I must say I'm grateful for this forum and I feel like I've found myself in uncharted territory, and the idea that there's someone else who may have advice is comforting.
I'm 24 years old and have cerebral palsy. I have trouble walking and have weak muscles. I use a wheelchair to get around but am mobile and enjoy a normal life. For as long as I can remember, I have had urinary and fecal incontinence due to CP. For the urinary issues, I've tried everything: meds, Botox, therapies, sacral modulator, everything. I'm tired of the embarrassment this lends and the countless UTIs. I've come to decide to have a urinary diversion or Mitrofanoff in February and end this once and for all. I'm at peace with this surgery and am ready for the freedom I'll have.
But here's what brought me to this forum. On top of this, I've always suffered from worsening GI symptoms, mainly diarrhea and incontinence due to the variability of my symptoms and my weak muscles in that area. I've seen several GI's and the only thing they've found is that I have severely rapid motility (stomach emptying) and IBS, known as dumping syndrome. I know... ridiculous name. These symptoms worsen my fecal incontinence and are socially and physically draining. I recently saw a colorectal surgeon hoping he could help me with an alternative like an artificial sphincter or something. Sadly, he said those alternatives have been taken off the market and the only thing he could do for me was a colostomy. I was thrown off by this as I surely thought there was something else I haven't tried. I left that appointment thinking I'd never choose such a thing, but the thought has been lingering in my mind and the idea of never worrying about making it to the bathroom again is honestly appealing. Maybe I'd actually have more life to live freely than I've ever before? But maybe it'll give me more problems like bag leaks and obstructions?
If anyone can give me their thought process on their journey, I'd love to hear. Am I crazy for considering this? I realize many people don't have a choice in theirs, but if you could have chosen, knowing what you know now, would you do it again? Anyone have a similar situation to me?
Thanks for listening. Looking forward to the conversation ahead.