The long haul (feat. new video)

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.

Everyone tells you when you are trying to learn to manage your ostomy to be patient and that things will get better with time. It is hard to see that end point when you are in the middle of it all and struggling. However, I soon discovered those people were right with their advice. In time, managing my ostomy did get easier. I realized I didn’t have to get things absolutely perfect and that my stoma and skin were tougher than I thought. My output thickened and slowed down and my stoma stopped changing size. I could cut my wafer the correct size every time. I had been using a certain kind of pouch that worked well next to my stubborn-to-heal abdominal incision, but it wasn’t my favorite. Once my wound healed, I could fully experiment with many different products  and discover the ones that worked best for me. Finally, after months of perfecting the basics, I was finally ready to take the more advanced steps of dealing with my ostomy in the wilderness. The backpacking and hiking videos I have created so far feature my journey into this realm.

However, all those trips were fairly short. It was time to go further. Ever since leaving the hospital with my ostomy, I wanted to know that I could go on a long multi-day trip deep into the wilderness like I used to.  After a summer of conditioning my body and experimenting with my ostomy appliance systems, I was ready to give it a go. The following film features this adventure.

So sit back, grab some popcorn (a small bowl, chewed well, and eaten with plenty of fluids) and enjoy!

2 thoughts on “The long haul (feat. new video)

  1. Glad you liked the post. It was an unbelievable trip, and it meant so much to me to be out in the wilds for an extended time again. Hope you had some fun trips this summer too.

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