Reaching out (feat. new video)

Last Tuesday evening, I left work in a gorgeous swirl of falling snow but promptly got stuck in standstill traffic due to slippery road conditions. I half-thought of exiting the freeway and heading home, but the destination was too important and I knew that getting there would soon melt away any stress that had accumulated on the drive. In fact, it was almost guaranteed that I would leave the event in a good mood. I always do. So where was I heading that had me filled with such eager anticipation?

The fourth Tuesday of every month is my Ostomy Association of Metro Denver meeting. I started going to these meetings as soon as I was healed enough after surgery to get to them and quickly discovered how valuable they were. When you have a condition that is hard to talk about with most people, there is a feeling of instant comfort that comes from being surrounded by others who immediately understand what you are going through. A place where it is okay to talk about normally taboo subjects such as gas, rectums and bowel movements. Now that I have been attending the meetings for almost two years, I cannot imagine not having this support system in my life. I absolutely love talking to those who are facing or recovering from surgery and doing what I can to offer encouragement. I head home from every gathering wishing I had more time to talk to everyone and eager for next month’s meeting to arrive.

One thing that I hear many young people on IBD and ostomy internet forums say is how they often walk into such meetings and feel that they are the only one in their age group there. Many times these people don’t come back for this reason, and I think it is really unfortunate. Regardless of age, everyone can relate to the overwhelming emotions that come with ostomy surgery. Though different for each person, we all have stories of difficult times, fears we are facing, successes we are celebrating and hopes and dreams for our lives beyond illness. Coming together to share our experiences and thoughts on these things can offer profound opportunities for healing. I love the conversations I have at the meetings and learn something from every single person there whether they are 25 or 70 years old.

And guess what? If you wish that there were more people at the meetings your age– stick around. The next time someone else your age is nervously walking down the hall towards the meeting room and peeks in, they will see you there and feel less apprehensive. If that person chooses to also come back next time, it has a ripple effect and soon the group becomes more diverse. Make the meetings be what you want them to be by participating and returning for the next one.

If you don’t have access to a local support group to meet people in person, there are many groups to join on the internet. I wrote a post a while back about the importance of reaching out to others online. One of my biggest twists of luck when I was in the hospital and facing the possibility ostomy surgery was that my room had a good internet connection. Whenever my favorite nurse would see me typing away on my computer at an intense pace, she would always remind of how fortunate I was to be in that room because many of the others on the floor had poor Wi-Fi signals. I don’t know what I would have done without my computer. It became a lifeline from my isolated hospital room and allowed me to meet others who had gone through surgery and gone on to lead active lives.

Because of my own experience in reaching out for help when I was sick, it is a huge priority of mine to try to answer every single comment and email I receive on this site. Sometimes it takes me a little while due to a busy schedule, but you will hear from me if you write. Last fall, an email appeared in my box from another local adventurous ostomate: Lewis Benedict. That initial contact led to other opportunities to meet up including a recent hike of Twin Sisters Peaks in Rocky Mountain National Park. Lewis is now working on his own ostomy awareness website, ostomatevillage.com, and was even on cover of The Phoenix magazine this quarter! I am so proud of his accomplishments and look forward to many future adventures with Lewis and his wife, Tara.

On top of Twin Sisters Peak in Rocky Mountain National Park with Lewis and Tara of Ostmate Village. Check out the video below for more on the adventure!
Our group (including Lewis and Tara of Ostomatevillage.com) poses atop one of the Twin Sisters Peaks in Rocky Mountain National Park. Check out the video below for more on the adventure!

I am thankful everyday that I have met so many amazing people through my ostomy association meetings, OstomyOutdoors.com, and other websites and social media. You all inspire me to no end and help keep me motivated when my own life presents challenges.

I am going to end this post with a video of the hike with Lewis mentioned above. I hope it provides some inspiration to get out there and meet other people with ostomies. If you are feeling alone while facing or recovering from surgery, or if you just want to meet other people who have been through similar things, know that there is a strong ostomy community out there. You just have to reach out.

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The Phoenix magazine now available online

Beyond great doctors and following the treatment plans they prescribe, one of the things I find most important when dealing with difficult medical conditions is maintaining a sense of hope.  I simply have to be able to believe that the possibility of a good outcome exists, even if I know the road to get there might not be easy or certain. When I was facing ostomy surgery, one of my biggest sources of hope was The Phoenix magazine, the official publication of the nonprofit United Ostomy Associations of America. The minute I stumbled upon it online, I subscribed and bought all the back issues. I eagerly read every word of every issue. Along with a vast array of educational articles about products and managing an ostomy, there were countless inspirational stories about people with ostomies who were out there living life to the fullest. I learned about a woman who had hiked the Appalachian Trail and another who had visited China. I found out about a climbing guide in Alaska who had an ostomy and another individual who had climbed Everest. Reading about these people was as important as figuring out how to get my wafer to stick: they allowed me to visualize what my life could be like in the future. They gave me hope.

Last fall, I began contributing to The Phoenix myself by wring the quarterly Ostomy Outdoors column. This is certainly something I never would have visualized as being part of my future while lying in my hospital bed a couple of years ago! Life is full of beautiful surprises and being able to help people through the same magazine that provided so much inspiration for me is humbling.

Whether you are facing surgery, just recovering, or a seasoned ostomate, each issue is full of great articles on supplies, skin care, stories about others who have had ostomy surgery and so many other topics. And now it is even easier to view the publication! The UOAA is offering an online subscription for only $19.95. Find out more information and get a free preview of the online winter issue at the following link.

And speaking of hope — I hope to never let a season go by where The Phoenix doesn’t show up in my mailbox. It is such an invaluable resource for me.

Phoenix-post-web-version
The Phoenix magazine is as important as wafers, pouches and barrier rings when it comes to my life with an ostomy.