To J-Pouch Or Not To J-Pouch?

This really isn't a decision we can make for you, nor should we. Yes, you can ask how we like our surgery choice, and why we selected it, but for us to weigh in decide for you what to do is not effective.

There is no PERFECT surgical choice. Each choice comes with advantages and disadvantages. Make a list of the pros and cons of each choice, and measure them against what you are willing to live with. That is the reason why all of us have made a different choice; because for each of us we had a threshold of what was manageable in OUR lives.

Sue

Amen to rdm's post. Spot on.

@Pro - See, I'm terrified to even start weight-lifting because I don't know what the hell I'd be doing. You seem to have quite a lot of experience from before your surgery, but I literally have nada. The thing is, I don't really just want to lose weight; I would just end up skinnyfat like I did last time (well, I would if I could ever lose that much weight again, which, let's face it, is not likely without active Crohn's). Would like to tone up a bit this time and, as far as I can tell, the only way of doing that is through resistance training. Have no idea where to start, though, especially with an ileostomy.

Ah well, a person can dream... :-/

"I originally made the wrong choice and there isnt a do over, at least not this time around "

So let me get this straight. You consider going for the J pouch the wrong choice because it failed?

No, you went for the J pouch because it gave you the opportunity to become as "normal" as you can be. The fact that it failed is a different argument. You went for the J pouch for a reason, and that reason is just as valid as any other reasons.

 

I totally disagree with the sentiment that most j pouchers are just tolerating their j pouch. That's ridiculous. Plain and simple the surgery works for the vast majority. Unfortunately there are failures but the successes far outweigh those. That is not my opinion, it's fact. However if you're the one on the receiving end of a failed j pouch, that's of little consolation to you. Your odds of having a successful outcome are very high. (With a skilled and seasoned surgeon of course) In making this decision you have to look at the big picture. That's what I did and I went with the odds which were in my favor.

Somedude said...
"I originally made the wrong choice and there isnt a do over, at least not this time around "
So let me get this straight. You consider going for the J pouch the wrong choice because it failed?

No, you went for the J pouch because it gave you the opportunity to become as "normal" as you can be. The fact that it failed is a different argument. You went for the J pouch for a reason, and that reason is just as valid as any other reasons.

I don't use the word "wrong" in a moral sense. I made the choice as I said because of vanity but also because of uncertainty of what life would be like with an ileo. Additionally the thought that I could try it and then go to the ileo if needed was definitely a factor. And that is main reason of why I usually post on these threads. I was not well informed and didn't research what removal of a J involves. I want people to go into surgery with information I didn't have.

But Isn't vanity why most people choose the J pouch? I agree it is a valid choice, it simply didnt work out for me. I was not a great candidate to begin but my biggest problem which does occur among a certain number of people had to do with hooking up the blood supply during surgery and this caused many issues. This of course was unforeseeable because there is no way to know this until one attempts the surgery. The unknown of going from a relatively well functioning colon (I had well controlled UC that turned into cancer after 25 years) to a ileo was one reason I went for as you say as normal a function as possible. I had never experienced an ileo. After I did have the experience with a loop that was pretty well behaved I knew it would not be a problem for me to live with an ileo, so that made going to an end ileo after about 20+ months, aside from the surgery, an easy decision. My life was much better with a loop ileo than the J so I went to the end ileo ( even better). But it was a lot of surgery and every surgery takes something from you.

rdm said...

Somedude said...
"I originally made the wrong choice and there isnt a do over, at least not this time around "
So let me get this straight. You consider going for the J pouch the wrong choice because it failed?

No, you went for the J pouch because it gave you the opportunity to become as "normal" as you can be. The fact that it failed is a different argument. You went for the J pouch for a reason, and that reason is just as valid as any other reasons.

I don't use the word "wrong" in a moral sense. I made the choice as I said because of vanity but also because of uncertainty of what life would be like with an ileo. Additionally the thought that I could try it and then go to the ileo if needed was definitely a factor. And that is main reason of why I usually post on these threads. I was not well informed and didn't research what removal of a J involves. I want people to go into surgery with information I didn't have.

But Isn't vanity why most people choose the J pouch? I agree it is a valid choice, it simply didnt work out for me. I was not a great candidate to begin but my biggest problem which does occur among a certain number of people had to do with hooking up the blood supply during surgery and this caused many issues. This of course was unforeseeable because there is no way to know this until one attempts the surgery. The unknown of going from a relatively well functioning colon (I had well controlled UC that turned into cancer after 25 years) to a ileo was one reason I went for as you say as normal a function as possible. I had never experienced an ileo. After I did have the experience with a loop that was pretty well behaved I knew it would not be a problem for me to live with an ileo, so that made going to an end ileo after about 20+ months, aside from the surgery, an easy decision. My life was much better with a loop ileo than the J so I went to the end ileo ( even better). But it was a lot of surgery and every surgery takes something from you.

Vanity is one reason, the other reason is convenience. As long as everything works how it should be, you don't need to buy supplies, this or that, etc. Someone that has a working J pouch can back me up on these though.

Silent Lucidity said...
I feel slightly aggrieved with some of the medical staff I've seen here to be honest. The consultant that booked me in for the pouch construction, certainly gave me the impression that returning to end ileo if needed, would be "easy peasy".
I'm sure if they made it clear how complex a surgery that is, some people wouldn't take the plunge.

It would only be a relatively easy procedure if they just disconnected the j pouch and put you back to an ileostomy. It's when you have to have the j pouch removed is when it gets tricky. There is a member on jpouch.org who still has her j pouch inside and went back to an ostomy since her j pouch doesn't give her any trouble just hanging out in there......but that's not always the case.

Yes to merely disconnect the J pouch and go to end ileo is not a difficult procedure. On J pouch.org there is one poster who has done that with good results but she is also on biologics for crohns which IMO may be why it works for her. Other people who have tried it, including myself have had poor results. Two issues that are fairly common with this. The first is what is called diversion colitis. It boils down to a reaction, seen medically as a starvation, of the pouch as it is cut off from the fecal stream from which it gathers nutrients and the abandoned J produces lots and lots and lots of excretions and these are very difficult to control as they are much thinner than the mucus a loop produces, the quantity kept growing. So much so that dehydration was an issue for me. I am told at some point the J pouch shrinks and basically dies, but 6 months was all I could as take the flood of excretions showed no sign of abating. There is no good way to treat this. Some people have fair results with some fatty acid enemas but canasa and other UC meds didn’t work for me. The other problem I had was because the blood supply to the J is left in place there is tension on the intestine and it can (not always) limit the extension of the stoma. I had a nearly flush stoma and it made pouching difficult. I worked out an OK system but much more hassle than I have with my current system. I would never recommend an abandoned J be left in place if there is no intent to ever reconnect.

spiderman said...
"I would never recommend an abandoned J be left in place if there is no intent to ever reconnect."

In the UK leaving a dysfunctional pouch in place is the standard procedure and removal is only performed if the pouch is causing problems. The reason is the surgery to remove a pouch carries a lot of risks whereas merely defunctioning is fairly straightforward and carries much fewer risks.

Peter.

In the UK when they leave the pouch do they do an end ileo or a loop? I think most of the secretion problems happen or are much worse when you do an end ileo and leave the pouch in place. The problems I spoke of dont seem to happen as much with a loop ileo. Of course a loop can have its own issues.

@rdm - If the plan is permanent defunction then an end ileostomy is the typical choice. It typically makes for a better stoma, they are not as flat and there is usually a little extra bowel in use too.

@NiceCupOfTea - Yes, there is a difference between a defunctioned pouch and rectum. It is very common for UC to return to the defunctioned rectum and constant inflammation brings with it the risk of cancer. It is actually quite rare for this to happen in a pouch when the diagnosis is UC. Indeed one way of treating inflammation in the pouch is to defunction it.

Peter.

Had my sub-total almost 3 1/2 years ago, scoping has never been mentioned.

Thanks to everyone that gave input here. I've decided to press on with the surgery next week. I don't want to spend the rest of my life wondering what might have been. As an aside, the information I got about j-pouch reversal being easy, came from the registrar to the surgeon that did my sub-total. It's a different surgeon doing the j-pouch. Said surgeon is held in high regard, specialises in pouch surgery, and I know one of his patients, who is doing very well since takedown.
Lets hope I've made the right decision............

Thanks Ryan, I see you've had step 2. How do you find your loop ileo is to manage?