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.

Advertisements

7 thoughts on “Reaching out (feat. new video)

  1. I enjoyed your video and can you tell me what online sites that you might recommend for me. I have UC but if I bleed again I will have surgery. I have been in remission for 7 months. Help!

    1. Hi Carol,

      Sorry it took so long to reply. Glad you liked the video! As far as online support groups for ostomies, my favorite are:

      The United Ostomy Associations of America site:
      https://www.ostomy.org/forum/index.php

      The Healing Well ostomy site (they also have a UC group that I participated in a bit before surgery):
      http://www.healingwell.com/community/default.aspx?f=33

      Intense Intestines Social:
      http://www.intenseintestines.org/patients/intense-intestines-social/

      The Inspire.com ostomy site:
      http://www.inspire.com/groups/ostomy/

      The c3Life Ostomy Community:
      https://www.c3life.com/ostomy/forum/default.aspx

      I can’t remember if you are part of Facebook. There are many great ones there, but some of the larger and more active pages for those with IBD and/or ostomies are:

      My Doctor Knows Me Best From Behind– http://www.facebook.com/FullFrontalOstomy
      The Great Bowel Movement– http://www.facebook.com/TheGreatBM
      Girls with Guts– http://www.facebook.com/IBDgirls
      IBD or Known as Inflammatory Bowel Disease– http://www.facebook.com/pages/IBD-or-known-as-Inflammatory-Bowel-Disease/207576322603140

      Hope this helps! Remember too that you can always come to the Ostomy Association of Metro Denver meetings before surgery. Many people do just to get more information and talk to people who have been through surgery.

      One note too about online groups. They can be wonderful sources of information, and I love the support I have found on such sites. However, many people write on them when they are having issues (I have!) so sometimes reading through the posts of all the things people are going through can seem a little scary. It can appear like every person who has been through surgery is having problems with their appliance leaking, their skin, food troubles etc. Keep in mind that these are often the things that we post when we are new to our ostomies and trying to figure things out. Once people are past that learning curve and are out happily living life, they often stop posting. That can often make things feel a little unbalanced towards the negative on message boards.

      Cheers,
      Heidi

    1. I am sure there are some gallbladder groups out there. If not- you are always welcome to talk about gas here ha ha. Definitely something IBDers and ostomates are used to discussing! Isn’t it liberating talking about such things to the whole world? 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s