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.
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.
Next I went upstairs and tried on all my skirts, shorts and pants. Much to my relief, I could not see the pouch full of applesauce under any of them. I was feeling certain that the spot was going to be a good one for me.
Despite this initial confidence, over the next week I got nervous again. I noticed that when I did a really deep bend, like one would do when touching their toes, a crease formed on my belly. Would that be enough to make the appliance not stick and cause leaks? I scheduled another appointment with my stoma nurse just to have her check it out and make sure it wouldn’t be a problem. When she saw what I was referring to, she assured me that the crease was small enough that it would be flattened out by the wafer and would not be an issue. I felt very relieved!
However, it seems like when you are facing surgery, one worry quickly replaces another. I now liked my stoma location so much that I feared something might prevent me from having it placed there. I pictured waking up from surgery and having it in an entirely different spot.
To ease my fears, I asked my surgeon two things the morning of my surgery while I was in pre-op. It felt a little weird to be bringing these things up with someone who I knew was an expert in his field, but I asked anyway. One thing I wanted to make sure was that my stoma would stick out. I had heard that flush or short stomas were bad news as they could pump stool under the wafer. Though the memory is a little foggy, I think I even asked him to create one that would end up being about 3 centimeters long after the swelling went down. He assured me that he would not give me a short stoma.
Next, I told my surgeon that I really loved the proposed site of my stoma and wanted to know if it was likely that it would end up in that spot. My surgeon said not to worry and that the location looked like a good one.
With those worries attended to, I completely relaxed for the first time in about three months as an incredible sense of peace came over me. I knew I had done everything in my power to get the surgical outcome I wanted. It was time to put my full trust in my doctors and nurses to get me to the place of health I was longing for. The last thing I remembered that morning was being wheeled down the hall towards the operating room. When I woke up and peered under my hospital gown and through the clear appliance on my belly, there was my new stoma: a perfect length and in the exact spot I had been hoping for.
So, for all the outdoor-enthusiasts out there facing surgery: if you are able to provide input into your stoma location, I would highly recommend taking a harness and backpack to the meeting where your stoma site is marked. Once you have a location, test it out against your clothing and gear to make sure it works for you.
If you have already had surgery and find that your stoma isn’t in the ideal location for wearing a pack or harness, there are some products I have heard others recommend to protect your stoma from backpack and harness waist belts:
As for me, as the months progress and I get out on adventures with my pack and harness, the location of my stoma has proven to be just as good as I thought it would be from those early days of testing it out with my bag-o-applesauce.
10 thoughts on “A dot marks the spot”
I love the ostomy cover! Where do you get them?
I like to sew so I make them myself. I basically traced my appliance and came up with a pattern for a cover that slips over my pouch. I didn’t leave a seam open on the bottom of my cover because I figured it was easier to just make one that slips on and off my pouch when I empty. That way it never gets splashed on or messy from draining. The ones I make look very similar to the ones from this company if you don’t have sewing skills and want to order something.
I always have tears of happiness every time I read one of your blogs!
Thank you! Your comment makes me smile.
Thank you so much for this post, Heidi. This information (pictures and all!) is going to be so helpful for my friend, Kevin, as he prepares for surgery. Your practical guidance is so comforting and documentation of your return to the outdoors, inspiring. We are truly blessed to have found your blog:)
Glad the post is helpful. One of the most important things another outdoor-loving ostomate told me before my surgery was to make sure to avoid having my stoma placed on my belt line if at all possible… I think this is especially important for people who like to backpack. As you can see from the photos, mine is well below. It sounds like Kevin has time before his surgery so hopefully he will have a chance to work with a stoma nurse for a good placement. Best wishes and please let me know if you have any more questions.
I loved your story! So encouraging and interesting! It brought tears to my eyes as I read through the journey about picking the ostomy site. I also liked the idea of making pouch cover so I am going to try it. Thank you for your stories and ideas!!! I will be following them all.
I am so happy that you are finding the site helpful! Making pouch covers is pretty easy if you know how to sew and it is fun going to the fabric store and picking out neat fabrics for them. I have made so many:)
I got my stoma with an emergency surgery I was not expecting and now it is just a tad bit high for many of my pants and for the waist belt of my backpacks. I am still working on finding a good solution but have not had the best luck yet. I have a real itch to get back out in the woods for some overnights but that is on hold for now. It is encouraging to see that there are hikers out there on the trail with the same issues.
Thanks for writing. Have you tried to use any of the stoma guard products such as Ostomy Armor or Stomaplex? I have heard that some ostomates have success using these to protect their stoma and create room for output flow when their backpack waist belt would otherwise rest right on their stoma.
Trying a different brand of backpack might help too. I just got a new Osprey brand pack this year and love it. It has a very padded hip belt, and –on the bigger overnight packs– the hip belts are interchangeable. You could try the various belt sizes out and see if one of them worked better with your stoma placement. For instance, I was between the medium and small hip belt sizes, but got the small as it didn’t wrap around the front of my body as much which created more room for my stoma. However, the small was still comfortable and supportive enough for carrying my gear weight.
Anyway, keep experimenting to find something that works. I hope you can return to the wilds soon!