Welcome: the story of my outdoor adventures as an ileostomate (feat. new video)

Yesterday was my sixth-month anniversary of my permanent ileostomy surgery, so it seems like a fitting time to start my Ostomy Outdoors blog. I have been active in the outdoors since I was a child, and one of my biggest fears about ostomy surgery was that I would no longer be able to take part in the outdoor adventures that I love, like rock climbing and backpacking. Through writing and short films, this blog will document my return to these activities after having my colon removed due to ulcerative colitis (UC).

My battle with UC began in 1999. It started out very mild but worsened over the years, with 2009 and 2010 bringing my worst symptoms yet. My abdominal pain increased, and I constantly bled, making it hard to keep my iron levels stable, resulting in fatigue. I would sometimes have small accidents and began to put pads in the back of my undies when hiking, just in case. Of course, I was also a little embarrassed about all of this, and except for my husband and parents, never talked to my friends and family about it. I was a master at covering it up. There were a few times my cover was almost blown. I remember once when I was out hiking, my friends got ahead of me on the trail when suddenly I had to go the bathroom. Without any time to inform them of my situation, I ducked behind a boulder to dig an emergency cat hole. They couldn’t see where I had gone, and thought I had disappeared! Needless to say, they were very relieved when they saw me walking towards them again on the trail. Urgency is one thing when you are hiking; it is another matter up on a rock face. Often if I was feeling ill with UC, I would cancel my climbing plans. Still, most of the time I managed to lead an active life with the disease by ignoring the pain and not letting it stop me.

And pain, as well as bleeding, were my two constants with UC. They never went away, even when I was in what I considered remission. Then, in the summer of 2010, all my UC symptoms mysteriously vanished. It was like I never had the disease, and I though I had somehow been miraculously cured. What brought this perfect remission on, I will never know. I had made no changes in my diet or medications. I enjoyed a worry-free summer of climbing, camping and hiking. This bliss was short-lived. In September, after experiencing a period of grief over the loss of my 13.5-year-old Chesapeake Bay Retriever, my symptoms started to come back. Nothing unusual at first– just the normal pain, bleeding and a tiny bit of urgency here and there. I called my doctor just to be on the safe side, and started a round of Prednisone.

With my love of the wilderness, it is fitting that my final UC flare really worsened while on a three-day backpacking adventure with my husband, Doug. Though I seemed to be in a mild flare, I didn’t feel like I needed to cancel the trip. In fact, I thought the backpacking excursion would help ease some of the stress I was feeling over losing my dog. My symptoms were nothing that I hadn’t backpacked with dozens of times before, so off we went into the wilderness. I actually joked with Doug when we pulled up to the trailhead that it was good that there were some houses nearby in case I had a UC emergency and he had to get help. I really was kidding– I felt quite well at that time and the first two days of the trip were spectacular. We hiked off trail, camped in some beautiful spots and even scrambled up a 13,000 ft. peak.

However, on the last day of the trip, I started to feel nauseated and had a lot of urgency with large amounts of blood. I never had nausea with my flares before, so I was a bit alarmed. We had planned to scramble up a peak next to camp before packing up and heading back to the car, but I told Doug to go ahead without me. I just felt too sick and decided to stay back and sketch in my journal instead. Afterwards, I made it back to the car with no problems. However, on the drive home I had to make numerous stops to use the bathroom and was shocked at the amount of blood I saw.

Over the next week, my symptoms worsened as I started having over 20 bowel movements a day. I went to the ER twice, as I couldn’t keep any fluids in. I was tested multiple times for all kinds of intestinal bugs just in case I had picked something up. Everything came back negative. Finally, my GI scheduled an emergency colonoscopy, and it was discovered that I had severe UC  inflammation in the lower portion of my colon and mild-to-moderate inflammation as far up as she could scope (which wasn’t much, for fear of perforation). I was immediately admitted to the hospital. In just over a week’s time, my strong healthy body, with which I had just been backpacking and climbing peaks, withered away until I looked like a skeleton and could hardly walk up stairs. All my usual medications began to fail me, and even large doses of Prednisone were no longer working. Fortunately, an infusion of a biologic drug called Remicade worked wonders, and within 5 days of taking the medication, my flare ended. Unfortunately, around the same time, I developed excruciating  joint pain from the drug. I cancelled all future infusions of the medication, and the pain went away over a period of weeks once it left my system. At this point, I decided that surgery was my best option for ridding my body of ulcerative colitis. I was actually excited about it; I was tired of being so sick and in pain and wanted my life back.

Though I was a candidate for the two main types of colon-removal surgery, I opted to have a permanent ileostomy instead of going the j-pouch route. What type of surgery to choose is a deeply personal decision. Though many people, including outdoor enthusiasts, have wonderful success with j-pouches, I believed the permanent ileostomy was right for me. I liked that the results of the surgery were more predictable, and I thought it would work well with the outdoor activities that I loved. As long as I emptied my appliance before a shorter hike or climb, I would be good to go. On long alpine routes where I was on a rock face all day, there would be options too. I could swap out a closed-end pouch on a two-piece ostomy system at a convenient ledge and then pack out the old one. For backpacking, there was no reason I couldn’t just empty my appliance in cat holes (though more often) as I did before.

Of course, this is all speculation at this point, as I am only six months out of surgery and just now starting to get back to some of my outdoor pursuits. And that is the point of this site: to share the successes and challenges of returning to a variety of outdoor adventures as an ileostomate. Hopefully, my journey will help others see that surgery does not have to stop one from leading a full life and taking part in all the activities that they are passionate about. Hope you enjoy the site!

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4 thoughts on “Welcome: the story of my outdoor adventures as an ileostomate (feat. new video)

  1. As someone with a high chance of having surgery to remove my bowel in the future I find your blog so inspiring. I love how you manage to do everything you enjoy. I hope I’m the same. My children need role models like you.

    1. Hi Kristy,

      Your kind words mean a lot to me. Thank you!

      So sorry to hear you may be facing surgery, but know that you can lead an amazingly full life with an ostomy. You will be able to do all the things you enjoy. I won’t sugar coat things… the first few months after surgery are tough. Even though I was excited for my surgery because I was so sick, I went through a grieving process over the loss of my colon. And learning to manage an ostomy is hard at first. But hang in there and be patient through all that because afterwards things get sooooo much better.

      If you end up having surgery, just visualize where you want to get to, be patient with yourself and solve the challenges a little at a time so you don’t get overwhelmed. Before you know it you will be back to doing everything you love. It seems like just yesterday that I was in a hospital bed looking at my ostomy for the first time and feeling uncertain about my future. Then I think of my renewed health and all the amazing things I have done in the two and a half years since the operation and am blown away. Those few hard months were so worth the life that has been returned to me with my ostomy

      -Heidi

  2. Hi Heidi,
    I had my ileostomy/colon/rectum removal in 1999 after being diagnosed with UC in 1992. Like you, I chose to have everything removed so that I could start living my life again. I was not that active before the UC, but since the Ileostomy, I hike, bike, kayak, backpack, and have skydived. It was nice to stumble upon your website and I plan on reading through most of it.

    Tammy

    1. Hi Tammy,

      Thanks for writing. I love hearing from others who lead an active life after surgery. I haven’t gone skydiving yet, but would love to some day! Here is to many awesome future adventures with our ileostomies!

      -Heidi

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