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Ileo -> Proctectomy/Colostomy or Turnbull-Cutait Procedure...Anyone Have Experience?

After years of failing to get closure (medically and surgically) for recurring fistulas, I am exploring additional medical and surgical options.

I currently have a temporary ileostomy and don't want to give up and go to a permanent proctectomy and colostomy (but realize that may be the end game), but I also have learned a little more about the Turnbull-Cutait procedure through a second opinion at Johns Hopkins. I understand Cleveland Clinic does most of them but that I may not be the ideal candidate. So...

1. Has anyone here (especially with the fistulizing form of our disease) have experience going from an ileo to a permanent proctectomy/colostomy? Thoughts on quality of life before/after?

2. Has anyone (realize probably not) had the Turbull-Cutait procedure or at least considered it? What are you experiences/thoughts?

Thanks in advance for your sharing!
 
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