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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Using Duoderm to protect peristomal skin

What’s a mountain girl to write about when my hip injury is keeping me from the slopes and summits? Skin care, of course! After all, taking care of your peristomal skin is of utmost importance. It is hard to enjoy outdoor sports if your skin is irritated and painful or if your appliance won’t stick to weepy, damaged areas.

My stoma is fairly long at 1.5″and doesn’t have the best posture. It flops downward and a bit to the right — especially under the weight of my clothing and pouch. This actually  works great because my output goes toward the bottom of my pouch which helps prevent leaks. On the downside, the area of skin just under my stoma sometimes gets irritated because stool tends to collect in that spot. Also, as my stoma flops down, it compresses my Eakin barrier ring in that area and causes it to erode more quickly. Fortunately, I discovered a great solution to this problem soon after surgery thanks to the help of my home health nurse.

When I don't protect the skin underneath the area where my stoma flops over, I get a strip of irritation.
When I don’t protect the skin underneath the area where my stoma flops over, I get a strip of irritation.

There was a six-week time period after my surgery during which I had a complication with my mid-line abdominal incision (due to a rare reaction to sutures). I ended up having to leave the wound open for healing with the help of a wound vac. While this was certainly a disappointment at the time, the situation also held a hidden blessing. Every other day, a home health nurse would come and change the sponge dressing for my wound vac. In order to do this, my ostomy wafer had to be removed and replaced each time. Along with being a wound vac guru, my home health nurse also had a great knowledge of ostomy skin care. Having the nurse watch and help me change my appliance so frequently over a period of many weeks provided an amazing opportunity to practice the task and troubleshoot problems. As time progressed, my nurse saw that a sliver of skin under my stoma was consistently raw.  She told me that this would likely become a chronic issue unless I did something to better protect that section of skin. I was already using Eakin barrier rings, so she suggested I add a product called Duoderm Signal to my ostomy system.

Duoderm Signal comes in a 4″ x 4″ sheet and custom-sized pieces can be cut out of it to cover whatever area needs protection. To care for the sliver of skin right under my stoma, I cut a 1/2″ by  1″ comma-shaped piece that contours with the edge of my stoma. When I place it on my skin in the trouble spot, it provides a much needed extra layer of protection. When my Eakin barrier ring erodes a little sooner in that section, my output touches the Duoderm layer instead of my skin.

Duoderm can be placed right on the skin, but it does not adhere well if the area is wet. Therefore, if I get irritation that is weepy,  I must put a layer of stoma powder and skin prep under the Duoderm in order for it to stick. The best way to do this is to use the “crusting” method. First I put a small bit of powder on the sliver of skin that is irritated. I then dab it with 3M Cavillon Skin Prep. Once it dries, I add one more layer of stoma powder and one more layer of Cavillon. I give the area a final dry with a hair dryer on a low setting for a few seconds. Then, I add the strip of Duoderm over the crusted area. Finally, I put my Eakin barrier ring over the Duoderm followed by my wafer.

This method works wonderfully to protect the skin under my stoma. However, I can’t stretch wafer changes longer than four days when using the Duoderm. If I do, the Duoderm will start to peel up from being so close to my wet stoma. Then output starts to seep under it and cause skin breakdown.

If I develop a sore under my stoma, I put a layer of stoma powder just on the tiny sliver of irritated skin. I then dab the powder with Cavilllon skin prep to form a seal over it. Once dry, I add one more layer of stoma powder followed by one more layer of Cavillon skin prep. This forms a "crust" over the sore that the Duoderm can stick to. The stoma powder also helps heal the sore.
If I develop a sore under my stoma, I put a layer of stoma powder just on the tiny sliver of irritated skin. I then dab the powder with Cavilllon skin prep to form a seal over it. Once dry, I add one more layer of stoma powder followed by one more layer of Cavillon skin prep. This forms a “crust” over the sore that the Duoderm can stick to. The stoma powder also helps heal the sore.
A small piece of Duoderm Signal adds another layer of protection for my skin. I put the Duoderm under my Eakin barrier ring. Both of these things then go under my wafer.
A small piece of Duoderm Signal adds another layer of protection for my skin. I place it right on top of the stoma powder/Cavillon skin prep “crust” in the photo above. If I happen to not have a weepy sore and just want to protect the skin, I skip the powder and Cavillon step and place the Duoderm right on my skin.
I place my Eakin barrier ring over the Duoderm. You can see the Duoderm peeking out in this photo.
I place my Eakin barrier ring over the Duoderm. You can see the Duoderm peeking out towards the bottom of the ring in this photo.
The Duoderm and Eakin barrier ring protect the trouble spot beautifully and help me maintain healthy paristomal skin. As long as I put the Duoderm on at every change, I rarely get a sore anymore unless some output happens to seep under the Duoderm. In these cases, the layer of stoma powder and Cavillon mentioned above clears it up by the my next change.
The Duoderm and Eakin barrier ring protect the trouble spot beautifully and help me maintain healthy peristomal skin. As long as I put the Duoderm on at every change, I rarely get a sore anymore unless some output happens to seep under the Duoderm. In these cases, the layers of stoma powder and Cavillon mentioned above clear it up by my next change.

Some people with ostomies are lucky enough to be able to stick their wafer right to their skin with no additional products. Unfortunately, that does not work for me. I need to build up several layers of things in order to maintain healthy skin. As soon as I try going back to more simple methods, my skin suffers. Appliance changes typically take me over 45 minutes if I include the time it takes to set up my materials, remove my old appliance, shower and do all the steps to get my new wafer on well. I never worry about it. It is not a race. Having my appliance off for a little while actually helps my skin get some fresh air. Between eating about five marshmallow prior to my change to slow down my output, and then wrapping paper towel strips around my stoma to catch any stool that might come out as I work, things go fairly smoothly when having my appliance off for that long. Of course there are always those days when my stoma doesn’t cooperate! Still, even with the occasional mishap, taking the extra time needed to better protect the skin around my stoma is worth it. Having happy skin helps me feel good about my ostomy and gives me confidence that my appliance will adhere well through all my adventures.

I do have one more skin care tip that I use which involves using both an Eakin ring and stoma paste, but that will have to wait for a future post!