Considering Colostomy After Unsuccessful Reversal

My wife has had a reversal but has been finding that even after 4 years she still has to constantly visit the loo , making her very sore , we are unable to go for a walk any distance unless there are public toilets nearby , we cannot go to the theater or cinema , on our last visit to the hospital she was asked if she would like to have a colostomy which we are told she would only have to visit the loo once a day or every other day , it seems there are two types one with a plug or cap and one with a bag , we have to do some research on both options , the operation , the fore's and against's .



Any advice or info would be great

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outsider 221

Dear outsider, let me explain something first.When I was given my ileostomy in 2004....I was told it was only for 3 mths...then it turned to 6mths...then 9mths...yep you guessed it...then to 12 mths....in that time i put a letter in our country wide,3mthly  Ostomy newsletter..I needed to find out from others how they went with their reversal..Well, out of the hundred or so people who contacted me...50 of them had Crohns like me and out of the 50 who had the reversal, only 4 of them stayed with no Ostomy,the rest couldnt handle life with out that bag...So that influenced my decision hugely.I knew a lady whos husband tried for yrs to NOT go back to the bag,but he had to as his life was unbearable.I done a lot of research as well, and found the odds against me.So I told them,the doc's,they will never touch me again.,My life is a thousand times better than before...and I do know I have more to come anyway with a total colectomy..will be holding that off as long as I can also...So I beg you both, do a lot of checking and try to talk to others who have had the same procedure.Sorry I cant help with the colostomy side of it,but i do know a colostomy is way better and easier to handle than in ileostomy.Good luck with your decision...hope it is the right one....cheers Tara

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i had a reversal in sept. '08.  Was a rough recovery having to feel your bowels working again.  Was on the toilet alot.  Bowels perforated agin this past may and I'm back to 2 ostomies again.  doc wants to do another reversal but im just not sure

You didn't state the intestinal problem your wife has that started the process.



Rick.....

TARA why do you say a colostomy is way better than an ileostomy Rick

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Rick



My wife had cancer which was very low and it was touch and go as to whether she would be able to have a reversal , which she has had and now wish she had stayed with the bag as we are virtually prisoners in our own home and can only go out if there is a descent toilet on every corner  and having to use the loo so often is so sore .

It has been suggested that she could go back to a bag so will do as Tara suggested and find out as much as i can from people who have gone back to the bag , she has at the moment a colonic J pouch ( whatever that is ) but it not seem to be working this is after 4 years .

Thanks guy's for your feedback will continue to watch this space .

Outsider 221

I've been going back & forth with this issue.  I understand how your wife feels.  The first time around, I had my bags for 10 months and couldn't wait till my reversal.  Like I said in a previous post, it was a difficult & painful recovery. EXTREMEMLY sore from so many bathroom visits.

I still use the bathroom quite frequently with the bags back.  Sometimes, we'll go 2 dinner & I'll be in the bathroom 3 or 4 times during dinner. I simply ask for a table near the restroom. If people stare because I use it so much, then so what!  Let them stare!

I do know, I feel better physically now with the bags, then I did after the reversal without the bags!

Hubby & I were just discussing this issue the other day.

These bags are really a pain in the neck but it comes down to a quality of life issue.  I felt bad physically AFTER the reversal so....not sure if I'm going to do it again.

Hubby wants me to try it again but it's not his body, it's mine!

Praying for you & your wife to make the decision that works best for the two of you.