How Did I Get Here? How I Came to Have an Ostomy.

KarinA suburb girl, I grew up near San Francisco, CA.  I had a relatively healthy childhood, ate my greens and ate my ice cream. I played soccer for a couple years and played clarinet in a local youth orchestra as well as at school.  The symptoms started in High School but I ignored them as any high school kid would if they could.  I knew that it was not normal but I didn’t know where to go for help and was embarrassed.

After my first flare resolved itself on it’s own, I forgot about it and lived symptom free for a few years.  I graduated high school and moved to attend college. I flared again toward the end of college and my boyfriend at the time convinced me to go to the doctor.

Ulcerative Colitis. The doctor gave me meds, I took them, and life was great – until I didn’t have insurance anymore and ran out of meds.  I flared worse than I had before and tried to manage it through diet. I adjusted to my new normal, which in hind-sight was incredibly not normal.  A couple years later, seemingly overnight, my colon took a turn for the worse (I didn’t think that was possible).  After a few weeks of suffering, I realized it wasn’t going to resolve itself and was encouraged to go to the ER. I was admitted to the hospital and within a few days I was begging them to take my colon.  I did not respond to steroids and did not want to try the other options they offered me, because they told me eventually I’d likely end up in the same place I was in.

Alas, the doctors agreed, and within a couple days I had an ileostomy who I have lovingly named Coltrane.  We get along pretty well most days.  The best part of having Coltrane instead of my colon is the ostomate community (aside from not living in the bathroom in excruciating pain of course). The people I have met and will continue to meet at the support groups and throughout the ostomy community are so inspiring.

Although I will not let Coltrane define who I am, I am excited to finally have a cause I can identify strongly with.  I am eager to volunteer within the ostomy community and help spread awareness.  I coped by building a website for new ostomates called www.newbieostomy.com. The goal of this website is to provide basic ostomy information and answer the questions that they didn’t tell you to ask in the hospital.

Note: I started writing to document my adventure before I knew I would be publishing it publicly online.  Some of the blog posts are posts I wrote before I had a blog in mind and are not being posted in real time. I put notes at the bottom of them too.

Share your thoughts!