I have been told my hopes for a reversal are over and I will have to have J pouch surgery. I don't really have a clue what that means in terms of how life with a j-pouch will be VS the last 2 years of living with a colostomy. I hate to ask anyone to relive any part of an unpleasant past but any help or advice would be appreciated. I'm completely in the dark on this and frankly trying to come to terms with things. Any advice out there?
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I don't understand why you have to "have" j-pouch surgery. Are you happy with your colostomy? I'm assuming you've had your colon removed already. If you have had the offending organ removed and doing well you might not want to get a j-pouch. Please give us a few more details.
I had half my large colon removed and have been told I now have to have the remaining half and my rectum removed because of the UC. Your question is valid though. Life with the bag, while odd, hasn't been terrible. No pain or issues at all. My mother died of colon cancer and we have a strong history of it in my family. My fear is that my infected remaining colon will lead me down that path. Unfair question but given the choice of living a "normal" life with a bag or having the J pouch surgery....what would you choose? Is the J pouch life every normal ?
The majority of people who have J-pouch surgery are glad they had it, and most of them aren't having significant issues (or describing them in these forums in scary detail). On the other hand, the folks who have the surgery have chosen it over a permanent ileostomy, so their overall satisfaction is probably partly due to a good surgical outcome, and partly due to having a more natural external appearance and body image.
J-pouch surgery is more complex than a permanent ileostomy, and the recovery is more challenging. As Marie points out, you don't "have to" have it. Both paths tend to lead to reasonably normal, healthy lives (the exceptions to that are easy to find here). With a well-functioning J-pouch you can expect 4-6 poops daily, softer than with a colon. Some folks adjust their frequency or stool consistency with things like Metamucil and Imodium.
I chose a J-pouch because I strongly preferred to avoid an ileostomy, if possible. It turned out that I got healthy enough to take up some activities that would have been rather complicated with an ileostomy: scuba diving and martial arts.
Whatever you choose, I hope it goes very well.
All I hear is how everyone is so different... I had first surgery August and 2nd surgery October. I hated the colostomy bag, we were not friends! But I will admit this has been rougher than I thought it would be. But everyone says to give it a year. I would still choose not to have a bag! Hoping to get on with regular life- food, activities.
I have happily had my jpouch for 16 years. No regrets.
Hello...J pouch surgery is not for everyone. And there are some who were told they could have it only to find that it didn't work and had to have an ileostomy permanent. So, it is a personal and medical decision only you and your Dr. should make. By no means should anyone persuade you one way or the other. As far as being normal...I hate that word. No one is normal in this world!!!!
I'm a little confused, you said the bag experience was odd, but then you seem to indicate there were certain foods you couldn't eat and yu had problems. Just need clarification. thanks
