When to be patient? When to push?

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.

A dot marks the spot

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.

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Permanent ileostomy or j-pouch: that was the question

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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Back to climbing

“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

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