Tag: ileostomy

No Slowing Down for My Ostomy

Published on by ostomyoutdoors15 Comments

Here are some clues that my schedule has become crazy busy lately:

  • This morning I tried to brush my teeth and put my socks on at the same time. It didn’t go well.
  • Dust bunnies are currently breeding out of control in all corners of my home. I am very glad they are peaceable creatures.
  • The two minutes it took for my oatmeal to cook one morning this week sounded like the perfect time to squeeze in some blogging.
  • I’ve seriously thought about putting on my running shoes while doing errands and chores to see if I can cut my time or get a personal best. I can fold a basket of laundry and put it away in five minutes. I am going for three.
  • I ate spaghetti with sauce from a jar for dinner three times this week.

It is hard not to over-schedule when I am feeling well. Everything sounds fun, and before I know it, I have filled my days with so many activities that I barely have time to sleep. I am still having hip pain, but it has lessened some. My orthopedist can’t find any cause other than a slightly deep hip socket joint that may be causing my bones to rub a bit. Regardless, he thinks it is something I will just have to live with. I can do that. My physical therapist is also working with me on hip alignment issues that could also be part of the problem. The good thing is that both of these individuals think it is fine to run and hike. Despite things hurting a little bit, I am thrilled to be out moving again and I am taking full advantage of every opportunity that presents itself. Doug and I have already gone on two three-day backpacking trips this month, and our summer is only getting started. Breed away dust bunnies… I am going to be ignoring you for a while.

Doug and I on top of Mt. Massive on our second backpacking trip of the season.

I remember wondering if I would ever be able have crazy hectic marathon-like days with an ostomy. Would I be able to manage it in a tight schedule? What about having enough time to empty? Could I eat at any hour of the day? This week was my busiest since surgery, and I am happy to report that insanely full days are completely possible with an ostomy.

On Saturday, I got up at 5 a.m. to go to City Park in Denver to run the Undy 5000. This is a run sponsored by the Colon Cancer Alliance. Proceeds from the race go to pay for colon cancer screenings for the underserved. We have been in the middle of a record heat wave in Colorado, and the high temperature for race day was 103 degrees. I tanked up on water, said hi to some of the people from my local ostomy association who were volunteering at the event, and headed for the start line. The heat was oppressive and I got nauseated during the run despite staying well hydrated. It was definitely not the day to push it, so I enjoyed a more leisurely pace and finished the run in roughly 31 minutes. Even with the heat, my ostomy appliance stuck fine. I indulged in some post-race treats and beverages, perused the booths and then headed home to take a shower and get on to the next activity of the day: a 9+ hour work day.

Showing off my undies in front of the inflatable colon at the Colon Cancer Alliance’s annual Denver Undy 5000.
Sporting my ostomy t-shirt from thegreatbowelmovement.org at the start line for the run.
Everyone gets in the spirit of the Undy 5000 by running in their underwear or other fun bum-related costumes.

Soon I was up in the foothills leading a Jr. Ranger event at one of the parks in the Open Space System where I work as a naturalist. I spent the next 4 hours in 90-degree heat running through a meadow helping youngsters catch insects and teaching about the amazing diversity of bug life in the park. After a quick sandwich-dinner and a practice music session with my coworkers, I told stories and played my guitar as part of an evening sing-a-long and storytelling program for the campers. When we finally packed everything up to head back to the trailhead, it was almost 10 p.m. I had gone full blast from roughly 5 a.m. until 10 p.m. and my ostomy did not slow me down one bit. The only thing that was challenging was staying hydrated, but I had brought a huge personal water container along to the park since there was no potable water there. I drank over 8 liters of water that day.

The next morning Doug and I were up early to head to a friend’s going away pool party. We swam for several hours in the morning and then had a delicious BBQ in the afternoon with burgers, brats and corn on the cob. (I am fortunate in that my ostomy tolerates possible problem foods well when I eat them in conservative amounts, chew a lot and drink plenty of water.) Later that evening we headed back to the pool. I had never been in the water for such a large percentage of a day since having surgery, but my wafer did just fine—even with numerous trips down the water slide and many cannonball jumps.

Doing laps on the water slide at my friend’s pool party.

The crazy week continued. Monday included a doctor’s appointment and an evening dinner with Doug’s parents. Tuesday was filled with work and then my local ostomy association meeting in the evening. I collapsed in bed at 11 p.m. only to get up at 4:30 a.m. for our local Bike to Work Day. It was another scorcher, but the temps weren’t too bad so early in the morning. I rode my bike 7 miles from my house into Golden, and then continued for another 6.5 miles up into the foothills to the park where I work. That part of the ride included 1,900 feet of elevation gain. That evening, I rode back home, ate dinner and went right to bed.

Arriving at my destination after 1,900’ feet of elevation gain during our local Bike to Work Day. My amazing coworkers left encouraging messages for me along my route.

As I type this, I am on the plane traveling to visit my parents for several days in Washington state. This wasn’t the aircraft Doug and I were scheduled to be on (and we certainly weren’t supposed to be in the first class section where we now sit). Our plane left Denver an hour late and we missed our connection to Seattle which also meant we missed the last flight to the small town of Walla Walla where Mom and Dad live. Suddenly life became a bit spontaneous as we had to completely rearrange our plans. The airline put us in first class for our next flight, gave us meal vouchers and are covering our lodging in Seattle until we can catch another flight to eastern Washington in the morning.

Through all these unexpected twists, I hardly even thought of my ostomy. My main curiosity was how my very first trip through airport security since surgery would be. I was fully expecting to have to say something about my ostomy to the TSA personnel. However, I didn’t mention it and went through the metal detector uneventfully like everyone else. I did get asked to run my baggage through the scanner again, but only because I failed to realize that I was supposed to remove my laptop from my luggage. Security didn’t even ask me about the scissors in my ostomy changing kit in my carry-on (which are allowed according to TSA because the blade is under 4 inches long). We shall see if Seattle airport security goes as smoothly with my ostomy.

Blogging while enjoying the surprise first-class seat assignment on the plane.

As soon as I get back home, I have four evenings after work to unpack from this trip and get my things ready for the next adventure: The Crohn’s and Colitis Foundation of America’s Camp Oasis where I will be volunteering for a week as a camp counselor for children ages 7-13.

Through all these activities, my ostomy has faded into the background. I change my appliance twice a week, empty when I need to, eat when it fits in (many times as late as 9 p.m.), and drink a lot of water in the heat. Other than that, I can honestly say I don’t think about it a whole lot and it is not an inconvenience in my life. The longer I have my ostomy, the more I realize how normal everything feels with it– even during the busiest of times and when dealing with last minute changes in plans.

As great as it has been doing so many fun things this month, I know I can’t keep this pace up indefinitely. The dust bunnies will start to haunt me, a personal best at the time it takes to clean the shower will suddenly not sound so cool, and I will want to pull a cookbook off the shelf and actually make something decent for dinner. I am craving lawn chair time with an iced tea and good book instead of a huge “to do” list of things to pack for the next race, bike ride or outdoor trip. My ostomy hasn’t slowed me down one bit, but I think it is time to put the brakes on myself. Well… after the climbing trip we just scheduled for the end of the month that is.

Skin sleuthing

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No more itchy-scratchy. I recently healed a rash under my wafer that had been plaguing me for about four months. In the process, I discovered that figuring out the cause and solution to ostomy skin problems can take some serious detective work. Solving my stubborn case involved some help from my stoma nurse, medication, a wacky new wafer method, and a touch of inspiration from a childhood memory.

I grew up with two brothers, and sometimes we would get into spats. When these unfortunate events happened, I could handle hair pulling, pinching, being kicked and even getting spit at. However, there was one method of sibling warfare that I absolutely dreaded: the snake bite. This involved having my forearm gripped with two hands while the skin was twisted in opposite directions at the same time until a painful sting ensued. A well-executed snake bite would leave my arm red and throbbing.

On several occasions since getting my ostomy surgery, I was certain that my wafers were giving me snake bites.

When I was healing up from surgery and researching ostomy appliances and sports, I read that some people have trouble with their wafers sticking in warm weather due to sweating. As I got back into outdoor activities, I fully expected that this would be the main wafer issue I would have to deal with when doing active sports. However, this ended up not being the case at all; my wafers adhered well through any activity. Instead, I was faced with an entirely different problem related to my ostomy appliance and strenuous sports.

When I was hanging out at home in the months after surgery, I had absolutely no issues with my wafers causing any skin issues. However, once I healed up I started biking and hiking, it seemed like my wafer would get pulled in one direction as I moved, while the skin underneath wanted to move in another. The Coloplast wafers I wore for the initial months after surgery were made out of a fairly non-pliable plastic, and would leave a circle of painful blisters on my skin right around the outer edge of  the wafer from this tension. I decided to experiment with a different brand.

I tried Hollister and then Convatec and found that the Convatec ones seemed to move the best with my body contours and movements. I had no further skin issues with my wafers for the first 10 months when I was mainly hiking, snowboarding and biking. Then in January, I started to do activities with more extreme movements, like yoga and climbing, on a weekly basis. All of a sudden, my wafers felt like they were giving me snake bites again–especially near my hip bone.

I have a narrow body, but my stoma measures 1.5 inches at its widest spot. This forces me to use larger sized wafers. When I put a wafer on, it extends past my midline incision scar on one side, and over my hip bone on the other. As I would do high steps while climbing, and twists and bends in yoga, my wafer would pull at my skin at the top of my belly and also near my hip bone. At first I tried protecting my skin with various brands of skin prep, but none made any difference. I tried to stand up while putting on my wafers and made sure I wasn’t pulling the tape part too tight while placing it on my skin. Neither of these things helped. As I was experimenting, I soon realized I had a bigger problem: a very itchy rash began to develop under the tape in the location where my skin had been pulled. Over a matter of weeks, the rash spread to other areas under the hip-bone-side of my wafer.

It was time to seek some help from my stoma nurse. After hearing about my symptoms, she felt it could be a yeast infection and recommended anti-fungal powder. I tried this for three weeks with no improvement.

In the meantime, I started to wonder if perhaps I had developed an allergic reaction to the tape part of my wafers. I really hoped this wasn’t the case. I didn’t want to have to change my ostomy system. I loved the way my wafers stuck so well through sports and swimming, and all my hernia belts and pouch covers were designed to work with my system. I thought an allergy was unlikely though, since there was no rash under the entire left-hand side of the wafer. If I had an allergy to the tape, I assumed it would show up under the entire tape part. Just to rule it out though,  I decided to try Convatec’s tapeless wafers for a couple of weeks. My skin did not clear up and continued to get worse.

It was around this time that I recalled another memory. Several years ago, long before my ostomy surgery, I had a nasty, itchy rash that started on my knee and soon spread to my arms and legs. I went to a dermatologist and was diagnosed with bacterial folliculitis. The doctor felt that I had probably nicked my leg shaving and had some hair follicles get infected which eventually spread to follicles on other areas of my body. It took a while, but it finally cleared up with antibiotics.

The rash I was dealing with under my wafer looked exactly like that rash. To top it off, I now had a little area of rash on my stomach far away from my wafer. My stoma nurse recommended that I talk to my doctor to get a prescription for antibiotics. My doctor agreed that it looked like folliculitis, and I began to take Keflex. Within a week of starting the antibiotics, the rash that I had been dealing with for several months completely disappeared. Finally the mystery had been solved! I deduced that the pulling of my skin under the tape had damaged it and allowed a bacterial infection to set in. Without the Keflex, I am positive my rash would not have gone away.

The problem was, I soon felt the familiar sting of my skin being pulled under the tape when I would bend. I knew I had to change the way I was doing things, or my skin would be damaged again and the whole cycle would start over.

To attempt to solve the problem, I tried something a bit unusual. I continued to use my regular Convatec wafers, but cut off all the tape on the right half. The inner circle of Durahesive material seemed to stick just fine without the tape part, but I reinforced it with little strips of 3M Medipore tape in a few strategic spots for added confidence. My skin has always liked Medipore tape, and it is very stretchy so the strips did not place tension on my skin. When I was done, my new tape and wafer method looked a bit like the sun with rays of tape sticking out.  I nicknamed it the “sunburst method.” I have now been using this method for two months and it has been working great. My skin is super happy with no more tape snake-bites and no more rash! It has held on perfectly through rock climbing, running a 10k, swimming, and even a recent three-day backpacking trip in warm weather.

This photo shows my new “sunburst method” for attaching my wafer. I trim the manufacturer’s tape away on the hip bone side of my wafer and replace it with strips of 3M Medipore tape. You can see the shine mark where my hip bone is. This new taping system completely avoids this area and my skin is no longer irritated under tape when I climb, do yoga or take part in other sports with a lot of stretching and bending movements.
Two months after starting this new taping method and my skin is still healed and happy. Unfortunately, I never took a photo of the rash. Picture hundreds of tiny red raised bumps under where the wafer tape would have been on the left side and you will get the idea.

From eating to product selection to skin care–when you first get an ostomy, everyone tells you that your situation is going to be unique and that you will have to experiment to figure out what works for you. I am only now beginning to realize how unbelievably true this. I wouldn’t be surprised if my sunburst-wafer method was a disaster for someone else even though it worked for me. The point is, make sure to try different things. Don’t settle for supplies and methods that aren’t working well for your individual needs. Keep sleuthing and find the solutions that make living with your one-of-a-kind body and ostomy comfortable.

When I was a kid I didn’t like snake bites, but I did like Nancy Drew books. Nancy would just finish solving some tough case when a new and interesting one would come her way. I have felt a bit like her lately. Now that I have solved the mystery of the itchy rash, what case is next? Last weekend while changing my appliance on the backpacking trip I just mentioned, I noticed a 1/4″ white ulcer-like depression on the side of my stoma about 1/2″ from its base. It looks just like a canker sore. My surgeon and stoma nurse both think it is trauma related, so I am experimenting with cutting my wafer differently to see if it helps. Hmmm–s0 far I haven’t noticed much of a change, but maybe if I try…..

Let the sleuthing fun begin!

Trading disappointment for delight at the Bolder Boulder 10K

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Disappointment is one of the emotions I have the hardest time dealing with. As I was standing at the start line of the Bolder Boulder 10K on Monday waiting for the gun to go off, I wasn’t sure how to prepare my mind for the letdown I was sure to have at the finish line. I knew before I even began to put one foot in front of the next that I had no chance of matching or beating my results from the last time I did this race in 2009. I hadn’t run for at least a month and had just found out from my physical therapist a few days before that I had some major pelvis misalignment issues that were likely causing some of my pain and injury. Though he didn’t say I shouldn’t do the race, he did say I should take it easy and stop to do some exercises and stretches along the route. I had no idea what a taking it easy pace would even be. Did that mean I should jog? Walk? I had never done a race where I wasn’t running as fast as I possibly could.

Making my way to the Bolder Boulder starting area at 6:30 a.m.

I was still pondering these questions when the shot fired. I took off at a pace between a jog and a run, but still the questions lingered. What time would I be satisfied with? An hour? Two? Though I don’t have a competitive streak when comparing my performance with others, I am fiercely competitive with myself. Ever since recovering from ostomy surgery, I had wanted to prove that I could do as well in this race as I had before getting so sick.  I knew that was impossible with my current painful hip, but there had to be some sort of goal, right?

As I ran down the street and watched the people in my wave pass me one by one, I realized that this race wasn’t going to be about reaching any pace goals. It was about simply being there. After all, just weeks ago Doug had picked up my race package for me. At the time, I couldn’t even make myself open it. I didn’t want to see the running bib that I was sure I wouldn’t be wearing due to what was thought to be a stress fracture in my pelvis. Yet luck had veered my way.  The x-ray had been a misread and I had been given the go-ahead to run while undergoing further tests for other pain causes. Here I was immersed in the event that I had wanted to do so much, and all I could focus on were things I had no control over. I couldn’t make my injury go away, and I couldn’t magically make up for a month of lost training time. I could, however, adjust my outlook.  As I ran under the banner marking mile two, I flicked an attitude switch in my head from the side that read  I am so bummed that I am not going to get the time I hoped for to the one that said I am so amazed to be running through the streets of Boulder surrounded by beautiful views, music on the street corners and onlookers handing out treats to the runners like bacon, cotton candy, and marshmallows.

I much preferred the second attitude and decided to keep the switch there for the remainder of the race. (I did, however, avoid catching any marshmallows. I had already had my fill of those the day before after consuming six of them to slow output before my appliance change.) At every mile marker, I stopped to do the exercises the physical therapist had recommended I do during the race. I knew that these stops were sabotaging my time, but I no longer cared. When my hips started to hurt slightly at mile four, I slowed down the pace. I had no worries. No expectations. In the past, I would never have veered off course to become a target for child with a Super Soaker. Never before had I taken advantage of the offers for high fives from sideline spectators. I don’t remember looking at the stunning vistas of the Flatiron rock formations along the race route in previous race years. At the slower pace, I took all this in.

Every other time I ran the Bolder Boulder, I finished in just under an hour. This time, when I looked at my watch at 59 minutes, I still had a little over a half mile to go. Just for old times’ sake and knowing that I was close to the end of the race, I picked up the pace and ran as fast as I could for that last half mile. I felt strong and vibrant as I entered the stadium and sprinted the final half lap to the finish line. Other than amidst the marshmallow-catching antics earlier in the route, this was the first time I thought of my ostomy during the entire race. I thought of  all the things I had gone through since last entering that stadium in 2009, and how lucky I was to be back to health and running there again.

As I crossed the finish line, the letdown and disappointment that I was sure would greet me there had been replaced by delight. And when I finally looked down at my watch to see my time, 1:06:33, I was even more blown away. That was only about eight minutes longer than my 2009 time. This was certainly enough to please my self-competitive side — well, for the most part. In the stands after the race, there was a moment when I lamented to Doug that had I not been injured, I would have really nailed it. He reminded me that I was injured and that I did nail it. Oops, that little attitude switch had gotten bumped into the wrong place again. I put it back to the “here and now” slot, slathered myself with some sunscreen and sat back to watch others racers jubilantly cross the finish line — including a banana, gorilla, coyote, bear ,and unicorn. Hmm… maybe my goal for next year should be to run the Bolder Boulder in costume.

Resting in the stadium with Doug after the race.

Drawing my way out of the doldrums

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My first mainly sedentary week has been hard mentally. I wish so much that I could go for a hike or run, but just walking around the grocery store makes my hip throb with pain, so that is not going to be a reality any time soon. I went swimming at the gym and did an upper-body weight workout. Both of those activities went okay, but it feels like all the amazing  progress I made working out with my personal trainer is going to slip away.

When sadness and anxiety start to take over and I can’t deal with the stress using exercise, I often turn to my nature journal to lift my spirits. Somewhere in those moments when I am looking closely at the pattern of veins in a leaf, and my pen is moving over paper recording what I see, my mind finds peace. Expect to see many drawings in the weeks ahead!

 

Turning 40

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I couldn’t stop smiling as I sat in the stands at Coors Field. I was attending a Colorado Rockies game for my 40th birthday, and the evening had been amazing so far. Planning to ride our bikes to the stadium (to avoid traffic and the parking fee), Doug and I had parked our car about a mile away.  Just as we were about to unload our bikes from the roof rack, a massive storm blew in and we watched lighting streak across the Denver skyline as hail pummeled our car. Once the storm ended, we jumped on our bikes and cruised downtown, breathing in the wonderful spring smell of rain-soaked ground and blossoming trees.

We arrived at the stadium an hour early, so we stopped to enjoy drinks at the Irish pub next door. I was halfway done with my Strongbow Cider when the waitress surprised me with a free birthday shot. I have no idea what was in the fruity purple concoction, but she assured me it didn’t have gluten in it, so down the hatch it went. This was a little more than I would normally drink on a mostly empty stomach with my ostomy, but hey, it was my birthday. Time to throw caution to the wind. My stomach wasn’t empty for long. As soon as we walked over to the stadium, I indulged in one of my favorite treats. I hardly ever eat hamburgers due to having celiac disease (and the fact that they are not that healthy), but Coors Field has a special gluten-free concession stand. Soon I was in my seat, huge burger in hand and eagerly anticipating the game.

Nature even provided some pre-game entertainment for my birthday. Perched on the balcony railing above me, a male house finch was singing his heart out. Over and over he belted out his melodious tune, and I kept thinking that there had to be a female baseball-fan-of-a-finch listening somewhere in the stands. I hope he finds her. There are certainly many great places to tuck a nest in the stadium and then the pair can watch every home game as they raise the next generation of Rockies-loving finches.

If this amazing start to my birthday evening wasn’t great enough, things got even better. The Rockies were clobbering the opposing team in one of the best games I had the pleasure of watching. In between watching unbelievable plays, my mind cycled through memories of being at the stadium so many times before.

It was on a previous visit to Coors Field that my final UC flare first made itself known. I am sure many IBDers know the feeling of thinking they have finally found the magic bullet of probiotics, diet and medication to keep their illness in control, only to have their body fail them yet again. It was during a night similar to this one that I was having fun watching the Rockies when one such disappointing moment came. I got up to use the restroom during the 7th inning stretch and noticed a tiny speck of blood from my intestines on the toilet paper. My heart sank. I left the bathroom and tried to focus on the rest of the game, but all I could think about was the fact that my four-month remission was over and my UC was back. At the time, I had no idea that those initial specks of blood would turn into the massive flare that would cost me my colon. When I look back at my photos from that evening, I see a woman who is blissfully unaware of the major life change that is about to happen. If you would have told me that night that I would have an ostomy a few months later, I would have said you were out of your mind.

Sitting in the stadium on my 40th birthday, I realized that I still had no idea what was around the corner. But if there is one thing I have learned in my 39th year, it is that this uncertainty is okay. Tomorrow would be on its way soon enough, but right now I was enjoying watching the players slide into bases and hearing Doug yell GO TODD at the top of his lungs every time Todd Helton was up to bat. Right now I was having fun singing Take Me out to the Ball Game and seeing the people around me laughing and goofing around with their friends and family. Right now I was smiling as I blew out the candle in my birthday cupcake and made my wish for the year. Right now I was happy that my ostomy had allowed me all these moments.

For me, turning 40 wasn’t something to be sad about. It wasn’t about all the things that I hadn’t done or about goals not yet achieved. Turning 40 was about celebrating all the things I had done. It was about lightning and skyscrapers, house finches on balconies, bike rides through puddles, baseball players getting out of pickles and every other great memory I have from that day and all of those before.

Let the races begin!

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Last Sunday I went with Doug and his dad to run the Journey Quest 5k in Fort Collins, a fundraiser for the Shared Journeys Brain Injury Foundation (SJBIF). The organization provides programs that help people with acquired brain injuries regain independent, satisfying and productive lives. This was my first 5k race since my ostomy surgery 16 months ago. The overall time I achieved in this run would determine my wave for the 10k Bolder Boulder, which I plan to run on Memorial Day.

Getting ready for the run.

I started running again last summer, but have mainly been working on endurance by going on longer runs. Since I have not been focusing on speed, I wasn’t sure what to expect my finishing time to be for this race. I have never been a very fast runner. My speed has been in the nine-minute mile range in just about every 5k or 10k I have done. Therefore, when I set my goal for this run, I simply hoped to at least match my time from the last 5K I did prior to surgery, which I completed in 29:43.

I felt fairly strong and crossed the one-mile mark in nine minutes and then the two-mile mark at 18 minutes. Despite the decent start, I really struggled in the final mile. There were a few times I had to tell myself that I needed to ease up because my lungs and heart felt like they could barely keep up with what I was trying to make my legs do– I simply could not breathe. I relaxed the pace a bit, crossed the finish line and realized that I actually shaved a handful of seconds off my last 5k with a time of 29:19. I was happy with the result, but could not believe how hard the race felt. I have never been so utterly exhausted during or after a 5k. Doug and his dad met me at the finish line after running great races too (Doug came in second in his age group, 40 to 49), and I couldn’t even talk from lack of breath. Doug’s mom caught us each on camera as we ran the race.

Doug heads out from the starting line.
Doug cheers on his dad as he prepares to cross the finish line.
I am exhausted but still smiling as I finish the race.

This race made me realize that if I want to get faster times, I must change my training strategy. I really like going out for long, slow runs, especially on the trails, but I need to mix things up and start including some speedier runs in the mix if I am going to match my pre-surgery time for the Bolder Boulder 10k. I have always finished that race in just under an hour, but based on how I felt on this run, that would be impossible right now. Time to put some more miles on the running shoes.

I am also glad to report that my ostomy caused no issues during the race. The event started at 10 a.m., so I ate my normal breakfast of a protein shake, a banana and a bowl of oatmeal at 6 a.m. I emptied my pouch before heading to the start line and was good to go for the entire time. There was a party following the race and I refueled on some chili and a few cups of popcorn. Yes, I said popcorn! I find I have no issues with this favorite treat of mine if I chew it well and drink plenty of water (24 ounces in this case.)

Speaking of water, I have never been a fan of the hydration stations at races where one stops to slam a small cup of water. Even before surgery, I always got a gassy bellyache from gulping the water down… that is if I didn’t choke on it first because I was breathing so hard. Most of the time I would just drink a little and toss the half-full cup onto the ground or skip some of the water stations altogether. With my ostomy, I am even more conscious of avoiding things that cause me gas pains. Not to mention that I need to drink a lot more water during activity to prevent dehydration. I usually carry a CamelBak hydration backpack on my runs, and decided this would be a good strategy for the race as well. I filled it with just the amount of water that I would need for the race so that the pack was light. This worked well because I could sip small amounts of water through the hose as I ran to stay well hydrated and didn’t get a bunch of air in my stomach.

One less-than-ideal thing I had to deal with during the race was trying a different wafer than my favorite one. Typically, I reserve sampling new supplies for times when I know I don’t have something big going on in my schedule. However, I have recently had some skin issues under the tape of my wafer: little red bumps that are insanely itchy. My stoma nurse is working with me to try to troubleshoot the cause, but in the meantime, I decided to try a sample of a tape-less wafer to give my skin a break. The 5k was on day four of wearing this new wafer. I was worried the sweat might make it fall off during the race, yet I didn’t want to risk irritating my skin by removing it early. By the morning of the race, my wafer was already starting to peel up on the edges. However, with a few little pieces of 3M Medipore tape in strategic places, the wafer held on just fine. Whew!

All in all, the race went well, and I am excited to push my running to the next level. I look forward to adding a few more races to my schedule in the coming months. And I still have my sights on the CCFA Team Challenge Half Marathon in December. I am hoping the shorter races will help prepare me for that big distance. Most of all, it feels great to discover another favorite activity that is once again possible thanks to my ostomy surgery.

Heading to camp

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

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

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

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

Opening up about my ostomy

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Last weekend I took a course to recertify my Wilderness First Responder credential with the Wilderness Medicine Institute. The first order of business in the course was to do short introductions with the other class participants. My heart pounded as my turn to introduce myself to 25 absolute strangers fast approached. I had planned to say something about my ostomy to the group, but I was having second thoughts. Maybe I should just stick to a standard intro and move on to the next person? After all, we only had to say four basic things: our name, where we were from, what we would be doing outside at that moment had we not been in class, and what our previous pertinent medical experience was. None of these things really had to do with my ostomy, right? Why did I feel this huge need to let everyone know?

It would not be my standard practice to announce my ostomy if I was taking a class on computer programs or art techniques. However, wilderness medicine courses involve a lot of mock wilderness medicine scenarios where we role-play rescuer and patient. As course participants practice patient assessments on each other, abdomens are palpated and shirts get peeked under to see if there are any clues to injuries. It is not unusual to have fake bruises or wounds put on our bellies and other body parts with stage make-up to make things more realistic. I knew it would be impossible to hide my ostomy. I wanted to have everyone know about it right away so there were no awkward surprises. And I didn’t want to explain it individually to each team I worked with — I only wanted to have to mention it once.

Recovering from a fake head injury after a wilderness medicine scenario.

As my turn to introduce myself crept closer and closer, and my palms became sweatier and sweatier, I had a decision to make. It would have been so easy to give into my fears and not say a thing about my ostomy — but that is not what I did. Instead, I took a deep breath and spoke:

Hi, I am Heidi. I am from Golden, Colorado. If I wasn’t in class today, I would choose to be rock climbing with Doug, who is my husband. (I motioned toward Doug who was sitting beside me as a classmate.) I have been a Wilderness First Responder since 1998. I have also had a lot of medical experience in dealing with one of my own health issues. Eighteen months ago I became severely ill with a disease called ulcerative colitis and had my entire colon removed. I now have an ostomy where my small intestine sticks out of my belly and I wear a pouch over it. If you see this over the next couple of days, it is not part of a scenario (I smiled and chuckled).

I looked around the room to see if anyone was looking at me in a strange way, but they weren’t. The instructor nodded and smiled at me like he did with each person, and the introductions continued without the loud sound of a record-scratch. As the heat in my flushed face dissipated, a huge sense of relief washed over me. Now I could relax and enjoy the course, knowing that everyone would know what the pouch on my belly was for, should they see it.

Sure, I probably could have worn a wrap. But it is likely that people would have been just as curious about that. Anyway, as much as I like ostomy undergarments, nothing is quite as comfy for me as my regular low-rise undies with my pouch flopped over the top. I knew I was going to be sitting in class for two days and wanted to be comfortable.

My pouch is easily visible when my shirt is lifted, but it ended up being no big deal during the course.

As the class unfolded over the next two days, I was happy to discover that people didn’t treat me any differently because of my ostomy. When we ran through head-to-toe exams and practiced “log rolling” to check each other’s spines in the wilderness medicine scenarios, there were times that my shirt rode up and everyone could see my pouch. Yet not one person acted awkwardly towards me and no one tip-toed around me when it came time to touch my belly or move me around. I had a great class, refreshed all my skills, passed my exams, and was successfully recertified.

My mock broken radius is all splinted up.

Looking back, I am so glad I decided to share the information about my ostomy with the group in those initial moments of class. Being open about it not only helped me feel more relaxed about people seeing my pouch, but it allowed the other course participants to be more comfortable with it as well. More and more, I am discovering that this is true in so many aspects of my life with an ostomy.

Climbing progress

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

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

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

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

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

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

Cartwheeling, tumbling and cratering myself to confidence

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

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

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

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

Getting up from one of my many falls.

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

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