Patience and progress

It’s as harsh out here as on top of peak in a snowstorm. This thought pounded in my head as I cross-country skied down a slope in my second-ever biathlon. The wind was blowing against me so strongly that I had to use my poles to make downward progress. I was freezing in my minimal layers, and I felt eerily alone on the course with no one in sight and snow swirling all around me. The weather was declining rapidly, and I was relieved to be on my final of five laps.

In the distance I could see the biathlon range as I steadily made my way up a final incline. Snow was filling in the trail with drifts, and I felt like I could have walked faster than I was skiing. All that powder would have been much beloved if I were out snowboarding, but I didn’t much appreciate it in a Nordic race. As I got closer to the finish line, I could see the person recording times from a stopwatch. It seemed to take forever for me to reach him. But I finally made it! I finished the race and was super happy that I stuck with it and did not give up. I couldn’t remember doing anything that felt so physically strenuous– not even hiking up Mt. Rainier. Skate skiing is one of the most aerobically intense activities I have ever done.

Happily leaving the starting line before the wind and snow picked up.
Happily leaving the starting line before the worst of the storm blew in.
I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets!
I could barely stand up in the wind after shooting in the prone position. Miraculously, I actually hit four of five targets at 50 meters away!

We wrapped up the weekend with more fun. After completing the race, we stayed overnight at Snow Mountain Ranch/YMCA of the Rockies (the place where the biathlon was held) and even hit up the climbing wall in the pool. The next morning, we got up early and drove to Copper Mountain to go snowboarding.

A little post-race climbing at the pool.
A little post-race climbing at the pool.
Powder day at Copper Mountain!
Powder day at Copper Mountain!

When the event results came in a day later, I discovered that I had the slowest pace of anyone who finished any of the various distances. It wasn’t a surprise. This is a new activity for me and I didn’t expect to be good at it right away. I had been working on my shooting a bit, but had put very little attention into becoming better at skate skiing. That changed last weekend when I took a beginner lesson and picked up countless tips that will help me improve. I also plan to begin working on my cardiovascular fitness again by running and going skate skiing as much as I can. I know it is going to take a lot of time and many little steps to get better at the sport.

That reminded me a lot of getting back into the fitness activities and sports I loved after ostomy surgery. Like training for biathlon, it wasn’t a quick process. One of the most common questions I get from blog readers is how long it took me to get back to “X” activity. Since a lot of information on that subject is buried in other posts, I thought I would create a summary of how long it took me to return to activities and what some of the challenges were. Keep in mind that I did have some significant complications with my abdominal incision healing due to a rare reaction to my particular suture material. This extended my healing time.

Snowboarding:  I did this activity for the first time at around five months post-op, but because it was the end of the season, I was only able to get a few days in. I was surprised at how effortlessly the movement of boarding came back to me after losing so much strength after surgery. The most difficult part was getting back into a standing position after taking a tumble. Due to the crunch-like movement involved, it felt hard on my core. I wore (and still wear) a six-inch wide hernia prevention belt to help support my abdominal muscles. At first I was also careful to not venture onto icy terrain since falling onto my butt hurt the area where my anus had been removed. By the next season (about a year post-op), all that pain was gone and I was able to return to my pre-surgery level of boarding.

Getting up after all the falls on my first post-surgery snowboarding trip was tough on the abs!
Getting on my feet during my first post-surgery snowboarding trip was tough on the abs!

Hiking and backpacking: I went on my first backpacking trip at around five months post-op as well. I checked with my surgeon to make sure carrying 25 pounds was okay and then headed into the backcountry at the first opportunity–which happened to be a very cold and snowy April weekend!  Once again, I wore a six-inch wide hernia prevention belt and was mindful to keep the weight in my pack light. Doug carried many of my things and helped lift the pack onto my back. Once it was centered on my legs, it didn’t strain my abdominal muscles at all. The cold made this first trip with my ostomy difficult, but I was happy with the extra challenge. I knew if I made it through that, warm weather adventures would be easy.

After this trip, I kept hiking every weekend and slowly upped the distances traveled and amount of weight carried. I went on a few more overnight trips and began hiking 14,000-foot peaks. I remember walking like a turtle on the first one, but I just kept at it. By ten months post-op, I was able to go on an eight-night backpacking trip carrying 52 pounds.  Through all these adventures, I was continuously experimenting with supplies and techniques for dealing with my ostomy outdoors and I tried to put myself in challenging situations to maximize my learning and face my fears. For instance, I could easily have changed an appliance before a wilderness trip, but instead I would purposely wait to do it in my tent in the backcountry just so I could get the practice and become confident with my ostomy in those situation.

A little snow couldn't keep me out of the backcountry once my surgeon gave me the go-ahead to carry a pack again at 5 months post-op.
A little snow couldn’t keep me out of the backcountry once my surgeon gave me the go-ahead to carry a pack again at 5 months post-op.

Running: I waited seven months after surgery to go running and I progressed really slowly. For whatever reason, this activity made me much more fatigued than hiking or backpacking. I also had pains in various areas of my abdominal wall (almost like a stitch or side-ache in the muscles surrounding my stoma) for almost a year after surgery. I never knew exactly what caused this, but it always felt okay again a day or two after running so I chalked it up to muscle fatigue. After all, I had been cut open from belly button to pubic bone. That is bound to affect the abdominal wall a bit! Eventually those muscle aches went away and now I am able to go on long runs with no discomfort. I also wear a six-inch wide hernia prevention during this activity to help support my abdominal wall.

Jumping for joy on my first trail run which happened a little over a year post-op.
Jumping for joy on my first trail run which happened a little over a year post-op.

Rock climbing: This is the activity I took the longest to return to. Climbing involves many twisting and stretching movements and a lot of physical exertion. My surgeon never said I had to wait a year to go, but that is what I decided to do in order to give myself plenty of time to heal. I knew my ostomy was permanent and I wanted to do everything in my power to reduce the possibility of a long-term injury like a parastomal or incisional hernia. I was willing to wait as long as it took for my body to tell me I was ready. In the meantime, I worked on hiking and backpacking so it never felt like I was sitting around waiting to climb. To get stronger while I was waiting, I worked with my physical therapist to strengthen my core with gentle and safe exercises. By eleven-months post-op, I finally felt that I was strong enough to rock climb. I started in the gym by ascending routes that were easy and low-angle. Then I started to do the same outside. Over the following year, I slowly bumped up the difficulty of routes I was attempting and ventured onto more vertical terrain. At 22 months post-op, I led my first easy sport route. Now that I am over three years out from surgery, I am climbing in the gym on a weekly basis, doing overhanging routes and am back to scaling rock walls at my pre-surgery level. The only thing that I have yet to do is return to leading traditional routes where I place my own gear. Just like with every other strenuous activity, I always wear a six-inch hernia prevention belt.

Leading a climb at Shelf Road in Colorado this fall. I was back to leading sport climbing routes 22 months after surgery.
Leading a climb at Shelf Road in Colorado this fall. I was back to leading sport climbing routes 22 months after surgery.

Yoga: Like rock climbing, I waited a year to do yoga. I know I could have gone earlier, but I was busy working on the core exercises with my physical therapist and decided to wait to try yoga until my incision area felt solid. Interestingly, I found corpse pose to be one of my most uncomfortable poses. Lying on my back made my incision area ache like crazy. I think this was the result of horrible posture during the first four months after surgery when my incision was extremely painful. During that time, I was protective of the area, and I found myself walking in a hunched-over position. It took a while to reverse that and make my muscles to feel okay with being lengthened again. Nowadays, corpse pose feels fine and the only thing I still have trouble with are bridge positions. My body tells me to go easy on those and so I do!  I wear a hernia belt while doing yoga too, but switch to a four-inch model as it is easier to bend with that width.

Bicycling: This sport was gentle on my body and would have been perfect after surgery save for one thing: my butt hurt from having my rectum and anus removed. And this pain was not quick to go away. It took almost a year for the deep muscles in that area to feel like normal again. Fortunately, once I hit six months-post op, my pain had at least diminished enough that I could sit on the seat without too much discomfort. Now I can spend hours on the saddle with no issues.

My first bike ride at six months post-op: a short jaunt to see a Rockies game. It did hurt my healing butt a bit, but was tolerable.
I took my first bike ride six months post-op when Doug and I pedaled a short distance to see a baseball game. It did hurt my healing butt, but was tolerable.

As I get into my new sport of biathlon, I realize that it is going to take a lot of hard work and patience to get better. I know someday when I am skiing a bit more efficiently and faster, those early times when I struggled up the hills or felt like taking a nap in the snowdrift will seem like a distant memory. It was that way with my ostomy. Getting back to my pre-surgery activity level took perseverance.  My progress sometimes seemed dauntingly slow. However, as I moved towards that goal, I celebrated each small victory. Before I knew it I was back on my favorite slopes, trails and rock faces and my life was richer for all the tiny but amazing steps that got me there.

“It is good to have an end to journey toward; but it is the journey that matters, in the end.”
-Ernest Hemingway

Me and my wound vac going for our first trail hike after surgery. I traveled a whopping 1/8 mile and I was thrilled. After having major incision healing complications, this was a huge milestone for me and I went home and celebrated with my first post-op beer.
Me and my wound vac returning from our first trail hike after surgery. This was four months after my operation and I traveled a whopping 1/8 mile. After having major incision healing complications, this was a huge milestone for me and I went home and celebrated with my first post-op beer.
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8 thoughts on “Patience and progress

  1. Hi Heidi, I’ve been reading your post’s for a few months now, they are wonderful and aspiring, like you I have an permanent illeostomy, I’m just 2years in but still looking at my bike (which I use to really enjoy riding) my goal is to get back on it!!!!! Liz xx

    1. Hi Liz,

      I am glad the posts are helpful to you. Hopefully you can get on your bike soon! Right now we have about six inches of snow and a lot of ice here in Colorado so I may have to stick to cross-country skiing for a little while:)

      Cheers,
      Heidi

      1. Hi Heidi, in one of your post’s you were talking about swimming, I’ve not ventured in yet as I’m worried if bag would come undone!!! Did you say you wore some sort of belt!!! Or did you have a problem with bag coming undone. Also would I need to wear a hernia belt on the bike, I want to throw myself in to doing more stuff this year!! Happy skiing, here in the UK we just have so much rain at the moment. Thanks liz x

      2. Hi Liz,

        I go swimming a lot and also soak in the hot tub often. I wear Convatec Sur-fit Natura Durahesive cut-to-fit wafers with the tape boarder cut off (because it bugs my skin) and replaced with strips of 3-M Medipore tape. Even with this modification, my wafers stick fine through any water sports and I don’t have to do anything extra. I have swam for over 60 minutes with no problems. You really just have to try it out and see how it goes. Have you soaked for a while in your own bathtub? That might be a good way to test things out. You may find that you don’t need to add anything to your wafers either as they are designed to be waterproof. If you do notice your wafers peeling up, a lot of people have good luck with either Active Lifestyle Products Sure Seals or Coloplast Brava Elastic Barrier strips. These are designed to “picture frame” the wafer and create a waterproof barrier around the edge.

        As far as the hernia belt for biking– sometimes I wear one, sometimes I don’t. If am doing a more strenuous uphill ride I will wear my four-inch wide Nu-Hope hernia prevention belt. I like that width better than the six-inch for biking because it seems more comfortable with my body position and leg movements. If I am just doing easy paved paths around the neighborhood, I usually don’t wear one.

        Hope this helps! Best wishes as you return to your activities!

        Cheers,
        Heidi

  2. Hi Heidi
    Not sure if I am the “lady” you are referring to that the email keeps bouncing back. My daughter had surgery last week and I left you a post with a question about the ostemy covers. She is adjusting very well but the abdominal muscle pain was something we were not prepared for.Her surgery was completely laparoscopic so the fact that she needed us to help her walk and is now walking on her own but with lots of pain was worrying but apparently normal for some people. She is a trooper and is happy to not be sick and tired all of he time. She missed 27 day last term. She is anxious to start a new chapter …not in bed or on the toilet!
    We love reading your blogs and advice. It has been very inspirational. There is a light at the end of this dark tunnel.

    1. Hi Stacey,

      Thank you so much for getting in touch. Yes- it was you who I was trying to get the message to. I felt so bad when the email bounced back and I realized there was no way to contact you. I was so hoping you would see the message in my most recent post. I will resend the email to the address associated with this comment.

      I am glad your daughter is doing better, but sorry that she is experiencing so much pain. I can’t comment on laparoscopic surgery because mine was open. However, my pain level after surgery was quite intense and I remember crying a couple of times when I had to roll over in my bed because it hurt so much. It was extremely painful to walk too but I made myself do it. My pain did not resolve with some of the more typical pain meds (vidodin or percocet). I had to be sent home from the hospital with something stronger (oral version of Dilaudid). Fortunately, after a couple of weeks things did start to improve and my pain level went down. Keep hanging in there! There is a light at the end of the tunnel!

      -Heidi

  3. Hello Heidi – long time listener, first time caller ;). I’m where you were over 3 yrs ago: contemplating surgery to rid myself of UC. J pouch vs ileostomy….your experience has definitely influenced my decision. My question: do you still wear the hernia belt when doing activities? Will you always?

    1. Hi Josh,

      Thanks for writing! Surgery is a tough decision, but at least for me, the results are everything I could have ever hoped for. The choice between j-pouch and permanent ileostomy is also a hard decision. All I can recommend is to really follow your heart and look closely at what aligns with your values and lifestyle the most. You can ask a million people what they would do, but they will never be able to put themselves in your shoes exactly. You have your own unique perspective based on your experiences with UC… your own hopes and dreams for your future. You are the one who will have to live with the choice… so really listen to your inner voice when deciding. Because I wholeheartedly believed that the permanent ileostomy was the UC treatment option that fit the best with my lifestyle, I have had zero regrets.

      I do still wear the hernia belt and I think I always will. I had incision healing complications that made me more at risk of at least having an incional hernia. Having an ostomy also puts one at risk of a parastomal hernia… especially in the first year (though they can happen later too). Since I am used to the belt and find it comfy, I decided to always wear it when doing strenuous activities or lifting heavy things. I know that wearing a hernia belt will not guarantee that I never get a hernia though. I do a have a friend who is a climber with a colostomy. He got a parastomal hernia when climbing at six months post-op. His hernia was repaired fine and he is back to climbing. However, after his experiences, he highly recommended to me that I always wear a 6-inch hernia belt for climbing. That is probably the most strenuous sport I do, but I really find that I also like wearing the belt for backpacking and snowboarding and even the less strenuous sports. I figure why take the chance? Since my ostomy is permanent, I want to do everything I can to help have the best long-term outcome I can.

      Hope this helps! Best wishes with your surgery decision. Please let me know if you have any additional questions.

      Cheers,
      Heidi

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