Im in the same boat as NJ Publish, Im a 33 year old male from Long Island NY, diagnosed with uc 10 years ago. I had 2 colonoscopies in the last month and it was confirmed that I have LGD. My colitis for the past 5 years has been under control I have been living my life as best I can, I mean I still have urgent runs to the bathroom and all but still better than when I was first diagnosed. Im afraid that I will be worse off after surgery. I love the outdoors, surfing, mountain biking, rock climbing, soccer...etc. Wonder if I will ever be able to get back to it. Im going tomorrow to start the discussion of surgery. Im scared as hell, I feel lost, and the more I look online it seems that the complications with this surgery are overwhelming. Im panicking.

JRNYC,

The people who are posting here are primarily those with problems. This is a small sampling of those who have had surgery so you should not draw any global conclusions.

You should also think of the alternative to not having surgery: colon cancer. The risk goes way up after 10 years. To me that was a much more unsavory alternative and one that should have you much more scared. The UC does not get any better, in most cases.

I was LGD too before my surgery.

Good luck. The good news is if you are on Long Island, Mount Sinai is not that far.

For inspiring "active" jpouch stories, read this:

http://j-pouch.org/eve/forums/a/tpc/f/5851071921/m/1481050782

Sue

Many of the people here were in the same boat. And I know it's a scary and shocking place to be, especially when you thought that things were going well. When I was in a similar position to yours, I would not accept that there was no good alternative until I heard 3 opinions on my case.

Your quality of life afterwards will depend a lot on having a positive attitude. Yes, there are complications here and there, but the overall satsifaction rate with a J pouch is over 90%.

Good luck with your surgery discussion tomorrow. Be sure to ask your surgeon how many of these procedues he/she has performed before as well as whether he/she does the procedure in "open" fashion or laproscopic. You will want a surgeon who has a good deal of experience with this surgery as well as specific experience in laproscopy if you decide to go that route.

Rick

JRNYC,

I can't make a decision for you, but hopefully by sharing with you my decision-making process, it can give you an analytical framework for your decision. My decision relied heavily on advice my gastroenterologist gave me, advice my surgeon's former patients gave me, as well as an inspirational passage I had read about legendary UCLA basketball coach John Wooden. Because I had surgery back in 1992, and the Internet had not yet been invented by Al Gore and the J Pouch Group website did not yet exist, I did not know about all of the cumbersome and horrifying details of possible complications That is probably a good thing, but take what you read here take with so many grains of salt. It's a small slice of the pie of J Pouchers, and most people here are here because things are not peachy.

My starting point was my GI specialist. He told me: "you have had UC for 20 years. Your last two colonscopies show that the inflammation has spread and the whole colon is now involved. You need to have your colon removed sooner or later. If it's later, your risk of colon cancer is and will be dramatically increased in the interim. Also, consider that by waiting, you may get worse and be on so much prednisone that the surgery will be difficult for them to do. Do it now while you are young (29 at the time) and still relatively healthy."

He was very frank with me and I am eternally grateful to him for that.

The next step was to talk to patients of my surgeon, the legendary but unfortunately late Dr. Irwin Gelernt of Mount Sinai Hospital in New York City. I realized he only referred me to the patients of his who had had good results and no complications. But they all told me their quality of life was much better. They were pleased and relieved that they had the surgery. But they also told me the surgery was a very tough time, and there would be a long road back from it to complete recovery and adjustment. One guy even told me he thought he would kill himself while he had the temporary ileostomy bag. He explained that the bag had broken during sex with his girlfriend, spilling the contents all over her abdomen and pubic area, and she was so horrified by the experience that it had effectively spelled the end to their relationship.

Finally, as a huge basketball fan, a longtime UConn season ticket holder, and former youth basketball coach, I recalled something I had read about legendary former UCLA coach John Wooden. It was written by his greatest star player, Kareem Abdul-Jabbar. Kareem, in his biography, praised Wooden's temperament and his ability to relate to and communicate with his players, but his greatest praise was reserved for Wooden as a tactician. Kareem noted that what made Wooden great was his ability to map out possible game situations "and eliminate the ones that led to defeat." Kareem gave an example of one game where Wooden called a timeout, explained what the other team was going to do, and outlined three possible outcomes depending on how UCLA was able to defense the play. Two of the outcomes led to the other team possibly winning if UCLA did not do what it was supposed to do; the third led to a worst case scenario of the other team hitting a game-tying basket. UCLA then implemented the defense which in fact led to the worst case scenario of the other team tying and sending the game to overtime. UCLA then used its superior size and depth to win the game in overtime against its foul-plagued opponent. Wooden had eliminated the possibility of defeat.

I kept thinking about this and my thought was, if I remove the colon, I remove the disease that could lead to colon cancer and kill me. I had to eliminate the possibility that colon cancer would kill me. I knew there were risks with the surgery of course, including death, but somehow I had confidence in my surgeon and the colon cancer risk seemed so much more real. I had to eliminate the possibility of defeat from colon cancer, just as Wooden had eliminated the possibility that his UCLA team could be defeated in different game situations.

Well, the surgery wasn't easy by any means, and I had basically every complication you can have - ileus and blockages, yeast infections, leaks with my ostomy bag, post surgical infection, insertion of the NG tube, and some years later, pouchitis, which has become a chronic thing. But 16 years later, my life is pretty good. I have never looked back once and regretted my decision. And I always smile when I see John Wooden on the sideline at a basketball game, because he provided some level of inspiration for me.

Good luck, and I hope you can find some strength in this.

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

Man, I am wayyyyyyyyy active and take part in Golf, Soccer, Yard work, outdoor activities, jet skiing, tubing, boat riding, beer drinking and all kinds of things.

I did this prior to surgery and I have and will continue to do it now that I have had surgery.

Don't worry about "what if's" or possible complications. Worry about them "if" they happen and not before. If you think you'll be a statistic, you probably will be.

Even if you have complications, it is far better off than the alternative and you'll be far better off not having the very real possibility of cancer hanging over your head. I had it, I kicked it's butt.

No doubt there are possible complications after surgery. However, the positive outcomes far outweight the negative ones (and bless those who have had them)...........like I said, don't fret about "what if this...." or "what if that.....".