Colostomy since birth

[Cjcatz]

Hi all,

New to this site. Sharing My story. Born with cloacal extrophy in 1968. Colostomy @ 2 hours old and illeal conduit at age 2. I usually get along just fine with ostomies. No social problems, and never held back by them, just rerouted plumbing to me. I know nothing different. My biggest difficulties arise with health care professionals. I care for them matter of factly, they struggle with what care is best.

I recently had my spinal cord untethered (a co birth defect) due to chronic pain, and trying to care for ostomies without being able to bend is quite challenging. Explaining, minimal use of pain meds to stop muscle spasms while on broad spectrum antibiotics has been the most challenging. Trying to keep meds at a minimum to keep natural balance. Harder than most think.