When I got out of the car and looked at the trail slicing across the hillside, I was intimidated. It started out steep right from the start, and I knew it wouldn’t ease up until it reached the summit of Horsetooth Rock. I didn’t have much faith in my ability to do a run of this magnitude since my longest run to date after my ileostomy operation had only been around 3 miles on flat terrain. This trip would be 5 miles with over 1,400 feet of elevation gain. Normally, I would have built up to a run like this, but we had decided to do this on the spur of the moment. In fact, the trip was so spontaneous that I didn’t even have any of my usual trail running gear such as my CamelBak water pack. Fortunately, Doug’s parents had a water-carrying waist pack to loan us which Doug carried.
Running, even on flat terrain, had been one of the harder fitness activities for me to get back into. Since starting up again last summer, I always became fatigued and seemed to be progressing at a turtle’s pace. As I started to run up the hill, I fully expected to get extremely tired. I don’t know if it was the gorgeous scenery or the fact that I was elated to be doing my first real trail run since surgery, but I felt amazing as I ascended the trail and didn’t want to stop. I bounded over roots, up rock stairs and just kept going. I did get some rests because the trail was very icy in spots, which necessitated some walking to negotiate the terrain. However, had it been dry, I think I would have been able to run almost non-stop. I felt that good.
The last 200 feet required scrambling up rock, and then we were on the gorgeous summit. I had made it! The descent was tricky due to all the ice, and I ended up scooting down on my butt in a few sections that were really dicey—or on my belly like an otter just for fun. I was so happy when I got back to the car. I could not believe what I had just accomplished.
My feeling of elation was short-lived however. When I got home, I logged into my Facebook account to see if anyone had commented on a post I had made about the run right before I left. I also checked my friend Charis’s page to see what she was up to. She had had permanent ileostomy surgery in September, and had just made a list of New Year’s goals that she was excited about accomplishing with her renewed health (read more about these experiences at her Facebook page and website.) I was anticipating an update about a workout she had accomplished or something else cool that she had done, but instead found a post sharing bad news.
At the exact time I had written on Facebook before my trail run departure, Charis had written a post about waking up with intense abdominal pain. In the time I was jubilantly running up the trail, she had realized she likely had an obstruction. As I got back to the car and then headed back home satisfied with the morning, my friend was in her vehicle traveling to the ER and facing fears and uncertainties.
The news sent my emotions reeling and the tears welled up. One of Charis’s resolutions for 2012 was to not have to go to the hospital, and here she was spending the second day of the new year in that exact place. I couldn’t believe this was happening. I wished so hard that she could get out of that hospital fast and get back to doing the things she loved. However, as the days progressed, my friend discovered that the obstruction, which had since passed, had happened because her bowel was narrowing and possibly had a twist. She had to head back to surgery to get it resolved. I was so angry that she had to go through this all. It wasn’t fair. She had already traveled such a long and difficult road with this illness.
I guess not one of us knows what lies ahead with our health. All we can ever do is live life to the fullest and celebrate during those moments when we are feeling well, and stay positive and brave through the times of pain and uncertainty. Charis is a shining example of this. She is one of the strongest people I know, and her positive attitude and fortitude during trying times is inspirational. I know she will get through this latest surgery, heal up and work towards her goals at a feverish pace. As she does, I will be right there cheering her on through all the ups and downs.
Ostomy Outdoors 
Wonderful, caring support for Charis. You are such a good soul, Heidi. I also look forward to her recovery and send her well wishes.
Can’t wait to see your new video!
Cary
Another inspirational trek Heidi. Surprised me to see you sliding prone! How did your stoma like it?! And what tunes were you spinning?
Your ostomate,
Cary
Thanks Cary! I will probably do a trail running video with more tips at a later date, but for this one I only had time to create a short, simple film showing the journey.
I actually didn’t even think about my stoma before doing the belly slide. I guess sometimes I do forget about my ostomy:) My stoma is a tough little bugger and suffered no ill effects at all. The ice was smooth, and I probably instinctively lifted my abdomen a little. Plus I am sure the clothing layers gave it some protection. When I changed my appliance the next morning my stoma looked as fine as can be. Otter slides down trails- yet another thing I can do with my ostomy ha ha!
As far as tunes, I have a little bit of everything on my Ipod but like Indie rock, folk and bluegrass the best… or pretty much anything acoustic with a catchy melody. Yeah… a little odd to run to such mellow music but I like how it seems to jive with the landscapes I run through. Going on runs is also my thinking time, and I love how this music puts me in an introspective mood as the miles pass by.
-Heidi
For some great acoustic guitar, check out Jeff Pearce and Andy McKee, both on iTunes. Each demonstrate influences from the late, great Michael Hedges, another brilliant, uniquely innovative acoustic guitarist (and singer) who unfortunately left this world far too soon.
BTW, I like your video music . . . And your art website. What talent! Downloaded a few of your works for my iPhone screens. Hope that’s OK!
Cary
I will definitely check out those artists. Thanks!
Glad you like my art. I need to get back into creating… it has been on the back burner for a while with being sick and then working feverishly on Ostomy Outdoors. I am actually hoping to work on a printmaking project a bit today. It is fine to download the works for your Iphone screen.
Unfortunately, my music talents are not so great. I have an acoustic guitar and have taken lessons and really enjoy it, but am only able to play simple stuff (and not very well either). The video music was created by Geeksaresexy.net which provides some free, royalty-free music options for amateur non-commercial videos. I am so thankful for this resource as music adds a lot to the videos.
-Heidi
Dear Heidi,
I am a newcomer to your site and find it very encouraging. I am a 43 years old Spaniard who has just undergone surgery to remove colon cancer and was left with a permanent ileostomy as a result. When I was 25 I was diagnosed with ulcerative colitis. At the time, I was going through my PHD and preparing to becoming a diplomat. I finally passed the Foreign Ofice exams and was posted to Central Asia for three years. The UC did not prevent me from doing my work ( opening the first Spanish Embassy in Kazakhstan was a very rewarding challenge) and travelling along the farther confines of the Silk Road, doing the Transsiberian or cruising the Volga. Afterwards I was posted to Vienna, where apart from a very intense work at an international security organisation I enjoyed trekking in those pristine Alps and crisscrossing Central Europe. My work took me frequently to the Caucasus, more Central Asia and the Far East. Then, in 2008 I returned to Madrid and became advisor to our Secretary of State for Foreign Affairs. Again, plenty of office hours and more working trips from Central America to West Africa, Europe…
In July last year I was posted to New York. Prior to my moving here, I underwent a rutinary colonoscopy in Madrid. The previous weeks I had suffered from a rare and acute flare up of my UC and my doctors thought that further checks were required. On July the 15th the shock came: I was diagnosed with colon cancer and given three months to undergo surgery or else. The doctors told me that it was impossible to know the extend of the carcinoma until the very operation was performed and therefore I went into the surgery room without knowing how I would come out from it. Well I came out alive and with an ileostomy. Somehow I had prepared myself mentally for that eventuality, but nevertheless it was a depressing experience. Also a sobering one. There I found myself humbled by the hospital experience, unable to manage the most routine and intimate things by myself. To make things worst as a result of the operation I had a “lazy” intestine ( what remained of it, at least) and was unable to digest food for a month. I became so thin that was unable to perform the less strenous exercises. Finally, by the end of september I was released from hospital and returned home. The next two months were all about regaining strenght ( the first days i could just walk no more than 50 meters in Madrid s Retiro Park) and learning how to manage the ostoma. Not an easy task. I was frequently depressed, particularly when in the process of finding the right suppliers my appliances leaked out of nowhere. I wondered how could I possibly get back to my work as a diplomat in such a messy state. Well, anyway I talked to my doctor and he agreed that by the end of november I could try to join my new post in New York and gradually return to work. I must confess that after a life of travelling to the most strange places on Earth the trip from Madrid to New York was the challenge of my life. Eight hours of constant fears about whether or not the pouch would hold or explode or whatever terror you can imagine. Well, nothing strange happened apart from the need of visiting the toilet more frequently than before…
Well, here I am now, a few months after the most frightful experience, trying to find an apartment in NYC, visiting museums…and yes, still leaking from time to time ( more tears and depression, albeit I am quicker to recover now). Tomorrow I will attend my first meeting at the United Nations…hope that everything goes right.
Sorry for the length of the message, but this is the first time I am able to talk about this ongoing experience and I felt really encouraged by your experience. All the best…
Dear Luis,
Thank you so much for sharing your story. You have been through so much. UC was bad enough for me… I can’t imagine dealing with a cancer diagnosis on top of that. You should be very pleased with the progress you have made since July. I know things seem hard now, but next year you will look back and be amazed at how strong you are and how much you have learned and overcome.
I am glad my site has been encouraging. It really does help to talk to others about it. I hardly told anyone about my ostomy in the first few months, but I found the more open about it I became, the better I felt. It is such a long and circuitous path to heal emotionally from all this. Don’t feel bad about having rough days. I have them too.
I hope your meeting at the United Nations went well today. You will find that every day that goes well will make you more and more confident and help you overcome your fears. I am lucky in that I have only had one leak since surgery and it was in the first week after the operation. I met with my stoma nurse and she helped solve the problem straightaway, and I haven’t had issues with leaks since. For me, Eakin Cohesive Seals were the fix, but everyone is different. I am sure you will find a system that works well for you and prevents leaks eventually. It just takes a lot of experimenting which can be frustrating. Though I haven’t had leaks, I have had skin irritation issues on occasion and have had to experiment a lot to find the right combination of products that works for me in that regard.
It is good that you are returning to work. For me, going back to my job full-time was the single thing that helped me to accept my ostomy the most. It felt great to be doing what I was passionate about again. Before that, I would just sit at home alone while my husband was at work and worry constantly about everything ostomy-related. Heading back to work reminded me that my life could feel normal again and gave me projects to immerse myself in. Soon, I was forgetting my ostomy was even there. You will get to that point too… it just takes time and patience.
Like you, I led a very full life before my UC and during most of the years I had the disease until things got bad at the end. I fully intend to get back to doing everything I did before, and I know you will too. Try not to worry about how you will do it, just know that you will. Each little step you take will add up and eventually you will be a pro at managing your ostomy in just about every situation imaginable. I am already starting to see this happening for me and it has only been a little over a year. I can only imagine how great I will be at it in 5 years:) You have accomplished many amazing things in your work and travels over the years and will undoubtedly add much to that list in the future.
Hang in there and please let me know things are going for you.
Wishing you the best,
Heidi
Dear Heidi
Thanks for the reply. The meeting at the UN went fine,though I could not avoid my mind wandering againg and again back to the inner, peculiar world of the new ostomate, like a surreal landscape by Dali. One of the things I find difficult to adjust to is the disconnection between my outer appearence, normal for the people I relate with, particularly those who know nothing about my recent predicaments, and the reality beneath the clothes. The same strangeness applies to the realm of self perception. When I dream, I still “see” myself as I was prior to the operation. So when I awake the first thought crossing my mind is whether I am the same person or somehow a different, more “limited” one. When after my operation I met a collegue back in Madrid who had suffered from colon cancer and is in the process of recovering ( though he did not need an ileostomy) he half humorously said that we ostomates are like cyborgs, so the future should be ours. Well, it is an interesting perspective, though I rather prefer remaining a normal human being. Anyway, one of the things I am learning is the need to have a center around which that fleeting sense of self can be anchored in times of intense distress. It can be the love for outdoor adventure, or faith, or family or work, or a combination thereof. In my case it is my love of reading and writing. The anticipation of being able to get back to my novels and essays and the research I did towards that goal at the time of my convalescence helped me to surpass the most difficult times. Also the memories of the good moments in life, many of them related to the trips across Central Asia and the trekking in the Austrian Alps. By the way, if you become tired of climbing mountains in Colorado, which I doubt, you should take a look at the area around Salzburg and Innsbruck and also at the Dolomites, along the border between Austria and Italy. There you can find some of the most beautiful mountain landscapes and also picturesque villages on earth (I particularly like Halstatt and Zell am See). I am sure you will also find plenty of inspiration there for your drawings….
Best and keep on inspiring us…
Luis
Dear Luis,
I am glad your meeting went well. I can relate to so much of what you write. My mind still often wanders at the oddest times to my memories of being sick, my ostomy and all the things I have gone through in the past year and a half. I doubt if that will ever go away. I think it is only natural after going through something so major. Such experiences are bound to change your perspective. I don’t think of it as a bad thing though. I like my new perspective, as remembering all that I have persevered through reminds me of the inner strength I possess.
I know exactly what you mean also about the outer appearance not revealing what you have been through. I went to a party three months after surgery and it was a very surreal experience. Though I had returned to work close to that time, I was still living in this world that almost entirely revolved around learning to manage my ostomy and healing my abdominal incision. Except for a few of my closer friends, no one at the party had any idea of what I had been through. Though I loved being immersed in an experience that had nothing to do with being sick, I felt awkward and like I could not relate to anyone. As the months passed though, those types of feelings went away I began to focus more on other aspects of my life and less and less on my ostomy.
You are exactly correct about needing things that center you. Before I was strong enough to get back to outdoor stuff, keeping a journal and sketching were the things I turned to for comfort after surgery. Though I didn’t do these activities often because I was so tired, overwhelmed and exhausted, I did them enough to remind myself that I was still “me” despite all the changes to my body. When I started to be able to do outdoor activities again, my sense of self became even stronger. Surrounding yourself with the people and things you love the most will really begin to make you realize that your ostomy has not changed who you are. You are still the same person just with an altered digestive system.
And yes, keep reflecting on those good memories of times in the outdoors and know that there are many more to come! If you would have told me last year at this time that in six months I would begin creating a summer’s worth of amazing memories including climbing nine 14,000′ peaks, and going on numerous backpacking trips with my ostomy including one 8-day trip, I would have thought you were crazy. But I did! The summer completed exceeded my expectations, and became one of my most memorable yet. Don’t underestimate what you may be doing soon once you heal more physically and emotionally. You will surprise yourself.
Thanks for the mountain trip recommendations. I have taken a couple of trips to Europe. One was for a high school trip, and I visited Germany, Austria and Switzerland including Innsbruck and Salzburg (though I didn’t get into the mountain on that excursion). My husband and I also went overseas as part of a month-long college course where we studied natural resource management policies in Poland, Germany and Austria. Doug and I stayed in Europe after the course and hiked in the Alps including the mountains around Zermatt, Grindelwald and Chamonix. It was amazing and I would love to go back and explore the Dolomites as well!
Take Care,
Heidi
I did a lot of crying over this whole ordeal, both in the hospital and since I’ve been home. I have a lot of fears but despite those I feel like you’re right, all you can do is live the life you have now to the fullest and try to enjoy it and the time you have with those you care about. Thank you for making the post. All your posts, really, are inspiring. I have to admit, though, I did hold my breath the entire time you were running up that icy hill!
Charis,
You have had the roughest luck with your entire IBD journey, and I can’t even express the degree of sadness I feel over the hard times you are going through. Knowing the incredible anxiety I experienced in my much less arduous journey, I can’t even imagine the level of fear you must be enduring after so many ups and downs. Your strength through it all… and the way you continue to support others during your toughest times… continues to be absolutely inspiring. I am also glad you are able to find some encouragement in my blog posts. Now grab those tissues (and a cat to hug) and get some more of those tears out! You have much to grieve, but I know that better times are right around the corner for you.
Oh yes- I most definitely have to get some Yak Trax for my shoes for running on ice! I was holding my breath the entire time too:)
-Heidi
Heidi, you have so caringly expressed to Charis my thoughts for her exactly. (excepting the Yak Trax . . . ) I need to tell you both what a blessing it is to be in regular contact, to see and hear you both on your much needed & healing blogs. My long time heavy depression, isolation, and inactivity have all improved due to both your words, stories, and shared experiences. I’ve been searching for people like you two for years, and finally here you are. You’ve both give me hope, inspiration, and the spiritual fuel to get out of bed, to want to live my life. So here’s to Heidi and Charis — a huge heartfelt THANK YOU!
Cary
Thanks Cary! Your comment means a lot to me.
BTW, do you remember which song or songs you were listening to as you ran up the hill? Just curious.
I don’t remember. I will go through my playlist in the next couple of days and see if it comes back to me.
Music adds so much to my runs and I really love it. I know it might not be the safest on trail runs when I am by myself as it drowns out the senses and might make me less aware of mountain lions or other dangers lurking around, but Doug and his Dad were along so I took advantage of the opportunity to run with some tunes.