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.

Anyway, I still have to live with the other problem. I’m not just talking about a bit of anal leakage here. I’m talking about accidents that send you home from work to take a shower and change clothes. It really affects your social and work life, too. A bit of loose bowels that most people could cope with at work, keeps me home and in the bathroom. Full-on diarrhea is just worse. It is one of the few things that will drive me to tears.

I’ve used all kinds of pads and disposable underwear – very few manufacturers seem to want to admit that fecal incontinence even exists. If they do, they assume that those of us with it are fine with bulky diapers, and even bulkier pads. If a manufacturer is reading this, please start doing the following things: 1. Put the measurements of your pads on the package! We need to know if your product is suitable for what we need it for. 2. Make a pull-up style underwear with pads high in the back for those of us without bowel control! There is an untapped market out there for someone who finally does this.

Posted in Shared Stories from People with Incontinence and tagged , , , , .