another question about surgery..

LSU, most people these days end up with what is known as a "J-pouch." The surgeon makes a pouch out of a bit of the small intestine to substitute for the rectum, and reconnects everything. If you do a search under "J-pouch" you'll find a site that thoroughly explains the procedure and has a community like this one where you can talk to people who have had the surgery. The link isaddress is http://www.j-pouch.org/

You'll find that, while there can be problems with the pouch for some, most people do very well. Hope this helps you.

Hi LSU,

it is really possible. People are right on talking about the jpouch. I had these surgeries done last summer when I was 24 and it was the best thing I have ever done. It is a very major surgery and it is not for everyone, but I was ready and I am glad I did it. Life with a jpouch is not quite the same as with a healthy colon, but it sure beats the heck out of UC.

You can also have these surgeries done laproscopically-assisted in some cases so you have very minor scarring.

Another option is a procedure called the BCIR. We used to have someone on here who ended up getting that.

The jpouch.org site is a good place to start your research for any type of these procedures. Don't be scared reading through the boards, like here the people who post most are often those having the hardest time.

Depends a lot on how the surgery is done, and what state of health you are in at the time. Sometimes the surgery is done in 3 steps, sometimes whole lot - colectomy, j-pouch formation, temporary stoma - done in one op.
If no complications, home in 10 days, rest up for a couple of weeks. Of course it takes quiet a long time to get over even the simplist of surgeries, but bearing in mind how well you will be after the surgery, its easy to put a positive spin on your recovery. For what its worth, my only regret is that I didn't have the surgery sooner. L x

If you're thinking about it though, you should start looking around. I've talked to 4 surgeons (not 100% trying, just talking about options) and none of them recommended the jpouch b/c THEY don't think it has a high success rate. They didn't even want to try it. I don't understand though b/c if it doesn't work, it's not like you can't go back to just an iliostomy, so i don't know why they wouldn't even try it. If I'm going to go that route, I want someone who if gung-ho and ready to do a SUCCESSFUL jpouch, not someone who doesn't think it will work.
I do know that when you're younger and not as ravished by the disease, you can heal better, so if all this medicine does fail I will try and do it sooner rather than later too.

Are you consulting with colorectal surgeons?  If you have met with 4 surgeons who don't recommend a j-pouch then I would not attempt to have surgery with any of them.  The j-pouch is considered the gold standard surgery for those wanting to get rid of their colon due to UC.  Patient satisfaction rate is 95%.  I am surprised that you haven't found a surgeon in support of it, that's about the only surgery that new CR surgeons are being taught.  It is fairly common to find a good well trained CR surgeon in any metropolitan area.

Sue

I had a total abdominal colectomy with ileo-rectal anastomosis, which is a surgery where they remove all of the colon from the abdominal cavity but leave the rectum and sometimes the very bottom of the sigmoid colon.  My surgery was done September 5 of this year with an open incision and I've been back to work for a couple of weeks.  My surgeon said that only about 5% of the patients he sees for surgery are candidates for this surgery and I was given this option only because my colitis did not involve the rectum or sigmoid colon.  High grade dysplasia was found in the ascending colon after a 28 year history of colitis and after the colon was removed a very small cancerous lesion was found in the same part of the colon.  No cancer was found in the lymph nodes so I was told that no chemo is required.  If dysplasia or cancer ever shows up in what was left behind I should still be able to have the j-pouch surgery.  I will have to be "scoped" at least once a year with biopsies and am still at risk for colon cancer.  With the j-pouch surgery I was told that the risk of colon cancer would be virtually eliminated. 

I think that most people who have the entire colon remove can have the surgery without a permanent ileostomy by having the j-pouch surgery but there are exceptions.