Revisiting Ostomy After Takedown Surgery: Seeking Advice

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3
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501
smusa2015
Dec 01, 2022 9:47 pm

Hello everyone!

So, in 2015 I had a total colectomy and had an ileostomy made. In 2020, I had ostomy takedown surgery and it's been going terribly ever since. So, I plan on getting an ostomy again in January. Any tips? Has anyone else gone from ileostomy to takedown to new ileostomy? I didn't have this community back when I had the takedown surgery and I wish I had because I probably wouldn't have gone through with it since it's been so terrible and some of y'all have also had terrible experiences. So I'm just trying to make sure that I'm not making another colossal mistake. It seems like a good idea, but I just wanted to know about other people's experiences as well. <3

 

 

eefyjig
Dec 01, 2022 10:19 pm

Hi smusa, that's exactly what I went through - total colectomy in February 2010, j-pouch creation in May 2010, takedown in December 2010 (what a year!), and finally, permanent ostomy with Barbie butt in January 2015. My j-pouch was pretty much a misery, so I welcomed my last surgery. Healed well, got my life back. So, you had five years between your total colectomy and takedown? Did you have to be manually dilated all that time? If you have any questions, I'd be happy to help. Good luck to you!

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Axl
Dec 01, 2022 11:22 pm

Hello Smusa

Yes, I've been there too. It was a very difficult decision to go back to the ileo, but I couldn't go on the way it was; it was awful suffering through that.

If I had known what I know now instead of "you will be just like normal," I would never have considered it, but I didn't know any better then, unfortunately.

The experts tell me the pouch has about a 50% success rate; they didn't tell me that either.

And I'm willing to bet some of that 50% aren't living the dream either, but apparently, it works for some, so good luck to them.

Axl

 

eefyjig
Dec 05, 2022 4:24 am
Reply to Axl

Axl, I agree 100%. I didn't know that the J-pouch success rate was about 50%. I would've said no to mine.

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