Jenivi,

I had my takedown done last December at 53 years of age. I had to have all of my rectum removed because it was so diseased. I don't have a problem with incontinence and my pouch functions fine. Find out from your surgeon if your sphincter is intact so you can stop worrying. If your surgeon says he can't do a J-Pouch because you don't have a rectum, find another surgeon.

quote:

Maybe I'm missing something - how can someone be creating and passing mucus if there is no rectum or intestine attached to the anus?

I called my surgeon's office! Well, he wasn't there but his nurse looked at my file and said he left about 1" of rectum beyond my anus. So I have an anus + 1" rectum. Would this still warrant a hand-sewn pouch? Leaving only this much still seems kind of weird to me. Maybe I'll need consult with another surgeon.

Thanks.

I wasn't aware that you could have a J Pouch with the rectum completely removed and still maintain continence. I have the traditional set up with J Pouch and rectal cuff, and my continence is excellent. In fact it is much better than when I had UC at the end, when there was a mad rush whenever I had the urge to go.

This message has been edited. Last edited by: DJBHusky,

I think I need to do a sphincter test. Continence is a big concern of mine. If I am not continent, I honestly would not want the j-pouch. Incontinence would remind me too much of UC and I think I would get depressed. I am still getting used to the bag, but I kinda like not pooping thru my bum anymore But I still want to do my research for when I am ready. Thanks.

DJB,

Leaving the rectum intact is not the norm with a j-pouch procedure. Generally, it is removed and only a small rectal cuff (1-2cm) is left to preserve the nerves of continence. If most of the rectum is not removed, UC generally returns, causing severe UC symptoms and unacceptable function. But, to perform the procedure, enough tissue needs to be left to work with. Usually, when an emergency colectomy is done, the entire rectum is left in place to make it easier for future j-pouch surgery.

Jan

Jan,

I have the traditional set up you described. I was not clear in my prior post because I thought what was being discussed was zero rectal tissue. In any event, with that traditional set up, I have excellent continence which I would rate as vastly superior to the lack of continence I had with a full rectum pre-colectomy. When my colon was removed in 1992 it was almost dissolving in my surgeon's hands from what he told me, after 20 years of UC.

I modified my prior post so there is no confusion.

I hate my surgeon! Sorry, but what was he thinking taking out so much rectum. He should have left the whole thing in there, even if it was very diseased. From what I've read here, they always leave the rectum, even when it's really bad. Why, why??? BOO on him. Do you think scar tissue is now covering it and it can't be found? I think I am going to cry now.

Jen, you are not the only one this has happened to. It is generally due to the fact that surgery was done under emergency circumstances and there was no time to find an experienced colorectal surgeon for the job (something those who are sitting around trying to decide what to do, while their condition continues to deteriorate should keep in mind). While a general surgeon may have the skills to save your life, he may not have the skills for j-pouch surgery.

But, Jen, it sounds like you still have options. Also, a sphincter function test (anal manometry) may or may not indicate whether you will have good function after j-pouch surgery. Often, there is weakness while the ileostomy is in place and the sphincter tone improves with use. Anyway, seeing a skilled surgeon will answer your questions.

Jan

P.S. Try not to hate your surgeon. He probably did what he could in the situation.

thanks, trying not to hate him, but now I may need a 2nd operation just to remove a useless piece of tissue he left in there.

What do you mean I still have options?

p.s. oops, forgot to ask them if I still have my sphincters. I think I should? I'm a doofus.

Love,

This message has been edited. Last edited by: Jenivi,

Yep, that is what I had. My rectum was too diseased to save to I had to say bye bye to it. Pouch still works fine.

I meant that you still have options in respect as to what you can do. You can still possibly have the j-pouch surgery, if you consult with someone who does hand-sewn pouches. If your first surgeon had completely removed the entire rectum and sphincters, then your options would not be there. So don't consider that piece of tissue as useless just yet.

Jan