Did anyone ever decide to go back to ileostomy after reversal

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Zod
Posts: 12
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

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

Postby Zod » Wed Aug 28, 2019 3:12 pm

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?

stu
Posts: 1183
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Wed Aug 28, 2019 5:16 pm

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
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Rikimaroo
Posts: 246
Joined: Tue Dec 20, 2016 8:48 pm

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

Postby Rikimaroo » Wed Aug 28, 2019 5:28 pm

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
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Jachut
Posts: 1134
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

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

Postby Jachut » Wed Sep 04, 2019 7:11 am

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.

smudgesicle
Posts: 125
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

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

Postby smudgesicle » Wed Sep 11, 2019 5:43 am

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.
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy


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