10 Things I’ve Done Since Having Ostomy Surgery

Ostomy Lifestyle Specialist | Shield HealthCare

08/10/16 9:17 PM PST

girl with a backpack going up in the mountain forest

When I had my surgery in December of 2011, I didn’t know what to expect life to be like with an ostomy. Ten days before surgery I went online to look for information about “lifestyle with an ostomy” and I really couldn’t find anything. This is why, just ten days before surgery, I founded a YouTube channel called Ostomystory. I documented my life frequently for two years post-operatively and shared life experiences, thoughts and tips. In the few years after ostomy surgery, I have accomplished and experienced so much. I wanted to share my short-list with you so you know that you really can do anything with an ostomy! What have you accomplished and experienced after ostomy surgery? We would love to know!

Ten Things I’ve Done After Ostomy Surgery

Traveled to seven different countries and over a dozen different states
Travel has always been one of the things that make me feel most alive. I was so fearful of flying after ostomy surgery, but my parents were so smart and scheduled a short trip from Chicago to Sedona, Arizona only three months after my surgery. This acted like exposure therapy for me. I was immediately exposed to my fear and realized there was nothing to be scared of! I packed twice as many supplies as I would typically need, brought all my medications and a heating pad in my carry-on, and repeated to myself that everything would be fine! The flight went smoothly, and the trip re-instilled my love for exploring new places. If you’re interested in reading more about travel tips, here is a video and article on traveling with an ostomy.
Ran a half-marathon and three different obstacle course races
Another activity I loved was running, but I gave it up after being diagnosed with ulcerative colitis (UC). After surgery I decided I would try to pick it back up again. I ran a half-marathon with Team Challenge, which was a great reintroduction to running. The coach had UC and helped me find solutions for staying hydrated and changing my running posture so that running wouldn’t bother my adhesions. During the training process I realized that I was in the best shape of my life, even with a stoma!
Graduated college
My biggest fear after being diagnosed with ulcerative colitis was being unable to finish school. School has always been something I’ve enjoyed, and I knew that being a psychologist was my end goal. It has been such an important part of my identity for my whole life. There were many hospitalizations during my semesters, a few medical withdrawals from classes, and countless tears. I remember my college boyfriend pulling me on his longboard to class for two months because it hurt so much to walk (later we discovered I had a pelvic/peritoneal inclusion cyst). With a lot of help from friends, family, caring professors, the disabilities office and personal tenacity (or stubbornness) I graduated Cum Laude in nine semesters.
Moved cross-country… twice
Three years after ostomy surgery, I moved from Chicago to Los Angeles for a job – this job. A job that allowed me to educate others about life after surgery and advocate for a happy, healthy and full life with an ostomy. Starting over, being away from my amazing support network, making new friends and finding new doctors and specialists was so intimidating – but after the fact, I had so much confidence that I could handle taking care of myself and everything that life could throw my way. I found my “script” for telling new people about my ostomy and loved being a Californian for two years. I then headed back to Chicago to start graduate school. Once again, I’m having to readjust to a new lifestyle, but it has been such a positive experience.
Backpacked the Canadian Rockies and hiked the Colorado Rockies
I had backpacked a few times before my diagnosis, and had really loved being so far out in nature – far enough that I couldn’t see any signs of civilization. It is so incredibly refreshing and calming to me. I thought it would be difficult with all my ostomy supplies and pills, but it turned out it was much easier than having to go to the bathroom in the woods the “normal” way. Since my first backpacking trip with my ostomy, I’ve considered it an advantage!
Enjoyed relationships and had no issues with being intimate
I’ve had a few wonderful and accepting relationships. I’ve never had any issues with discussing my surgery and ostomy with a potential love interest, nor have I had issues with intimacy. I’ve always approached discussing my ostomy with honesty, openness, and confidence, putting out the vibe that it’s not a big deal and my partner has picked up on that cue. The more positive and confident you can be about your ostomy, the better! If you’re interested in learning more about intimacy with an ostomy, click here.
Formed a wonderful, amazing support system
Similar to explaining your ostomy to a potential love interest, if you choose to tell your friends and family about it, the more positive (but still realistic) you can be about your situation and the more open your friends and family will be. I’ve been so lucky to have my friends and family be supportive. I always start by talking about how dangerously sick I was and then move on by saying “in order to save my life, I had to get my colon taken out.” I then explain more about the surgery and how it affects me.
Carried out a normal life/work/exercise/social schedule
This sounds like a small accomplishment, but compared to my life before getting ostomy surgery, this is a huge deal to me! I was unable to work part time, stay in classes, see friends or even leave the house on my “bad” days. My ostomy has allowed me to live the life I’ve always wanted to live.
Spent hours in the Pacific Ocean while boogie boarding
While I lived in California I picked up boogie boarding as a hobby. I spent hours in the ocean, on my belly. Read different products that make being active easier with an ostomy here.
Gone to professional sports games and concerts
This also may seem small, but before ostomy surgery this was such a source of anxiety. Going anywhere where bathrooms weren’t immediately accessible was such a scary idea. Now I go anywhere, whenever I want!