Living with Spina Bifida

My Story – Submitted by: Anonymous

I was born with spina bifida. I was also one of the lucky ones – I could walk, even run, and never suffered from hydroencephalitis (water on the brain). I am also urinary and fecal incontinent.

At the age of 3 years, I had a urinary diversion surgery called an illial [ileal] loop done. I wore a urinary bag until I was 18. Kids can be cruel. In addition to the normal teasing that goes with growing up, I also had to deal with being shunned due to the bag springing leaks, as well as regular accidents from the bowel incontinence. You can probably imagine how bad things got. When I was 18, an artificial sphincter was installed on my bladder – I still had to self-catheterize to pee, but at least I didn’t have to wear that damned bag.

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