Skin sleuthing

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

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.

Hanging out at the crag (feat. new video)

Lately, Ostomy Outdoors has turned into Ostomy Indoors. It feels like it has been so long since I have been outside doing even the smallest outdoor adventure and our video camera has been sitting on the shelf untouched for months. This has all been due to the hip pain that I have been writing about lately. My orthopedist gave me the go-ahead to work out again, yet I am still experiencing significant soreness in my groin and hip. A small uterine fibroid was ruled out as a possible cause, so my doctor wants me to go in for one more MRI just to make sure it isn’t a lower back issue. This has left me in limbo-land; I’m unsure if I should proceed full throttle with my trail running and other strenuous activities, or if I should hold back until I know more. I can work through some pain, but I don’t want to cause an injury.

Maybe as a result of some of this uncertainty, my spirits have hit rock bottom lately. I have been feeling super tired despite getting lots of sleep, and my normally positive attitude has been playing hide and seek with me. Yesterday afternoon, after bidding my brother-in-law and nieces farewell after a fun weekend visit, I spontaneously decided that Doug and I needed to go rock climbing that minute. It was gorgeous outside, and even though I had a daunting to-do list, every cell in my body was telling me I needed to get my body on the rock for some inspiration, or the gloomy emotions that I was experiencing would continue. Also, I was sure that my sore hips could handle the smooth, methodical movement of climbing.

Doug and I are fortunate in that we live in close proximity to some amazing climbing areas. We quickly tossed gear into our packs and within 30 minutes we were driving up Clear Creek Canyon to one of our favorite local spots. As I grabbed my climbing pack out of the car and headed down the trail, an incredible peace came over me. Gone were all thoughts of painful hips. Doug and I were going to be on the rock in a few minutes, and that was all that mattered.

It is hard to describe how much I love rock climbing and how vital it is to my life. Doug and I got into this sport together and have been been climbing since we first met in the college dorms in 1990. That year, we bought our first carabiners, rope, and a beater Toyota pickup to use on climbing trips. We have so many memories on the rock and have made many life decisions based on our shared love of this sport, including my desire to have a permanent ileostomy to treat my UC. To be out climbing with Doug again is joy in its absolute purest form.

However, as I climbed that afternoon and into the evening, there were moments of disappointment when things felt harder than they used to. I had to constantly remind myself to quit comparing my performance to the days of old. Things have changed, and though I may eventually return to my previous climbing abilities, it doesn’t really matter. The important thing is that I was back outside, covered in that wonderful mix of sunscreen, chalk dust, and dirt, and loving the amazing feeling of my body moving upwards over the rock. I ended up having so much fun that I completely forgot about the special solar viewing glasses sitting on my bookshelf at home all set for watching the 7 p.m. eclipse. We completely missed it! At first this disappointed me too, but I decided an afternoon in the canyon climbing and laughing with my sweetie was  so much more memorable and important. It was exactly what we both needed.


The inspiration that the spur-of-the-moment climbing excursion brought was also much needed. I hadn’t filmed a video for Ostomy Outdoors in a while, and hadn’t really planned on filming anything yesterday. Along with being in a mental funk, I was also in a creative one. Fortunately, climbing outdoors rekindled the desire to film, and I was glad we had brought the video camera along. At first, being filmed again felt as awkward as getting back on the rock after not climbing outside for months. When the camera rolled, I felt tentative and unsure of what I wanted to say. I wasn’t even sure when we left the canyon if the random footage we filmed could be woven into a coherent movie. I hadn’t really filmed any tips or tricks and wasn’t even sure it had a theme. Once I got home though and watched the clips, a story did begin to emerge. This day at the crags and this little film is about reconnecting with my passion, and discovering its ability to infuse my life with the hope and creativity needed to keep moving forward.

Good news: no more crutches!

For the past three days, I have been nervously awaiting my appointment with an orthopedic surgeon to find out about the injury I mentioned in my last blog post. I am so used to going to the doctor for digestive- and colon-related issues. It felt a bit unsettling to go in for something entirely new like a bone problem. And I was even more anxious because the pain had gotten a little worse over the past couple of days. It had been especially intense at night — even keeping me awake for several hours.

At the clinic, the orthopedic surgeon looked at my x-rays and examined the area of my injury. He thought the stress fracture was small enough that I could ditch the crutches (unless I was having pain) and just take it easy. He said soon I could try some light exercise such as swimming or maybe easy biking, and to listen to my body and stop something if it causes any discomfort. However, because I have been experiencing the worsening pain at night, he wants me to get an MRI in 7-10 days to rule out a few things that could be more serious.

I was so ecstatic as I walked out of the doctor’s office sans crutches. I have a huge appreciation for those who have dealt with them for long periods of time. Using crutches is incredibly tiring, and it was difficult to rely on others to constantly carry my stuff or bring me things. It is next to impossible to have anything in your hands with crutches. My coworkers joked that they were going to get me a cowbell to ring every time I needed help. Thanks goodness I won’t be needing that.

Bye bye crutches!

So I am relieved with the circumstances for now and will cross my fingers that nothing strange shows up on the MRI. I know I will still have to cancel some activities in the upcoming month or so as I heal up, but I am confident that the plans I made for later in the summer will stay intact even if I have to tone them down a notch.

For this weekend, sitting in the grass with my sketchbook still sounds just about right.

Let the races begin!

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.

Opening up about my ostomy

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

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

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.

Craving normalcy (feat. new video)

In the initial months after ileostomy surgery, all I craved was normalcy. Life as I knew it had completely disappeared. Gone were the days of getting up and going to the office to work on a variety of enjoyable challenges like writing nature-education curriculum and leading hikes. In my free time, there were no more hiking, snowboarding or running adventures anywhere on the horizon. Instead, life revolved around the wiggly red stoma on my belly. My days played out around endless worries and looked something like this:

7 a.m.  How am I going to get my appliance on while my stoma is spewing liquid output everywhere?

9:30 a.m. Okay… got the appliance on. Wait, is that skin showing between my barrier ring and stoma? Geez, maybe I should do it over. My output will certainly eat away my skin if it touches that exposed 1/8 inch. But will it destroy my skin more if I pull the wafer off so soon? I better just do it to be on the safe side.

10:30 a.m. I can’t believe it took me over two hours to get an appliance on and this second one still doesn’t look that great. I need to call Doug and vent about it or I will cry for hours.

10:45 a.m. I need to drink some water. I am already way behind on my liquids today and I haven’t eaten breakfast yet either.  I am really not hungry, but Dr. Brown said I need more protein. Is a protein shake and eggs enough?

11:30 a.m. I have only been up for a few hours and I am already tired. Better go take a nap. Am I always going to have to sleep this much?

1:30 p.m. Is that just a regular itch or is it from output touching my skin? Man, this incision hurts. I am not hungry, but I need to eat with my pain pills. I better have some lunch. When are these pain pills going to kick in? Drat, maybe I should have just sucked it up and not taken the pills. What if I become addicted to them?

2 p.m. Why am I watching this stupid TV show? Shouldn’t I be doing something productive? I am just too tired. Dang, I forgot to order those Hollister samples again. I am too tired to do that too. I can’t believe I am about to take another nap. I am supposed to be going for a walk right now, not sleeping.

3:30 p.m. The neighbors must be wondering what happened to me. I am walking so slow and hunched over, but it hurts too much to stand up straight. Is this two-block walk through the park really all I can muster? I can’t believe how much this hurts. This used to be my warm-up walk before I ran five miles, and now I can’t even cover this short distance. And I’m walking as slowly as a turtle.

4 p.m. I miss Doug. I am so lonely stuck here by myself. When is he coming home from work?

5 p.m. Doug is home! Doug is home! Doug is home!

6 p.m. Is this too late to be eating dinner? I am supposed to eat before now, but that isn’t very handy. Is four weeks post-op too soon to eat steamed broccoli if I chew it really, really well? I am so hungry for veggies. What if I get a blockage? Or horrible gas?

7 p.m. Wasn’t that just the 12th time I emptied my pouch for the day? When is this output going to slow down! It is like water. Have I had enough liquids to drink to offset that?

9 p.m. Okay, time to take a shower. Can I get this appliance wet? I better tape plastic wrap all over my belly just to make sure it stays dry and doesn’t peel off.

10 p.m. Time for bed. I should lie on my right side all night just in case I leak. Don’t want to get stool into my open wound.

11 p.m. My back hurts. I sure wish I could lie on my left side but I am too afraid.

12 a.m. Better get up to empty my appliance just in case.

2 a.m. Better get up to empty my appliance just in case.

4 a.m. Better get up to empty my appliance just in case.

7 a.m Thank goodness it is morning but I don’t want to get up. I am going to lie here and cry for a while. Will my life ever be normal again?

And so it went for the initial couple months after surgery. I was overwhelmed and depressed that my entire life now seemed to revolve around my stoma. I tried and tried to picture what things would be like when everything settled down, and I actually learned how to manage my ostomy, but it seemed impossible. I couldn’t see beyond the hard times I was facing in those moments. It was particularly difficult to imagine how I could possibly ever do outdoor sports like snowboarding again.

I wish I would have had a crystal ball back then. Had I, I would have seen that I shouldn’t have worried so much. My ostomy output would settle down as my body adapted. I would figure out my systems and become more efficient with them. My incision would heal. Someday in the not so distant future, my ostomy would feel like a regular part of my life as I returned to work and went on outdoor adventures again. In the crystal ball, I would have seen the point I am at now when everything is so much easier. The normalcy I craved after surgery has been restored to my life.

Last Sunday was a beautiful powder day in the mountains, and Doug and I headed up to go snowboarding. I decided to film the day’s events and create a video showing a typical day on the slopes with my ostomy. I realize everyone’s experiences are going to be a little different regarding their emptying schedule, when they eat, etc. What I hope to show is that once a person adapts to life with an ostomy and gets their own particular systems down, life can feel wonderfully natural again.

Heading to the gym

It wasn’t very long ago that I wrote I would be going out to run: rain or shine. The one weather element that I had forgotten about is the fierce wind that we often get here on the Front Range of Colorado in the winter. We have had some insanely windy days lately with gusts in the 60+ mph range. I can run in the cold and with all sorts of precipitation, but the wind is unbearable for me. It takes my breath away and blows sand in my eyes. After getting beat down by the wind on several runs, Doug and I decided it might be worthwhile to join a gym again so that we could work out on the bad weather days in more comfort.

Doug and I had joined gyms before and we always made good use of our memberships. They helped us stay motivated to work out. However, our memberships were always the first thing to get axed from the budget during financially hard times. Though money is tighter than ever with medical bills from last year’s health woes, I know that any dollars going into improving my post-op health and fitness are well spent and totally worth sacrifices in other areas.

Two weeks ago we toured a few gyms in our area and joined one that has a plethora of workout options. Running outdoors will always be my favorite after-work exercise activity. Beyond that though, I really like to mix it up. This gym has so much to offer that I have trouble deciding what I want to do on a given day. Yoga, aerobics classes, climbing on the wall, swimming and even ice skating on a huge rink are all options.

Swimming, climbing, yoga or ice skating... which should I do tonight?

The first thing I decided to do was the yoga class. I love yoga, but hadn’t practiced since my final UC flare and surgery. Even a year out, I still have a lot of post-op muscle tightness. I am hoping that doing yoga once a week will help restore some of my flexibility as well as get my posture back in line. I have taken two classes so far and it is going well. There are some poses that I find really difficult… especially anything with even a slight back bend.  And crazily I get twinges of belly pain when I lie flat in corpse pose which used to be my most comfortable pose ever. A friend suggested that perhaps it was due to scar tissue in my abdomen. I notice this mild pain when I lie flat on my back and do body scans for meditation too. I am hoping as I continue to stretch out through yoga, it resolves. Regardless of how my body is feeling on a given day, I practice yoga to the best of my ability and make modifications as needed.

I have also been swimming at the gym once a week. I usually start with a 10 minute soak in the hot tub and then swim laps for 30-40 minutes, ending with another 10 minute soak in the hot tub. I also always take a few trips down the indoor water slides to end my workout session. I have no issues with my wafers coming loose with swimming and still get my normal 3-4 day wear time.

I even tried a new aerobic class for me called Zumba. I have absolutely no dancing talent and it was really hard following the moves of the instructor, but I didn’t care. It was just fun to be dancing around to the upbeat music and pretending that I knew what I was doing. I think I am hooked.

In the next week or so I want to get on the weight machines, do some ice skating and try out the climbing wall. Doug and I usually head to a separate, much larger climbing gym every week or so, but it will be nice to use this smaller wall in between those visits.

One interesting thing about going to the gym is the subject of changing in the locker room. Usually I change at home or before I leave work and wear my workout clothes to the gym.  However, there are times when this isn’t convenient, or I need to change out of a wet swimsuit. Over the past two weeks, I have made great strides in being more comfortable with the possibility of others seeing my pouch. At first, I would change in the shower stall, but I hated it because it is damp in there and it was hard not to get my clothing wet. Recently, I have just been changing out in the open, but being discreet by facing the locker doors. Another technique that works is to change my top first and then pull it down to cover my ostomy pouch as I change my bottoms. Still, I have decided I don’t care if anyone catches a glimpse of my appliance. Maybe sometime down the road the person who saw it will end up knowing someone who is facing ostomy surgery. Perhaps they will think back and say hey, I saw a woman who had one of those at the gym and it seemed like she was confident with it.

A second item of note is that I signed up for a free personal training session. I had to fill out a medical form, and I was very open about my ostomy on it. I am still waiting for a call from the trainer and am curious to see how it will work out and if they will have ostomy-related questions or if they will have good suggestions for workout modifications at this point, especially with my abdominal muscles.

So overall, I am super excited about all the potential this gym has for my health and for taking things to the next level in my fitness goals.