I wish I had've found this website earlier.
I'm 44 and was incontinent aged 4 - 16. I was raised by a single mother and had three normal adult siblings. The bowel problem is completely over and I'm fine apart from some digestive issues, but it's the emotional scars from having this happen to me when I was so young that run very deep.
My incontinence was stress/anxiety related due to a turbulent time when my mother and father split up when I was 4. It's a blur, but I had eating problems and was very thin, I couldn't go to the toilet, or wouldn't - I don't know, and crossed my legs so it would go away. it would become diarrhea and would escape from me. I was a mess. School was difficult, stopping myself from going to the toilet was a daily problem and my anxiety about it debillitating. Kids were cruel of course.
My mum didn't know how to handle this, after 3 normal kids to now have a 4th who was behaving this way was beyond her I think. Doctors weren't too knowledgable in the 70's and early 80's, and after a while it became 'Let her grow out of it'. My life was spent creating coping strategies, thinking about how and where I could change myself, avoiding potentially embarassing situations, and being as normal as I could for mums sake.
Aged 16 a family friend took me under their wing and no longer hoped I'd grow out of it but talked, calmy, openly, reassuringly to me about it and my anxiety fell away. He took me to a specialist, and dieticians. It was fixed in a matter of weeks.
The problems then were learning who I was psychologically as my formative years had been spent in this bizarre bubble. I was driven by an intense to desire to catch up on what I'd missed out on in life, boyfriends, friends, sex, alcohol, house, marriage, even divorce. I was ticking boxes in my head of what it seemed as though everyone else had done in life. I got to 38 and realised - I'd done it, I'd caught up with my peers. The big question then was - now what? Losing the motivation of chasing away the problems from my old bowel problem almost felt like grief, the death of my biggest motivator.
I've seen councillors and have only reently started to even talk about the bowel problem days with them. The humiliation and shame were so totally overwhelming I had buried it very deeply in my psyche. I've had trouble trusting people in my life, feeling worthy or valid, and I have zero abiity to know my own mind and what I want.
I have IBS now, my gall bladder was removed and some dairy intolerance but other then that I'm fine. I'm super conscious about anxiety and its effecs on my body. I've had relationships but I'm starting to see some of the behavioural patterns in my relationships and how they relate to my feelings of self worth and my preference for living a comforting bubble where the harsh real world can't come in - perhaps there is still work to be done on clearing away the ghosts of my past after all.