Ostomy Surgery

In this discussion
Replies
3
Views
434
smusa2015

Hello everyone!

So, in 2015 I had a total colectomy and had an ileostomy made. In 2020, I had ostomy take-down 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 --> take-down --> new ileostomy? I didn't have this community back when I had the take-down 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

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,089 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

eefyjig

Hi smusa, that's exactly what I went through - total colectomy February 2010, j-pouch creation May 2010, takedown December 2010 (what a year!) and, finally, permanent ostomy with barbie butt 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!

Gray Logo for MeetAnOstoMate
Axl

Hello Smusa

Yes been there too, was a very difficult decision to go back to the ileo but I couldnt go on the way it was, it was awful suffering through that.

If I had of known what I know now instead of "you will be just like normal" I would never had considered it but I didnt know any better then unfortunately.

The experts tell me the pouch has about a 50 success rate, they didnt tell me that either.

And Im willing to bet some of that 50 arent living the dream either, but apparently it works for some so good luck to them.

Axl

eefyjig
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.

All times are GMT - 5 Hours