing gym, held my breath, and jumped off. I felt a few butterflies in my stomach as I free-fell 10 feet before my rope and harness caught me and brought me to a stop. Doug lowered me to the ground where a staff member gave me a smile and a casual “nice job” nod. I had just passed the test to be able to lead climb at our local rock gym. This was my second such test. I had also taken one in Fort Collins last month at the gym we sometimes climb at with Doug’s father.

In lead climbing, a climber clips their rope into protection placed in the rock (or on the artificial gym-wall) as they go. This “pro” is either: 1) temporary equipment that a climber places in cracks outdoors, or 2) permanent, preexisting bolts drilled into the rock or artificial wall. If a climber falls above the last piece they clipped, they will travel some distance before the rope catches. For instance, if a person falls three feet above their pro, they will fall that distance plus three more feet until the rope catches. Factor in a bit of rope stretch and the total distance could be 10 feet. The climbing gym wants to make sure climbers know how to safely clip their rope into the bolts on the wall and fall properly before they will allow you to lead climb.

Top roping is a different style of protecting the climber in which the person will only fall a short distance because the rope is already anchored at the top of the cliff or wall. When I began climbing again a year after ostomy surgery, I started with top rope climbing. Though I am now leading in the gym, it will be a while before I feel confident to lead routes outdoors again where there are more hazards.

Nothing has been a bigger symbol of my climbing progress as being able to get back on the “sharp end” of the rope. I was fearful of what a big fall might feel like after surgery. Would falling several feet in my harness hurt my stoma? Would the resulting tug make my pouch pop off? As has often been the case when returning to my active pursuits, none of my fears came true, and my stoma and pouching system held up just fine through the tests at the gym.

Lead climbing has not been my only measure of progress lately. While climbing weekly, I am quickly moving up the grades and getting on some overhanging routes (steeper than 90 degrees). When I returned to the rock gym five months ago, I didn’t even try to do any marked climbs — I just grabbed any hold on the wall. Soon after, I was only using the “on route” holds, but sticking to routes in the 5.7 range. Last month I ventured into the 5.8 and 5.9 territory, and last weekend I did my first 5.10-. I am feeling powerful and strong with not the slightest pain in my core.

When I got back into climbing, I told myself that I would be happy doing 5.7 routes for the rest of my life if that was all my body could handle. All that mattered was that I could climb again. However, I now see that these restrictions won’t be necessary. By conditioning my body, progressing slowly to build the required strength, and always wearing my six-inch-wide hernia belt, I am quickly returning to my pre-surgery climbing abilities. I look forward to warmer days when I can start climbing outdoors on a regular basis and head out on some much longer routes. And, of course, I’ll share some of those through videos!

Cartwheeling, tumbling and cratering myself to confidence

Yesterday I cartwheeled, tumbled, and cratered countless times on the slopes while snowboarding. Normally, one might not be pleased with such a performance, but these mishaps were a major milestone for me. Up to this point after surgery, I have been very tentative while snowboarding. To fall so many times meant one thing: I was pushing it on the slopes and feeling absolutely wonderful.

Last year during my initial two times out boarding post-surgery, I fell a lot too. However, that was a different situation because those falls were caused by my muscles being weak. Yesterday, the tumbles happened because I was going faster, turning more aggressively, venturing onto some black diamond runs and even doing some tiny jumps (okay… I only caught a foot of air, but it was something). And most importantly, I had finally let go of some fears that had been holding me back.

During my earlier snowboarding trips this season, I was always afraid of falling. What if I twisted a weird way? Would my body be able to handle it? Though the fears were likely justified in the beginning, I was having growing suspicions that I was babying my body too much while snowboarding the last few times. So, this time I put the trepidations aside and went for it.

As I zipped down the slopes, I not only had some little tumbles, I also managed to squeeze in a few of my most dreaded fall types. One of these was an edge-catch going at a slow speed on a catwalk. My healed butt incision survived the resulting sling-shot slam on to my bum and back just fine. I also did a great snowboard nosedive into fresh powder. My body twisted as it came to a sudden stop, but weathered this graceful move as well as it did during the countless times before surgery. In the late afternoon, the sky clouded up and the light became flat, and I couldn’t see the ungroomed terrain beneath my feet well enough to gauge my speed. I soon found myself in a vertigo-induced cartwheeling fall. Yep, I came away from that one unscathed too.

Getting up from one of my many falls.

By the end of the day, my legs were so fatigued that I could barely link my turns. Doug and I had caught the first (well, about the 20th chair–we were in line) and last chairlifts, and except for a short lunch break, had snowboarded at a hard pace all day long. The conditions were phenomenal and it was just like the old days when we would do countless laps up and down the mountain, not wanting to waste a minute of time on the snow.

I sometimes think back to the time when I was sick with Ulcerative Colitis, and how it felt like my body had betrayed me by attacking itself and causing me to become ill enough to lose my colon. It has been extremely difficult to build up trust in my body after that. Even though I have recovered and regained my health, I still find myself with the unsettling feeling that something else could go wrong. Without trust in my body, it is very difficult to overcome fears that could prevent me from reaching my goals, not only in sports, but in life as a whole. I desperately need to believe in it again! As I put myself through the wringer on the slopes yesterday, I finally felt strong signs that my post-surgery body is working hard to regain my confidence.

Craving normalcy (feat. new video)

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.

The New Year: looking back and looking ahead

Happy New Year everyone! I hope 2012 brings health and many blessings.

As I set out to write my first post for 2012, I couldn’t decide if it would be best to look forward and write about my goals for the coming year, or if it would be better to reflect on highlights from 2011. As you are about to find out, I like to juggle a lot of things. I might as well keep up with that tendency and write about both in the same post!

I have never been a fan of creating a formal list of New Year’s goals. I have a lot of interests and love them all… everything from activities at work, working on projects involving ostomy awareness, artistic endeavors, fitness goals, to trips Doug and I want to go on. I get a little frustrated when I try to make a formal goal list because there is so much I want to do! I soon discover that it is probably unrealistic to accomplish it all. That said, there are a few things that are a high priority this year.

  • I want to do a better job of keeping in touch with my friends and family. To all my family and good friends who are reading this: did most of  you get a Christmas card from me??? (Rhetorical question!) I didn’t think so. The same busyness I mentioned above sometimes keeps me from answering emails, writing or calling people, and spending time with my loved ones. I want to be better about making sure these people know how much they mean to me.
  • I want to continue sharing my thoughts on this site. No need to elaborate much more on this one. I have a huge passion for showing people what is possible after ostomy surgery and hope to keep writing and creating videos.
  • I want to get back into working on art. My creative endeavors like drawing, painting, blockprinting and keeping illustrated journals are also big passions for me, and I keep another website covering some of those pursuits. If you visit the site you will see that my last post was completed in August. Not so good. And there is a printmaking project that has been gathering dust on my art studio table for over a year. Art needs to be part of my life again. I realize that may mean a few less posts here, as there are only so many hours in a day, but I am going to try to balance both…. all while working and doing outdoor adventures and exercising. Whew! It is going to be a busy year.
  • I want to go on a climbing road trip.  Two weeks, camping near the crags, waking up and firing up the camp stove, climbing routes all day and then coming back to camp to relax with a beer only to do it all again the next day — that is what I am longing for this year. When Doug and I were in college we spent a summer living out of the back of our truck and traveling the west, climbing pretty much non-stop. I am psyched to get back to that, even if it is only for a couple of weeks. I wasn’t strong enough for this type of trip in 2011, but I will be in 2012 and look forward to doing it with an ostomy!
  • I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December. I am only up to running about three miles right now. However, I have almost a year to train and it seems like I am finally getting off the plateau I have been stuck on. I am feeling so much stronger on runs lately and plan to inch up the intensity a bit in the ensuing weeks.

Now to rewind and reflect on 2011– the first full year of living with my ostomy. There have been so many highlights this year and most of them have already been covered in posts. Great times with friends and family, fun outdoor trips, stellar surgery results– I could write a book on all the amazing things about this year. To keep this post from becoming as long as a large novel, I will cover just a few major categorical highlights. Here are the best of the best for 2011:

  • Discovering my body’s ability to heal. There are many, many examples of this, but there is one that sticks in my mind the most.  Ten weeks after my initial surgery, I had to have an operation on my  incision, and my surgeon ended up removing some sutures that my body had reacted poorly to and then fixing things up. The resulting wound had to heal from “the inside out” with the help of a wound vac. Seeing that wound for the first time was a surreal experience. It was 13 cm long by about 3 cm wide and another 1 cm or so deep. I had to detach mentally to view it, and when I did, it reminded me of an interesting dissection project from biology class. Actually, my scientist-side was pretty fascinated– it was certainly not a part of me that I had ever gotten to see before (and hopefully never would again). Right before my eyes I could see my abdominal wall and the layers of skin tissue on the sides of the wound opening. What happened in the following six weeks was even more captivating (okay… except for the pain of the wound vac which was really bad for me at times). The wound filled up with healthy red granulated tissue and then sort of zipped itself up from top to bottom. How did my body know how to do that?  It was absolutely amazing! I thought I would end up with a heinous scar, but it actually looks pretty great considering the wound that was there before. Now whenever my body is healing, even from something as small as a pulled muscle, I think about that experience. The body’s ability to heal is truly amazing and something that 2011 will always remind me to celebrate.
  • So many firsts! After I was sick for a while and then started to feel better, life just got so exciting! In the beginning, the firsts are so small. There was the first walk after surgery, the first time output came out of my stoma, the first appliance change. Things progressed from there… there was the first time I got brave enough to eat a peanut, the first try at putting my favorite jeans back on, drinking my first beer. Then there were all the athletic firsts… snowboarding, hiking a 14er, running, climbing. I am still hitting firsts all the time. Yesterday was the first time I climbed a 5.9-rated route at the gym. It was a delicate climb that required more balance than brute muscle power. Still, it was the first time that I felt like I was back in my old climbing body, doing some of the more athletic climbing movements that I used to. What a way to end 2011!
  • A new outlook. I write often about how being sick and going through major surgery has changed the way I view things. This has been one of the biggest blessings of 2011. I find examples of this new outlook in even the smallest moments of my life. For instance, a few months ago I was getting ready to lead a campfire program at work. It had been a long week and I was feeling tired and “grumbly” and not into it. Suddenly I remembered how much I missed my job last year and how much I longed to be out in the parks leading programs again. I immediately changed my attitude, got excited about the program and fully seized the moment. I got up on stage and shared information about all the amazing changes animals were going through to prepare for winter. I told stories, sang goofy songs with the kids and had one of the best programs ever. On the drive home I was overcome with emotion because it had felt so good to be out there again doing what I love. Life had given me back all I had ever hoped for and here I had been sulking just a few hours earlier. It was a big reminder to live with a spirit of thankfulness for what I had. Gratefulness, the ability to live more in the moment, the capacity to deal with uncertainty and change– these are just some of the ways I have changed for the better I have made in 2011.

As soon as I am done with this post, I am going to go for a run. I love the thinking-time running gives me, and inevitably, I always start composing blog entries in my head. I am sure as my feet hit the pavement and my thoughts drift off, I will think of hundreds of other things I could have included in this post. Suffice it to say that it has been an incredible year of recovery, growth and change. I am so excited to see what the next year will bring!

Healing the mind as well as the body

I was talking to a good friend on the phone the other day and he was commenting on how happy I look in my Ostomy Outdoors videos. He is absolutely right! I am completely elated to be doing all the things I love again. Some days it seems like I walk around immersed in a complete sense of wonder over how good I feel. To be ill for years and then get a second chance to be healthy again is an amazing thing, and the resulting smiles, laughs and even tears of joy are the real deal.

However, when I was recovering from surgery, there were some times that those smiles were nowhere to be found. About five weeks after my operation, I got lost in a mental funk. I had some complications that had sent me back to the hospital a couple of times after the original surgery, and I had started to worry about all the additional things that could possibly go wrong. On top of that, I seemed to be spiraling into sadness in general. I had trouble sleeping and completely lost my appetite… one morning it took me two hours to eat a hard boiled egg. I didn’t feel like talking to my friends and would lie in bed in the morning, dreading the thought of getting up and starting the day. Usually a motivated person with a gazillion projects on the horizon, I became listless and had little interest in doing anything. Longing for the days before UC, I would curl up in a ball and sob until I couldn’t cry anymore, only to repeat the emotional breakdown a few hours later.

These feelings completely caught me off guard because I was sincerely happy with my decision to have surgery and was completely pleased with the results. I had no regrets whatsoever. Yes, I had gone through some complications, but I knew that the most important thing — my actual ileostomy — was functioning perfectly. I had so much to be thankful for. I had the best surgeon imaginable, my stoma was a gem, my pouch stuck wonderfully, I had only experienced one appliance leak due to wound drainage getting under the wafer, and food was traveling through my ileostomy without a hitch. How could I be so satisfied in one sense but still so sad in another? It made absolutely no sense to me.

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