Have there been any new advancements recently (or soon to come) in the last few years for the J-pouch surgery??

I don’t think the surgery has changed much in the past six years. It doesn’t actually require 2-3 surgeries ( I had it in one), but separating the changes helps reduce some complications. Most J-pouchers don’t experience what they would call “high frequency,” but when you ask a question here you are getting answers from folks who frequent this forum, who will have a much, much higher rate of pouch problems than the average J-poucher. Good luck!

I agree with Scott; the vast majority of members on this forum are normally looking for answers after experiencing difficulties or complications after colorectal surgery, which doesn’t paint the best outcome and probably highlights the negatives.

I had my j pouch created during 2014 and takedown in the January of 2015 and it was the best decision I’ve ever made.

Yeah, my output isn’t formed, nor is it loose to the extent of diarrhoea but whatever, it’s a million times better than the colostomy bag on my abdomen. 

My frequency is not even noticeable; on average, 3 to 4 Bowel Movements per day, sometimes 5 but there’s hours in between BMs; normally I don’t even remember the last time I went. 

Like yourself, I was told my UC was indeterminate, although prior to this diagnosis I was treated for UC for at least 11 years.

It was only after the removal of my colon during 2005 was I told I had Crohns; which meant a J Pouch wasn’t an option, 

Although, as I didn’t experience any flare ups or take medication to control the Crohns or UC for 8 years, that’s when the indeterminate diagnosis was made; thus, a J pouch became an option. 

strange posted:

I agree with Scott; the vast majority of members on this forum are normally looking for answers after experiencing difficulties or complications after colorectal surgery, which doesn’t paint the best outcome and probably highlights the negatives.

I had my j pouch created during 2014 and takedown in the January of 2015 and it was the best decision I’ve ever made.

Yeah, my output isn’t formed, nor is it loose to the extent of diarrhoea but whatever, it’s a million times better than the colostomy bag on my abdomen. 

My frequency is not even noticeable; on average, 3 to 4 Bowel Movements per day, sometimes 5 but there’s hours in between BMs; normally I don’t even remember the last time I went. 

Like yourself, I was told my UC was indeterminate, although prior to this diagnosis I was treated for UC for at least 11 years.

It was only after the removal of my colon during 2005 was I told I had Crohns; which meant a J Pouch wasn’t an option, 

Although, as I didn’t experience any flare ups or take medication to control the Crohns or UC for 8 years, that’s when the indeterminate diagnosis was made; thus, a J pouch became an option. 

I don't understand what you mean about Crohns and the J Pouch.  So are you saying you already had a Jpouch at the time it was discovered your disease was Crohns and not UC? At what point were you given the Jpouch option after your colon removal in 2005?  I thought that usually indeterminate cases are not given the option for Jpouch. Also, what specifically about your removed colon pointed to Crohns?  

There are different schools of thought about the appropriateness of J-pouch surgery for Indeterminate IBD. When I looked into this before my surgery 18 years ago, two research groups had studied it and had come to opposite conclusions. The researchers at Mayo Clinic concluded that the surgery shouldn’t be done, but a French research group suggested that it was reasonable to do the surgery. When I dug deeper it looked like the clinical results were similar for the two groups, but they interpreted their data differently. It looked to me like the Mayo folks had failed to interpret their data correctly. A key part of the problem is how to decide that it *is* indeterminate IBD: if the diagnosis is made after surgery, based on study of the removed colon, it’s both more accurate and at the same time useless to the person trying to decide whether to have surgery.

I went ahead and had my surgery, and at least in my case that turned out to be a good decision. I will say that the Mayo surgeon I consulted refused to consider doing the procedure, so I looked elsewhere.

There may have been additional studies since then, but I haven’t kept up with it.

Scott F posted:

There are different schools of thought about the appropriateness of J-pouch surgery for Indeterminate IBD. When I looked into this before my surgery 18 years ago, two research groups had studied it and had come to opposite conclusions. The researchers at Mayo Clinic concluded that the surgery shouldn’t be done, but a French research group suggested that it was reasonable to do the surgery. When I dug deeper it looked like the clinical results were similar for the two groups, but they interpreted their data differently. It looked to me like the Mayo folks had failed to interpret their data correctly. A key part of the problem is how to decide that it *is* indeterminate IBD: if the diagnosis is made after surgery, based on study of the removed colon, it’s both more accurate and at the same time useless to the person trying to decide whether to have surgery.

I went ahead and had my surgery, and at least in my case that turned out to be a good decision. I will say that the Mayo surgeon I consulted refused to consider doing the procedure, so I looked elsewhere.

There may have been additional studies since then, but I haven’t kept up with it.

where did you have your surgery done?

I flew to LA and had my surgery done by Bob Beart at USC. I believe he must be retired now, and I don’t know if they still have a program there.

I went into it knowing that I had a real risk of pouch failure. My feeling was that the outcome of pouch failure was an end ileostomy, which was all that I was being offered by the refusing surgeons anyway (I was turned down by two). I probably underestimated the misery and surgery associated with pouch failure, but I still think I made the right choice at the time, and would feel the same way if things had gone to hell.

While there have been newer immunotherapeutic meds including the monoclonal antibodies, I don't think much has changed with respect to pouch construction, ...other than doing it endoscopically rather than open.  I actually don't know when the "keyhole" colectomy became common, but it must be extremely difficult given all the tissue that must be cut, and all the blood vessels that must not in the mesentery.
One thing that has apparently changed, and not for the better, is pre-operative patient education and making sure the patient understands the pouch adaptation process adequately.  I suspect this has happened as the procedure has become routine.  Still, I'd advise anyone considering this operation to only have it performed at a major, academic medical center with a surgeon who has done it a minimum of 100 times.
Mine was done in 1990 at UCLA.  At that time, only UCLA, Mayo and Mt. Sinai were getting consistently good outcomes.  I was roughly patient 500 of Eric W. Fonkalsrud MD (RIP) at UCLA, one of the early pioneers and perfectors of various pouch protocols.  I've attempted to attach a scan of the patient education booklet he gave me on my initial visit, but the site will not upload PDFs (only photos)  If anyone knows how to get around this with a 100MB max, please let me know.  My PDF is about 13MB, and extremely informative, BTW.
I think one negative change is that surgeons do not seem to put their patients on Flagyl for the first 3-4 weeks after takedown, while the ileal mucosa (now pouch tissue) adapts to the increased bacterial count, leading to a lot more pouchitis in the first post-op year.  Dr. Fonkalsrud's protocol had (adults) on 250 mg Flagyl 3-4 x/day, tapering off over weeks as the gut healed and adapted.
While I have no personal "control experiment" for comparison, I credit this protocol, at least in part, for having a pouch that has functioned well for 30 years.  The only other major difference I hear about is surgeons are NOT demanding patients to self-dilate daily in the early months after takedown, continuing occasionally (4-6x/year) for life.
Many of the cases of pouchitis, which have been on the increase, are likely due to a certain degree of stool stasis, because people are only partially emptying their pouches with each BM.  This is a sure recipe for ever-increasing microbial concentration leading to frequent or chronic pouchitis.  Personally, I do not enjoy passing a ⅝" tapered plastic rod up my bum, but it sure beats having chronic pouchitis, or eventually reverting to a permanant ileostomy.