Three years!

When I woke up this morning, I wasn’t sure how to celebrate my 3-year stomaversary.  As I made breakfast, I tossed around some ideas. I thought about going to Zumba like I usually did on Friday evenings but it didn’t feel like it honored the specialness of the day enough. I considered taking a sketching excursion, but I really wanted to do something active. Soon the ideal activity popped into my head: I would go on a trail run! Though I recently started running again after a year-long hiatus due to hip woes, I hadn’t yet been off the road. I quickly formulated a plan in my head. After work I would stop at a local park and do my favorite trail running loop and then I would meet Doug in town for a celebratory dinner.

When I climb, I am only thinking about the rock in front of me. When I do yoga, I am focused on my breath. Running is one activity where I can let my mind travel on a whim. On the anniversary of my ostomy, I really wanted to have a chance to contemplate the positive impact that Wilbur the stoma has had on my life. A long run through the gorgeous landscape would provide the perfect opportunity to do that.

Contemplating the amazing journey from illness to health as I take a break on my trail run.
Contemplating the amazing journey from illness to health as I take a break on my trail run.

Sometimes I ask myself why it is so important for me to celebrate my ostomy surgery date. I am sure if I had elbow surgery I might note the anniversary as it approached each year, but I don’t know that I would feel the need to set aside time to reflect on the experience and do something special to commemorate it.

When I was in the hospital for 16 days with my final UC flare, many doctors and nurses passed through my room and I had a lot of great conversations about my desire to have permanent ileostomy surgery. There were so many varying thoughts and opinions on the matter. I remember several individuals commenting on the fact that, at age 38, I was awfully young to be considering a permanent ileostomy. Why wouldn’t I want to give the biologics a longer try? If I really wanted surgery, why not at least try a j-pouch? Was I sure I wanted to wear an ostomy pouch for the rest of my life?

Trying to justify my choice to others was extremely difficult. I remember having a heartfelt conversation with my GI doctor and IBD nurse about the things I valued in life and why I thought the ileostomy was the best choice for me. My reasons were often hard to put into words, but inside my heart was screaming. I just want my life back!

My life. The one that included hanging out with my hubby in the mountains and on rock faces. The one that wanted to be able to enjoy a fun dinner out with family and friends without UC food worries. The one that included teaching others about nature out on the trails in my job as a naturalist. I saw the permanent ileostomy as the fastest, least complicated and most predictable way of getting back to the things I loved the most. I never felt that I was too young for surgery. Instead, I felt that I was too young to not take a difficult but important step to get my quality of life back.

So every year, on November 8th, I feel the profound desire to reflect on and celebrate that big decision. It isn’t only a time to honor all of the amazing things I have done in the past three years and my renewed health — it is a celebration of my ability to listen to my heart and follow the treatment path that I felt was right for me.

Happy birthday Wilbur the stoma!

Feasting on Thai food post-run.
Feasting on Thai food post-run.

8 thoughts on “Three years!

  1. You are truly inspirational! I haven’t had the courage to try camping yet but I am doing many things I thought were forever gone from my life. When my colon was removed due to cancer, I was told my ileostomy was temporary and could be reversed. It was reversed but life after the reversal was miserable!!! I had to be near a bathroom at all times and if I wanted to go out, I just wouldn’t eat! When the cancer recurred, surgery was again required and I asked for the ileostomy back permanently. Turns out it would’ve happened anyway but I had mentally prepared and made the decision. Life is MUCH better with it than it was without.

  2. Happy Birthday to Wilbur. Without him I would never have met you and Doug. So for that I am thankful to him/her. Heidi, you are one of the most inspirational people I know. I value your friendship, your support and your willingness to share your experiences. Thank you so much for being you. luv and hugs, Eileen

    1. Hi Eileen,

      Now that I am done with my presentation, I am finally getting caught up on my blog. Yes- Wilbur has led me to so many amazing things in my life, including your friendship! Thank you so much for the kind words. They mean so much to me!!! Thinking of you this week… hope things go okay.

      Take Care,

  3. Yes, yes, yes! This is exactly how I feel; I wondered if it would seem too weird to bring a 1st birthday cake (covered in raspberries, I think) in to the staff at the hospital on January 7, but clearly I am not the only one who feels like celebrating my “stomaversary”!

    I wonder if the the doctors and staff would be quicker to give the surgical options if they could really understand what life with IBD is like, and if they could think what they might want for themselves in terms of quality of life if they were suffering with IBD and its limitations?

    1. Hi Matilda,

      I love the cake idea:) Last year I decorated a cake with photo of a colon on my stomaversary:)

      I really try to give a voice to those who have chosen to have a permanent ileostomy to treat their IBD. It seems like so many people think an ostomy should only be a considered as a last resort after every biologic medication or a j-pouch has been tried. However, it is good option on its own. So often when I have appointments with new doctors and they find out about my ostomy, the first thing they ask is “can it be reversed”. When I say “no”, they often seem so disappointed and sad for me. I always make sure to tell them why I chose to have the surgery, how I love my ostomy and how much it has given me my life back. It is important to spread ostomy awareness to the medical community as well!

      Hope you have a wonderful stomaversary!


  4. Happy stomaversary! You continue to inspire me-keep enjoying the outdoors-there’s nothing like it.

    Les, (urostomy-1 year anniversary coming up Dec. 22).

    PS-did a 7 mile Grand Canyon outing yesterday, including some rope work to climb Battleship Butte!

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