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!

Part eight in a series: I am thankful for online friends

I am thankful for online friends

I am not sure what words I typed into the search engine to stumble upon Charis Guerin’s Inspire.com website, but it was one of those lucky moments of fate. I was just entering a horrendous flare up of ulcerative colitis, and was surfing the internet to read about the experiences of people who were going through the same thing. As I dove into the story that flashed up on my screen, I could not believe how much I had in common with the young woman who wrote it. She was strong and active and into fitness just as I was. At the time, she even had a job that very similar to mine where she worked on kids’ programming– only at a historical site instead of a natural area. A year before, an ulcerative colitis flare had hit her hard… so hard that she had gone through surgery to remove her colon.  I was so inspired by her story that I decided to contact her.

This was the first time in my life that I had reached out to a complete stranger about a health issue, and it felt really weird to pour my heart out and list all my unpleasant symptoms to someone I did not know. I can’t remember what I wrote exactly, but I am sure it must have sounded like a pretty desperate plea for help because within a short time, Charis emailed me back. As my disease quickly worsened, and I found myself in the hospital facing the possibility of surgery, Charis’s encouraging emails and phone calls helped get me through some very uncertain times.

As I continued to write Charis over the course of the year, I discovered that she was facing hard times herself as her j-pouch failed and she recently decided to undergo permanent ileostomy surgery. We have supported each other through all these health twists and turns and her friendship means a great deal to me. I hope I can be there for her during these tough times as she was for me. Right in the middle of of all these big challenges for Charis, she has started a successful new Facebook project called FullFrontalOstomy to help those with IBD and/or ostomies reach out to each other. This speaks volumes about how strong and inspirational she is. I hope that someday I get to meet her in person. What do you say, Charis? The 2012 CFFA Team Challenge Half Marathon or maybe at the UOAA conference in Florida?

Since reaching out to Charis, I have made so many more amazing friends through the internet and continue to every day.  I am extremely thankful for online communities where people can reach out, connect and get support. These forums, web sites, Facebook pages etc. allowed me to meet so many other people who were going through the same challenges and who were willing to talk openly about them. As an ostomate and/or person fighting IBD, you need a community where conversing about output or gas-filled pouches is as easy as discussing the weather. You need a place where talking about a new ostomy product feels as natural as talking about the latest release by your favorite band. You need to surround yourself with people who don’t blush when the topics of urgency, diarrhea or bloated and painful stomachs come up. Without online friends to talk about these things with, life can feel very lonely. I am thankful everyday that the internet has allowed people with ostomies and/or IBD to find each other and converse so easily.

With this post, I wrap up my series on the things I am thankful for. Of course, there are oodles of other things that I am extremely grateful for that I have not listed. Still, when I look over the list of the things I have written about over the last week, I quickly realize that the vast majority of the posts are about people. This isn’t surprising. When it comes down to it, people often make the biggest positive impacts in our lives. I will be forever thankful for the countless ways that these individuals, and so many others, have changed my life for the better.

Happy Thanksgiving!

Part five in a series: I am thankful for Remicade

I am thankful for Remicade

“What?!” my friends and family might say upon seeing Remicade on my list. “But you hated that drug!”

Sometimes it turns out that the things we are most thankful for are the same things we didn’t much like when we were experiencing them. So it went with me and Remicade, or Remi, as Doug and I nicknamed it.

I’ll be honest. I wasn’t excited to take this drug. When my GI doctor at the hospital said my options were Remicade (infliximab) or surgery, I was leaning towards the surgery. I found the thought of getting regular infusions of such a strong biologic medication for the rest of my life daunting. But I knew my doctors were right in their advice: I was in no shape for surgery at that time, being very sick, weak, under weight and on high doses of steroids. The plan was to take three infusions, and if all went well, heal up a bit. I would regain some strength and come out of the flare, and then I could see a colorectal surgeon to discuss possible surgical options.

So my short relationship with Remi began. And wow… was it great in the beginning! Within 5 days of my first infusion, the horrible flare that I had been battling for over a month came to an end, and I was able to leave the hospital. But there were signs that things were not going to be so rosy with me and Remi. The day before I left the hospital, I developed really intense throbbing back pain. I had an x-ray which revealed nothing, and I went home thinking it was just pain from being in a bed so long. Over the next week, things got much worse as the pain began to migrate to different joints one at a time and left me incapacitated and literally crying in agony for hours every day. It was crazy-bad and I knew it was nothing I could ever live with. And so, my relationship with Remi ended as abruptly as it began. My future infusions were cancelled due to the reaction, and the pain began to subside as the drug drifted out of my system over the following weeks.

But even though my memories of Remicade are a little traumatic, I know it was paramount in returning me to health. It is the one thing that kept me out of emergency surgery and bought me precious time to heal, taper off the prednisone a bit and see Dr. Brown, who I mentioned in my last post. My story might have turned out so differently without it. I know there are many thousands of  people with IBD and other diseases who rely on this drug and that it has changed their lives for the better. So yes, even though Remi and I didn’t end up getting along, I am extremely thankful for our short time together.

A dot marks the spot

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.

The paper cut-out shows where my stoma is. The location between the waist belt and leg loops prevents the harness from rubbing on my stoma. My belly button sits right under the waist belt.

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.

Continue reading “A dot marks the spot”

From keeping track of BMs to logging the running miles

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.

Dealing with Output on the Trail (feat. new video)

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.

Continue reading “Dealing with Output on the Trail (feat. new video)”

A Case of 14er Fever Requires a Lot of Water (feat. new video)

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.

Continue reading “A Case of 14er Fever Requires a Lot of Water (feat. new video)”

Happy to be Trying, Blunders and All (feat. new video)

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.

Continue reading “Happy to be Trying, Blunders and All (feat. new video)”

Loving Life and My New Normal (feat. new video)

What an amazing week of outdoor adventure it has been. We are still working on the video for our backpacking trip last weekend, as there is a lot of footage to sort through. We hope to get it on the site in the next week.

Until then, we created a short film covering a fun day-hike Doug and I completed along with Doug’s dad and our good friend. Shadow Canyon, leading to South Boulder Peak and Bear Peak in Boulder, Colorado’s famed Flatirons, has always been one of my favorite hikes. It is a challenging ascent that links up two peaks, and has around 3000 feet of elevation gain in a little over 3 miles. I have been day-hiking a bunch to get strong again, and figured I was finally up for something more strenuous. And was I ever! I could not believe how great I felt on the entire hike. Everyday I realize more and more how my diseased colon had held me back. Now that it is gone, I am blissfully getting used to my new “normal” and loving life!

There were a couple of new things to deal with on this excursion. One was scorching temperatures. The high today was 90 degrees–definitely my warmest hike since surgery. I had to really stay on top of hydration and ended up tanking up on water before getting to the trailhead, drinking about 4.5 liters of water on the actual hike and then guzzling another 1.5 liters when I returned home. I am finding that avoiding dehydration on the trail is not that difficult. It just takes planning to make sure you carry enough water, and then some self-discipline to make sure you drink, drink, drink.

Continue reading “Loving Life and My New Normal (feat. new video)”

Here’s to 500 views!

I had to do a double-take when I looked at my Ostomy Outdoors blog counter the other day and saw that it had hit the 500 views mark after only a couple of weeks. I never expected to have so much interest in the site. Thank you to everyone who has read, commented on, or included links on their own websites or Facebook accounts regarding the blog and videos.

I know firsthand the importance of hearing other people’s stories when facing ostomy surgery. The whole experience is a complex stew of hope, fear, excitement and worry. One needs help sorting through these feelings while trying to make sound decisions… usually while feeling very ill on top of it all.

Continue reading “Here’s to 500 views!”