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deciding if i want to keep my ileyostomybag !!!???

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Posted 10/21/2011 5:32 AM (GMT 0)
so i just had sugery 2 weeks agand finally got the better wafer convex and i enjoy it ..i feel comfortable with it dont know why my family doesnt want me to keep it (my mom) my grandma isn't really following all of it but if you get a permanat bag is that desicion forever and is there no changing your mind if you make it permanate have 2months to decide !!!!!
Posted 10/21/2011 9:55 AM (GMT 0)
the surgery of creating an end ileostomy (permanent) usually includes removal of the rectum, and if that's the case, there's no way back. they can also do an end ileostomy w/o removing the rectum and in that case there's still a way back, but the reversal will be harder than a reversal of a loop ileo. much harder. and i think it requires open surgery.

but in your case, there would be no point in creating an end ileo with leaving the rectum in, since you already have a stoma. first of all, don't stress about time limit, cuz there isn't really time limit of how long you can stay with a loop ostomy. some ppl have hard time deciding and stay with it for even a whole year. some ppl even more. i personally know one guy who had surgery. he has a loop ileo and has the option of closing it (have a reversal), but he doesn't want to do it now. he is very comfortable with his stoma and wants to finish his university degree first. and even after that, he's not sure he wants to have the reversal. he's had his loop stoma for more than a year now.

there's no time limit and you can stay with a loop ileo even all your life. i have a loop ileo since July 2010, which is more than a year. i'm happy with it and i don't want to ever close it. i can if i want to, but i don't. i can go at any time, even like ten years from now and ask the dr to close it, but i won't cuz i know there's no chance my rectum will ever work right.

the only thing you should take into consideration is that the longer your rectum/anus are not in use, the more they develope atrophy, so then ppl who stayed long periods of time with a loop ileo (talking about a year+), they need to do some biofeedback theraphy to wake up the rectum's and anus's muscles and make sure they are working right. but 1 or 2 mons more to help you decide won't make a significant difference.

good luck with your decision!

Post Edited (2b ColonFree) : 10/21/2011 4:01:21 AM (GMT-6)

Posted 10/21/2011 10:55 AM (GMT 0)
That's great that you're doing so well already! I would just focus on healing from the surgery and getting back to your regular life. Then you can see how it goes and what you want to do. As Hodaya said, you have time.
Posted 10/21/2011 7:49 PM (GMT 0)
Jackie glad to hear the convex wafer has made the difference. Go slowly as others have said and take time to heal. You are the one who decides which is best for you to pursue. Having a choice however is nice as you are not locked in if you would like to try a j-pouch.

(Hubby wanted to give it a whirl but it was not meant to be for a lot of very valid reasons and he came to terms with that and adjusted right away.)

Glad you are on your way to getting back to enjoying life once again.
Posted 10/21/2011 8:41 PM (GMT 0)
I had a loop ileostomy when I was 20 yo and decided the day after the surgery that I would never have it reversed. I had been through 3 years of hell and pain so bad I wanted to go to sleep and not wake up until pain had gone. In those days they would not give any sort of painkillers for CD and so had to struggle on alone. When I came round from the surgery I had no pain at all and no running to the bathroom, it was a miracle moment and changed my life. Then again when I make up my mind that's it and to me my choice was keep bag and no pain or reverse it and pain and d again. There was no other choice but remember this was many years ago when I had mine done whereas now there are more medical options available.

I agree with the others in that you don't have to have it reversed in two months or decide in that time. You can take longer if you need to, if you need longer then keep the loop ileo until you can come to a firm decision one way of the other. Every person is different and if you need more time then take it, they can't operate if you don't agree.
Posted 10/21/2011 11:57 PM (GMT 0)
Just go with what works for you. All my life I listened to and worried about other people's opinions. Too long of a story to tell, but that is what eventually landed me as an ileostomate and I had no disease! Go with what works for you and keep in mind the time limits mentioned in this post. You have much more time to decide. Good luck and happy healing. Rosemary
Posted 10/22/2011 7:14 AM (GMT 0)
so making sure i compreheand this right i can tell my doctor that want to keep my ileostomy bag longer (as long as i want ).and not have the 2nd sugery to finish the j-pouch and at the same time they DO NOT have to close my rectum until i personally feel that i want the sugery finishedor my rectum closed
OR i can stay the way iam now with the ileostomy bag and not have my rectum swen
if what i just comprehened is right THANK YOU I LOVE YOU ALL I WOULD HAVE NEVER FOUND THIS INFORMATION WITHOUT YOU GUYS.
p.s. just venting i did none of my homework while out :/ but iam going bac to school this comming monday i feel like i failed because i wanted to stay ahead only to allow my self to relax and heal of course and fall behind n class work GIANT SAD FACE :(
Posted 10/22/2011 1:02 PM (GMT 0)
Jackie, you didn't fail because you didn't do your homework while you were having and recovering from MAJOR surgery. Think about how good a job you would have done on all those pain meds -- there's one reason why teachers don't want kids to do drugs!

Yes, you can wait and not have the 2nd step surgery and keep the loop ileo. If you want to keep the ileo permanently, at some point you might want to convert to an end ileo and sew the rest shut.
Posted 10/22/2011 2:46 PM (GMT 0)
Everyone has already given you good information, but I also want to add that, if you do get your other surgeries to start using your j-pouch, that doesn't have to be permanent either. If it turns out you don't like the j-pouch, you can have it undone and get your ostomy back. I think you should give it a chance, because I love my j-pouch, but of course it's your decision.
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