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Re: Did anyone ever decide to go back to ileostomy after reversal

Posted: Wed Aug 28, 2019 3:12 pm
by Zod
Can you get a third opinion on whether the surgery is needed?

Also, can't tell if you took the second opinion (and their findings) back to the first? Try that as well?

Re: Did anyone ever decide to go back to ileostomy after reversal

Posted: Wed Aug 28, 2019 5:16 pm
by stu
Hi ,
I don’t think it’s a ploy or he would have tried to influence you to go to his facility. Given he does not care where you get it done more burdened that you do !
My mum has always gone with the option that had the best chance of cure . You have lots of years ahead of you and giving yourself the best outcome makes sense to me .
I can’t advise on the finical side , Sorry .
Take care ,
Stu

Re: Did anyone ever decide to go back to ileostomy after reversal

Posted: Wed Aug 28, 2019 5:28 pm
by Rikimaroo
Your right Stu and I agree wholeheartedly. I sent a message to my oncologist and he said it like this bluntly, rikimaroo stop going off on tangents and messing around this is your life we are talking about and you already made a mistake before don't make it again. He is right, these guys know what there doing and I know bringing in another doctor for a 2nd opinion is fine but at the same time we are still doing the same exact plan, wait until October 1st for the pet scan review and I already had surgery tentatively scheduled for October.

Anyways thats the update. CEA is 1.5 at the moment.

Thanks guys

Re: Did anyone ever decide to go back to ileostomy after reversal

Posted: Wed Sep 04, 2019 7:11 am
by Jachut
I went back for a permanent colostomy two years later.

For me, the only acceptable outcome after all my treatment was over was normal bowel function. My surgeon spoke about eight bowel movements a day and never sitting through Titanic again as if that wasnt a big deal. I hated it, it made life miserable, particularly since I could never empty properly.

I'm MUCH happier with a colostomy. Its still problematic in my ways but its better than going commando was.

Re: Did anyone ever decide to go back to ileostomy after reversal

Posted: Wed Sep 11, 2019 5:43 am
by smudgesicle
I opted for a permanent colostomy after 7 months of a nightmare reversal. I was in pain, incontinent, going 20+ times a day and getting no sleep. That was 5 years ago last week. It was the best decision I've ever made for myself. My quality of life is so much and I'm really not limited in any way.