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Having an incredibly hard time deciding b/w J-pouch and permanent ileo.

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Posted 11/18/2015 4:36 PM (GMT 0)

iPoop said...
No worries NCOT, it's great to have your point of view expressed, as a reminder that surgery isn't all rainbows, puppy dogs, and daisys. Surgery isn't a first line treatment because of that, as keeping an intestine is preferable for those who can manage uc via meds; not everyone can though. My thought is hope is often something folks need after failing all the uc medications after a prolonged fight with uc, that surgery will make things better and for the majority it does. But nothing applies to 100%, I truly wish that it did though, for yourself included.

Cheers, iPoop. Appreciated.

I just get frustrated when I feel like people are sweeping things under the carpet - I've just come over from the Crohn's board after having written a long reply to two people who want to deny that IBD is a chronic, lifetime illness. It's a balancing act between dwelling in misery and acknowledging reality: I struggle with that balance constantly <_<.
Posted 11/18/2015 6:04 PM (GMT 0)

ks1905 said...
The J-pouch creation is a bigger surgery than the Colectomy plus you'll need a 2nd surgery to connect everything.

I have a problematic j-pouch (chronic pouchitis) but it's not nearly as bad as UC. I find it very manageable.

I prefer my J-pouch over the end ileo that I had but I could be happy with the end ileo, my j-pouch is more convenient for me.

If you still have your rectum then at some point you'll probably want it removed and sewed up if you're not going to get a j-pouch and that is a big surgery too.

My concern is that you haven't used your sphincter too much in the last couple of years, you should talk to the surgeon about that. Your sphincter is a muscle and if you don't use it then it loses its strength and if it's too weak than you might have a leakage issue. Some people do kegel exercises to strengthen the sphincter.

Check out the ostomy board on HW and J-pouch.org, you'll get more in depth answers to your questions from people who have had the surgeries.

I would still need the surgery to remove what is left of my rectum. I get a scope once a year to make sure there is no signs of cancer.

The sphincter concern is a real one for me. I pass mucus every now and then but the muscle is definitely less active than before. Is having accidents/wearing diapers something I want to risk? It all factors into my decision.

To your last point, the UC forum is more active than the ostomy so that's part of the reason I chose it. And also because that is there specifically to discuss ostomies -- I want people who have experience with both.
Posted 11/18/2015 6:13 PM (GMT 0)

NiceCupOfTea said...
95 percent of j-pouch patients are happy with their outcome

It's more like, '95% of j-pouch patients don't go back to having an ileostomy'. That is pretty much how j-pouch success is measured. Some people settle for a poor outcome rather than go back to having a stoma for life. I won't be one of them.

Edit: If anyone is interested, I literally read this just now.



A blogger with a j-pouch said...
I can’t find any official success stats but I can say that my surgeon told me this.

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

Somebody replied with this post:

Somebody said...
Actually it wouldn’t help you, record keeping on j-pouches has historically been quite poor. That is what prompted the creation of this: http://pouch.iasupport.org/ileal-pouch-registry. The figures Sam (‘s surgeon) quoted come from various meta studies conducted over the years. Surgeons typically talk about the 4-4-2 rule, 4/10 good, 4/10 fair to middling, 2/10 poor. Sam’s surgeon just went into more details on the 2/10. It is also fair to say that this surgery is still relatively new, the first ones being done between 1976 and 1978 and much of this data is based on pouches that were done when the surgery was quite new and surgeons were inexperienced. It would be interesting to see how those figures stack up 20 years time when the people who are having their surgeries now are included.

Source: http://www.sobadass.me/2015/09/27/what-is-a-jpouch/

THANK YOU SO MUCH FOR THIS. These are numbers I want. I've looked up studies and the only numbers I can find discuss whether the surgery was successful or not -- that's where the 95% comes from.

It's hard to find unbiased numbers because these forums seem to be people on the ends of the spectrum (ie people whose j-pouch is very successful or failed completely.

When you say you wont be one of them, what do you mean? You won't be someone who doesn't go back?
Posted 11/18/2015 6:32 PM (GMT 0)
Correct me if I got any details wrong:

NCOT has Crohn's disease (not uc), had a subtotal (not a total) colectomy with end ileostomy. She was very unhappy with that ileostomy at an emotional level. She had a takedown where the ileostomy was reversed and attached to her remaining large intestine (remember before I said it wasn't a total colectomy) in an uncommon surgery known as an ileorectal anastamosis (ileum of the small intestine attached to the complete rectum of the large intestine). So, she doesn't have a j-pouch (most with Crohn's disease aren't candidates for j-pouches).
Posted 11/18/2015 8:22 PM (GMT 0)

jleath13 said...
THANK YOU SO MUCH FOR THIS. These are numbers I want. I've looked up studies and the only numbers I can find discuss whether the surgery was successful or not -- that's where the 95% comes from.

It's hard to find unbiased numbers because these forums seem to be people on the ends of the spectrum (ie people whose j-pouch is very successful or failed completely.

When you say you wont be one of them, what do you mean? You won't be someone who doesn't go back?

No worries! I agree about it being almost impossible to find actual unbiased numbers for j-pouch surgery. Those numbers just seem so much more believable to me - obviously that's a subjective judgement in itself, but still.

Sorry, I can see now how that sentence could be interpreted to mean the exact opposite of what I meant :-/ I meant I won't be one of the ones sticking it out with a poor outcome - I will go back to having an ileostomy if this doesn't get any better. iPoop's basic biography is right: I had Crohn's; had a subtotal colectomy with 90% of my colon removed (only my rectum and part of my sigmoid were kept); had an ileostomy for 2 and a half years; then finally had it reversed in July of this year. Technically I actually have an ileosigmoid anastomosis, but for some reason everyone else calls it an ileorectal anastomosis, including my surgeon and GI, so I do too.

Physically I did well with an ileostomy, but mentally I really struggled, especially in the first year. I won't pretend otherwise: I hated having an ileostomy and resented it. But after that first year, things did get easier. By the second year, I was completely adapted to having an ileostomy. But even before I had my first operation, I knew about the possibility of being reconnected: my surgeon had told me about it. But unlike with j-pouch folks, she wouldn't do it a few months after surgery - I'm not really sure why. Maybe she wanted to be sure the Crohn's wouldn't come straight back first. And indeed in 2 and a half years it didn't come back. Until - you guessed it - straight after my 2nd surgery skull

I've just had an MRI scan, so hopefully in a week I'll know more. I won't make any decisions about treatment or surgery without knowing what's going on internally first.
Posted 11/18/2015 8:40 PM (GMT 0)

jleath13 said...


I would still need the surgery to remove what is left of my rectum. I get a scope once a year to make sure there is no signs of cancer.

The sphincter concern is a real one for me. I pass mucus every now and then but the muscle is definitely less active than before. Is having accidents/wearing diapers something I want to risk? It all factors into my decision.

To your last point, the UC forum is more active than the ostomy so that's part of the reason I chose it. And also because that is there specifically to discuss ostomies -- I want people who have experience with both.

I would think that you'd probably want it closed and removed at some point since you are young, it could become an issue later on in life. The removal and closure surgery would be a similar recovery time to a j-pouch(step-2) surgery. You would need the additional time for the takedown (step-3) and adjustment period for the j-pouch.

You probably would want to have the surgery sooner than later because of the weakening sphincter issue, I think it is more of an issue at the 3-6 year mark of not using it. You would want to have your sphincter's strength tested prior to your decision.

You should find a very experienced J-pouch surgeon because that definitely increases your odds of success which causes the debates about the statistical outcomes.
Posted 11/18/2015 9:05 PM (GMT 0)
This has been the best, open and honest thread I have ever read here!
Posted 11/19/2015 9:39 PM (GMT 0)

DMC2011 said...
This has been the best, open and honest thread I have ever read here!

Haha I didn't intend on it getting as many replies as it has. I simply wanted to know some no BS answers. Like I've said here earlier: I know the J-pouch is 95% successful but does that mean 95% of the people are happy with the decision?

In any case, I'm glad someone else is getting something out of it too!

ks1905 said...


I would think that you'd probably want it closed and removed at some point since you are young, it could become an issue later on in life. The removal and closure surgery would be a similar recovery time to a j-pouch(step-2) surgery. You would need the additional time for the takedown (step-3) and adjustment period for the j-pouch.

You probably would want to have the surgery sooner than later because of the weakening sphincter issue, I think it is more of an issue at the 3-6 year mark of not using it. You would want to have your sphincter's strength tested prior to your decision.

You should find a very experienced J-pouch surgeon because that definitely increases your odds of success which causes the debates about the statistical outcomes.

Hmm. Thank you. This coming March will be three years with my ileostomy. I will talk to my surgeon soon then. I have an incredible surgeon whom I like a lot and have a good relationship with. Maybe I can find numbers that are directly tied to him regarding the success/happiness of his j-pouch patients.

NiceCupOfTea said...


No worries! I agree about it being almost impossible to find actual unbiased numbers for j-pouch surgery. Those numbers just seem so much more believable to me - obviously that's a subjective judgement in itself, but still.

Sorry, I can see now how that sentence could be interpreted to mean the exact opposite of what I meant :-/ I meant I won't be one of the ones sticking it out with a poor outcome - I will go back to having an ileostomy if this doesn't get any better. iPoop's basic biography is right: I had Crohn's; had a subtotal colectomy with 90% of my colon removed (only my rectum and part of my sigmoid were kept); had an ileostomy for 2 and a half years; then finally had it reversed in July of this year. Technically I actually have an ileosigmoid anastomosis, but for some reason everyone else calls it an ileorectal anastomosis, including my surgeon and GI, so I do too.

Physically I did well with an ileostomy, but mentally I really struggled, especially in the first year. I won't pretend otherwise: I hated having an ileostomy and resented it. But after that first year, things did get easier. By the second year, I was completely adapted to having an ileostomy. But even before I had my first operation, I knew about the possibility of being reconnected: my surgeon had told me about it. But unlike with j-pouch folks, she wouldn't do it a few months after surgery - I'm not really sure why. Maybe she wanted to be sure the Crohn's wouldn't come straight back first. And indeed in 2 and a half years it didn't come back. Until - you guessed it - straight after my 2nd surgery skull

I've just had an MRI scan, so hopefully in a week I'll know more. I won't make any decisions about treatment or surgery without knowing what's going on internally first.

Thank you for your input. Like I said in my original post, I want to WANT my ileostomy since I am healthy able to doing everything I could pre-surgery/pre-UC so it is reassuring to me to see someone who prefers the ileostomy.

I am not ruling out the j-pouch surgery at all. But I think going forward, keeping the ostomy provides a black-and-white-ness that my life hasn't had since getting UC. Everything with being sick and on however many medicines has been so grey. Deciding to keep my ostomy would be one decision/one surgery as opposed to two or three more surgeries and when I'm all healed, is my life OK?

I worry that deciding to get the j-pouch risks prolonging this seesaw I've been on with UC whereas keeping my ostomy is it. That's my life going forward and I can truly know what the future holds for me as far as my health.
Posted 11/19/2015 9:53 PM (GMT 0)
Jleath13,
If you're on Facebook, do a search for the J-Pouch Group there. It's a private group so you'll need to request to be added and then someone from admin will add you.

Once in, Make a thread and ask who is happy with their j pouch. You'll get many answers quickly since its Facebook. Those are real people and not statistics on a website. So it may give you some good insight. There are over 3000 members there.

Best wishes with your decision.
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