So honored!

It always feels good to get recognized for something, but it is extra special when an award comes from a peer. These folks know the amazing amount of work and passion that can go into a project because they  devote their time and energy to the similar things. About a month ago, fellow blogger Joyce Lameire nominated me for a Versatile Blogger Award. I am incredibly honored that she thought of me. Joyce has both ulcerative colitis and ankylosing spondylitis (AS). Joyce’s blog, ankysponwhat.com features posts about treatments, managing pain and AS news. Lately Joyce has been writing a series of posts that delve into her history with the disease. For those who don’t know, ankylosing spondylitis is often associated with UC. Though I don’t have AS, I have been learning a lot about the disease through her site and would highly recommend checking it out.

In order to accept a Versatile Blogger Award, the following rules must be followed:

  • Display the award certificate on your website.
  • Announce your win with a post and link to whoever presented you with the award.
  • Present 15 awards to deserving bloggers.
  • Drop them a comment to tip them off after you have linked them in the post.
  • Post 7 interesting things about yourself.

It should be no surprise that most of the blogs I follow are IBD-related. There are so many blogs that I absolutely love but I won’t be able to include them all (the list would go on for pages). Here are are 15 of my favorites and the reasons I find them so special.

  • Full Frontal Ostomy Charis, long before we both had blogs, was the very first person that I reached out to online when I was facing ostomy surgery. She is a positive role model and I love her blog and all she does to spread ostomy and IBD awareness.
  • Blood Poop and Tears This is one of the very first blogs I read when I had IBD and then surgery. I love Jackie’s honest account of her life with IBD.
  • Girls with Guts This website and blog is put together by Charis and Jackie (who author the two blogs above). One of the site’s many features are stories of women who have strongly faced the challenges of IBD. Girls with Guts is a huge source of inspiration for me.
  • Inflamed and Untamed Sarah so often puts the exact things I am feeling into words. She does an amazing job of describing the emotional aspects of having IBD and many times I am brought to tears by her writing because I can relate to it so well.
  • Rollin with Outta Colon Cary is an avid cyclist with an ostomy and his blog posts are an artful blend of thoughts on biking, music, photography and the realities of living with an ostomy and the pain of chronic illness. Cary’s posts are full of depth and insight and really get me thinking.
  • Living Bigger with a Colostomy Paul is a fellow outdoor adventurer and I’m inspired by reading about all the things he does with his ostomy. His life is proof that an ostomy does not have to stop a person from doing the things they love.
  • Run Stronger Everyday Even though my running plans have been sidelined due to hip woes, I love reading Abby’s blog. She has been through ostomy surgery and now has a J-pouch. I am not sure when I will be able to return to running (definitely not before my Rainier climb since I can’t risk getting injured), but her blog helps keep me motivated for the day I once again lace up my shoes for a jog.
  • Living Life and Lovin’ It Megan is a newcomer to the ostomy blogging community. I love how she writes about her ostomy experiences in some posts and then things as diverse as chickens and pitcher plants in others. Life is a beautiful mix of so many things and her blog celebrates that.
  • Amazing Adventures- Ostomy Included I only recently discovered this ostomy-and IBD-related blog and am already hooked. Just reading the author’s story reminded me so much of my own—right down to the post-surgery incision complications that I frustratingly faced after surgery. I love this blogger’s adventurous spirit and thoughtful writing and can’t wait for future posts.
  • Gutless Cyclist The author of this blog has also had some health setbacks recently. Despite this, he stays positive and works hard to get back on his bike. Reading his posts fills me with inspiration.
  • Theflowrylife This blog was only started in November 2012, but is already one of my favorites. I love the author’s focus on mindfulness and enjoying the present moment.
  • Love for Mutant Guts It has been great to see Alyssa’s confidence as an IBD health activist grow through her blog. She always has a kind and encouraging word to say too.
  • A Guy with Crohn’s Jeffrey does a great job of spreading IBD awareness. I enjoy reading his posts on a wide variety of topics including gluten-free cooking. To top it off, Jeffrey recently took part in the WEGO Health Health Activist Writer’s Month Challenge and managed to write a post a day for 30 days. I sometimes have trouble writing a post every couple of weeks, so that is a major accomplishment!
  • Intense intestines When I first stumbled upon Brian’s blog I couldn’t believe it. Here was another outdoor-loving person who had gone through ostomy surgery one day after I had. The organization Brian started, The Intense Intestines Foundation, has grown to become one of the most incredible resources for those with IBD.
  • Squirt’s blog Donna is a fellow nature-loving ostomate with an adventurous spirit and that shines through in her blog. She does so much to spread ostomy awareness. I am pretty sure if Donna lived closer, we would be meeting up to explore forests, streams and fields on a regular basis.

Now for the seven interesting  tidbits about my life:

  • I have way too many hobbies. As if the plethora of outdoor sports I enjoy aren’t enough, I love drawing, painting, printmaking, journaling, sewing, tying fishing flies, storytelling, writing, drumming and playing the guitar. Whew! The upside–I can’t remember a time that I was ever really bored.
Drum circle fun.
Playing my djembe.
  • I can do an awesome squirrel voice. This comes in handy for the above-mentioned storytelling hobby and the many puppet shows I conduct for kids as a park naturalist.

    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters.
    My squirrel voice was first developed for the puppet on the right, but has since been used while impersonating a variety of rodent characters. (Oh, and I also hand-sewed these three puppets.)
  • Weather fascinates me. Ever since I spotted a twister that came within ½ mile of my house as a child, I have been interested in weather. I have the National Weather Service radar bookmarked on my computer and could watch clouds all day. I was bummed that all my hospital room windows faced east when I was stuck there during my UC and surgery recovery. It drove me crazy to not be able to see the weather coming in from the west.
  • Social media wears me out. Though I enjoy public speaking and teaching, I am a total introvert at heart. I am the person at parties who you see having an in-depth conversation with someone in the corner instead of mingling. In the same way, I love interacting with people one and one through blog comments and emails. However, I definitely fall short in the realm of social media. The pace of Facebook and Twitter is crazy and by the time I process all the information and think of what I want to say, posts are already dead and buried. And I find writing within the 140 character limit of Twitter nearly impossible!
  • I drive a pink scooter. In an effort to keep my carbon footprint as small as possible, I make my 28-mile round-trip commute on my scooter when the weather cooperates (my bike gets 90-95 mpg). With my pink helmet and blond ponytail, I must look like Barbie going down the street because I often get waved to by little girls.
Heading to work on my scooter.
Heading to work on my scooter.
  • I love gummy candy. I try to eat healthy, but I have weakness for gummy bears, octopi, worms or whatever crazy-shaped creations I can find in the candy aisle.
  • I was a really creative kid. When I was a child, my parents set up art studios in the basement for my brothers and I, and stocked them with markers, paints, papers and all sorts of materials. I would spend hours down there drawing and creating art projects. I also used to develop my very own book order forms for my parents to fill out. Once they marked which titles they wanted, I would make little books and write a tale within the pages so that I could fill their order. My brothers and I also used to type up scripts and song sheets for shows and then perform them for our family.
Sitting in my homemade cardboard sleigh during a one of our Christmas productions.
Sitting in the homemade cardboard sleigh during act one of a Christmas production.
Act two involved some singing complete with a microphone. Now if only I actually could have carried a tune!
Act two involved singing in an elf costume (with a cool microphone)! Now if only I could have actually carried a tune.

Back to the GI doctor’s office

Monday I found myself in a place that I hadn’t been to for a very long time: my GI doctor’s office. After having permanent ileostomy surgery for my UC, I wasn’t sure if I would ever need to be seen there again. However, for the past ten months, I have had canker sore-like ulcers show up on my stoma off and on in different places. I actually noticed the very first of these ulcers while changing my appliance on a backpacking trip last June. I remember calling for Doug through the woods so he could come snap a photo of it. I think he thought I was being cornered by a bear! (joking)

That ulcer was rather deep, and after showing a photo of it to my surgeon, he thought it might be trauma-related and caused by a nick in my stoma. It healed up in a few weeks, and I thought that was that. However, in the autumn I got a couple more ulcers, and since that time, I have had more of them show up and at more frequent intervals. In fact, I have a new one today. The ulcers heal quickly (sometimes too quickly– it is hard to time an appointment with my doctor when they are actually there) and don’t seem to cause any problems. Because the ulcers are a recurring issue, I shared more photos of them with my surgeon and he suggested I have them further investigated at my GI doctor’s office.

I have an awesome GI doctor, but for much of my life with ulcerative colitis, I worked with an equally amazing IBD nurse practitioner. When you have chronic conditions and end up seeing your doctors and nurses again and again, you can really develop a strong and trusting bond with them. My nurse practitioner is a very caring individual and she has worked with me during my worst UC moments. I hadn’t seen her since I was extremely ill and lying in a hospital bed during my final severe UC flare two and a half years ago. It was great seeing her again under much better health! Of course, last week’s ulcers had conveniently healed just in time for the appointment, so I once again had to rely on photos of the ulcers to explain what was going on. Thank goodness Doug is a stoma portrait photographer extraordinaire and we have been documenting the ulcer activity pictorially for months.

After looking at the photos, my nurse felt that the ulcers could be a sign of active IBD. She didn’t call it Crohn’s disease, but said that the ulcers are likely caused by the same inflammation process involved in IBD in general. She talked about how many different genetic factors are showing up in research related to IBD. What is thought of as Crohn’s or ulcerative colitis could actually be a group of different diseases which makes things hard to pinpoint in some cases. (This is my recollection of what she said anyway… I am not the best at explaining medical stuff from memory.) Regardless of the name, the suggested treatment for me was the same: a low dose of Pentasa to see if it helped resolve the ulcers. If the drug does resolve the ulcers, it would be a sign that I am dealing with IBD. If  the ulcers would actually cooperate and show up when I am scheduled for an appointment, I could also get them biopsied to provide a more definitive diagnosis. There is also a possibility that the ulcers could be caused by a virus, but that is less likely due to the recurring nature and how long I have been experiencing them. All in all though, this is a really minor thing. The ulcers seem confined to just my stoma, no other symptoms come with them, and I feel great. My inflammatory markers were fine as well. My nurse said stoma ulcers do happen for many people without progressing up the intestines. That was great news to hear.

When I was sitting in the pharmacy waiting to have the prescription filled, I found myself reflecting on the possibility that my disease was returning– even if only mildly. The weird thing was– I was not worried about it at all. I always thought that finding out my IBD might be back would be terrible news. I would have expected to be scared, disappointed or something along those lines. However, now that I was actually facing that possibility, all I felt was a sense of calm. For someone who has been plagued by anxiety lately, this new found feeling of peace was refreshing.

I didn't expect to read "for inflammatory bowel disease" on a medication label again!
I didn’t expect to read “for inflammatory bowel disease” on a medication label again.

I really can’t put my finger on the one thing that has led to this new outlook. Be it bones or intestines, I am discovering that I am far less worried about my medical issues lately– so much so that I was able to stop taking anti-anxiety meds over a month ago. I went to see a counselor and also went to some anxiety management group sessions which have helped me look at things in a new way. My mindfulness meditation practice has been important in helping me focus on the present too. The positive thoughts and prayers sent by family and friends have also been paramount. I have also been more in touch with my spiritual side which has brought peace.

Another big source of comfort is knowing that I have been blessed with some of the most incredibly kind and skilled doctors and nurses on the planet. Not a day goes by when I don’t think about how grateful I am that everything somehow came together to have each of these individuals on my healthcare team. I know they truly care about my well-being. I can relax knowing that if things should get worse with any of my health conditions, I am in really good hands.

Overall, if I had to sum up the reason I am feeling so good about things lately in one word it would be this: trust.

I trust that I am strong enough to get through anything. I trust that my family and friends will be there to lean on. I trust that my medical team will do their absolute best to take good care of me. I trust that I will always be able to help others by sharing my experiences. And I trust that whatever path I find myself on, I will make it the best journey possible.

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.

The My Hip T: a great product for ostomy pouch coverage

I have always been a bit of a gear junkie. I like having just the right backpack, sleeping bag or outdoor clothing for the specific adventure I am embarking on. This plethora of outdoor gear often comes at the expense of other things. For instance, our home furnishings are a hodge-podge of hand-me-downs. Living room color scheme—what’s that? New couch or climbing gear? The climbing gear wins every time.

I have found that just as I like the right piece of outdoor gear for a given objective, so do I like to have specific ostomy products for different circumstances. I love my Ostomy Secrets swim wrap for trips to the pool. My Vanilla Blush undies are really comfy under my jeans for everyday wear. Comfizz boxers are my favorite item for holding my ostomy pouch and hernia belt in place when I rock climb. Each of these products is unique, and I wouldn’t want to be without any of them. I always promised myself after surgery that I would not hold back on getting the ostomy items I needed to make me feel comfortable and confident—even if it meant cutting other things out of the budget.

Recently, I had the opportunity to try a product that has a very unique niche in my wardrobe and has become one of my favorite ostomy-related clothing items: the My Hip-T.  I had never heard of this product before, but last summer the designers of the My Hip-T sent me a few samples at no cost to test out and provide feedback. They have customers who wear the My Hip-T to cover ostomy pouches as well as diabetic insulin pumps and wanted my thoughts and feedback on the product. After testing the garment out, I loved it so much that I have wanted to write a blog post about it for some time. A deluge of difficult news lately put a damper on wanting to write about much of anything, but I am feeling more at peace with all the things that are happening and am ready to blog about all my favorite ostomy subjects.

Showing off the grey colored My Hip-t.
Showing off the grey colored My Hip-T.

As ostomates, we often hear about many of the products that are designed specifically for life with a stoma. However, there are many mainstream items out there that are very helpful too. The My Hip-T is a stretchy cotton wrap that is actually designed to help conceal the bum exposure and muffin top that so often occurs with lower-rise jeans. The tube-top-like garment goes over the upper portion of your pants and ends up looking like a nice layer when worn under a shirt.

Since surgery, many of my favorite shirts have ended up at the back of my dresser drawer because they are just a little too short length-wise and expose the part of my ostomy pouch that sticks out above the waistband of my pants. The My Hip-T has allowed me to re-introduce so many of these much-loved items back into my wardrobe.

I generally do not have good luck with the regular ostomy wraps that are designed to wear under jeans, skirts and trousers. My stoma is located lower on my belly, and the bottom of my ostomy pouch extends past the bend in my leg. When I try to wear an ostomy wrap to cover my entire pouch from top to bottom, it always rolls up near that crease in my leg. As it rolls up, it cuts off the flow to the bottom half of my pouch. The My Hip-T is different. Because it is designed to be worn over the top of your jeans, it clings very well to the fabric and stays in place. The My Hip-T fits snugly around my hips without being too confining and does not block the flow of output from reaching the bottom of my pouch.

Ostomy-specific wraps that are designed to be worn under my pants often cut off the flow in my pouch due to the crease in my leg.
Regular ostomy-specific wraps that are designed to be worn under my pants often cut off the flow to the bottom of my pouch when they roll up at the crease in my leg.

When I want to be absolutely sure my ostomy pouch won’t show when I reach for something and my t-shirt rides up, or if I am wearing something form-fitting, I usually wear higher-waisted ostomy underwear. They do a great job at hiding my pouch without rolling up, and I wouldn’t want to be without them in my clothing quiver. However, sometimes it is nice to wear my comfy non-ostomy undies and just let my ostomy pouch flop over them. The problem with this is that it leaves the top of my ostomy pouch exposed above my pant’s waistband. The Hip-T has given me another option for smoothing out and concealing my pouch when I don’t feel like wearing ostomy-specific underwear. It is so easy to throw one on at the last minute and have confident coverage. If I am traveling, I automatically put one into my luggage. I know that no matter which jeans or shirts I packed, my pouch will be easily concealed with the My Hip-T.

When I wear t-shirts with shorter hem lines, my pouch often shows above my jean waistband.
When I wear t-shirts with shorter hem lines, my pouch often shows above my jean waistband.
Th My Hip-T provides coverage for my pouch.
The My Hip-T provides great coverage for my pouch.
When worn under shirt, the My Hip-T looks just like a layering piece without all the extra bulk.
When worn under a shirt, the My Hip-T looks just like a layering piece without all the extra bulk or warmth.

My Hip-Ts are made out of a thick spandex cotton fabric. It is soft and looks just like a layering t-shirt or tank under my shirt but without the added bulk or warmth of a whole second layer. The product comes in basic colors, prints or an option with lace on the bottom. The one with lace looks pretty with some of my dressier shirts.

The My Hip-t comes in a version with lace on the bottom edge.
The My Hip-T comes in a version with lace on the bottom edge.

As soon as I discovered how handy My Hip-Ts were for everyday wear, I decided to give them a try for active outdoor sports. I wore one over my running tights on a trail run and was pleased with it. It held my hernia prevention belt in place well and kept my pouch from flopping around. It concealed my pouch well with my running tights and tank.

I always wear a Nu-Hope hernia prevention belt when I run.
I always wear a Nu-Hope hernia prevention belt when I run.
The My Hip-t held my hernia prevention belt in place well and helped conceal it-- even in form-fitting running clothing.
The My Hip-t held my hernia prevention belt in place well and helped conceal it — even in form-fitting running clothing.

Overall, I am impressed by this piece of clothing. At $19.95 each, the price of the My Hip-T may seem a little high at first glance, but the quality is great and mine have held up well through multiple washes. It is also made in the USA. The product can be purchased in a two-pack which reduces the cost per item. My Hip-Ts can be found at: www.shophip-t.com.

Thanks to the My Hip-T, I won’t have to part with some of my favorite t-shirts and blouses that had hemlines that didn’t work well with my ostomy.  However, that doesn’t mean a trip to Goodwill still isn’t in order. Hmmm–maybe it is time to get rid of that dress that I sewed to wear at my friend’s wedding back in the late 1990s!

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.

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!

Happy travels! (feat. new video)

Last month, I wrote about a climbing road trip that Doug and I took to Idaho and Oregon. We finally completed a video highlighting the vacation. It is a long film at 30 minutes, but there was a lot to cover on this 17-day adventure.

Getting out and traveling with your ostomy provides some very significant confidence-building opportunities. You have to change and empty your appliance in unfamiliar surroundings and you must learn how to adapt to having an ostomy in unique situations. Unknowns abound with each bend in the road and each new town on the map. Dealing with each of these new situations stretches your comfort zone and leads to growth and tenacity. So, if you are just recovering from surgery, plan a trip if you can — even if it is just a weekend getaway.  If you have had your surgery for a while, get out on a longer excursion and try something new.

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.