Safety While Adventuring with Crohn’s and an Ostomy

A few weeks ago I biked and hiked my bike up to Eska Falls in Sutton, and then hiked above the falls with some friends. The riding was technical for me as a fairly new mountain biker. On the hike back down to pick up our bikes, I commented to a friend that my ostomy had been having a lot of output that day, and as someone who experiences frequent blockages, that made me happy.

Reaching the top of the single track. PC: Kevin

However, as soon as we got back to our bikes and unlocked them to ride down the hill, I started to experience abdominal pain. The pain became excruciating fairly quickly, which is unusual and made me nervous. We took the long, but “easy” way down the ATV trail and had to make many stops for everyone in the group to catch up and rest. The pain worsened and I tried lying on my back to assist with output (sometimes this helps if I have a blockage). I took breaks to look at my stoma, but it appeared normal (more normal than when I have a blockage). I could not figure out what was going on. On the car ride back home, I began to have more output and the pain started to decrease. By the next day I was fine. I still don’t know what happened, but assume that maybe the heat caused dehydration and abdominal distress.

Heading down the ATV trail. PC: Kevin

After making it back to the cars, one of my friends asked me if there was anything he needed to know about my Crohn’s or ostomy when being active outside with me?

I think I gave him a generic answer that I would let him know if I needed any help while we were out, but that I have things handled.

But here’s what I really want people to know…. 

  • I believe I can do anything that I want with my Crohn’s and my ostomy. There are no limits, except the ones in my mind. In fact, I wouldn’t be a successful occupational therapist if I set limits on what is possible for someone with a medical condition.
  • I don’t see myself that differently from the partners with whom I adventure. I do have to do some extra planning, but when we are in the backcountry (or front country), anything can happen to anyone. I feel as strong and prepared as my adventure partners. In fact, two weekends ago, I was surprisingly one of the people least affected by the heat on a 3.5 day backpacking trip (I learned my lesson at Eska Falls). 
Downing water to prevent dehydration while backpacking. PC: Kenton
And then back to the grind. PC: Kenton
  • After years of experience traveling and adventuring (with a few mishaps along the way), I have a plan and am ready to deal with whatever comes my way (the good and bad, the expected and unexpected). If traveling internationally, I make a list of the clinics and hospitals and write down all of the local medical contact information that I may need. For a recent trip, I even contacted my insurance company to make sure I knew what services would be covered internationally.
  • I make sure that at least one other person on each trip that I go on knows I have Crohn’s and an ostomy and that I may have medical complications (this was not always true for me when I was uncomfortable sharing my medical history)
  • This year, because of my recent trip to Mongolia, I have a Global Rescue membership.
  • Besides when it was briefly stolen (and when I occasionally forget), I carry my InReach on me when I head out on a longer trip where there is no cell service, so that I can call for help if needed.
Brief Story: My InReach was recently stolen from my car, but because of how important it is to my safety in the backcountry with a chronic illness, I made it my mission to track it down. I had to drive an hour each way, but I got it back from the man who bought it off Craigslist from the thief!
  • I meet with my doctors (surgeon, GI, primary care) before big trips to ensure that I have the right medications, that I know how to handle medical complications on my own, and so that they are aware that I might need to seek them out when I return if I have complications. 
  • I have a high pain tolerance and a stubborn personality, so if I ask for help, I need help.
  • Finally, I don’t have all the answers, and I don’t know how I will react in every situation. I don’t always know what to anticipate with my body. Sometimes I have abdominal blockages, sometimes I have abscesses, sometimes my ostomy leaks, sometimes I have excruciating abdominal pain, and sometimes I dehydrate easily. But most of the time, nothing happens. So I go into each trip hoping that things will go smoothly, and preparing to handle whatever comes my way.