No more expecting the worst

When I woke up this morning, I had anticipated getting so much more done including writing a different blog entry than this; one that included a short new video. Instead, all I managed to check off my list was a physical therapy appointment, grocery shopping and a very messy appliance change with an uncooperative stoma which led to extra laundry and some other clean-up duties. So much for expectations!

One good unexpected thing that happened today was that I got my hip MRI results. I didn’t think I would find out what the test revealed until tomorrow. My primary care doctor told me that the radiology report showed some tendinosis in the joint, but no avascular necrosis. Before I throw a huge party, she does want my orthopedic doctor to also look at the MRI to make sure he concurs with the findings. Still, I am hugely relieved by the news as I would think it would be pretty unlikely that something wasn’t caught in the MRI.

I realize through all my recent hip pain woes,  I was hoping for the best, but preparing for and anticipating the worst. The pain in my hip has felt exactly like the AVN in my shoulder and I was really dreading getting the MRI results because I was almost certain they would say that I had developed the disease in another joint. Every research study I could find on steroid-induced shoulder AVN said that it was common for  it to also show up in the hip joint. How could my worsening hip pain not be caused by AVN? It seemed like a given and yet it turns out this is not the problem. The ironic thing is that I originally thought my shoulder issue was tendonitis and it ended up being AVN.  Now I was sure the hip problem had to be AVN, and here it is likely tendonitis!  Again, so much for expectations.

More and more I am finding that trying to anticipate what is going to happen with my health conditions is completely futile. I have always found it to be very important to research my health issues in order to make the best decisions possible regarding treatment options, but at some point I have also found it necessary to surrender to the many unknowns and simply put my trust in my doctors.

I have come across so many stories of people whose AVN has been missed in tests, so of course I start to wonder if that could end up being me. However, it makes me miserable to constantly speculate over whether or not things are being treated correctly, or whether or not I am doing absolutely everything I can to control the outcome of a disease. I went through this with my ulcerative colitis. There was always one more opinion I should get… one more diet I should go on… one more try this.  Eventually all that wondering just got to be too much for me. I am at that point with the avascular necrosis. My biggest hope right now is to simply find a doctor I am comfortable with for this condition. I have an appointment with another orthopedic doctor soon who was highly recommended to me to get another take on my AVN case, but once I consult with him, I am going to ride this out and see what happens.

From now on, instead of hoping for the best, but expecting the worst, I am going to try to hope for the best and trust that everything will somehow work out.

Next time?

Wow! That looks like fun I thought as I gazed up at The Ridge at Loveland ski area on Sunday and saw three skiers floating down an area of untracked powder. If only we had time to get up there. Doug and I were planning on leaving the ski area early to avoid the nightmare traffic jams that always happen on ski weekends when everyone is trying to get back home to Colorado’s Front Range. Getting to the area where these people had been skiing involved signing a waiver down at the lift ticket office and then riding the new Loveland Ridge Cat. We figured it would take at least an hour to get our pass and then ride all the necessary lifts to get to the area where the snowcat picked skiers up. Not to mention that the snowcat stopped operating at 2:30 p.m. We would really have to rush to catch the last ride.

That seemed like a lot to do for one run, and I almost shrugged it off  thinking it wasn’t worth the hassle. Anyway, we had passes to the ski area and there was always next time, right?

As I sat there in the snow looking up at the snowy ridge, I had this horrible nagging feeling that maybe there wouldn’t be a next time to do that run. I hate having depressing thoughts like that, and I really do try to stay positive as much as I can. However, sometimes the downer feelings sneak in and this was one of those times.

This Thursday, I am going in for an MRI of my left hip. I have been experiencing a rapid worsening of pain in the joint. What started out as a dull ache in the beginning of January has now changed to a sharp pain whenever I lift my leg in a certain position. The joint is starting to hurt when I walk and it feels alarmingly like the avascular necrosis (AVN) in my shoulder. Though I am definitely staying hopeful, I am also scared of what the MRI might reveal. If the results came back showing AVN, I am pretty sure snowboarding black diamond runs on The Ridge would be out of the question.

I suddenly had this incredible drive to get up there and to the run right away. There was no time to waste! Who cared about getting stuck in traffic. Doug and I raced down the mountain, got our passes for the Ridge Cat and made our way up the lifts to the loading zone for the vehicle.

This isn’t the first time since being diagnosed with AVN that I have had these sorts of thoughts. Last Friday I went to a two-hour Zumba dance party at my gym. Doing salsa moves, jumping around and swinging my hips was so much fun, and I smiled the entire time. Still, the dreaded thought once again entered my head: Would this be the last time I would get to dance so hard? Just in case, I closed my eyes and focused on the lovely sensation of my body moving to the music. Don’t ever forget how amazing this is I thought.

A couple of weeks ago I went to the rock climbing gym. My orthopedic surgeon had said it was okay to still climb as long as I followed some restrictions, avoided doing anything that elicited pain, and didn’t push too hard. I started tentatively–not knowing how my shoulder would handle things. Soon I realized that if I only climbed with my arms in front of me and did not do any moves where I was reaching far out to the side or back, I was fine. On the last climb of the day, I paid close attention to how strong and powerful I felt when to reaching up for a hold and making my way to the next one. Would there be a time in the near future when I couldn’t remember what that felt like due to decreased mobility?

First time climbing after my avascular necrosis diagnosis and still going strong.
My first time climbing after my avascular necrosis diagnosis. I was being cautious, but still felt strong.

On New Year’s Eve, I went ice skating with my brother-in-law’s family. As everyone went back to the warming room to take off their skates, I stayed behind and did a few laps. Once again I closed my eyes and tuned into the feeling of my legs gliding over the ice hoping to commit it to memory in the event that I wouldn’t be able to do it again.

Ice skating on New Year's Eve.
Ice skating on New Year’s Eve.

As I sat on The Ridge looking out at the gorgeous snow-capped peaks in the distance, I thought back to the climbing, ice skating and zumba instances and once again wondered if this was the last time I would be clicking my boots into my bindings and flying down a black diamond run. Sure, these thoughts were rather melancholy and I wished I could have been thinking about happier things. However, there was one silver lining to having these feelings: they made me want to soak up the moment and savor every bit of joy that was found there.

I tilted my board towards the fall line and began to slide down the slope. As I picked up speed, I listened to the wind rush past my ears and felt snow crystals touch my smiling cheeks. I felt my body turn into this amazingly coordinated machine and bend and sway with the subtle nuances of the terrain. With years of practice, it knew the exact pressure I needed to exert on the board to make it arc gracefully through the powder. I felt the sensations in my feet as I rolled from my heel-side edge to toe-side and heard the noise of my board slicing its way through the snow. I felt agile, giggly and content and wished that slope could have gone on for at least ten more miles.

I don’t know what Thursday’s test will reveal. Maybe I will have AVN in my hip. Perhaps the pain is just from a tweaked tendon. Whatever the results–that was one heck of a snowboard ride! Perhaps we all need to delight in those amazing moments as if there will be no next time.

Boarding the Loveland Ridge Cat
Boarding the Loveland Ridge Cat.
Unloading from the Ridge Cat. The individual behind me had just reminded us that all the terrain served by the snowcat was expert only. No turning back now!
Eagerly anticipating the run. The individual behind me had just reminded us that all the terrain served by the snowcat was expert-only. No turning back now!

A new year!

Happy New Year everyone!

Ouch! It has been an achy start to the New Year for me. No, not because of avascular necrosis (AVN), but because I went sledding yesterday. Doug and I are up in Wyoming visiting his brother and family for the New Year holiday. Even though there is not much snow, we took our sleds out to the local hill and tried to make the best of it. On my second trip down the hill, I spun out of control and hit a rock with my shoulder and twisted my back. Fortunately it wasn’t my bad shoulder. After taking a little break, we all found a better hill and spent the afternoon building jumps and zooming down the slope. I am sure I could have found a more gentle activity, but I hadn’t been sledding in years and it was so fun. And the doctor did say I shouldn’t sit on the couch waiting for things to get worse, right? I hardly thought about AVN all day and that was a blessing.

In between fun activities up in Wyoming, I had some time to look back and reflect on 2012. Other than the bad news at the end of the year, 2012 was simply amazing. It was the first year I really got into the swing of things with my ostomy. Having one now feel so routine that I barely even think about it most of the time. I also thought about the goals I had set for this past year. I was successful in reaching some of them and was unable to attain others. Here is a summary of those goals:

  • I want to do a better job of keeping in touch with my friends and family.
    I worked hard on this one, but there is always room for improvement. Having a more introverted personality, I am not much of a phone-talker. In keeping with my love of writing, I usually prefer to email and write long letters to those closest to me, but when I do call my family and friends, I always feel so uplifted. I need to add more phone calls into 2013.
  • I want to continue sharing my thoughts on this site.
    When I started this blog in the spring of 2011, I had no idea how large a part of my life it would become. The comments and emails I get from everyone mean so much to me. You are all so inspirational! I also could not foresee how important this blog is to my own emotional health. Writing here helps me process the events in my journey with IBD, my ostomy and now AVN.
  • I want to get back into working on art.
    This is an area where I fell short. I LOVE doing art,  yet there was seldom time this year to squeeze it in between work, my outdoor and fitness endeavors and blogging. On the bright side, I did write and sketch in my nature journal quite a bit this year. Seeing that this is my favorite activity of all my art-related pastimes, I am super psyched that I was at least able to do this.
  • I want to go on a climbing road trip.
    Doug and I did go on a two-week-long rock climbing trip, and it was the highlight of my year. I have trouble finding the words to describe how amazing it was to be out on the rock again with Doug day after day. Memories of that trip are going to fuel me through any hard times that lie ahead with AVN.
  • I want to run in the Crohn’s and Colitis Foundation of America’s Team Challenge Half Marathon next December.
    When I developed hip pain in the spring, I took this goal off my list. I didn’t feel that my body was up for it. Though this was very disappointing, I was happy to follow the Team Challenge adventures of several of my fellow bloggers. To all of those who participated this year: Good job! I loved reading about your Team Challenge successes.

So what is on the goal list for this year?

I have only one: to try to live in the moment as much as possible each day. I know goals are supposed to be more specific than this, but being in the moment is one of my biggest challenges. I am a person who has always planned for the future and worked hard to achieve the things I longed for in life. It seemed reasonable that if I did a and b it would at least somewhat lead to c. Barring a few surmountable obstacles, life felt like it was in my control. Lately, things feel a little different. With a chronic health condition, there are so many more variables involved. It can really make it hard to visualize the future.

In light of this, I decided that the perfect goal for the upcoming year is to focus on the present. There are so many beautiful moments in each and every day. In fact, this trip to Wyoming has been full of them:

  • Sitting down yesterday afternoon to write stories with Doug and his brother and then hearing my niece read them out loud, carefully sounding out each new word.
  • Taking a nap and having a contentedly purring cat curled up next to my chest.
  • Flying over sledding jumps and giggling like a little kid.
  • Dancing with my niece in the kitchen to Katy Perry tunes.

So here is to a great 2013! I may not know what the year will bring but I do know that by focusing on the present, I won’t let any of the joy it holds slip by unnoticed.

Catching air on the sled hill.
Catching air on the sledding hill.

A fear becomes reality

The appointment yesterday started like so many others: weigh-in, check oxygen levels and blood pressure, and review my symptoms with the nurse. Then the orthopedist came in. We talked a bit about my recent shoulder pain and everything seemed as I would expect for an orthopedics appointment. Over the years, I have had a fair number of doctor appointments related to sports injuries. My recent MRI of the shoulder had shown tendinosis with some bone-marrow swelling in the head of my humerus. I really thought this was all due to overuse and that the doctor and I would soon start talking about all the exercises I needed to do to get the joint strong again and to reduce the swelling.

However, I soon realized that the conversation was taking a strange turn; the doctor wasn’t asking me any questions about the sports I had been doing. Instead, he was asking me about past medications. A sickening wave of intuition swept over me and made my stomach knot up and hands tremble. As I described my history of ulcerative colitis and prednisone use, I knew the words that were going to come out of his mouth as he turned to the screen and began to flip through the layered images from my MRI. He stopped and pointed to a specific spot on one of the pictures and broke the news. I have avascular necrosis — the bone in my humeral head is dying. Avascular necrosis was the one possibility that had frightened me so much about my hip pain last spring. That joint ended up being healthy on the MRI. This time, I was not so lucky.

As the appointment progressed I learned some things about the disease. Though doctors don’t understand exactly why, prolonged corticosteroid use can stop the blood flow to certain bones. Without an adequate blood supply, the bone tissue dies. I never felt that I was on prednisone for a huge amount of time — a total of 180 days scattered throughout the four years I was officially diagnosed with ulcerative colitis. Some of that time was comprised of month-long tapered dosages of 40 mg or less. However, I was on a dosage as high as 80 mg for a few days when I was hospitalized with UC during my final flare. The problem is, even if you are only taking a high dose of prednisone for a short period of time, it takes a long time to taper off the stuff which means it is going to be in your system for a while. Even after I had decided I was done with UC drugs and wanted to pursue surgery, it took me over three months to get down to zero mg of prednisone. By that time, the damage had already been done.

The progression of avascular necrosis can’t be predicted, so I don’t know if the joint will get worse, and if so, how long it will take. I am starting to have a similar pain in the right shoulder, and the orthopedist said it could also show up in that joint. Oftentimes avascular necrosis will occur bilaterally — for instance, in both shoulders or in both hips. In the future, other joints could be affected too, but there is no way to predict if that will happen.

My case was caught early, so at this point the main treatment is to take anti-inflammatory medication to help reduce the swelling and manage the pain. Not putting a large amount of stress on the joint is important too. Other than that, I just wait and see what happens. Right now, the area affected is not big enough to justify surgery. The orthopedist described some of the surgical options if it does get worse. He was honest with me and said that he has not seen many cases of avascular necrosis in shoulders and he has treated many more cases of it in the hips. He was going to do some research and talk with colleagues about my case. Leave it to my body to take the rare road once again. (My colorectal surgeon always said that I got extra points for creativity because my body often did the unexpected. The trend continues.)

This brings me to one of the bright sides in all of this. This orthopedist was new to me, and I really liked working with him. Not only do I appreciate honesty and the willingness of a doctor to sometimes say I don’t know, but this individual was very personable which I value highly. Somehow, chatting with the doctor about great gluten-free pizza options in the neighborhood or hearing stories about the ranger programs he went on with his family while visiting national parks this summer made me feel better in the midst of the bad-news diagnosis. When I asked the doctor if rock climbing was out of the question, he told me I could still go, but that I should choose routes that relied more on the legs and were less intense on the arms. He said climbing could cause pain in the shoulder, but that not doing it would cause pain here (and he pointed to his head and heart). I thought wow, this doctor gets it. I also asked him about Rainier, and he said I should still go for it as it was a lifetime opportunity. One of his colleagues had climbed the peak last year so he knew what it involved. He said with a smile that I better get training. Oh yeah, and he gave me a list of herbal supplements to try instead of ibuprofen if I wanted to go a more natural route to control the inflammation and pain. The doctor also said numerous times that he was sorry I had to go through all this. A simple phrase, but one that showed compassion.

If all of that wasn’t enough to earn my initial respect, the orthopedist knew a good deal about Crohn’s disease and ulcerative colitis. At one point, I asked him if my hip pain last spring, which showed no cause on an MRI and has mostly resolved with physical therapy, could be an early sign of avascular necrosis in that joint. He said he couldn’t say for sure, but that I shouldn’t worry about it unless the pain gets worse. He pointed out that joint pain can happen with IBD, even after the colon is removed, and the hip issue could be from that.

Still, I left the appointment in a state of shock, and the news took a little while to sink in. I stopped at the health food store and got the supplements my doctor recommended and then went on to Costco for a few items. I made my way through the aisles and dropped the giant-sized packages of Parmesan cheese, soup and toilet paper into my cart. I listened to the employees cheerfully describing the food samples they were handing out, but I could barely understand the words. I wasn’t present — my mind was in the clouds, a mile above the warehouse, trying to comprehend this latest diagnosis, and I felt dizzy and nauseated. I paid for my items, loaded them into my car and collapsed in the front seat and cried.

In many ways, this news is harder for me to accept than getting an ostomy. I knew living with an ileostomy wouldn’t be easy, but I was always confident that I could do everything I loved once I healed up and made it through the initial learning curve. I also knew that an ostomy would likely be my cure for a life without the pain of ulcerative colitis. Knowing that I have avascular necrosis feels different. There really is no end, as there is a chance the disease will progress and that the pain will worsen. And if it does, it will have a big effect on the things I love to do. For the first time in my life, I am having trouble picturing what my future will be. Of course, as with ostomy surgery, there are tales of hope out there. Brett Favre had avascular necrosis and was an amazing athlete.

After my meltdown in the parking lot, I headed home to meet Doug. Though I felt a strong urge to spend the afternoon crying my eyes out in bed, we had already made plans to check out an exhibit on Pompeii at the Denver Museum of Nature and Science. Viewing the exhibit was a moving experience, and seeing the casts of the people that died fleeing from the unexpected eruption of Mt. Vesuvius provided a somber reminder that none of us really know what the next minute will bring. I left the exhibit knowing that it was important to take things day by day and hope for the best.

Heading out to Zumba with my sad shoulder.
Heading out to Zumba with my sad shoulder.

And a big part of that is doing what I love. When we returned home from the museum, I got dressed for Zumba and went to the gym to dance with all I had. Then I did something else that fills me with joy: writing on this blog. With each word I typed, I felt better, stronger and less alone. I don’t know what avascular necrosis will mean for my ostomy outdoors adventures, but I do know that you will all be alongside me on the journey.

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!

Two years!

November 8th marked the two-year anniversary of my ileostomy surgery. It had been a hectic week, and I was in the mood for some quiet reflection time. I climbed a mesa near town, took in the scenery, and sketched and wrote in my journal.

As great as it was to quietly contemplate my two-year stoma anniversary on top of the mesa, something more festive was definitely in order. Once I got back home, I threw a little party with Doug, complete with  homemade culinary delights: chicken pesto pizza and a cake decorated like a colon.

Looking back, I am still in awe that it has already been two years. In those initial months after surgery, time crawled by slowly and every bit of my attention was focused on healing and getting used to the changes to my body. I thought of nothing but my ostomy and appliance. Now all those hard times seem to have gone by in a flash. My stoma has become part of me, and large portions of the day go by when I don’t think about it at all. When I do think about it, it is often with a feeling of gratitude. It may sound crazy to say I love my ostomy — but I really do. This day marked a special anniversary, but everyday is a celebration of the health my stoma has given back to me.

Celebrating my two-year surgery anniversary. It is hard to not look at the cake and map out all the areas where I had colon inflammation over the years. I chose the cecum for my first piece of cake. 🙂

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.

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!

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.

My first post-surgery multi-pitch climb: my imaginings turn into reality (feat. new video)

In the weeks after making my decision to have a permanent ileostomy, my imaginings of what life was going to be like after surgery played in my head like little movies. There was the one that featured me happily leading hikes with my ostomy at work, and another in which I pictured myself successfully emptying my appliance on backpacking trips. However, the one that I liked to imagine the most involved being on a long multi-pitch climb.

There I was in my mind–hundreds of feet up a steep route and anchored into a small ledge with the climbing rope. I would picture myself removing a full pouch, snapping on a new one and then bagging up the old and tossing it in my pack like it was no big deal at all–as if I had been doing it that way my whole life. I would gaze up at the many pitches yet to go and get ready to climb, barely thinking about my ostomy at all.

As I prepared for and recovered from surgery, these visualizations became an important source of hope for me. I really had no idea if the reality would end up exactly that way I pictured it, but having these images in my head gave me a goal to strive for. I really saw no reason I couldn’t do all the things I was envisioning once I healed up.

One by one, in the year and a half since surgery, I turned those images in my mind into  actualities. I jumped right back into work and led hikes and nature programs. I worked my way into backpacking, even going on an eight-day trip 10 months post-op. Snowboarding, swimming, yoga, biking, short climbs–my return to all these sports has been just as amazing as I had pictured they would be. But there was one thing that was still just a series of images in my head:  the multi-pitch climb. Would dealing with my ostomy on a long, hot climb with small belay ledges be as doable as I had imagined? After all, one of the main reasons I chose to have a permanent ileostomy over j-pouch surgery is that I personally felt it would be easier for me to manage on all-day climbs. I was a little nervous about  putting that notion to the test. As I built up strength in the 20 months since surgery, and worked through some hip and shoulder injuries, I continued to wonder what climbing a long route was going to be like with my ostomy.

Last weekend I finally found out as I went with Doug and his brother and dad to climb Devils Tower in Wyoming. We had all climbed this famous rock formation in 1992 and were excited to give it another go. This reunion-style climb with my family was more than I could have ever asked for as my first post-surgery multi-pitch climb. Being back on the rock with all of them was a blessing.

Our gang on the summit of Devils Tower, WY, 20 years ago.
Our same team on the summit in 2012.
We are tired and thirsty, but safely back at the base.

The 15-minute video below highlights our adventure on the Tower. As I watch it myself, I am in awe at how similar the real images are to the little movie that played in my head in the hospital. For climbing and so many other aspects of my life, the things I imagined and hoped for with my ostomy did turn into reality–a truly amazing reality.