Ring around the stoma: my best defense against leaks

In approaching the two-year anniversary of my ostomy surgery, I was looking back at an email I wrote to Doug from the hospital during my final severe UC flare. A few days before writing it, I had received my very first infusion of Remicade. It had worked wonders to get my symptoms under control, but I did not want to take such a potent drug for the rest of my life if it could be avoided. I was strongly leaning towards pursuing surgery once I got out of the hospital and wasn’t so sick and weak (a decision that became much clearer when side effects of the drug became more than I could bear). Even though I was quite confident that I wanted surgery, I was still scared of getting an ostomy due to the horror stories I read on the internet–especially the ones that revolved around leaks. I had just read a worrisome tale on the web when I sent this message:

October 2, 2010

Doug,

This all sounds so complicated and overwhelming. I DON’T want to be infused with drugs the rest of my life but this sounds so hard too. What if I can’t find a way to go climbing or backpacking without creating a leaky poopy mess? Are you confident we will be able to figure this all out together without getting fed up? Maybe it feels different when someone faces surgery in an absolute emergency, but I am choosing this aren’t I? Need some reassurance.

-Heidi

Despite the fears, I knew in my heart that surgery was the route I wanted to take to treat my ulcerative colitis. I met with my surgeon and was then scheduled to meet with my “wound, osotmy and continence nurse” (WOCN). I had lots of questions for her, including several about leaks. She assured me that once I found the products that worked for me, leaks should not be an issue. I liked that answer, but I wasn’t sure I believed it. From all the things I read, leaks just seemed like a given with an ostomy. After my surgery, I stocked my car with spare pants, put waterproof pads on the bed when I slept, and bought a collapsible wash basin to wash potentially poopy clothes on future backpacking trips.

It didn’t take long to experience my first leak. Shortly after I got home from the hospital, wound drainage got under my wafer while I was sleeping and broke down the adhesive. Though not a huge disaster, a little bit of stool did escape. I had been using a strip paste right around the opening, but it did not adhere to my skin well. I decided to set up an appointment with my WOCN to see if she could troubleshoot my problem. After hearing about what happened, she left the room and came back with something that looked like a flat donut made out of Silly Putty. It was called a barrier ring. She showed me how to put it on, gave me a few extras, and told me how to order more. I left the office hoping for the best.

So how long was it until the next leak? It has been almost two years since that appointment and I have yet to get another one. My nurse was absolutely right when she said finding the right products is crucial. For me, a barrier ring was all I needed to become confident that output would not seep out from under my wafer. Whenever people mention leaks, the first thing I ask them is if they have tried a barrier ring.

Barrier rings come in many different brands. The first one I tried was an Adapt Ring by Hollister. I used these for four months and liked them a lot. However, I later tried an Eakin Cohesive Seal by Convatec and found that they were more resistant to erosion from my output and stuck to my skin very well–almost melting onto it. Some people don’t like this because the residue is hard to remove. However, that stickiness is exactly what makes them work so well for me; nothing gets beyond the Eakin. I also tried a ring by Coloplast, but so far, the Eakin Cohesive Seals are my personal favorite. Everyone is different, so it pays to try every brand to see which is the best fit for you.

The other thing I love about barrier rings is how well they protect my skin. Wilbur, my stoma, is an active guy. He wiggles, dances and expands and contracts a lot. To leave room my stoma’s gymnastic routines, I cannot cut my wafer too close to it and need to leave about 1/8 inch of my skin exposed. A barrier ring swells up to fill in this space. At first I was a little shocked by how much the barrier ring turtlenecked around my stoma when it was exposed to moisture, but I soon realized that this is exactly what they are designed to do in order to protect the parastomal skin.

The following photos show my favorite way of attaching a barrier ring. This method minimizes the chances of getting the ring wet which allows it to stick to the skin very well. Along with using a barrier ring, I change my appliance every 3-4 days. Beyond that time frame, my Eakin Cohesive Seals erode and leave my skin exposed.

The barrier ring I use: the Eakin Cohesive Seal.
First, I stretch the hole in the ring to match the size of my stoma. Then I tear one side. (Yes, it appears a manicure might be in order… rock climbing is hard on the fingertips).
After drying off  my skin very well, I hook the ring around my stoma.
I then press the torn edge back together.
Finally, I place the wafer over the barrier ring. You can see the 1/8″ space around my stoma and how the ring fills it in. Within an hour, moisture will cause the ring to swell and turtlneck up the side of the stoma about 1/4″. This keeps output from seeping under my wafer while also protecting my parastomal skin. (See the Skin Sleuthing post to read about the taping method pictured).

Nowadays, the spare pants sit unused in the car (well except for the one time they came to the rescue when I dropped my tail and spilled output all over my trousers), the package of waterproof pads is gathering dust in the closet, and I have not had to do laundry on any backpacking trip. It doesn’t matter whether I am climbing in 95-degree temperatures, snowboarding in the frigid cold or swimming at the pool. I always feel confident that my appliance will not leak during any of my activities when I use a barrier ring. Even in the rare instances when my wafer has peeled up, my barrier ring has always held tight and maintained the seal.

So if you are having leaks and haven’t tried a barrier ring, I highly recommend getting a sample and giving it a go. If the ring doesn’t prevent your leaks, meet with a WOCN and see if they have any other recommendations. Talk with other people with ostomies on the internet or at local ostomy support groups and find out what they suggest. With the right products, leaks with an ostomy shouldn’t be a given; they should be the exception.

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Mt. Rainier next summer!

I have a brand new goal to work toward for next summer: a climb of Mt. Rainier (14,411 feet) in Washington’s Cascade Range. Ever since Doug and I backpacked on the lower forested flanks of Mt. Rainier on the Wonderland Trail when we were in college, I have wanted to try the peak. Doug and I had talked of doing it a couple years ago with his Dad, but my illness and surgery delayed those plans. I am ready to dust off this dream, and the three of us will finally give it a go.

A painting of Rainier that I did in 2003. Can’t wait for my adventure there next summer! Copyright 2003 Heidi Skiba.

Though Doug and I rock climb a lot, we do not have experience on peaks with large glaciers (and Rainier is the most heavily glaciated mountain in the Lower 48). We know it would be too dangerous to try Rainier on our own. Therefore, we will be doing the ascent with a guide service, International Mountain Guides (IMG).  This company leads mountaineering trips all over the world and has some of the best guides in the business.

As it turns out, one of the owners of IMG, Phil Ershler, has Crohn’s disease. He and his wife, Susan Ershler, wrote the book Together on Top of the World. The book describes Phil’s challenges with Crohn’s disease and colon cancer and tells the story of the couple’s journey to climb the highest peak on each of the seven continents despite these odds. I went to see Phil and Susan speak in-person in Boulder shortly after they released their book in 2007. This was roughly a year after I had been officially diagnosed with ulcerative colitis, and  I was scared  of what my recent diagnosis might mean to my outdoor adventure-filled life. Their words gave me much hope. I read their amazing book shortly after hearing them speak and was further inspired.

As we started to research our climb with IMG, I emailed Phil to find out if he felt that any of the Rainier trips were feasible with my ostomy. The last thing I wanted to do was get excited about a trip only to find out I might be denied due to my medical condition. I was candid about the extra challenges I now face after ileostomy surgery, but Phil was very encouraging and suggested the route he thought might work out the best. He also warned me that Rainier trips fill very quickly and to get our application in as soon as the 2013 dates were published.

He wasn’t kidding. We knew the trip dates would be published while we were on our climbing road trip, so we were driving into town from our camp every other day to find a place to connect to the internet and check. Turns out the dates were published on the one day we didn’t get to town. By the time we checked the following day, there was only one trip left with three openings during the month-long window of time we wanted.  Thankfully we secured our spots!

Before being officially accepted on the climb, the guide service emailed me with more specifics on the route so that I knew what I was likely to face on the mountain. Among several challenges, the ascent to high camp involves carrying a 40-pound pack for five miles with 5,000 feet of elevation gain.  The final day of the route includes a five- to six-hour ascent to the summit and then a descent all the way to the trailhead. This means a round-trip travel time for that day of up to 16 hours. I had been very open on my application paperwork about my ostomy and the challenges it can present (such as dehydration and my limitations of carrying super heavy loads). The staff  wanted to make sure the conditions of the climb seemed doable to me. IMG was super accommodating and helpful about it all and explained some steps I could take to help meet my hydration and pack-weight needs within the confines of the trip. They were even set up to deal with my gluten-free diet.

After carrying a 40- to 55-pound backpack on several trips since surgery, I was sure that I could handle the load on this climb–especially with time for additional training. Just as I carried extra water on some long all-day climbs this summer, so I would on Rainier. I already had a lot of experience swapping out my ostomy pouches in frigid temperatures and with a harness on. I had no concerns about that part of things. I was sure the climb was within my abilities, but I also had to get signed forms from my regular doctor and surgeon stating that they approved of my participation. After outlining the specifics of the trip to them, neither had any reservations about me taking part in the climb. I was set to go!

It is just starting to settle in that I am actually going to be attempting Rainier. I can’t describe the excitement I am feeling for this adventure. The route that was recommended to me is the easiest one that IMG uses on Rainier. It is a three-and-a-half day trip starting at a beautiful place called Paradise (5,400 feet). We will carry our loads to Camp Muir (10,080 feet) and then move on to a higher camp at the Ingraham Glacier the following day. On the final day of the trip, we will attempt the summit (conditions permitting) and descend to the trailhead. Pack weights are less on this route than most others because some group gear is kept at the already-established camps.

I have to admit that I was really drawn to do one of the longer or more remote Rainier trips described on IMG’s site like the Emmons Glacier climb or even a six-day seminar that includes a lot of technical skill instruction plus an ascent of the peak. In my mind, I am still the woman who has gone on several 30-day backpacking and mountaineering trips into the remote wilderness carrying 75 pounds of gear on my back, but I have to acknowledge that my body has changed since then. I am still learning what it is capable of after surgery and this trip will be a perfect test. I am fully confident that it will be strong enough for this route, and after that, who knows? Maybe I will want to do a longer or more difficult trip on Rainier or another peak down the line. Right now, I am ecstatic to have the chance to take part in this climb.

Let the training begin!

Happy World Ostomy Day!

Happy World Ostomy Day, everyone! Today I will be celebrating by heading to work and having a wonderfully ordinary day. After all, when I was recovering from surgery, I couldn’t wait to return to my job as a park naturalist. Right after my operation, life revolved around getting used to living with my new stoma. Being back at work allowed me to focus on something else and helped me see that life would indeed feel normal again.  Returning to my job also made me incredibly thankful for my surgery. I remember quietly breaking into tears in my office after leading my first few hikes because I was so happy and grateful to be doing what I loved again.

As the list of things that my ostomy allows me to do again grows, so does my passion for showing what is possible after surgery. I am always excited to help spread the word about this life-saving surgery — not just on this special day, but every day.

So join me in celebrating World Ostomy Day. If you or one you love has an ostomy, help spread the word by sharing your story with someone today. Together we can educate others and end the stigmas!

Spreading ostomy awareness while climbing the Third Flatiron in Boulder, CO in August 2012.

On the Road

When Doug and I became a couple during college, our very first group purchase was a spatula. We were heading out on a camping trip and realized we would have no way to flip the pancakes we were making for breakfast the next day. We stopped at a grocery store en route to the park and pooled our funds to acquire the best turner that $1.99 could buy.

Our next group purchase was a bit more substantial — a slightly beat-up 1985 Toyota 4×4 truck. The lakes of northern Wisconsin, wilderness of Michigan’s Upper Peninsula, and craggy climbing areas outside of Madison were calling us, yet we had no reliable way of getting there. The truck became our key to adventure. Every weekend we would load it up and head out to the wilds. During a couple of college summers we hit the open road of the western United States for months on end — living out of the back of the pickup and stopping at every climbing area we could find along the way. Those weeks of roaming freely and opening the map each day to decide where we wanted to go next provided some of our most beloved memories together.

One of the things I longed to do most after surgery was to go on a climbing road trip again. I wanted to remember what it felt like to climb all day, cook up dinner at camp, talk about the day’s adventures over a crackling campfire, and then get up to do it all again the next day. Last summer, I wasn’t quite strong enough to rock climb. After training and gaining strength over the winter, my body finally felt ready to spend day after day doing climbing routes. In the beginning of September, Doug and I set out on a 17-day adventure that would include a week of climbing at City of Rocks in Idaho and several days of climbing at Smith Rock in Oregon. While in the Northwest, we also planned to spend time with some good friends who lived in Bend, as well as meet up with my parents for some sightseeing.

As we were traveling and climbing, I noticed that quite a few things had changed since our road trip days long ago:

  • There is now something called the internet. In our college days, I carried a small leather address book and actually wrote to my friends on paper while on the road.
  • Cell phones have replaced pay phones. We used to have to to load up our prepaid calling cards and look for a pay phone to let our parents know we were still alive. Now we just searched around Almo, Idaho, until we discovered the cell phone reception sweet spot. (It was pretty good at the northern-most table on the patio of the Rock Stop general store.)
  • Our trip food budget expanded to include things other than rice and ramen noodles. Though we still cooked most of our meals on this vacation, it was nice to have enough funds to enjoy the food and drink at some of Bend, Oregon’s great brewpubs with our friends.
  • We looked at some of the climbs we did at these areas in our early 20s and wondered how we had the nerve to get up them.
  • Our truck has been replaced by a tiny, fuel-efficient Toyota sedan. It is amazing how much camping and climbing gear we squeezed into that little rig. However, we did bottom out on some three-inch-tall rocks on Idaho’s back roads.
  • I now had an ostomy.

It was easy to forget about this last big change because things felt so much like they had in the past before I had gotten sick with UC and before I had surgery. I was just out there having fun and my stoma did not diminish the joy of a road trip one bit. Other than changing or emptying my appliance, or having to drink extra water to prevent myself from getting dehydrated, I hardly thought about my ostomy at all. It proved to be no trouble during long days on the road, while living in camp or while climbing long routes.

We shot a lot of footage on our road trip and will be putting together a video about the adventure soon. Until then, the following photos share some of the great times Doug and I had on the trip.

Climbing Theater of Shadows on Jackson’s Thumb at City of Rocks. This was my very first lead climb after surgery.
Rappelling off of a route at City of Rocks in Idaho.
Our very cool campsite at City of Rocks.
Sketching at camp.
I love donkeys. We encountered this cutie while walking near our friends’ house in Bend, OR.
Showing off a fresh wound after a full day of climbing at Smith Rock, OR.
Enjoying the McMenamins salt-water soaking pool in Bend, OR.
Spending time with my parents at Crater Lake.
Exploring the mile-long Lava River Cave near Bend, OR.
No road trip is complete without at least one stop at a giant roadside sculpture. Doug and I getting silly during a major windstorm at the huge Conestoga wagon near John Day, OR.