Hi everyone, my name is Renee and I just joined the
> group, I have a
> question though, I am having my J-pouch surgery in
> April but for
> different reasons than alot of people and I am
> wondering if anyone
> else has had the same thing. I do have UC but it is
> currently under
> control and though I have had it for 12 years it has
> never been bad
> (it has stayed in my rectum and is very controllable
> with Asacol
> suppositories), I am having the J pouch surgery
> because I have a
> rectal prolapse which is very rare for someone my
> age (29), there is a
> surgery just to fix the prolapse but my surgeon told
> me that if I have
> this surgery then in the future if I need an
> ileostomy which he says
> would be probable in 10-20 years as there is colon
> cancer in my family
> (an uncle died at 30) then I would be stuck with an
> external bag for
> sure. So we have decided to do everything at once so
> I can have the
> J-pouch. I am just wondering if anyone else has
> experienced this? I am
> a bit nervous about the changes the surgery will
> bring as I know that
> for most people it is a relief but since my UC is so
> mild and under
> control I have not experienced the problems that
> most people have as
> of yet. Anyway thanks for reading, talk to you all
> soon!

Welcome to the site Renee.I would think long and hard about what I would want for my future and pick the right course of action to achieve that goal.Good luck on what ever you decide to do,but be comforted in the knowledge that you can come here anytime to get caring support and excellent advise.God bless.

If you don't have the J-pouch surgery now and just fix the prolapse, why would you be stuck with an ostomy if you end up with cancer later on. I know that it is a possibility but as long as the cancer isn't in the sphincter or very end of the colon those parts can remain and be connected to the j-pouch. One of my dads friends had colon cancer and had a j-pouch constructed. Also if the rectum must be removed you can also get a k-pouch or continent ostomy that requires no external bag.

You say that you UC is controlled easily and not a problem. How often do you get a flair and how and how many bm's/day?

I would be stuck with the ostomy because after the the prolapse surgery everything will tighten and have strictures, he said it just will not work if it ever needs to be connected to a J-pouch, also because my Uncle had colon cancer the surgeon who specialty is oncology said that the cancer I would get would be much more fast moving so to speak and very hard to contain so if I did get it the whole colon would be taken, my colitis is actually proctitis meaning it basically goes all the way down to the anus and that is causing all the issues.

Hey Renee, I was diagnosed with stage 1 colon cancer last year (at the age of 23). I had my entire colon and rectum removed. They did a mucosectomy on the little part of my rectum that was left (they basically strip off a layer of mucosa). I had a pouch constructed. I do have a stricture, but my surgeon said this probably is due to the fact that I have a long torso, and it was a bit of a 'stretch' to get my small intestine to reach down to the anus. A stricture isn't the end of the world though, it's definitely annoying though, and I've been dilated several times and will soon be doing daily dilations to keep things open. I've also heard that the first surgery is the 'easiest' and any subsequent surgeries can be quite difficult due to scar tissue & strictures caused by the first surgery. I guess if your doctors/surgeons agree that it may be inevitable that you will lose your colon, then it may be the better decision to just do it all the first time. The less surgeries you have, the less risk you have of adhesions forming, etc.

Hi Pixie,

Thanks for the info, he did say they will strip the mucosa as well and that I will also probably need to be dialated, is it painful when they do it? Did you have the surgery in one stage or 2? Thanks,

Renee

I had 2 steps, 6 wks apart. Being dilated is not too bad, I've been sedated for all of mine so I have no memory of the procedure. Afterwards it feels a bit uncomfortable for a day or two. Mostly it feels like someone jabbed you really hard in the tailbone.