Tag: ulcerative colitis

Part one in a series: I am thankful for the small moments

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Going through the challenges of the past 18 months has really changed the lens through which I view my life. If I was to describe my new outlook with a single word, it would be gratefulness. With Thanksgiving fast approaching, I have decided to feature a series of posts over the next week on some of the things I am most appreciative of (in no particular order). Starting off the list:

The small moments
I love those little things and moments that remind me that life is absolutely breathtaking and fun. Here are a few that come to mind for this year:

  • A donkey lives at a farm along one of my favorite running routes. It had been a while since I had seen him, but last week I finally made it far enough to reach his pasture. I have probably passed by him around a hundred times since he first showed up in the green field as a baby. I never stop hoping he is close to the fence when I reach that point on my run. He was far away this time, but that didn’t stop me from trying to lure him closer with bundles of grass and my own donkey calls. Though these measures didn’t work, I could still see his spiky mane and light muzzle in the distance and they made me smile.
  • The aspen trees were particularly gorgeous in Colorado this fall. One evening when visiting with some vacationing friends in Fairplay, I stole away from the house alone and strolled across the crunchy forest floor in a nearby grove. The setting sun shone through the semi-transparent golden leaves and made them glow. As I gazed up at their shapes against the blue sky, it reminded me of looking through the most beautifully illuminated stained glass. I leaned against one of the trees and closed my eyes, listening to the sound of the leaves dancing on the branches and smelling the intoxicating aroma of the ones resting on the ground. At that moment, I was purely alive.

  • Last February Doug and I sat in the second row at the Wailin Jenny’s concert– one of our favorite bands. The harmonies gave me goosebumps and the sound of the violin put a lump in my throat. I held Doug’s hand, rested my head on his shoulder and was pretty sure there was no better place on earth to be at that moment than right there.

Little things like this are hiding in each and every day, just waiting to be noticed. Not only am I thankful for the small moments themselves, but also for my ability to see them. I know my life was full of such moments before, they just shine so much more vividly now.

Check in tomorrow for the next post in the series on the things I am thankful for.

All seems well surrounding my stoma

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I am relieved to report that when I woke up this morning, the pain I was experiencing around my stoma yesterday was gone. As it was my appliance changing day, I showered without my pouch and wafer on and palpated the area around my stoma really well. Everything felt fine–no pain, swelling or weirdness of any kind. Whew! I am confident now that what I was experiencing was just a sore muscle.

It is interesting that normally I get a bit excited about sore muscles the day or two after a workout. It is usually a sign that I worked hard during an athletic activity and took things to “the next level.” However, when I feel such soreness in the muscles around my stoma it doesn’t make me feel good; it makes me fearful. I don’t know how to get over that. I guess whenever those muscles get sore from a workout and then the tenderness resolves as it did today, I will get more confident that all is okay.

I did end up going out for a run today. I still felt a few minor twinges of soreness around my stoma as I was bouncing down the trail, so I kept the pace extra slow and only ran for 30 minutes. Tomorrow I work and have my local ostomy association monthly meeting in the evening, so I will take another rest day from running. Hopefully by the following day I can start going out each evening again. I am finding that out of all the activities I am returning to after surgery, running is coming back to me the slowest. Even short runs tire me out so much more than hiking all day up big peaks with a pack did over the summer. I hope that this starts to change this winter. I am really yearning to get back out on some of my favorite trail runs, but they would still be too hard at this point. Didn’t I just tell myself to be patient yesterday? Darn, I already forgot!

When to be patient? When to push?

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It is obvious when reading my blog that I am happy with my ostomy and super thankful for the surgery. However, there are still days on which the fears capture me. This morning when I woke up, my abdomen was unusually sore to the touch in about about a 3-inch perimeter around my stoma. It has been a while since I have had ostomy-related pain of any sort, but I was instantly taken back to those days after surgery when I was desperately trying to sort out what was normal pain and what might be something serious. I had a short period of intense anxiety issues after my surgery due to some complications (I hope to write a little more about this in a future post), and this morning I was back in that place for a moment.

My stomach clenched up and my head spun in a storm of worry thinking about all the things that the pain could be from. I knew the pain had nothing to do with a blockage, my output was completely normal in consistency and quantity. In a moment of rational thought, I remembered all the exercise I had done during the week. Two nights ago, I had upped my workout at the climbing gym. It was the first time I had ventured onto more vertical routes– still easy but slightly more strenuous than the slabby ones I had been doing. This week I also went from running every few days to running 30-45 minutes each evening. The runs I had been doing previously were short mileage-wise and slow, but last night, I felt carefree and energetic, and I ran faster than at any time since surgery. It was invigorating to fly down the trail at a brisk pace and with no rests. I couldn’t wait to go again today.

But now this pain. I really hope I didn’t overdo anything and cause injury. Tomorrow is my appliance-changing day, and I will get to take a better look around the area. In the meantime, I am actually relieved that the muscles on the other side of my abdomen are starting to hurt as are my calves. That means that the pains around my stoma are likely nothing more than sore muscles too. I am going to guess that they just came on sooner and fiercer because that side is much weaker. I canceled my run for the day and went for a speedy walk instead.

One would think that a year after surgery, especially with all the hiking I have done, that my body would be ready for such a workout. When I am feeling so well and healthy, it is incredibly difficult to know how hard I can safely push myself. The little pieces of colored tape marking even the 5.7 rated routes (an easy-to-moderate grade) at the climbing gym keep tempting me, as do the steeper trail runs. How will I ever know when I am ready for these? I wish that there was some kind of manual that said 365 days after surgery you should be able to do A, B and C. Seeing that there is a much higher likelihood of going downstairs and finding a sloth sitting at my dinner table holding a fork in his three toes than acquiring such a publication, I will have to continue to proceed through trial and error.

I hope tomorrow when I poke around my stoma that everything feels great, and that I can slip on my running shoes once again and hit the trails… albeit with the pace turned down a notch. Patience, Heidi, patience.

Another view of Heidi’s story

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My name is Doug, and I’m the lucky one who is married to Heidi, the champion of the effort called Ostomy Outdoors.

When Heidi started this blog six months ago, I didn’t imagine that I would be writing in it myself. You see, I’m not an ostomate. But I live with an ostomate, and I’ve become intimately familiar with a whole new world of experiences, vocabulary, and feelings related to ostomies, surgeries, and recoveries.

We digitally recorded a happy moment between a painful wound-packing session and a slow recovery walk last winter.

I found out from Heidi that it’s not just people considering ostomy surgery who are reading this blog and watching the videos. Some readers are people like me: intestinally healthy friends, family, and acquaintances of those who have IBD, Crohn’s, ulcerative colitis, and/or ostomies. So, I figured it was time to diversify the writing a bit on Ostomy Outdoors, and try to provide not only a different perspective for this readership, but possibly serve as a sounding board for the “others” who are in the lives of readership.

Continue reading “Another view of Heidi’s story” →

Celebrating my first year as an ostomate

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Today is the one-year anniversary of my ileostomy surgery. I thought about climbing a mountain to honor the 0ccasion, but decided to celebrate by enjoying a normal day. After all, as much as I love getting outside to challenge myself, it was the simple everyday things in life such as being able to go to work, eating a regular diet, and hanging out with friends and loved ones that I most longed to do when I was sick and then recovering from surgery. So, today I woke up and enjoyed my drive up to the park where I work. On the way, I could see the freshly snow-dusted mountains of the Continental Divide in the distance and was grateful for such a spectacular commute. At my job, I contentedly worked on an kid’s owl night hike that I will be presenting soon. After work, Doug and I had dinner with some friends. We joked that we should have a party with stoma-shaped cookies and a commemorative all-liquid dinner, but we opted for pizza and beers instead. It was a wonderful day, and it was the perfect way to top off my challenging yet life-renewing first year with my ostomy.

Enjoying pizza and beer on the 1-year anniversary of my surgery.

Last year, the day of my surgery was full of much different experiences, but was also a celebration of sorts. I remember waking up in the morning and breathing a huge sigh of relief. As we drove to the hospital at 5:15 a.m., I was scared and nervous, but also felt a profound sense of peace as I rested my head against the window and gazed up at the stars, pondering what my life without the sickness and pain of ulcerative colitis was going to be like. I checked into the hospital and made my way to pre-op, finally feeling secure that nothing was going to get in the way of my surgery.

Continue reading “Celebrating my first year as an ostomate” →

A dot marks the spot

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It was a gorgeously sunny October day last year when I packed up my harness and backpack and headed out the door. No, I wasn’t going on a hike or climb. In fact, the place I was traveling to wasn’t even outside. As I arrived at my destination, I walked down the sidewalk and through the double sliding door of the building. I made my way to the check-in line by the front desk and felt somewhat self-conscious with my huge backpack sticking out of a bag slung over my shoulder. A few moments later, I entered the crowded elevator, where people gave me quizzical glances. Such gear would be expected at a trailhead, but it was not the norm here. However, today, having my pack and harness was as important as it would have been on any hike or climb. As the elevator door opened on the ninth floor, I nervously walked to the department down the hall to meet my wound, ostomy and continence (WOC) nurse for the first time. It was time to have the site of my stoma marked.

I had been told to wear my favorite pants to the meeting so that the location would match with my clothing. However, I also decided to bring my harness and backpack. With outdoor activities being a huge passion in my life, I wanted to make sure that my stoma location would work as well as possible with my gear.

The paper cut-out shows where my stoma is. The location between the waist belt and leg loops prevents the harness from rubbing on my stoma. My belly button sits right under the waist belt.

At the meeting, the nurse shared important information about what to expect with output, eating, activities etc. Finally it was time to get the location marked. I felt a little funny explaining to her that along with making sure the spot worked with my belly and with my clothing, I also wanted to test it out with my harness and pack. Fortunately, she didn’t make me feel silly about my request at all, and soon I had a big blue dot on my abdomen about two inches to the right of my belly button and two inches below. This was a good location because it was below my belt line. This meant that gear or clothing waistbands would not rest on my stoma or prevent output from reaching the bottom of my pouch.

When I got home, I stood in front of the mirror and looked at the mark. I tried to picture what it would look like with a stoma there instead. Suddenly, my decision to have the surgery seemed very real, and I felt excited and nervous at the same time. To further discover how my new stoma spot worked with my clothing and gear, I filled up the ostomy appliance my nurse had given me with applesauce and taped it on top of the blue dot on my belly. I then went out to the garage to dig out every backpack I owned. The one I had taken to my nurse visit was my favorite overnight one, but there was also the brand new day pack I had just bought before I got sick again. I had only used it once. And then there was the large load-monster of a pack that I took on very long trips. Would that one work with the ostomy? One by one, I tried on the packs and they all seemed to rest well above my stoma. I was encouraged.

Continue reading “A dot marks the spot” →

What’s in a name? That which we call Wilbur!

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A pumpkin portrait of Wilbur.

When I first heard about my friend Charis’s IBD/Ostomy themed pumpkin decorating contest on her great new Facebook site (http://www.facebook.com/FullFrontalOstomy), I knew I had to enter. However, I had no idea what to do for a design. I went to the store and bought a pumpkin and sat it on my table… waiting for something to come to me.

And it did. While changing my appliance at 6 a.m. my stoma started to act up and spew output. I used to get frantic when this happened, but now I am accustomed to it and just chill out for a while, paper towels in hand and let my stoma do its thing. However, the event did spark the inspiration for my pumpkin. I suddenly knew that the round vegetable on the table would provide the perfect canvas for a portrait of my mischievous stoma! That afternoon, I painted my creation.

Continue reading “What’s in a name? That which we call Wilbur!” →

Permanent ileostomy or j-pouch: that was the question

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One of the questions I get most often from readers of my blog is why I chose to have a permanent ileostomy instead of trying j-pouch surgery. Though I have mentioned a few of the reasons in other posts, I decided to address this topic in a little more detail. The point of this post isn’t to tell you that one surgery type is better than the other. They are both very good options. My goal in this writing is to share the thought process I went through to make my choice.

In the course of my illness, all my symptoms, colonoscopies, and genetic testing pointed to Ulcerative Colitis and not Crohn’s. This made me made me a candidate for either surgery type. At age 38 during the time of my surgery, why would I choose to live with a “bag” for the rest of my life?

It wasn’t a decision I took lightly, and I gathered all the information I could. This began when I was still in the hospital, facing the possibility of emergency surgery. The very kind and helpful general surgeon who would have done my surgery had I continued to decline, visited my room almost every day to check in and patiently answer my seemingly endless questions. He introduced me to the words “ileostomy” and “j-pouch” and gave me a great foundation of information to build on.

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The long haul (feat. new video)

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When I first got out of the hospital around Thanksgiving in 2010, I was overwhelmed with my ostomy appliance. I remember calling Doug on the phone in tears the first time I tried to change it on my own. Output had gotten all over the place, there was way too much skin showing around my stoma, and I had put the one-piece pouch on quite crooked. Doug had gone to the airport to pick up my Mom so that she could help take care of me during my recovery and wondered why I hadn’t waited until they got home so that they could assist with the change. I didn’t have a good answer. I have a fierce independent streak, and I wanted to prove to myself that I could do it on my own. However, after that disaster I quickly realized that I wasn’t ready. I needed their help, and Doug or Mom assisted me with every single change in those initial weeks.

Though I was feeling better about my appliance after a few weeks, I still wasn’t all that efficient or confident at changing. So I went back to my stoma nurse for a refresher. She gave me some more tips which helped and soon I could change my appliances by myself. Still, it was the one thing ostomy-related that made me cry out of frustration time and time again. My stoma always created output during the change, making things take a long time, and I struggled to get my pattern cut to the right size. I constantly worried that I wasn’t getting things perfect and that I was either going to strangle my poor stoma or that my skin was going to get eaten away from cutting the wafer too big. It was at these times that I had my biggest moments of doubt about backpacking. If I couldn’t even handle doing the changes in my house, with hot running water and oodles of washcloths at my fingertips, how would I possibly do it out in the wilderness? No matter how I tried, I couldn’t picture it as a reality.

The problem was, I was jumping to step 20 when I should have been concentrating on getting the basics down. I realized this was causing undue stress and anxiety, and I began to focus more on the moment and tasks at hand. I could figure out the backpacking part later.

Continue reading “The long haul (feat. new video)” →

Back to climbing

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“The scariest thing for me through this whole ordeal has been the rapid weight loss over the past two weeks. My muscles are gone and when I squat down to the floor to pick something up, I can barely get back up. I feel like I am doing the hardest move on a rock climb just to do some simple movement. I try to do a couple walking laps in the hall everyday to stay strong and keep my legs moving. I just want to be healthy and well again.”

Around this time last fall, I emailed the above update to a couple of good friends while I was in the hospital with my UC flare. I was so weak that it was difficult to do even the most basic things, like stand in the shower or walk up the stairs. I seriously wondered if I would ever be strong enough to rock climb again.

Last night, thanks to the health I regained through surgery, I made my first trip to the rock climbing gym in over a year. At first it felt foreign to put my harness on and tie my figure-8 knot, but once I placed my hands and feet on the holds and began ascending the wall, the movement felt natural to me.

On my first route in over a year

Continue reading “Back to climbing” →