Hello All,

I am currently investigating my options because of the necessity to remove my colon in the very near future due to UC. I have questions for all K-pouchers, J-pouchers, BCIR patients.

1) Please identify which applies to you (K,J, BCIR...?)

2) Did you have rectal removal (and did it include or not include the sphincter muscle)?

3) What was your outcome? Are you satisfied with the outcome.

I am likely to have entire rectal area removed and am curious mostly about the J-pouch's success with or without the rectum. I understand there is the potential of quality of life to be no better and that my cancer risk only would be eliminated (I have dysplasia). I have talked to many who have the J-pouch, but no one with it who is rectal-less (is that a word?)

Please help me attain the power of knowledge!

Thanks,
Jeff

I think you will be just fine without a rectum- From what I understand (What they told me at Cleveland Clinic) you want to hold on to the rectum until the j-pouch is constructed.

So, for instance, if you have a three step procedure, the first one will remove the colon only, and you will have a "rectal stump" i.e. six inches or so of rectum that is connected to nothing. Then you take time to heal. Then in surgery #2, they take the rectum out and attach the j-pouch (small intestine) to the anus. The reason they do that is because when the rectum is removed, you can get a lot of scar tissue if the j-pouch isn't attached immediately. Then step three, of course, is the take down.

Oh, as for the questions:

1. I have step two for my j-pouch this Wednesday.
2. I still have my rectum now, but it still has UC. It will be gone in a few days though! I absolutely will keep the sphincter muscle!! It is located in the anus and will give me the control I need to poop!
3. So far, it's okay, we'll see.

hope this helps.

1.J-Pouch

2.I believe I still have a rectal cuff.

3.Yes, I am satisfied. Still some things I cannot eat, but the list of things I can is growing almost too fast .

hey jeffrey, i am having a 2-step with the first step taking place april 4th at the cleveland clinic. i too am having this due to low grade dysplasia throughout my entire colon. they are leaving 1.5 cm of rectal cuff to attach the small intestine to the anus. i guess i will still need to get scoped every other year or so to check for dysplasia in the cuff, but my doctor told me it is very rare for it to show up there but it is possible. please ask me questions and talk to me cuz i am very scared as to what will happen 2 weeks from now.

Jeffrey,
I had my j pouch 20 years ago, had mucousectomy, double staple and 2 cm of rectum retained.
Never had any problem with incontinence or sphincter control.
Also, never had pouchitis or cuffitis.I get scoped yearly and biopsied every 3 years.
Just have the best dr possible with the most experience and skill if you have choices.
My son has a k pouch so if you have other questions I have sent a PM.

I had my entire colon and only part of the rectum removed due to colon cancer. First step was remove the colon and create my j-pouch while I was opened up. Then I had chemotherapy so my second step was about eight months later after my body regained health and strength post chemo. Step two was closure of ileostomy (reconnect or takedown). Fortunately my sphincter muscles were still strong and I have never had an accident or leakage, even at night. From what I read here, that is very fortunate for me.

My quality of life has improved. I'm only about six months post reconnect but the best thing is that the urgency to go "right now" is gone. Plus even a bad jpouch day is better than UC because even if I go more, I have control and can hold it if I need to.

I put my surgery off because of the reasons you're mentioning. The surgery did not sound any better bathroom-wise than with UC. Well five years after my GI recommended it I was diagnosed with cancer. And for me, quality of life DID improve because I now have control of my bathroom breaks. Even if quality of life isn't improved, it's better than no life if cancer takes it.

I have read of others here who have the J pouch with no rectum.

Jubby1234, I wish you all the best and will hold a good thought for you on the 4th.From this and other discussion boards it has become quite obvious that each procedure has it's pros and cons. No doubt you have made the appropriate choice for your circumstance but I am curious about your motivation for choosing the pouch vs. permanant ileo. I will likely not have any choice other than removal of ALL of the rectum due to UC damage. My surgeon also feels that ANY risk of cancer developing there is too much risk worth taking. My surgery (of some sort) will not be for a couple months but I too am scared. Though my fears are more about the unknown future than the surgery itself. In some ways I can hardly wait to be amongst the many here who can say "been there - done that".. I'll be anxiously awaiting further communication form you post-op. Jeff

I have a J Pouch.

I had rectum removed (all except a rectal cuff to staple the J Pouch too and it was stripped)

I have a wonderful outcome and have no issues whatsoever. I had some complications immediately after surgery, but, nothing that has lingered. I also have FAP and not UC/Chron's which doesn't typicall present the same "issues" as are possible as when one has UC/Chron's.

Best of luck on your decision and outcome.

There are some excellent posts in these two threads about cancer risk (even if the rectal mucosa is removed):

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/9221...251065372#5251065372
http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/9281...911080672#1911080672

You would be in a high risk group because of the dysplasia you already have. You would be urged to get annual scopings and biopsies, but apparently not for 10 years. By then, cancer detection technology may have improved, so it might not be so bad to be monitored intensively. Only 17 people with a j-pouch have ever gotten cancer there, however, so the risk is not extremely high.

If they ever did find cancer in your pouch or rectal cuff, they could be removed and you'd get a standard ileostomy. However, that procedure is no picnic, judging from the recent experiences of several popular members of this forum.

Good luck Jeffrey.

1.) I am currently 7 weeks post op from step 1. I am terrified of the J-pouch (and the horror stories here do not help!) But I trust my surgeon enough that I am going to try it and he promises if I am unhappy, he'll take it out and do a perm ileostomy.

2.) He currently left a rectal stump, but when he does step 2, he said he will take it out and the mucus lining in my anus and then blah blah, sounds like normal routine for j-pouches.

3.) Once I got over recovery (it is a bitch, if you can...build up your arms and tummy area before hand) I am very content with the way things are going.

I don't know about you, Jeffrey. But I was a prisoner in my own house. I'd been asking (though absolutely terrified) for surgery for the last 6 months. And I've only had symptoms for just under a year...but when it hit, it was horrible.

When I started meeting with my surgeon and I quoted all sorts of complications and reasons why surgery (specifically a J pouch) was a bad option for me, he said...sometimes too much information is a bad thing. Remember here, you are going to see the bad things that go wrong cause people need help...the success stories rarely cause a bunch of threads and discussion.

good luck and let us know your final decision (and I too had dysplasia - and a colon that was ready to 'splode)

why wouldnt i want to try a j-pouch first jeffrey? it has a great success rate,95%, and i'm a good candidate for it and i am having it done by some of the best colorectal surgeons in the world and top 3 in world hospitals at the cleveland clinic in cleveland. i have dysplasia in my entire colon but the biopsies showed no dysplasia in the rectum. they are choosing not to do a mucosectomy as this may have some continence issues and other complications. like it has been stated here, dysplasia or cancer in the rectal cuff that is left behind can occur but is very ,very rare.