Hello,
I am new here. I joined a while ago, but only started posting today.
I wondered if anyone has had this surgery and has any tips.
I know that it's better to have the pouch removed, if possible, but that is not an option for me.
I had my pouch created due to FAP and stage III bowel cancer, just over four years ago. It worked quite well to begin with. But I've gradually developed various problems.
I had finally come round to the idea of having my pouch removed when a routine CT scan last year found that my cancer had recurred. I am currently undergoing chemotherapy, which is aggravating my pouch even more.
My surgeon has agreed to create a permanent ileostomy, but he does not feel I am fit enough for an excision.
I was so pleased that my surgeon had agreed to the ileostomy that my mind went blank and I didn't ask any useful questions.
I have found all the posts on here about pouch removal etc very helpful, but haven't found much discussion of leaving the pouch in situ, nor have I been able to find much about this elsewhere on the Internet.
In particular I wondered whether anyone had any experience of an end ileostomy in this scenario. I've heard that it is possible. But is the pouch just sealed off at the top? I had a temporary loop ileostomy after my initial surgery and it had some problems because it was pulled quite tight by the other end being connected to the pouch. I wondered if an end ileostomy might be easier. I will discuss this with my surgeon at my next appointment, but I'd like to be prepared with possible questions, research etc.
Sorry, this post is getting rather long. I wanted to include all the relevant information. Thank you if you have got this far!
My surgery was over 8 hours but she spent 3 of them dealing with my adhesions and scars.