Hi all, have been reading alot and trying to learn about such things becouse I'm heading for surgery.Have had UC for about 12 years and tired of being afraid of getting too far from bathroom. My doc. has told me I need to have my colon removed before it turns to the big C. I see on this site that some of you have had the J pouch and then went to K pouch. My question is which one gives you more freedom?. I'm not worried about haveing to insert a tube, I'm more concerned about freedom from sitting on the john 6-7-8 times a day.If I have to have surgery I want to be able to go out and not worrie about it.

I have a Kock pouch, but I had no other choice back in the old days. If I had the choice today, I would go for a J-pouch.

It depends on what you consider freedom. For me, freedom means being able to just pick up and go and not have to worry about equipment. I have to sit on the pot several times a day to urinate anyway, so it matters little to me what I am doing in there. I have great control and no butt issues.

However, for others, freedom means never having to have to have a bowel movement because they have had so many problems with leakage, pain, perianal disease, etc. For them, an ostomy, continent or not, is freedom.

Of course, if you skip the J and go straight to the K or end ileostomy, you just won't know what you are missing and cannot go back. But, if the J does not work out for you, the ostomies are an option. This is why the J is generally recommended as a first choice.

Jan

Do you sleep through the night? I read that most have to get up 1-2 a night with the j but not with the k pouch. So theres no going from k to j? only j to k?. I sometimes wish the Doc. would tell me ok this is how it has to be, just can't seem to decide which is best and don't want to have to do this again if I don't have to.

Well, for any choice, you will be getting up at night at first. And, neither one is a simple procedure, so don't expect a simple recovery.

I had issues with cuffitis that were not addressed early on (I didn't know any better and this site was not around yet), so I was up 2-3 times a night. But, since that has been treated, I sleep through most nights. I have no leakage and I do not have urgency. When I feel I need to have a bowel movement, I can still delay it an hour or two.

With a Kock pouch the rectum and anal sphincters are usally removed. I suppose it could be possible to leave the rectum in place for a possible future j-pouch, as they do with an end ileostomy for the 3-step procedure. However, you will continue to have disease in your rectum that will probably require treatment. Plus, you may find it difficult to find experienced surgeons in your area that still do the K-pouch, since it has been virtually replaced by the j-pouch. Since you say you have been advised to have surgery to prevent cancer, have you been told you have dysplasia? If so, leaving the rectum in, is not really an option for you. Otherwise, your cancer risk may not be as high as you think.

You are smart to get all the info you can so you can make an informed decision.

Jan

Yes I have dysplasia, they told me there where 3 tyoes of surgeries, and I'm trying to educate myself before I go in on the 5th of April.

To help you with your self education, here are some links you may find helpful:

http://www.ccfa.org/info/surgery/surgeryuc

http://www.webmd.com/ibd-crohns-disease/colitis-guide/U...tive-Colitis-Surgery

http://patients.uptodate.com/topic.asp?file=digestiv/10295

http://www.clevelandclinicmeded.com/ccjm/march2003/lashner.htm

Jan

I've had a Kock for a long time. The first was done a looong time ago. As Bodoni said at that time the Jpouch was not available. There was no choice.
As Jan said, if there are problems with the Jpouch there is the option of going to a Kock,depending on the situation. There are also more surgeons who are well versed with the Jpouch, which means it is easier to find a surgeon who is well qualified to perform this surgery and follow your progress. As for the Kock, having a very experienced surgeon is MOST important and you were given the names of docs in another post. There is a possibility that a surgeon near you can follow your progress and attend to any concerns you have. BUT, if you have problems you will have to travel back to the surgeon. I am lucky enough to have someone near me at Cleveland Clinic Florida. This could be an important factor for you.

Jan also made an excellent point as to what you consider "freedom" I travel with "equipment" whenever I go somewhere.Sometimes using a public restroom might be awkward.....but that's just the way it is and you get used to it.

I just wanted to add my thoughts.....and also remember that whether you are thinking of the J or K, many people who come to the boards are looking for advice due to a problem...there are many many more who are living happy healthy lives and a few visit here and elsewhere to help others out.

Bill B,

Ditto to whats been said above. I have had a J, a K, and an end ileostomy. If I had my choice, I would have a healthy colon..... but that isn't an option. I currently have a Kock pouch, and I am finally healthy. I had a colectomy and J pouch back in 2001. It took some time to adjust to the J pouch, but once I did, I loved it. I am one of the few who had problems that resulted in removal of the J pouch. I then was given an end ileostomy which resulted in more problems. Again, I am one of the few who have problems with an ostomy. Last year, I travelled 1700 miles to have a Kock pouch done by Dr. Dana Launer in San Diego. I am absolutley happy to have the K pouch, it saved me in more ways than one. Having said that, if I were in your position right now, still with colon, I would persue the J pouch first.

First: The J pouch isn't as technically challenging and many, if not most colo-rectal surgeons, will perform them, though I would suggest that you find one that has done a lot of them and has a lot of experience doing them. The J pouch is currently the gold standard in colo-rectal "replacement".

Second: As Jan said, the J pouch, when working properly, is as convenient as having a regular colon. When you feel you need to go, you find a restroom. If you need to hold it a while, no problem.

Third: Kock pouch, BCIR (modified Kock pouch), or ostomy; you have a stoma, a hole in your abdomen. Aside from the obvious body image issues, there is a hygene factor to think about.

Fourth: The J pouch doesn't need external, mechanical gear to evacuate waste. Ostomy supplies are expensive, sometimes Ins. won't cover them. K pouch gear can be a pain to lug around with you, and you definately need to have it handy, just in case of an emergency.

Bill, whatever you do, make sure that you are informed and that you and your doc communicate about your concerns and questions. You are the one who is going to live with the outcome, not the doc.

Best of luck,

Les

One thing more to consider: if you go with the J-pouch you retain the rectum which is still susceptable to UC as Jan said.

I also had dysplasia in the decending colon which lead me to the J. My surgeon said at the time that I had a 5%(?) chance that cancer could develop in the rectum after a colectomy/J. It seemed like a good lifestyle decision but then 4 years later I became a 5%'er and developed a cancerous lesion in the rectum so I was off to the Cleveland Clinic to go from a J to a K. Looking back during all the 30 years I had UC, my problem with the sensation of urgency eminated from my rectum and I theorize that had I pressed that fact better while in the planning stage they might have suggest going straight to a K.

So depending on your history this may be something to explore...

Good luck!

If your rectal area is not involved with any disease process, I think a J-pouch would be the first choice. You can always go to a Kock Pouch or Ileostomy if the J-pouch for some reason wouldn't work out. I agree, most people with a J-pouch are out living their lives and don't come to the boards. Good luck with whatever you decide.

I have a Kock Pouch and I am very happy with it. I had it done in 1978, before the J-pouch was invented. It is a more complicated surgery and you need a doctor that has done alot of them, personally I would go to the Cleveland Clinic. I don't mind using a catheter or carrying around supplies, it is just a part of my life now. I have lived longer with a Kock Pouch than without one. I have a functioning pouch and valve, I am very lucky and treat my pouch with respect. I don't let it get over full and I am gentle while emptying my pouch. If I can't get my catheter in right away...no sweat, I know it will go in. Breathe and Relax; I am thankful for my Kock Pouch and the success I have with it. I pray it lasts me my lifetime.

Clarification: You do not retain your rectum with the j-pouch. In most cases you retain a small remnant that is 1-2 cm of the rectal cuff that is immediately adjacent to the anal verge. Even with dysplasia, the cancer risk is extremely low, unless your dysplasia was in that area.

In the case of dysplasia, stripping of the rectal mucosa is generally recommended, called mucousectomy. This would necessitate a hand sewn connection (anastomosis). Not all surgeons are trained in this procedure. The double stapled technique is more widely done, but a mucousectomy is not possible with it.

Jan

First off I want to thank everyone who as posted. It seems the more I learn the more confused I become.I am not sure how far the dysplasia is so I guess I'll but that on my list of questions for the surgen.My list keeps getting longer and longer.

That is a definite truism, Bill. The more we know and understand, the more we realize that there is MUCH more to know and understand.

Jan

I had a j-pouch for two years and then converted to another form of the K-pouch called the BCIR. For me, the 2 years with the j-pouch was very difficult but I realize that it is not that way for all. If you do opt for a j-pouch first and if fails, you can have a K or BCIR later but remember you will be loosing same small bowel unless they can use your j-pouch for the procedure. After my BCIR, my surgeon said I still had enough bowel to create another pouch if need be but I have heard of some who have not been so fortunate. I am going on almost 20 years with my pouch and consider myself normal. Never worry about accidents and most of the time, don't even have the catheter on me (keep it in the car for emergenies). The bottom line however is, regardless of what operation you choose, you do rid yourself of potential cancer. God Bless.