Adventurous Life with an Ileostomy

by Ágúst Kristján Steinarrsson
(from Ostomy Canada Magazine – Winter 2012: Volume 20, Number 2)

July 18th, 2010 at 5 p.m. I was standing on top of a mountain peak in the Swiss and Italian Alps. I was 4,164 meters high which was twice the height I had ever climbed, as I had never climbed a mountain outside my home country, Iceland. From that peak, I could see most of the peaks of the European Alps. I could see Italy, Switzerland and even peaks from Spain – which were quite far away. The surroundings were just incredible and the best view of all, were the other peaks I was going to climb during the following days. Of them all, the Matterhorn – an icon of a mountain, was standing there incredibly close by and I planned on climbing that mountain seven days later, after climbing six other peaks.

This was breathtaking.

As we started our hike down, traversing through a rather narrow ridge I suddenly realized how surreal this actually was. That I was actually doing this, despite having an ostomy. Despite the fact that I had gone through surgery six months prior to the trip, and another bigger surgery two years ago where my colon was removed and I got a permanent ileostomy. Before that I had lived a limited life with colitis for five years where a hike up a hill wasn‘t even an option, maybe not even a walk to the store. Realizing how free I was and how far I had gone brought tears of joy to my eyes and I was suddenly immensely thankful for what I was surrounded with.

This was a special moment, and has a special place in my memory.

It turns out I have a lot of great memories like these, all piling in after my surgery. The freedom the ostomy brought to my life was complete and I’ve been able to do everything I have possibly wanted to do.

And the best thing is… I wanted to do all kinds of things, most of them highly demanding and extreme, and so far I’ve been able to do them all. All of these things have been my personal challenges, where I have been challenging myself, to see if my ostomy was a limit on my life or not. But, more importantly, I was just having fun and as soon as I realized the ostomy wasn’t a real hurdle I did anything my mind thought of.

In this article I will tell you about some  of my challenges which all lead to personal victories. Each victory was a stepping stone  toward new options and more fun, which finally led me to this special moment in the Alps. I hope this article inspires you to find  your own challenges.

ROCK BOTTOM
February 18th, 2008. I had just gone through, I think, a six hour surgery where my colon and more were cut out and I was left with an ostomy on my belly, a 30-40 cm scar on my stomach and a similar scar on my behind. I weighed 140 pounds, was pretty much only skin and bones and feeling pretty bad. The following ten days in the hospital were awful, saying it mildly, including a blockage in my intestines, infection in my stomach, failure with the epidural (three times), constant vomiting and more and more.

On the bright side, I was free from colitis and colon cancer and therefore I was optimistic about my future health. I was 27 years old and had my entire life ahead of me – better make the best of it.

As soon as I was out of the hospital it got better day by day. My objective was to regain my strength and health and get used to having that weird bag on my stomach… As soon as I started walking I was outside, walking along the seaside and stepping stones.

THE MONSTER IN THE SWIMMING POOL
I went swimming two months after the surgery…exposing my changed body, and stoma bag to anybody who wanted to notice. They turned out to be most of the pool guests. It was really hard, a lot harder than I thought it would be.

I did this because I wanted to take my four-month-old daughter to baby swim lessons, a popular baby ‘exercise’ in Iceland (She was two months old when I was diagnosed with cancer). It took me awhile to get used to swimming and I realized, at that time, that I didn’t want to go swimming on a regular basis. But I am happy that I did try it out and was part of this experience with my daughter and wife.

Swimming turned out to be my biggest hurdle, where it took me almost two years to feel completely comfortable in public showers and pools. Today I go swimming every week and enjoy it a lot, with my daughter and wife.

HIKING – PROBABLY TOO SOON
As I felt my body was recovering, I soon started staring at every mountain I saw. Before I knew it, I started hiking up mountains and soon hiked one mountain every one or two weeks. The first mountains, although small, were challenging. Especially since I was really scared of falling – as I was risking my scars to open up if I did… But I didn’t fall and it was really fun, it gave me confidence with my ostomy and simply gave me the mental boost I needed to continue.

More importantly, I was back in the mountains, which I had been deprived of for such a long time and I felt re-energized every time I went.

ROCK CLIMBING – STILL WITH STITCHES
Three-four months into recovery I went to climb outside. At first I was only planning on belaying my buddy while he climbed but before I knew it, I was climbing and leading a route, which meant if I fell I would free fall up to four meters, until the rope would catch me… At the time I was realizing this risk, I was at a 15 meter height and suddenly very aware of the stitches I had in my stomach, which I actually felt when I used my abdominal muscles, hugging that big rock wall – hoping not to fall…

I’m aware that that was not the smartest thing to do but it felt GREAT and gave me again tons of confidence for my future challenges.

Six-seven months into recovery I was starting to go on more challenging and technical climbs, where I would be spending up to 12 hours in the mountains. This took ‘getting used to my ostomy’ to a whole new level, as I needed to pay more attention to nutrition and fluids, trust everything completely and figure out little things, such as how to control the flow in the bag and empty the bag repeatedly in the wilderness. Also, my physical health was growing rapidly and my body had almost fully recovered after the big surgery. In six months I had gained more than 40-50 pounds, and most of it was muscle growth/recovery.

After these adventures and recovery I realized that anything was possible… It was just a question about how high I wanted to go. Realizing this, after five year of great limits, was huge.

JUMPING OFF A BRIDGE
Roughly a year later, two years after the big surgery, and two months after another smaller surgery, I had gotten very confident with my ostomy as it had simply become a part of me, as it had joined me on various adventures.

Therefore, I was pretty much open to anything and when my friend said “Hey, should we jump from a bridge with a rope?” I simply said “sure!”

Three hours later we had put up a quite complex swing system on a bridge. What made this swing different from a normal one was that the swing was 10 meters high and it started on top of a bridge. To start, we would have to jump off the bridge, fall up to 10 meters, and then the ‘swing’ would catch us and give us a huge swing under the bridge with such force that we would almost go back up – and then back and forth.

We spent four hours of work setting everything up to get a 10 second adrenalin rush… 99.9% of people would say that that’s stupid and risky – but for us it was fun. Also, it was completely safe, believe it or not.

I had no problem with my ostomy in this, despite a rather big fall on a harness that lay exactly on the ostomy bag.

ON TOP OF THE ICELANDIC WORLD
On the day I had my operation, in 2008, I promised myself that I would hike on top of Hvannadalshnúkur the year after. Finally, a year too late (due to a possible swine influenza the year before), I stood on top of the highest mountain of Iceland after a nine hour hike (15 hours up and down).

There was no view. We couldn’t see anything due to clouds. And we actually couldn’t see anything for most of the hike. But I didn’t really care. I was finally on top of a mountain that I had started to believe I would never hike due to my illness. And the best part was – It was easy. I treasure that moment, especially because my wife went up there with me. She doesn‘t have the same mountain addiction as I do but, after my operation, she said she wanted to go with me and be a part of this, a part of my miniature moment of triumph.

I guess I’m sounding a bit dramatic, especially given the fact that thousands of people have hiked on top of this mountain. Also because I had hiked and climbed more demanding peaks than this one. But given my history and my endless desire to go up on this mountain, this was huge.

THE ALPS
Roughly two years had passed since my surgery and I was in the Swiss and Italian Alps, starting to climb seven peaks, ranging from 4,000 to 4,600 meters high. I had spent the last six months getting into shape and building up mountaineering skills. During my preparation I was climbing, cycling, running, hiking, doing rope yoga and more and more. I was physically active every day of the week and had reached a new peak, physically and as a mountaineer.

The Alps were a gigantic dream coming true, leading to this emotional moment on the first peak, as I described in the beginning of this article. And that was just the beginning as we ended up climbing six peaks, each better than the last one. We were, however, not able to climb the biggest goal, the famous mountain Matterhorn, but that was okay. The Matterhorn turned out to be the objective that I trained for and brought me to the Alps and helped me grow as a mountaineer. That alone was more valuable than a single climb up that beautiful mountain.

The Alps were definitely more demanding for me than for my teammates, who didn’t have an ostomy. I had a couple of problems, and always had to be prepared if something went wrong – which it did. That, however, was a very small price to pay for that adventure, and I will definitely go back there.

CLIFF DIVES FROM TWELVE METERS HIGH
Right after the Alps, the team went to Lake Como in Italy to climb for a couple of days. On the last day we stumbled on a climbing spot right next to the lake. We noticed that it was possible to jump off the cliff, which was about eight meters high. We were all standing there looking down and the guys were debating if the water was deep enough. While they were talking all I could think was…

“Can I do this with an ostomy?”

Two seconds later, while they were still talking about the depth, I jumped, head first with my hands out in the air. These twothree seconds in the air felt like forever as I was very, very focused on how I was going to finish the dive, without harming the ostomy or the bag. I landed, somehow did a somersault the second I touched the water and thereby secured the ostomy completely. As I was swimming back the guys yelled at me “you totally ruined our cool!”, as I turned out to be the only one doing the dive; they ‘only’ jumped feet first.

There were many more dives that day, the highest one from twelve meters high and one where I even dove backwards. We also climbed above the water, without any safety, as we would simply land in the water if we would fall.

That day was a very, very, very good day!

I had never taken a dive from a height like that, and had seldom taken a dive after I had gotten an ostomy, even from no height. Despite that, I simply HAD to give it a try, and at least find out if I could. I am so grateful that I was stupid enough to do just that. For me, that dive somehow symbolizes how I have lived my life after ostomy surgery. That is, if I want to do it, I’ll try it. What’s the worst that can happen?

LIMITATIONS ARE HARDLY AN OBSTACLE WHEN HOPE AND DESIRE ARE CLOSE BY
These moments that I have shared, among many others, were vital stepping stones in my life. They tell a story of me going up, which started in a hospital bed and ended in the Alps and in Lake Como. Since then, I have calmed down somewhat and spent less time in the mountains. But when I do go out and have fun, which usually is something new and challenging, I am completely confident with my ostomy and never think, “Can I do this with an ostomy?”

What I will do in the future, mountaineering or whatever, will only be limited by my desire for life, nothing else.

Having experienced bad health for a long period of time, I am very aware of the fact that my good health is a gift – and it will not last forever. Therefore I strive to get the most of it, while it lasts, and try my best to have a healthy mind, body and soul, to make it last longer. I urge you to do just the same.

I sincerely believe that my desire to have fun, and determination to not let my limits stop me, are the sole reason I got to do all of these things, which have truly improved my life. Therefore I like to end my words with this little creed of mine: Have fun in life and do things that scare  you or you believe you cannot do.  You’ll be surprised what can happen.

Best from Iceland, Ágúst Kristján Steinarrsson

If my story has inspired you in any way,  and you want to know or see more, you can  visit my webpage, https://goingup2010.wordpress.com. There  you can view videos from my adventures and read various blogs. On that page, there  is a video showing events from the recovery  period that I was describing which might  give you a better feeling for these great  times. It is called “Adventurous Life with  Ileostomy” and I guess seeing is believing…

“Adventurous Life with an Ileostomy” first appeared in the Winter 2012 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada by joining Ostomy Canada Society. Find out more here.

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