Back in the wilds!

Heart pounding, quads burning and lungs barely able to keep up — I could not believe I was standing at 13,000 feet again. Yet there I was! Doug and I spent the weekend in Breckenridge with his parents. Our rental was a mere two miles from the Quandary Peak trailhead, so yesterday we decided to head up the trail to see how far we could get.

Doug and I take a break along the Quandary Peak trail.
Doug and I take a break along the Quandary Peak trail.

I had no intentions of making the summit, and just wanted to be out in the mountains moving my body again. With the sudden onset of groin pain in mid-January and an MRI in February that showed gluteal tendinosis in my hip, I had been doing lots of physical therapy and taking a break from hiking. In fact, I was starting to think that my Rainier attempt in July might not happen. I tried to keep my fitness up with biking and swimming (doggie paddling really… I cannot do any overhead swimming strokes because it hurts my shoulder avascular necrosis (AVN) too much). However, those activities hardly replicated the intensity of climbing big peaks with heavy gear at altitude.

Fortunately, last week I got some good news at a much-anticipated appointment with a new orthopedic surgeon. After looking at my MRI, he didn’t see anything in my hip except for the gluteal tendinosis. However, he does not think that the tendinosis is causing the groin pain I have been experiencing because that type of injury typically causes outer hip soreness. This makes sense as the physical therapy I have been doing for the last two months has really helped some of the pain in the outside of my hip, but did little for the groin. The bottom line is that the doctor did not know what was causing the soreness in that part of  my hip; the joint looks healthy. He said sometimes they really can’t find anything and oftentimes these issues resolve on their own with time. He thought it was fine to start training for Rainier again as long as the pain didn’t worsen.

I also talked to him a lot about my shoulder AVN. Though I really liked working with the doctor that diagnosed the condition back in December, this particular orthopedic surgeon has more experience working with patients who have AVN. After looking at my MRI, he felt the AVN in my shoulder may not cause me any further issues. He said the necrotic area is small and that most of the cases he has dealt with have involved a much larger percentage of the humeral head. As a result, it is quite possible that I won’t ever need a joint replacement. Of course, he did say the exact progression is impossible to predict. The doctor said I was really, really lucky that I have not developed AVN in my hip. He has never had a patient that had it in the shoulder that did not also have it in the hip. (Could I be this lucky?!) Though he said it is always possible to develop AVN in another joint at any time down the line, the more time that passes after taking steroids, the better the chance is that this won’t happen. He mentioned that there are a lot of factors at play with steroid-induced AVN that doctors don’t understand. For instance, the window of time for developing AVN after stopping steroids appears to be a lot longer for some people and with some diseases than others.

It was a huge relief leaving the doctor’s office knowing that I had just been given the okay to get back to all my activities. And with my shoulder also feeling so much better, I happily started planning all my new adventures.

Unfortunately, my body wasn’t quite ready to cooperate. The morning after my appointment, I was bending over to pick something up off the floor and I felt a pull in my Achilles tendon. I was so disappointed. I had waited so long for that appointment with the new orthopedist and now I had developed an entirely new issue less than 24 hours later! This is so typical for me. There were many times when I was recovering from ostomy surgery when I would tell my surgeon everything was great at an appointment and then have something go wrong the following day.

Luckily, I had an appointment with my physical therapist that evening so I could at least discuss my latest joint woe with someone. He felt I had probably just strained the Achilles tendon a bit and gave me some stretches and strengthening exercises. Because my pain was minor, he thought I could still train as long as the movement of hiking didn’t irritate the tendon. Obviously if the issue starts to become more painful I will head back to the orthopedic doctor.

So, I wasn’t sure what to expect on the adventure yesterday. Much to my surprise, I felt great and ended up hiking around 5 miles round trip with a couple thousand feet elevation gain, making it to the 13,000′ shoulder of Quandary Peak. My Achilles did not hurt and my hip felt okay. A few times along the way I just stopped and listened to the beautiful sounds of being on a remote mountainside again. I could hear the wind in the tree branches and the snow crystals hitting my jacket and it felt amazing to be out there. I actually pinched myself a couple of times to make sure it wasn’t a dream. The feeling of happiness felt so similar to those first wilderness hikes after my ostomy surgery when I realized that I would still be able to do an activity I loved so much.

Returning from a post-lunch ostomy pouch swap. With the deep snow, I use closed-end pouches instead of drainables and then pack out the full one.
Returning from a post-lunch ostomy pouch swap. With the deep snow, I use closed-end pouches instead of drainables and then packed out the full ones.
Nope. I am not dreaming and pinch myself just to make sure!
Nope. I was not dreaming and I pinched myself just to make sure!
We reached a high point of 13,000' on the shoulder of Quandary Peak. The summit can be seen in the distance.
We reached a high point of 13,000′ on the shoulder of Quandary Peak just as another snow squall came in. The summit can be seen in the distance.

I look forward to the many mountain trips on the horizon as I start to train for Rainier again. If If I end up not summiting the big peak due to all the recent training hiccups, I will be okay with that. If the fun I had today is any indication, just being on that massive and beautiful mountain is going to be a breathtaking experience in and of itself.

Relaxing in the hot tub after our hike with a perfect view of the peak.
Relaxing in the hot tub after our hike with a perfect view of the peak.
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Reaching out (feat. new video)

Last Tuesday evening, I left work in a gorgeous swirl of falling snow but promptly got stuck in standstill traffic due to slippery road conditions. I half-thought of exiting the freeway and heading home, but the destination was too important and I knew that getting there would soon melt away any stress that had accumulated on the drive. In fact, it was almost guaranteed that I would leave the event in a good mood. I always do. So where was I heading that had me filled with such eager anticipation?

The fourth Tuesday of every month is my Ostomy Association of Metro Denver meeting. I started going to these meetings as soon as I was healed enough after surgery to get to them and quickly discovered how valuable they were. When you have a condition that is hard to talk about with most people, there is a feeling of instant comfort that comes from being surrounded by others who immediately understand what you are going through. A place where it is okay to talk about normally taboo subjects such as gas, rectums and bowel movements. Now that I have been attending the meetings for almost two years, I cannot imagine not having this support system in my life. I absolutely love talking to those who are facing or recovering from surgery and doing what I can to offer encouragement. I head home from every gathering wishing I had more time to talk to everyone and eager for next month’s meeting to arrive.

One thing that I hear many young people on IBD and ostomy internet forums say is how they often walk into such meetings and feel that they are the only one in their age group there. Many times these people don’t come back for this reason, and I think it is really unfortunate. Regardless of age, everyone can relate to the overwhelming emotions that come with ostomy surgery. Though different for each person, we all have stories of difficult times, fears we are facing, successes we are celebrating and hopes and dreams for our lives beyond illness. Coming together to share our experiences and thoughts on these things can offer profound opportunities for healing. I love the conversations I have at the meetings and learn something from every single person there whether they are 25 or 70 years old.

And guess what? If you wish that there were more people at the meetings your age– stick around. The next time someone else your age is nervously walking down the hall towards the meeting room and peeks in, they will see you there and feel less apprehensive. If that person chooses to also come back next time, it has a ripple effect and soon the group becomes more diverse. Make the meetings be what you want them to be by participating and returning for the next one.

If you don’t have access to a local support group to meet people in person, there are many groups to join on the internet. I wrote a post a while back about the importance of reaching out to others online. One of my biggest twists of luck when I was in the hospital and facing the possibility ostomy surgery was that my room had a good internet connection. Whenever my favorite nurse would see me typing away on my computer at an intense pace, she would always remind of how fortunate I was to be in that room because many of the others on the floor had poor Wi-Fi signals. I don’t know what I would have done without my computer. It became a lifeline from my isolated hospital room and allowed me to meet others who had gone through surgery and gone on to lead active lives.

Because of my own experience in reaching out for help when I was sick, it is a huge priority of mine to try to answer every single comment and email I receive on this site. Sometimes it takes me a little while due to a busy schedule, but you will hear from me if you write. Last fall, an email appeared in my box from another local adventurous ostomate: Lewis Benedict. That initial contact led to other opportunities to meet up including a recent hike of Twin Sisters Peaks in Rocky Mountain National Park. Lewis is now working on his own ostomy awareness website, ostomatevillage.com, and was even on cover of The Phoenix magazine this quarter! I am so proud of his accomplishments and look forward to many future adventures with Lewis and his wife, Tara.

On top of Twin Sisters Peak in Rocky Mountain National Park with Lewis and Tara of Ostmate Village. Check out the video below for more on the adventure!
Our group (including Lewis and Tara of Ostomatevillage.com) poses atop one of the Twin Sisters Peaks in Rocky Mountain National Park. Check out the video below for more on the adventure!

I am thankful everyday that I have met so many amazing people through my ostomy association meetings, OstomyOutdoors.com, and other websites and social media. You all inspire me to no end and help keep me motivated when my own life presents challenges.

I am going to end this post with a video of the hike with Lewis mentioned above. I hope it provides some inspiration to get out there and meet other people with ostomies. If you are feeling alone while facing or recovering from surgery, or if you just want to meet other people who have been through similar things, know that there is a strong ostomy community out there. You just have to reach out.

Dealing with the anxiety of a new condition

Happy holidays everyone! I hope that you are having a joyous season and are looking forward to the New Year.

After a rough week, some holiday fun is exactly what I needed. I had several days off from work, and got out to do some active things to get my mind off my recent avascular necrosis (AVN) diagnosis. On Saturday, I did a Rainier training hike up Bear Peak in Boulder, CO, with Doug and his Dad. The hike gained over 2,000 feet of elevation in roughly 3 miles and provided a great workout. I found that my pack did not bug my shoulder as long as I tightened the hip belt enough so that the weight was carried mostly on my hips (thank goodness for a great stoma placement that sits below my pack’s waist-belt).  I usually use two hiking poles, but skipped using the left-hand one so that shoulder wouldn’t have to work too hard.

Hiking with one poll while resting my left shoulder.
Hiking with one pole while resting my left shoulder.
Goofing around and testing out my shoulders on the summit of Bear Peak.
Goofing around and testing out my shoulders on the summit of Bear Peak (8,461 feet).

The next day I went to the gym for some Zumba (minus most of the arm motions) and then did a leg workout on the weight machines. On Christmas Eve Doug and I spent a little time up in Boulder where we enjoyed lunch at an Italian restaurant. When we got home, I baked gluten-free cookies in various fun shapes including trout, dinosaurs, and Christmas trees. Next day, on Christmas, we met Doug’s parents at Loveland Ski Area, and I also called my parents in Washington to wish them happy holidays from the lodge. It was a bluebird day on the slopes, and the fresh overnight snowfall made for some awesome boarding. I was concerned that pushing myself up into a standing position on my board after falling or sitting would hurt my shoulder, but it felt okay. My body is a little sore today, but that is to be expected as it was my first day of snowboarding this season.

Enjoying Christmas at the lodge with hot cocoa and cookies.
Celebrating Christmas at the lodge with hot cocoa and one of my homemade cookies.
The sun sets as Doug and I get some final runs in.
Enjoying the mountain light after a long day on the slopes.

When I was recovering from ostomy surgery and was dealing with grief and anxiety, I found that keeping busy and getting out to do things with my family and friends helped me feel better. I am finding the same thing is true as I deal with the uncertainty of a new condition.

That said, I have also found that the anxiety levels that have come with my diagnosis of avascular necrosis have felt 100 times worse than what I experienced with ulcerative colitits and my ostomy. I think this is due to several things. First, other than anti-inflammatory meds for pain and physical therapy to help maintain range of motion, there aren’t really any treatments to pursue at this time to halt the progress of my specific case of AVN. From my previous life experiences, when I had an injury or illness, there were always steps to be taken to try to heal the condition and help things improve. It feels very new and foreign to me to have a condition that likely won’t heal and is degenerative.

The stats also aren’t as promising with AVN as they were with my ostomy. Before my ileostomy surgery, I had heard that over 90% of people who had the operation for UC were happy with the results. (I certainly am!) Though there hasn’t been much research on steroid-induced shoulder AVN, I did find a few prognosis statistics in online medical textbooks and journals:

  • 55% of those with humeral-head AVN from steroids get it in both shoulders
  • 76% of those with shoulder AVN also get it in the hips (and 2/3 of that 76% get it bilaterally)
  • 90% of those with AVN in the shoulder due to steroids eventually have it show up in another joint

Third, I am having trouble finding hopeful tales out there of people who have had steroid-induced AVN and went on to lead athletic lives. If you have had AVN related to prednisone and went on to climb, snowboard, backpack, etc., or know someone who has, please email me! When I was getting ready for my ostomy surgery, though there were horror stories out there, I was able to find at least some websites related to the athletic things people were still able to do without their colons. I am trying to find such inspiration for AVN.

Recently, I realized that I needed to get some help to deal with my heightened level of anxiety that came with the recent diagnosis. I couldn’t concentrate on anything, and I was a tearful, scared mess. After my fourth sleepless night in a row, I tried to lift a glass and found I was shaking so badly from anxiety that the water was practically sloshing out over the sides. I sat the glass down, and immediately emailed my primary care doctor. I must have reached her at a good time, because within two minutes my phone rang. We talked for about 20 minutes about the current turn of events and the anxiety. She made me feel so much better and told me that I had dealt with UC and my ostomy so well, but that this was likely just one thing too many for my mind to deal with. After our conversation, I decided to give some medication a try. She also recommended combining the drugs with counseling and meditation, so I have an appointment with a counselor in January and am taking a refresher course for mindfulness meditation in a couple of weeks.

I have always been very thankful that anti-depressant and anxiety medications are available. I know many people who have been helped with these drugs. However, this was my first experience taking them and, just like with my ostomy surgery, I found myself wrestling with stigmas. In my circles especially, where my friends and I are into holistic treatments and solving things through diet and exercise, I really had to fight to not judge myself for needing to take this medication and for being unable to solve my problems in a more natural way. But I also knew I was miserable and that the path to wellness isn’t always so simple. It is important to use all tools available. I am hoping that counseling, medication, meditation, exercise, physical therapy and the support of my family and friends will form the perfect combination to get me through this.

With that said, I promise that I will get back to writing about more things ostomy soon. Before finding out about the AVN, I was working on a post about some great ostomy wraps. Stay tuned for that and my continued Rainier-training adventures.

Lessons from a winter hiking trip

Sometimes after a busy summer season of packing and unpacking for an outdoor trip practically every weekend, I need a break. October and November were quiet months. I did some trail running, but didn’t go on any major adventures. The rest from the hectic pace felt wonderful and much needed.

Another reason I have been taking it easy is that I developed some unusual pain in my left shoulder in mid-October. My shoulder did great on my two-week climbing trip, but a couple of weeks after returning, the joint started to throb and hurt constantly. Ever since I was a teen, I have had off-and-on trouble with tendonitis in that joint and had even been working with my physical therapist over the summer to get my shoulder stronger and resolve these issues. Things had been going splendidly with the therapy, and before my climbing trip, my physical therapist thought I might even be close to not needing another appointment.

Unfortunately, that is not how things worked out. The new shoulder pain is different than what I had come to expect with my occasional bouts of tendonitis. Because of this, both my PT and doctor thought it would be a good idea to get an MRI. The test results showed tendinosis (a chronic form of  tendonitis) and also bone-marrow swelling in the head of my humerus. What this means exactly I do not know. My primary care doctor has referred me to orthopedist, but my appointment isn’t for another week. Of course, my mind once again wants to run to all the scary what-ifs of the situation. What if the marrow swelling isn’t from the tendinosis and is instead  being caused by… (fill in the blank with numerous frightening conditions here). What if I can never rock climb again? Ahhhhhh……

However, if there is one thing UC and having an ileostomy has taught me, it is that dealing with uncertainty is part of life. Instead of letting myself fall into my usual pattern of worry, I am going to try to forget about my shoulder until my appointment next week and focus on the activities I can do. One of these is hiking. Even with a backpack, hiking doesn’t seem to bother my shoulder at all. And on the plus side–hiking is the most important activity I need to be doing right now to train for Rainier.

So on Sunday, I set out with Doug and his dad to hike up a peak. Our original plan was to hike James Peak (elevation 13,294′). However, just before exiting the freeway for that destination, we had an idea. Let’s do a 14er instead! The road leading to Grays Peak (elevation 14,270′) was just a few exits up the road. Colorado is experiencing a very dry winter, and with the trailhead access snow-free and avalanche danger minimal, it was the perfect chance to get to the top of this peak.

The high temperature for the elevation we were at was in the mid-30-degree range, but with 30 mph winds, it felt much colder. I had packed 28 pounds of gear, including lots of warm clothes, food and three liters of water (Doug also carried an extra liter for me). I was surprised at how great I felt hiking at such high elevations with this weight. I had been expecting it to feel much harder after not hiking any big peaks since July. We made it to the summit in late afternoon and enjoyed the gorgeous views, including those of close-by Torreys Peak, another 14er. Though we had earlier thought about trying to do both peaks, we realized that the late departure from the trailhead on this spontaneous trip would not afford us enough daylight to get in double summits.

Descending Grays Peak with Torreys Peak in the distance. So close but oh so far.
Descending Grays Peak with Torreys Peak in the distance. So close but yet so far.

My ostomy caused no issues on the hike. I had to swap out closed-end pouches (I prefer these to drainables on peak climbing days) twice during the excursion. At one point on the ascent, I realized that my pouch was getting fairly full. I was behind a ridge that offered some protection from the wind and there was also a tall cairn to duck next to. Doug and his dad were a little ways back on the trail and there was another party about 500 feet behind them. There was no one coming the other direction, so I decided to seize the opportunity to swap out my pouch right there on the side of the trail. I grabbed a small trash bag and fresh pouch out of my pack, ducked behind the cairn, pulled the waistband of my softshell pants down and quickly swapped out pouches. By the time Doug and his dad caught up, I had the used pouch and my other supplies packed up and was ready to keep hiking. I know that on Rainier, I am not going to have much privacy when roped up with teammates on a glacier. It is reassuring to know that I can swap out pouches so quickly and discreetly.

Ducking behind this cairn to swap out my closed-end pouch right along the trail was easy and discreet.
When no one was close by, I ducked behind this cairn to swap out my closed-end pouch right along the trail on the ascent. I also swapped out a pouch on the decent. For that one, I just walked off the trail about 50 feet and turned my back so that no one could see what I was doing. I continue to discover that using closed-end pouches on these types of hikes is a very easy and discreet way of managing an ostomy.

The big challenge for me on this particular hike was the cold and wind. It was even more frigid than during our winter hike up Grizzly Peak last December, captured here on video.

Fortunately, in preparation for Rainier, I had purchased several new clothing items. This was a perfect chance to test them out. One new addition to my outdoor clothing quiver is a super warm down jacket with a hood. I have lighter jackets, but only this one is warm enough for extremely cold conditions. As I stuffed the two pounds of down luxury into my pack before the hike, I really thought it was going to be overkill. However, as  I threw this jacket on at breaks and at the summit, I soon realized it was a lifesaver.

Despite taking part in countless winter camping and backpacking trips, ice climbs and peak ascents over the years (including several since my ostomy surgery), I have never been as cold on a trip as I was on this particular hike. I am not sure why this was the case as I was dressed well and eating and drinking plenty. Regardless, some combination of wind, cold, shade, and my body on that given day had me freezing. On the summit I was so chilled that I could hardly grip anything. I had to use my teeth to zip up my jacket. As I descended back to the car, I kept having the urge to lie down and sleep. I would pass a boulder and think wow, that looks like a comfy spot to snooze for a little while. But then I would see Doug and his dad coming up behind me and would realize I didn’t have time for a nap. I don’t know if I was hypothermic, but if not, I was close. I shudder to think about how cold I would have gotten had I decided not to bring that down jacket.

On the summit with Doug and his dad in my super warm puffy down jacket.
On the summit in my super warm puffy down jacket.

I realize that having an extra-warm clothing item like this during cold temperature activities is especially important with my ostomy. Even though it only takes a couple of minutes to stop along the trail and swap out a pouch, I do have to expose a small section of my belly to the elements. In extremely cold temperatures, it doesn’t take long to lose heat by doing this. Packing conservatively with plenty of warm clothes is of paramount importance.

I can’t wait to head out on our next training hike, and I am starting to compile a list of peaks to attempt that have good winter trailhead access and low avalanche danger. For future training hikes, I will have to progressively increase my pack weight to at least 40 pounds (the expected weight of my pack on Rainier). I guess this means I can bring an extra large lunch next time!

The One Pass Ostomy Draining Device: a great product for the outdoors

Usually it is the big flashy things like climbing ropes, packs or tents that become my most coveted outdoor gear. Lately however, a much simpler and unassuming piece of gear has become one of my favorites.

A couple of months ago UPTT Inc. sent me a One Pass Ostomy Draining Device (OPODD) to try on my adventures. Due to my hip injury, I had to put off testing the device outdoors until a three-day backpacking in Rocky Mountain National Park in June. This, however, did not stop me from trying it indoors. The OPODD is an instrument with two flat rollers that clamps onto your pouch when you want to empty. With one downward motion, the device pushes all pouch contents swiftly out of the tail. Though it took a few tries to get used to the OPODD, once I had the hang of it I found myself reaching for the tool again and again. It is especially useful on those days when my output is thick and difficult to push out of the pouch. One quick swipe of the device and the output is forced out — no matter what its consistency.

I liked the device so much that I was soon using it every time I emptied at home. Though I usually leave the device at home because I seldom carry a purse, the slim design of the OPODD makes it easy to fit in a handbag or tote to be carried anywhere you go.

The OPODD clamps on the pouch. Emptying the contents only takes one smooth downward swipe.

After trying it out, I was convinced that the OPODD was great to use at home. Now it was time to take it into the wilderness with me. Ever mindful of my pack weight, I am very picky about what I choose to bring on backpacking trips. Something has to be highly useful to make the cut. It didn’t take long to realize how happy I was to have the OPODD along on my first backpack adventure of the season. In the middle of cooking dinner on our first night, the sky darkened and big heavy raindrops spilled from the sky. We swiftly donned our rain gear and dashed under the trees with our dinner. Despite being covered by tree branches and Gore Tex, my clothing soaked up the dampness and my teeth began to chatter from the chill. Leave it to my ostomy to decide that this was the best time to produce ample amounts of output. I had to make a trek to the camp privy in a full-on rain storm.

When I got to the backcountry restroom facilities (a pit toilet sitting out in the middle of the woods with no walls or roof), I quickly grabbed my OPODD, clamped it on my pouch, slid it down and had the contents emptied within seconds. Normally it would have been hard to manually work output to the tail-end of my pouch with such cold hands, but maneuvering the device was easy even with the chill-induced clumsiness.

Heading to the privy with my OPODD on a very chilly evening.

That night, the handiness of the OPODD proved itself again. When I do strenuous exercise such as backpacking during the day, my output often slows down or stops almost entirely. That means everything comes out later — often in the middle of the night. Getting up at 2 a.m and walking five minutes away from camp alone is unnerving.  Sitting down to empty my appliance by headlamp while surrounded by miles and miles of pitch black wilderness  spooks me out. It is one of those times when I swear twigs are being stepped on all around me, and I imagine mountain lions behind every boulder. Pulse racing and goosebumps fully engaged, I want to purge the contents of my pouch as fast as possible and get back to the tent. This particular night, I ended up having to endure this experience a couple of times. It was wonderful to be able to clamp the OPODD on my pouch, slide the contents out quickly and return to the comfort of my sleeping bag and the company of a snoring Doug.

My positive experiences that first day made the device completely worth its weight — and that is really the only issue with bringing the OPODD on outdoor trips. For those who try to backpack on the ultra-light side, the OPODD weighs in at 3.6 ounces. Not heavy by any means, but when one is trying to get their pack weight as low as possible, every ounce counts. Personally I feel that the extra weight is a small price to pay for the ease the device adds to emptying my pouch in the wilderness.

The only challenge I noticed with the OPODD was that it couldn’t slide over the Velcro at the end of my Convatec Pouches. This didn’t end up being an issue though. I would just push the output as far as the Velcro with the OPODD and then drain out the rest manually. This actually worked great because it prevents any output from getting on the device.

You can’t see my OPODD, but it is tucked in my pack as I head out on a backpacking  trip in the Mt. Massive Wilderness two weeks after the one in Rocky Mountain National Park. I plan to bring the OPODD on every wilderness excursion in the future.

As I continued to test out the OPODD, I  realized that it was going to become an indispensable piece of outdoor gear. Two weeks after the Rocky Mountain National Park trip, Doug and I were out in the backcountry again on a hike up Mt. Massive which included two nights of camping in the wilderness. This time the challenge was mosquitoes which swarmed around me every time I tried to empty.  One plus of having an ostomy is that you don’t have to expose your bum when emptying like you would when having a normal bm. Still, the skeeters were happy to attack the uncovered skin on my hands instead. The speed at which the OPODD allowed me to empty prevented me from getting many itchy bites.

From cold hands, to scary dark nights and blood-thirsty insects, the OPODD came to the rescue and allowed me to empty quickly and easily. I never plan to hit the trail without it again.

Vanilla Blush ostomy underwear review

A few readers have suggested recently that I write about some of the products I use. I thought this was a great idea. Though everyone is a bit different in what products they prefer for their ostomy, writing posts on this subject would still help introduce people to some of the available products.

Just as I was thinking of doing this, Vanilla Blush, a wonderful ostomy lingerie company based in England, sent me some of their underwear to try out. The underwear they provided were the Grace and Beth styles, and those are the two models I’m reviewing here. Though this review describes their women’s styles, Vanilla Blush makes undergarments for men as well.

Right after receiving the underwear, I tried both styles out for everyday wear. Most of the time, I wear regular low-rise underwear and just let my pouch flop over the top of it because this is what I find to be comfy. If I am going to wear ostomy underwear, it must be as comfortable as my regular panties. After trying out the Vanilla Blush undergarments, I am so impressed! These undergarments feel great and are not too tight or restrictive. The fitting chart on the website is accurate, and the size I requested based on my measurements fit perfectly. One of the things I love most about these underwear is that they are not unnecessarily high-waisted.  They are exactly the right height to cover my pouch from bottom to top with no extra fabric. I love how I can see my belly button with the Vanilla Blush underwear.

The "Beth" underwear conceals my pouch from top-to-bottom without being too high-waisted. I love the sparkly fabric too!

The white “Grace” style is made out of a 93% cotton and 7% spandex fabric that feels very soft and is a perfect weight. The black “Beth” style is made out of a polyester/elastane fabric that is stretchy and comfortable. It also has some pretty sparkly threads on the front. Both styles have an inner pocket to hold a pouch. I happen to not use the pockets in any of my ostomy underwear or wraps. Due to the lower placement of my stoma, pockets tend to cause my pouch to bunch up more than if I just let my pouch hang freely in the underwear. Still, I don’t mind that the pocket is there. By not using it, I actually have a nice double layer of fabric over my pouch which covers it nicely. Whether you use the pocket or not, the underwear fit beautifully.

The Vanilla Blush underwear also holds my pouch in place and conceals it well, even under my tightest pair of low-rise jeans. The part of the underwear that sticks out above the waist band of my jeans is very flattering. If my shirt rode up as I went about my day, and the top of the undies were inadvertently exposed, I wouldn’t care. The bow and trim make them super cute!

The underwear work great under my low-rise jeans. They look so nice it doesn't matter if they stick out above the waistband.
The Vanilla Blush underwear hold my pouch against my body so that it is invisible under my most form-fitting jeans and T-shirts.

I knew I loved these underwear for day-to-day wear, but how would they perform during an outdoor adventure? I decided to give them a try during a day of rock climbing at the North Table Mountain climbing area in my home town.

As I hiked up the trail to the crag, the underwear didn’t ride up or bind and felt pleasant to wear.  The temperatures were really cooking on the south-facing cliffs, but the underwear was cool and breathed well.

Heading up the trail to the rock climbing area, the underwear are not restrictive and are cool in the hot temperatures.

When I do any strenuous activity, such as climbing, I always wear a six-inch-wide Nu Hope hernia prevention belt. Over this, I usually wear a pair of ostomy underwear to hold it in place. If I don’t, the hernia belt tends to ride up to the narrow part of my waist and does not provide the support I need. One thing I was a bit concerned about was whether these underwear would work with my hernia prevention belt since they have a lower rise than the ones I usually wear. Any ostomy briefs I wear for my outdoor activities must fit over the hernia belt.

When I put the Vanilla Blush underwear on, an inch of the belt stuck out at the top. However, this was not a problem. They still held my hernia belt in place wonderfully through the whole afternoon of climbing. It never shifted once, even when doing high steps and stems on the rock and hanging in my harness as I was being lowered on the rope.

Even though my six-inch-wide hernia prevention belt sticks out above the undies, they still held it in place well.
The underwear were comfortable while climbing...
...and lowering in my harness.

As late afternoon approached, I realized I had one more workout to complete. I bid my climbing partners farewell and drove over to the gym to do the core and upper body weight routine that was on my schedule for the day. I have been really disciplined in doing the workouts recommended by my personal trainer and only miss them if absolutely necessary. I knew I could still squeeze them in before the facility closed. As I did planks, stability ball work and lifted weights, the Vanilla Blush underwear continued to feel great.

Finally, it was time to head home. When I got there, I took off my hernia prevention belt and climbing pants and threw my jeans back on. From trail to cliff, and from gym to jeans, the Vanilla Blush underwear performed just as I had hoped they would.

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.