Yesterday morning while perusing Facebook, I saw a post by Brian Greenberg, founder of the Intense Intestines Foundation, regarding the four-year anniversary of his ileostomy surgery on November 9th. I was thinking about how awesome it was that he had accomplished so much since his operation and how happy I was for him. Then I came to a sudden realization: if Brian was celebrating his stoma’s birthday, it meant that I had completely missed the anniversary of my own surgery. You see, when I first discovered Brian’s website a few years ago, I found out that it wasn’t only a love of the outdoors that we had in common: our surgery dates were only one day apart. When I was getting used to my first day as an ostomate, Brian was being wheeled into the operating room. I remember wishing I had known him then. We would have had much to talk about as we prepped for and recovered from surgery.
Now, four years later, I couldn’t believe I had actually forgotten about my stomaversary. It was a date I always ardently celebrated. My surgery had given me my life back and had allowed me to do all the things I loved again. To think I had let my stoma’s birthday pass by without notice made me feel sad and disappointed.
However, I soon started to look at my forgotten stomaversary differently. The reason I had my ostomy surgery was so that I could return to all the things I love and lead a normal life again. I wanted a life in which my family, friends, hobbies and career were at the forefront and health issues faded into the background. Yet in those initial weeks after surgery, my stoma dominated my world. More than anything, I just wanted to get to point where it felt like my ostomy was part of me and not something I had to think of at every moment. On November 8th, I gave my ostomy nary a thought. Perhaps forgetting about my stoma really was the best way to celebrate how far I have come in the past four years.
That said, I don’t intend to let the date slip by again. Wilbur, my stoma buddy, we will definitely celebrate your 5th birthday with a bit more fanfare next year!
I went for a hike with family and friends the day after my stomaversary. It would have been the perfect chance to celebrate, but I was completely oblivious to the important date. I guess I was too busy trying to figure out how far I could lean into 60 mile-per-hour winds without falling over to think of such matters.
Very occasionally, I take the opportunity to share someone else’s words on OstomyOutdoors.com when I think it will be of particular interest to you, my dear readers. Thank you for your ongoing support and please enjoy this article and photos from my guest author, Matilda.
–Heidi
International Travel with an Ostomy: Following the Druk Path By Matilda
I’m really an iPhone photographer; my husband is the one who takes great photos and happened upon the brochure for a two-week photographic tour to Bhutan. We are both in our mid 50s, and though we had little outdoor adventure experience in our earlier years, have now discovered trekking holidays, so we added a six-day supported hike to follow on from the small group photographic tour.
Once I had found Bhutan on the map (between Tibet and India) I remembered Bhutan is recognized for its worthy goal of “Gross National Happiness,” which measures quality of life in more complete terms than just the material GDP.
Having chosen a total proctocolectomy and permanent ileostomy for Crohn’s colitis just over a year ago, I was both excited and apprehensive about the trip. We had taken a couple of independent supported walks since the surgery, including the Cape to Cape walk in Western Australia with its stunning coastal views, but the isolation of Bhutan is both a major appeal for travel there while at the same time posing additional risks.
The first two weeks of the trip would be fine–hotels with en suites, a couple of day hikes to Tango and Flying Tiger monasteries, and some early morning starts to arrive at scenic spots such as the Dochu La Pass for dawn low-light photography. These early starts were so much easier for me than they would have been pre-ileostomy.
Dochu La Pass
When I chose surgery, I naively believed I could now make travel plans without worrying about a relapse or the timing of infusions interfering. I discovered that was overly optimistic thinking, as I needed a stoma revision six weeks before departure. When finally starting to train again for the trip, I sprained my ankle with associated aggravation of an old Achilles tendon injury. I iced and exercised it for two hours a day while my husband did some weekend training up and down nearby hills without me. Even when we left Australia for Bhutan, I wasn’t sure if I would be able to follow through with the trekking part of our plans and wondered if we would take a meditation retreat instead!
Any travel with an ostomy needs some planning. I had heard plastic bags were banned in Bhutan, which would make the practical aspect of disposing of soiled pouches potentially more complicated. This especially concerned me when a friend, who had only been transiting through Rwanda airport, had the plastic bags holding her toiletries confiscated. When trekking, I considered packing out my used pouches in a tube made of plumbing pipe as suggested in the book How to Shit in the Woods[1], and also ordered an odor-barrier zip lock bag[2]. Ultimately, I heard from our tour guide in Bhutan who advised that though plastic bags are banned, I could still use them (!) and they would be packed out with the other rubbish when we left camp. Biodegradable ostomy bags would be great, but so far are only available for those using a closed pouch.
Sadly, it turned out, plastic bags are far from being unavailable in Bhutan and though mostly a clean, welcoming and astonishingly picturesque country, plastic bags were to be found along the roadsides and in rivers. Though nights were bitterly cold for someone who lives in tropical Australia, the snow made our hike more aesthetically pleasing as it covered up the yak and mule excrement and rubbish some left behind at camp sites on this very popular route, the Druk Path, between Paro and Thimpu. Our team packed all our rubbish out with us, except food scraps, which were shared with the birds and stray dogs that followed us.
I experimented with some biodegradable baby wipes before departure, knowing I may not have ready access to clean water on trek, or on the minibus, especially if I needed to make unscheduled changes. It was important to know that my skin would not react to the wipes and adhesion of the flange be unaffected. I had also read a horror story about a trekker having difficulty with pouching at high altitude in cold conditions, so when weather conditions were cold, I carried a base plate underneath an inside layer of clothing day and night so that it would be flexible if I had to repouch. I discovered a couple of things, re-pouching sitting in the tent, rather than standing next the bathroom basin: the base plate fit my contours better when applied sitting down, and my skin was happier without soap.
Campsite at Jimilang Tsho, sparkling clear morning after a snowy, blowy night; we would have been warmer in smaller tents!
I am always impressed when I hear of people who can wear their appliance for 3-4 days, or even a week at a time. I have never managed more than two days, and since my stoma revision just before the trip, felt lucky to make a day and a half without a leak and un-scheduled change needed. This meant carrying a lot of ostomy equipment with me–double what I expected to need–was the advice[3]. I divided my gear into four uneven piles, spreading them between my husband’s and my own carry-on bags and checked luggage. I still hoped that as the stoma settled down post op, I would be able to extend the wear time, but after several leaks leading to showering and washing out clothes in the middle of the night, luckily while staying in a hotel, I decided it would be best to plan on a daily change. From then on, I only had one leak, the first day on trek, when fortunately conditions were warm and sunny and I was able to wash out my clothes in the Sea to Summit “kitchen sink” I carried with me.
Our “private” trek, for just the two of us, included the company of a guide, cook, assistant cook, mule driver, and six mules! It is compulsory for most visitors to travel with a guide in Bhutan, and our guide and his staff thought of everything; they even supplied hot water bottles at night! I didn’t have to worry about carrying a heavy pack as the mules carried food, cooking equipment, tents, and even our personal gear.
I found the hip belt of my daypack obstructed the outflow of my stoma, so I took Heidi’s suggestion of padding out the belt to take pressure off the site. I found my “kitchen sink,” using its attached belt loop with the bulk of the sink on the inside (body side) of the belt rather than the usual outside, very effective without adding extra weight or equipment. When the temperature dropped and I had to wear more layers, the padding was no longer necessary.
Water was boiled for our drinking bottles, and I advised the company in advance that I needed to drink more fluids than most people due to my stoma, in case this required they carry extra fuel supplies. I gave up on my hydration bladder due to the hygiene risk of the open mouthpiece, and swapped to water bottles with a lid over the mouthpiece instead.
Pack mule, near Phajoding Monastery
Here are some additional hints for traveling overseas with a stoma.
Travel Insurance:
Remember to declare pre-existing health conditions in your application. In the past, I was able to get Crohn’s disease coverage, by paying an excess fee.
Ironically, post op and off immunosuppressants, though I am much healthier, I now am unable to get cover for Crohn’s disease in the Americas, though I still can in Europe, Africa and Asia. Because I had a stoma revision operation planned, I didn’t seek insurance on this trip for Crohn’s disease (as I didn’t want the rejection on my record). Though there was a small chance of forfeiting the trip due to Crohn’s disease, the biggest risks were not related to my inflammatory bowel disease but to road trauma, altitude, accidents and infection, especially gastroenteritis.
Airports and security:
My stoma nurse suggested wearing a clear pouch (a post-op bag) for airport security. This seemed overly cautious but she told me of a woman asked to remove her pouch at a European airport to show what was underneath.
The only time I have been pulled aside was when the bag showed up on x-ray in the USA and I was simply asked to wipe my hands on my shirt, over the area. My hands were then tested for explosives, and I was waved through.
Remember, you can’t take sharps onboard, so make sure you pre-cut any flanges that you will carry on the plane (more than you think you will use, in case of problems on the plane or delays), and pack the scissors in your checked baggage.
Immunization:
See your medical practitioner in plenty of time, ideally three months before you go, to make sure you are fully immunized. This is important for everyone, but especially for those of us who are immunosuppressed due to medications (ideally we should have had the opportunity to update our immunization status before starting immunosuppressants, but there may be additional travel vaccines indicated). If you are immunosuppressed, you are unable to have live vaccines, such as Yellow Fever, and will need a certificate to enter some countries, explaining why you are not immunized. Though this documentation does not guarantee entry, there were no issues for me crossing from Argentina to Brazil a few years ago.
Medication:
Your doctor can also give hints on food and water safety and general travel health, and supply an emergency pack of antibiotics and rehydration solution if you do become ill. If you irrigate, remember it must be done with potable water. Ask the doctor to write a brief health summary and a list of your medications, stating they are for personal use. Keep the medications in their original packaging with labels attached. Like your stoma gear, you may want to divide medication between bags. Consider having your stoma nurse or doctor discuss how to handle obstruction before you go. I self-managed this issue a year ago (remember, I said I couldn’t get health insurance in the Americas!), using “Dr. Google” as a guide, but there is better internet access in Boston than on trek!
I use a “FRIO” bag for medications that need to be kept cool when there is no access to refrigeration. These work by evaporation and only need water to re-charge them.
Stoma gear:
Take twice as much as you would normally use and spread it out between your pieces of luggage. I also keep a little kit with everything I need for a pouch change within reach on the plane. I find I can’t drink carbonated drinks when flying as the extra gas plus the altitude blows up my bag. If I empty my pouch in the plane, I leave a little extra air in it, as descent seems to depressurize my bag. The exception is when landing at a higher altitude than you took off from, as I discovered landing at Paro airport, necessitating a quick trip to the loo[4] at the arrivals hall to empty my stoma bag of air!
Altitude:
The most important thing to avoid altitude sickness is to choose a trek that does not climb too high, too fast. A slow ascent (400 meters or 1,300 feet per day) and a rest day every three days is recommended to allow you to acclimatize.
Finally, don’t be put off by the idea of traveling with an ostomy. Though your trip may not be incident free regarding stoma issues, don’t miss the opportunity to discover other places and cultures; you will manage, and the change in routine may even help you learn something new about managing your stoma, your health and living life.
When I haven’t blogged in a while, it is hard to know where to start. I had a wonderful summer filled with a lot of fun activities and it would be impossible to cover all the happenings in a single post. Last summer I focused on the singular goal of climbing Rainier. This year I spent time doing a lot of different things including camping, rock climbing, hiking peaks, backpacking, bicycling, fly fishing, making art and visiting with family and friends. This was not the summer to get in shape or work on any specific fitness goals; it was a time to let myself bounce from paint brush to climbing hold on a whim and let go of some of the overwhelming feelings that I had been experiencing in the spring due to having too many things on my plate. I even fulfilled my dream of spending an afternoon sketching in my mother-in-law’s beautiful backyard flower garden with a glass of iced tea at my side. While I moved forward in feeling less stressed, my performance in a few sports definitely took a hit. One of those was running.
Nature journaling may not improve physical fitness, but it is definitely good for my mental health!
That was not a good thing with a September biathlon race on the schedule. Last winter, Doug and I started this sport and fell in love with it. Our last race was six months ago. In preparation for the upcoming season, we signed up for our local biathlon club’s late-summer event. This warm-weather race would be done by running or cycling rather than by skiing. I absolutely love biathlon and was excited to get out there with my running shoes and rifle. The course was only 5K, so I wasn’t too worried about my lack of training. Certainly I can run a few miles, I figured. It wasn’t like I had been a couch potato all summer. I had done a little bit of running and had still been active with climbing and hiking.
Unfortunately, I was in for a rude awakening on race day. The event was tougher than I anticipated and I huffed and puffed my way through the course. I couldn’t glide down the hills as I was used to doing on skis so it felt like my legs never got a break. Each lap of the race route ended with a small uphill into the range and I was so out of breath during the shooting bouts that I missed most of my targets. That meant a lot of extra penalty laps. Forget about trying to make a certain time–I decided mid-race that my goal would be to simply run the whole course without walking. I succeeded, but was completely wiped out by the time I reached the finish line.
Even though the race was tough, I still had an absolute blast. It rekindled my desire to train for biathlon. Maybe not at a super intense level (I still want to leave time in my schedule to work on art), but enough that I see some personal improvement.
Running into the range for my first shooting bout.
Here I am shooting in prone position. The ability to use both elbows for support makes it a little easier to hit the targets.I couldn’t hit any targets in the standing position. My labored breathing was making my rifle wobble slightly, making a huge difference at a distance of 50 meters.With no targets hit, it is off to the penalty loop for five laps once I put my rifle on the rack. Knowing my fate, I am not sure why I am smiling. Could it be because biathlon is so darn fun?
Another thing that made race day challenging is that I was experiencing watery and profuse ostomy output. I have no idea why—it just happens to me on random occasions. The hard part is that there is no restroom near the biathlon range and the hectic race-day schedule makes it tough to hike back to the lodge to use the facilities. When I am not racing, I am usually helping with scoring or other tasks. My ostomy hadn’t been a problem at other races because I can usually make it six hours between empties. With the higher output, I knew I would have to somehow deal with it out at the range. I thought about taking Imodium, but sometimes that medication makes me feel nauseated, and I didn’t want to feel sick during the race.
To solve the dilemma, I brought closed-end pouches for my two-piece appliance and OstoSolution Seals. When my pouch filled, I dashed off to a secluded spot in the nearby woods to swap it out. The OstoSolutions Ostomy Pouch Disposal Seals made it easy to pack out the full pouches. During the hour I was actually racing, my output slowed down and I didn’t have to worry about it out on the course.
Though it can be frustrating, I really do appreciate it when my stoma acts up and throws me an unexpected challenge. It teaches me to be resourceful and is a good reminder that even on those less-than-ideal days, I refuse to let my ostomy slow me down. Now if only that were the case with my lung and leg power! They are definitely holding me back. In the upcoming months I am going to be busily training for the winter biathlon season so that I won’t get so tired on all those penalty loops.
Today is the one-year anniversary of my Mt. Rainier climb. I can’t believe 12 months have gone by since I stood on the summit. When I returned from the climb, I blogged about the adventure. However, I had intended to write a couple more posts related to the trip. The weeks sped by and I never got around to it. What better time to revisit the topic than on this anniversary?
At the Ingraham Flats high camp the night before our summit attempt
As someone who has a big passion for spreading ostomy awareness, I viewed my trip to Rainier as a great opportunity to share information about ostomies with others and show that anything is possible with a stoma. In fact, as I walked into our pre-trip meeting at the guide service, I had all the things I wanted share with my teammates during introductions neatly figured out in my head. The problem was, things didn’t go as planned.
As we sat in a circle and got ready to meet each other, the lead guide threw out some questions to break the ice and get us started: Tell us who you are, a little bit about your climbing experience and something weird about yourself, she said.
Something weird about myself? That wasn’t the introductory question I had hoped for. Everything I planned to say about my ostomy didn’t fit at all with the concept of weirdness. If anything, I wanted to talk about how normal life with an ostomy was. I came up with another silly non-ostomy-related answer for the question and scrambled to think of another way to bring up my surgery.
As I shared a little bit about my climbing experience in my intro, I did mention that I had been severely ill with ulcerative colitis three years prior and had gone through major surgery to remove my colon. I talked about how much it meant to me to be healthy enough to climb Rainier. However, I didn’t mention any details about the surgery or the fact that I had a stoma or wore an ostomy appliance.
As I left the meeting, I felt disappointed in myself for being vague about my surgery type and not talking more openly about my ostomy. How could I have let such a good opportunity to spread awareness slip by?
That is when it hit me. I didn’t feel like talking about my ostomy in this situation– not because I was ashamed, but because I didn’t want it to define me on the climb. After all, my stoma was really such a small part of me in the bigger picture of my life.
As it turned out, I did succeed in spreading the word about ostomies on my trip–it just happened a little more quietly and gradually than I had originally planned. I ended up having many great one-on-one conversations about my ostomy with most of my teammates when the topic of surgery came up. These small chats with individuals did just as much to spread awareness as a bigger announcement would have. I have also formed lasting friendships with some of my Rainier co-climbers and they continue to learn more about my life with an ostomy as time goes on.
I was more comfortable talking with others one-on-one about my ostomy.
Most importantly, my ostomy made its way to its rightful place on my climbing adventure–in the background. It didn’t become too much of a focus, and my thoughts and energy were left to more important things like cheering on teammates, taking in the beauty of the landscape and feeling the strength of my body making its way up the mountain.
So worry not if you are shy when talking about your stoma. Ostomy awareness comes in many forms: from a grand campaign to a small heartfelt conversation with a friend.
Usually when Doug and I head out on vacation, it involves traveling into some remote wilderness or challenging ourselves on rock faces. However, this April, we embarked on a different type of adventure as we made a trip to New York City to visit my brothers. Instead of hiking to backcountry lakes and peaks, we walked to different neighborhoods. From Manahattan’s Greenwich Village to Brooklyn’s DUMBO, we enjoyed taking in the unique character of each place. We also strolled through many of the city’s green spaces including Central Park, Prospect Park and the Highline, and visited the Gugenheim, Museum of Modern Art and the Natural History Museum.
On top of the RockSketching in Central ParkExploring Brooklyn on Citibikes
Usually on our wilderness trips, I have questions about routefinding, which layers to wear and whether or not the cloud build-up might lead to a storm. However, on this vacation my queries were of a different sort– and some of them became relevant when dealing with my ostomy on the trip:
Do New Yorkers ever get tired of being in small, crowded places?
I marveled over how many people lived in the NYC area and how crowded things were. On the L-train that led to my brothers’ neighborhoods in Brooklyn, I often felt like a pickle in a jar–we were packed into the subway so tightly, yet more and more people would cram in at the next stop. If you lost your balance when the train came to a fast stop, it didn’t matter because there was no room to fall over.
I also couldn’t believe how tiny some of the restaurants we visited were and how we were often eating shoulder to shoulder with the party at the next table. The restrooms in these little establishments were also itty-bitty compared to the multi-stall bathrooms found in most Colorado restaurants.The square footage of the typical New York apartment is also on the small side making for tight quarters when we were staying with my brothers. I loved having ostomy deodorizer along on the trip so I didn’t have to worry about stinking up these small spaces when emptying or changing my appliance. A dozen drops of Hollister’s M9 drops in my pouch completely eliminated any odor. It is pretty darn cool being able to make your poo not stink on command– something that isn’t an option for those with colons!
How can New Yorkers eat dinner so late on a regular basis?
At home, I often run or go to the gym when I get home from work which sometimes has me eating at 8 p.m. It isn’t a problem for me and I don’t notice a difference in my overnight output schedule whether I eat early or late. Still, in NYC we pushed my eating schedule to the max and we sometimes at dinner as late as 9 or 1o p.m. I wondered at first if this would have me emptying all night. Fortunately it didn’t and most nights I was able to sleep tight until morning. Even if I would have had to get up, the inconvenience would have been totally worth the experience of visiting so many fun bars and dining on everything from tasty Thai food to hearty Italian fare, spicy Mexican dishes and New York pizza (gluten free of course!)
Fabiane’s Cafe in Brooklyn had the best gluten-free pastries!
Where do people with IBD find bathrooms in this town?
In the woods, it is easy to find a bathroom anywhere. If you duck behind a tree and dig a hole you are pretty much set to go. In the suburbs, you can often drive to a fast-food restaurant or gas station and easily use the facilities. In New York City, we were always traveling by foot or subway, and it wasn’t easy to find public bathrooms that weren’t reserved for customers. I drink a lot of water to prevent dehydration with my ostomy and I end up urinating a lot. There were many times I thought my bladder was about to burst when I managed to find a restroom in the nick of time. (Thank you, Trump Tower!) Though BM urgency isn’t as much of an issue with my ostomy because I have a lot of control over when I empty, the lack of public restrooms would be incredibly hard during an IBD flare.
Though thoughts about my ostomy did pop into my head a few times on the trip, the vast majority of the time it was at the back of my mind. I was left to focus on fully enjoying the big city adventure and trying to figure out another perplexing question: how the heck do women cover such long distances in the city in high heels! I have hiked miles and miles on wilderness trails, yet my feet and legs never get so tired as when I visit New York City. People there walk everywhere. Fast. And often in fashionable footwear that doesn’t look very comfortable. I have no idea how they do it. After five days of walking around the city visiting parks and museums, I could barely lift my legs.
My feet feel happy on our initial day of sightseeing in NYC as brothers and I walk across the Williamsburg Bridge. From there we walked to Chinatown, Little Italy and eventually Lower Manhattan. After five days of pounding concrete on such adventures, I can barely walk!Resting my feet on the rooftop after a long day of sightseeing
Doug and I had loads of fun visiting the Big Apple, but after six days there, we were ready to return to the wide open spaces and slower pace of Colorado. In the weeks ahead, we look forward to returning to many of our favorite summertime sports in the wilds.
Curled up on the couch last week, I felt more relaxed than I had in a very long time. I had just returned from having a post-work drink with Doug and his coworker, had grilled up some burgers for dinner and was now ready to watch a movie. That may not sound like a big deal, but my life had gotten so hectic lately that such a simple thing seemed like an enormous treat.
The movie I chose to watch on Netflix was called The River Why. I read the novel years ago and loved it. Though the film wasn’t great, I still enjoyed it. Watching the characters on the screen, I noticed something. They were never running home to check email and weren’t glued to social media. Instead, the characters were shown reading or fishing in their free time or spending time quietly talking to each other. You know the sort of scenes–the ones where friends are shown sitting on a hillside overlooking a breathtaking view or out in a flower-filled meadow just talking. Nolstalgic? I suppose–but I can actually remember a time in my life not so long ago when moments like that were a reality. Days when I came home from work and Doug and I would take a quiet walk or I would sketch, play guitar or read in the evenings. Moments when I would spontaneously stop by my friend’s house after work to pull weeds in her garden and chat about happenings. Times when I didn’t have to plan dinner dates months in advance.
I want my life to return to that pace.
Recently Doug and I got into an argument when talking about upcoming plans for my birthday. He wanted to do something special with me and I was completely stressed out with a huge to-do list. I asked if we couldn’t postpone the birthday festivities for a future month when my schedule wasn’t so hectic. My suggestion didn’t go over too well with Doug and it shouldn’t have. Seriously? My life felt so busy that I didn’t want to take a couple of hours to celebrate my own birthday? This was a wake-up call that something was out of balance. Where was the Heidi who used to be so laid back and spontaneous?
I want more of this in my life. Here I am celebrating my 38th birthday in the spring of 2010 with a camp-out. This year I could barely squeeze in a two-hour dinner.
After much reflection, I came to the conclusion that my transformation into a stressed-out and overwhelmed person occurred when I started Ostomy Outdoors. This wasn’t easy to admit to myself. Keeping this blog is one of the most rewarding things I have ever done. How could a project I love so much have such an adverse affect on my well-being?
I knew when I began blogging that writing posts, answering comments and making videos would would require a time commitment and I was excited to take this on. What I did not anticipate was all the side projects that would come with blogging. Things like being asked to write my story for other sites, providing feedback on IBD blogs, helping with research and all sorts of other requests. These were all such worthwhile things proposed by people and organizations that I greatly admired. Each one was an amazing opportunity to spread awareness and help others so I eagerly said yes to just about every proposal that came my way. It meant so much to me to be able to help so many people.
The problem is, the list of projects I could be involved with is endless. As soon as I wrap one thing up, another comes along. All these activities, even the small ones, require time to successfully carry out; yet time is a limited resource. The number of blog-related projects I have tried to take on is simply not sustainable for me; I am burnt-out, spread thin and exhausted. Also, these projects, combined with my regular blog posts tie me to the computer too much. I want to hear the sounds of birds on the trail, smell freshly baked goods in a cafe, or feel my head resting on my hubby’s shoulder–real tangible experiences that I can wrap my senses around. I don’t want to be fixed to a screen and keyboard living life through my computer. I need to give myself time and permission to step away from the online world sometimes.
I worked incredibly hard over the last couple of months to clear my plate of a huge backlog of projects that I had committed to, and I have no desire to go back for seconds. From now on, when I get asked to be involved in new blog-related ventures, I will be saying no. It isn’t that these projects and causes aren’t absolutely amazing and worthwhile to take part in. I simply must set boundaries for my role as a health activist in order to get my life back in balance. This feels selfish in a way, but it is absolutely necessary for my welfare.
To prepare for this transition, I have been reading a lot of articles about learning how tosay no. One of the main points in many of these pieces is that when you do say no to one opportunity, you are opening up the time to say yes to another. So by saying no to additional blog-related projects, what am I saying yes to?
quiet time with my hubby
visits with family
phone calls to Mom and Dad
after-work drinks
sketching excursions
running with friends
spontaneous weekend getaways
pitching my tent for a campout
moving over rock
taking aim at a biathlon target
tying and casting flies
hand-writing letters to loved ones
making waffles for breakfast
nature journaling, block printing, and watercolor painting
regular exercise and meditation
playing my guitar and drumming
reading books (I haven’t finished one in three years)
being less burnt-out so I can do a better job at the things I can do to help others
What do these new priorities mean for Ostomy Outdoors? Interestingly the aspects of my blog that I love the most are the ones that I have had the least amount of time to do lately: writing posts, making videos, and helping people who are facing or recovering from ostomy surgery one-on-one through comments and emails. I plan to put a strong focus on these activities. I also remain committed to some of my other related writing projects such as my column in the United Ostomy Associations of America’s The Phoenix magazine. However, I will not be taking on much else. By setting new boundaries I hope to re-immerse myself in the parts of my life that have nothing to do with health activism.
Hopefully soon, my eyes will once again grace the pages of a good novel, my hand will bounce off my djembe, my pen will skirt across paper and maybe, just maybe, I will find myself sitting in a gorgeous meadow immersed in a meaningful conversation with a friend.
Last Sunday I went for a hike. Not because I wanted to exercise or take in some scenery, but because I needed to say goodbye to a close friend who passed away from brain cancer late Saturday night. After battling the cancer for a little over a year, Jason ran out of treatment options and began hospice care in the end of February. His final decline happened so quickly over a matter of a week that my head and heart are still trying to comprehend the loss. I am utterly heartbroken.
When I learned of Jason’s death, I did the thing that felt natural to me… the thing that helps me deal with grief the most. I grabbed my hiking shoes, journal, watercolors and pens and headed for the hills. I wanted to be in a place that was strong with his memory, so I drove to a nearby park that Doug and I had visited with Jason and his family a few years ago.
On that trip we had all hiked to the top of a mesa, so I chose to retrace that route. When I got to the top, I sat on the edge and took my art and writing materials out of my backpack. Through tears, I dipped my paintbrush into my watercolors and captured onto the page that landscape that held such cherished memories. At that moment I knew that the mesa would forever be the place I go to when I want to remember Jason.
Then I took out my pen and wrote a goodbye to him in the pages of my journal. By that time, it had become extremely blustery on the mesa and I could hardly hold my book and pen steady. When I was finished, I read what I had written out loud. As the words left my mouth, I pictured the wind carrying them to our dear friend.
Jason– I hope they reached you and that you know how much you are loved and missed.
A couple of summers ago I climbed Devil’s Tower in Wyoming on a 98 degree day. As there was no place to empty up on the rock, I used closed-end pouches and carried the full ones out in my backpack. As I was rappelling the route upon completion of the climb, I noticed that I could smell ostomy output through my backpack. Oh no! My used ostomy pouches must be leaking out of the plastic bags I put them in, I thought. When I got to the base of the tower, I opened the lid of my pack with trepidation. However, all was well with my ostomy pouches. They were still nestled securely in three layers of plastic– the final one being an OPSAK odor-proof bag. The heat had simply made things very smelly and no amount of bagging seemed to help. If odor-proof bags couldn’t conceal the smell, I figured nothing could. I accepted that an odoriferous backpack would be my new reality on hot-weather outdoor adventures.
Fortunately, thanks to a new product called OstoSolutions Ostomy Pouch Disposal Seals, my backpack will be smelling a lot fresher. Last fall, a representative from the company contacted me to see if I would give the OstoSolution Seals a try and provide feedback. Though I don’t get paid to promote products, I enjoy trying samples out and letting readers know about supplies that may make managing their ostomy easier. After learning about the OstoSolutions Seals, I was excited to test them out because it seemed like there were many situations where they could be useful for outdoor adventures.
An OstoSolutions Ostomy Pouch Disposal Seal is a lid for the opening of a two-piece ostomy pouch. It snaps on and keeps any odor or output from coming out when a used pouch is thrown away. To insure a tight fit, Ostosolutions Seals are pouch-specific and are available for a wide variety of brands and sizes.
I have an ileostomy and empty my pouch four to eight times a day. Because of this, I usually use drainable pouches and keep one on for three to four days. If I were to use disposable closed-end pouches everyday, I would go through far too many and it would be expensive. However, when I am in places where it is difficult to empty a pouch, for instance on a cliff face or in deep snow, I do use closed-end pouches and pack them out when full. These are the times when I could see the OstoSolutions Seals being practical for me.
The first opportunity I had to try out the seals was while doing volunteer flood-relief work in my home state of Colorado. I was scheduled to help dig out a home in a heavily impacted area and knew there would be no restrooms nearby. I wasn’t comfortable digging a hole to empty and it was difficult to find privacy with 20 other volunteers working at the site. My only option for managing my ostomy waste was to use a closed-end pouch and pack it out. This provided the perfect opportunity to test out one of the OstoSolutions Seals.
After shoveling mud all morning and taking a lunch break, my pouch was finally getting full. I wandered a short distance from the house, ducked behind a tree, discreetly removed my pouch and popped on a fresh one. Then I snapped an OstoSolutions Ostomy Pouch Disposal Seal onto the coupling ring of the full pouch. It was as easy as putting a lid on a food container and completely secure. I did throw the full pouch in Ziplock out of habit, but I wouldn’t have had to. With the seal securely on the pouch, there was absolutely no chance of stool leaking out.
We moved countless buckets of mud as flood relief volunteers.With no restrooms or places to empty my pouch at the site, OstoSolutions Seals made dealing with my ostomy waste easy.OstoSolutions Seals easily snap on the pouch’s coupling ring for a leak- and odor-proof seal.
I worked for the remainder of the afternoon and used one more seal on a full pouch before finishing up for the day. My husband and I had carpooled to the site with two strangers in their Volkswagen Golf. As we made the hour-long trip back to Boulder, it was comforting to know that no odors would be wafting out of my pack and into the airspace of the small car.
The second test was on a November hike to the top of 14,440 ft. Mt. Elbert in Colorado. I knew it was going to be very cold and windy on the adventure and I hoped that using the OstoSolutions Seals would make swapping out my full pouches faster. I have Raynaud’s disease and when my fingers are exposed to cold temperatures, my circulation becomes impaired. Without blood, they turn waxy white and become prone to frostbite very quickly.
Just 500 feet below the summit, I realized my pouch was getting full. My hiking companions kept going while I dashed behind a boulder to swap out pouches. I quickly lowered my waistband, took off the full pouch and put on a fresh one. After that I snapped an Ostosolutions Seal on the used pouch and tossed it loosely into a stuff sack in my pack. After a quick dollop of hand sanitizer, my gloves were quickly back on my hands and I was catching up to my friends on the trail. Not having to take the time to close multiple Ziplock bags in the freezing wind saved my fingers. Using OstoSolutions will make swapping out pouches on cold-weather adventures so much easier!
With OstoSolutions Seals, there is no need to double-bag. I simply put the full, closed up pouch in a plastic-lined stuff sack.On top of 14,440 ft. Mt. Elbert– the highest peak in Colorado.
Though I didn’t get to test out the seals on a hot day like the one on my Devil’s Tower climb, I know that they would be a great tool in these types of conditions. When one disposes of a full pouch in a regular plastic bag, such as a Ziplock, the odors are not contained–especially on warm days. To remedy this I would put all my Ziplocks full of ostomy pouches on a given trip into one large reusable OPSAK brand odor-proof bag. This would work fairly well, but on hot days the OPSAKS never fully contained the odor. Also, the OPSAK bags are expensive, and they would wear out after a while and need to be replaced. With the OstoSolutions Seals, I do not have to worry about using odor-proof bags. Ostomy pouches are already made out of odor-proof materials. By covering the opening with an OstoSolutions Seal, no smells can escape.
On some adventures where it is easy to dig holes in the dirt to empty my pouch into, I use drainable pouches instead of packing out my waste in closed-end ones. However, I may still have to pack out used pouches when I change my whole appliance on multi-day backcountry trips. An OstoSolutions Seal could also be used to snap onto a used drainable pouch awaiting disposal.
The only disadvantage of the seals for me was knowing that I was adding another piece of plastic to the waste stream each time I used one. However, this impact was counteracted by having to toss away far fewer Ziplock bags. The OstoSolutions are also made out of some recycled plastic. I know having an ostomy does result in throwing away a lot of bags, wafers, packaging and other supplies that only have a one-time use. However, these things are necessary for my quality of life without a colon. I choose to focus on all the other important ways I can reduce, reuse and recycle. For instance, I make my own lunches and carry them in re-usable plastic containers, I don’t buy bottled water, I use cloth grocery bags and I recycle every possible thing I can.
Overall, I am very happy with the OstoSolutions Ostomy Pouch Disposal Seals and plan to carry them on my future adventures. With them, used pouch disposal can be fast, discreet and odor-proof.
It’s as harsh out here as on top of peak in a snowstorm. This thought pounded in my head as I cross-country skied down a slope in my second-ever biathlon. The wind was blowing against me so strongly that I had to use my poles to make downward progress. I was freezing in my minimal layers, and I felt eerily alone on the course with no one in sight and snow swirling all around me. The weather was declining rapidly, and I was relieved to be on my final of five laps.
In the distance I could see the biathlon range as I steadily made my way up a final incline. Snow was filling in the trail with drifts, and I felt like I could have walked faster than I was skiing. All that powder would have been much beloved if I were out snowboarding, but I didn’t much appreciate it in a Nordic race. As I got closer to the finish line, I could see the person recording times from a stopwatch. It seemed to take forever for me to reach him. But I finally made it! I finished the race and was super happy that I stuck with it and did not give up. I couldn’t remember doing anything that felt so physically strenuous– not even hiking up Mt. Rainier. Skate skiing is one of the most aerobically intense activities I have ever done.
Happily leaving the starting line before the worst of the storm blew in.I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets at 50 meters away!
We wrapped up the weekend with more fun. After completing the race, we stayed overnight at Snow Mountain Ranch/YMCA of the Rockies (the place where the biathlon was held) and even hit up the climbing wall in the pool. The next morning, we got up early and drove to Copper Mountain to go snowboarding.
A little post-race climbing at the pool.Powder day at Copper Mountain!
When the event results came in a day later, I discovered that I had the slowest pace of anyone who finished any of the various distances. It wasn’t a surprise. This is a new activity for me and I didn’t expect to be good at it right away. I had been working on my shooting a bit, but had put very little attention into becoming better at skate skiing. That changed last weekend when I took a beginner lesson and picked up countless tips that will help me improve. I also plan to begin working on my cardiovascular fitness again by running and going skate skiing as much as I can. I know it is going to take a lot of time and many little steps to get better at the sport.
That reminded me a lot of getting back into the fitness activities and sports I loved after ostomy surgery. Like training for biathlon, it wasn’t a quick process. One of the most common questions I get from blog readers is how long it took me to get back to “X” activity. Since a lot of information on that subject is buried in other posts, I thought I would create a summary of how long it took me to return to activities and what some of the challenges were. Keep in mind that I did have some significant complications with my abdominal incision healing due to a rare reaction to my particular suture material. This extended my healing time.
Snowboarding: I did this activity for the first time at around five months post-op, but because it was the end of the season, I was only able to get a few days in. I was surprised at how effortlessly the movement of boarding came back to me after losing so much strength after surgery. The most difficult part was getting back into a standing position after taking a tumble. Due to the crunch-like movement involved, it felt hard on my core. I wore (and still wear) a six-inch wide hernia prevention belt to help support my abdominal muscles. At first I was also careful to not venture onto icy terrain since falling onto my butt hurt the area where my anus had been removed. By the next season (about a year post-op), all that pain was gone and I was able to return to my pre-surgery level of boarding.
Getting on my feet during my first post-surgery snowboarding trip was tough on the abs!
Hiking and backpacking: I went on my first backpacking trip at around five months post-op as well. I checked with my surgeon to make sure carrying 25 pounds was okay and then headed into the backcountry at the first opportunity–which happened to be a very cold and snowy April weekend! Once again, I wore a six-inch wide hernia prevention belt and was mindful to keep the weight in my pack light. Doug carried many of my things and helped lift the pack onto my back. Once it was centered on my legs, it didn’t strain my abdominal muscles at all. The cold made this first trip with my ostomy difficult, but I was happy with the extra challenge. I knew if I made it through that, warm weather adventures would be easy.
After this trip, I kept hiking every weekend and slowly upped the distances traveled and amount of weight carried. I went on a few more overnight trips and began hiking 14,000-foot peaks. I remember walking like a turtle on the first one, but I just kept at it. By ten months post-op, I was able to go on an eight-night backpacking trip carrying 52 pounds. Through all these adventures, I was continuously experimenting with supplies and techniques for dealing with my ostomy outdoors and I tried to put myself in challenging situations to maximize my learning and face my fears. For instance, I could easily have changed an appliance before a wilderness trip, but instead I would purposely wait to do it in my tent in the backcountry just so I could get the practice and become confident with my ostomy in those situation.
A little snow couldn’t keep me out of the backcountry once my surgeon gave me the go-ahead to carry a pack again at 5 months post-op.
Running: I waited seven months after surgery to go running and I progressed really slowly. For whatever reason, this activity made me much more fatigued than hiking or backpacking. I also had pains in various areas of my abdominal wall (almost like a stitch or side-ache in the muscles surrounding my stoma) for almost a year after surgery. I never knew exactly what caused this, but it always felt okay again a day or two after running so I chalked it up to muscle fatigue. After all, I had been cut open from belly button to pubic bone. That is bound to affect the abdominal wall a bit! Eventually those muscle aches went away and now I am able to go on long runs with no discomfort. I also wear a six-inch wide hernia prevention during this activity to help support my abdominal wall.
Jumping for joy on my first trail run which happened a little over a year post-op.
Rock climbing: This is the activity I took the longest to return to. Climbing involves many twisting and stretching movements and a lot of physical exertion. My surgeon never said I had to wait a year to go, but that is what I decided to do in order to give myself plenty of time to heal. I knew my ostomy was permanent and I wanted to do everything in my power to reduce the possibility of a long-term injury like a parastomal or incisional hernia. I was willing to wait as long as it took for my body to tell me I was ready. In the meantime, I worked on hiking and backpacking so it never felt like I was sitting around waiting to climb. To get stronger while I was waiting, I worked with my physical therapist to strengthen my core with gentle and safe exercises. By eleven-months post-op, I finally felt that I was strong enough to rock climb. I started in the gym by ascending routes that were easy and low-angle. Then I started to do the same outside. Over the following year, I slowly bumped up the difficulty of routes I was attempting and ventured onto more vertical terrain. At 22 months post-op, I led my first easy sport route. Now that I am over three years out from surgery, I am climbing in the gym on a weekly basis, doing overhanging routes and am back to scaling rock walls at my pre-surgery level. The only thing that I have yet to do is return to leading traditional routes where I place my own gear. Just like with every other strenuous activity, I always wear a six-inch hernia prevention belt.
Leading a climb at Shelf Road in Colorado this fall. I was back to leading sport climbing routes 22 months after surgery.
Yoga: Like rock climbing, I waited a year to do yoga. I know I could have gone earlier, but I was busy working on the core exercises with my physical therapist and decided to wait to try yoga until my incision area felt solid. Interestingly, I found corpse pose to be one of my most uncomfortable poses. Lying on my back made my incision area ache like crazy. I think this was the result of horrible posture during the first four months after surgery when my incision was extremely painful. During that time, I was protective of the area, and I found myself walking in a hunched-over position. It took a while to reverse that and make my muscles to feel okay with being lengthened again. Nowadays, corpse pose feels fine and the only thing I still have trouble with are bridge positions. My body tells me to go easy on those and so I do! I wear a hernia belt while doing yoga too, but switch to a four-inch model as it is easier to bend with that width.
Bicycling: This sport was gentle on my body and would have been perfect after surgery save for one thing: my butt hurt from having my rectum and anus removed. And this pain was not quick to go away. It took almost a year for the deep muscles in that area to feel like normal again. Fortunately, once I hit six months-post op, my pain had at least diminished enough that I could sit on the seat without too much discomfort. Now I can spend hours on the saddle with no issues.
I took my first bike ride six months post-op when Doug and I pedaled a short distance to see a baseball game. It did hurt my healing butt, but was tolerable.
As I get into my new sport of biathlon, I realize that it is going to take a lot of hard work and patience to get better. I know someday when I am skiing a bit more efficiently and faster, those early times when I struggled up the hills or felt like taking a nap in the snowdrift will seem like a distant memory. It was that way with my ostomy. Getting back to my pre-surgery activity level took perseverance. My progress sometimes seemed dauntingly slow. However, as I moved towards that goal, I celebrated each small victory. Before I knew it I was back on my favorite slopes, trails and rock faces and my life was richer for all the tiny but amazing steps that got me there.
“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
-Ernest Hemingway
Me and my wound vac returning from our first trail hike after surgery. This was four months after my operation and I traveled a whopping 1/8 mile. After having major incision healing complications, this was a huge milestone for me and I went home and celebrated with my first post-op beer.
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.
Ostomy Outdoors 