I haven't had it, but am thinking about scheduling mine. From what I've researched, it shouldn't be any more invasive than getting the stoma. So, I'm planning on 5 days in hospital, but giving it 3 weeks (just in case of other complications). For me, it's not an option to have it removed, or not...I need my stuff out! My doctor said that the longer it stays in, the greater chance you have of cancer. I don't need Crohn's and cancer too!!
Sorry this hasn't been more helpful Sharon. I know you have other concerns to think about....but if you keep your stump, the chances for cancer increase with every year you keep it. My doctor said that the max I can keep it is 2 years. I wish they had removed everything with my first surgery...but oh well...
Good luck...I hope you get it sorted out soon! It's a tough decision.