"One Step" J-Pouch, risks, recovery advice etc

My surgeon quoted me the exact number of one steps he did in the late 90s-00. However, he said he had one go VERY bad, and he absolutely refuses to do them any more, and will only do 2-3 step surgeries now because of it. There are people here who have had it done that way, and are fine... But to me, there seems to be more risks involved with a one step surgery, as a whole.

I also was 19 when I had my two step surgery in 1991 (takedown in May 1991), and lived with my loop ileostomy for 4 months. I was newly dating my now husband (we married in 1998). I was back in college by that year late August, commuting to school and being fairly normal, though I know that's not everyone's deal post takedown. I had it pretty easy, honestly. But I wasn't drinking that fall; I was 20. Did go out to bars starting at 21, about 11 months after takedown, and never had issues.

You have already had your colon removed which is a big surgery in itself. So now they will remove your rectum, create the j pouch and hook you up right away if I am understanding you correctly. This is done but I know a lot of surgeons do not like to do it this way because they want the newly created j pouch to heal a bit before it starts getting used. I had a two step surgery: 1st step, proctocolectomy and j pouch creation. 2nd step, takedown (hook up) so I had 3 months for everything to heal inside before I started using my j pouch. I had a very smooth recovery from my takedown.

I know there are folks on here that had their j pouch hooked up right way so hopefully they will come along and chime in on their experience. Good luck!

I don't know if you're being very realistic with yourself about the situation you're in now... When your j-pouch is functioning you will be in exactly the same situation with needing a toilet to empty. Unfortunately the fact of the matter is that once your colon is gone you are going to have to "deal" with your output at least three or four times a day (that is if you have a VERY well functioning end ileostomy or are a poster child for j-pouch). This is true of j-pouches, K pouches, BCIR, permanent ileostomy, etc... basically everything.

If finding a toilet to empty is your biggest complaint you are probably far better served by an ostomy because a plastic bag is more flexible and less time sensitive than your own anatomy. Heck, you can even duck into an alley to swap out an ileostomy bag and chuck the old one into the trash, you probably wouldn't want to do the same thing to empty your j-pouch...

I had a 3-step. My colon was removed first on an emergency basis, but the rectum left so we could revisit the pouch issue later down the road. I had the pouch construction in 2 steps. My surgeon always said he would advise against 1 steps because he felt the pouch needed time to heal. He also said there were fewer problems (such as leaks) with 2 steps vs 1 steps.

First of all, this cannot be a 1-step, since you already had colectomy and ileostomy as a 1st step. So, you really cannot compare the proposed 2-step to what everyone is talking about: the 1-step. So, let's not lump everything into the same basket.

I say that because the OP has the benefit of having the diseased colon out, and time to heal, get off medications, and regain health in the meantime. And THAT is what makes the difference in the success of skipping the diverting ileostomy. The only other thing that factors in is the mesenteric reach, which would be the same regardless. If the reach is tight, then the diverting ileostomy will be necessary. If there is plenty of reach and he is in good health, there is no reason NOT to skip the diverting ileostomy.

I have read a lot of articles on this, and leaks seem to occur at the same frequency regardless of whether or not a diverting ileostomy was used. Yes, it can be worse if there is a leak while the pouch is connected. But, on the other hand, I have read about many leaks that went undetected until ileostomy take down, and they had been there long enough to fistulize and become a more long term problem.

I actually can speak from experience (I had a 1-step). While the early days after surgery were challenging, it does not seem that they were any more challenging than those with a diverting (loop) ileostomy. It seems rather rare that someone has a carefree diverting ileostomy. I had no accidents while out and about, and could delay a bowel movement 1-2 hours within a week post op.

I had complications, but I also was taking 80mg of prednisone when I had my surgery and I have no doubt it made a difference, in a bad way. So, apples and oranges I think.

Bottom line, the key is the status of the individual and it should be decided on a case by case basis. Be sure to consider all the factors before deciding.

Jan

Jan, if that's the case why are there still so many three steppers? I know there are a few surgeons who like to do a "two step" like the OP is describing, but a three step is still overwhelmingly more popular if the first step doesn't include a j-pouch construction. Is the research supporting your view so new that surgeons aren't changing their approach yet to incorporate it?

Obviously I am biased since I'm a three stepper, but even at CC they are still performing plenty of three step surgeries, and it's my understanding that Dr Remzi requires a certain period of time steroid and med free before step 2. Per your logic, if you're steroid free before step 2, it ought to be combined with step 3.

The other thing to consider is that if someone has inflammation in the remaining rectum, essentially in an active flare going in step 2 of 3, that would probably be a contraindication against skipping the diversion, right?

Liz,
I think the point being the OP has already had the colectomy done which is a big part out of the way. If he is healthy and his surgeon is willing to do the next step all at once and thinks he's a good candidate to do so, then it may be a viable way to go. I have read of many two steppers that had the colectomy....then the next step the j pouch creation and takedown in that step. I just don't think it's done as often as the other way around like I had it done. And the 2 step procedure is done just as often as the 3 step procedure. It's just what any particular surgeon's preference is and their training in doing it. There really is no right or wrong way.

Well, I think that just like most other surgical procedures, this is an evolving issue. As more data becomes available, trends change.

I don't think that the 3-step is all that common, but I can't give you the data on that. But, I think the trend is to go to surgery sooner than they used to, avoiding the "emergency" colectomy more often than not.

But, here is a 2010 article by Dr. Remzi, indicating that even at CC, there is no gospel on this topic in regard to the diverting ileostomy.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134803/

And this newer one 2011, also indicates it is not black and white
http://archsurg.jamanetwork.co...spx?articleid=406555
And, THAT is why I said it should be a case by case basis. Just being steroid free does not completely erase your risks, but it certainly is a factor (myself being a case in point). As to the inflammation in the remaining rectum goes, I am not so sure about that, since pretty much everyone will have some (if they have a UC diagnosis).

Realistically, I should have had a 2-step. I just got lucky that my complications did not snowball into something terrible. At the time, 1-steps were just more popular and they were trying it out without really knowing if it was better or not. Now, they have stricter guidelines, and I have seen quite a few here do well with just the simple colectomy on a more emergent basis, then the j-pouch construction later without the ileostomy.

Jan

I was hospitalized for bowel rest and TPN prior to my surgery, and was on a lot of steroids (IV, that were tapered off before discharge after my first surgery), and I went through the total colectomy and J pouch/loop ileostomy just fine, at 19. I didn't have any stoma issues, apart from some minor apprehension with caring for it in the beginning. I actually came quite attached to Babs, because she gave me my life back, and was a bit afraid to have the takedown, honestly... but I'm so glad I did.

The first listed article still does say that for the most part, a diverting ostomy to allow the pouch some rest time "improves outcomes." The second study cited seems to lean to the side that one steps do have more issues vs. a two or three step, too... with the most problematic issues being anastomosis separation and pelvic sepsis, vs. the diverting group's issue with stricture (which I think is a way less troubling issue), and more psych issues in dealing with a stoma. While both seemed to be sort of noncommittal either way, and said that individual cases should be looked at rather than just lumping everyone into one category for type of surgery (as is the case in all patients; we're like snowflakes! no two alike!), I think they both seem to lean to diverting ileostomies as safer, if you ask me, from the article's tones and study outcomes overall. And I trust my surgeon's views, too, from his time in the nineties doing surgeries without diverting loop ileostomies and him seeing way more issues and refusing to do them, that a two to three step surgery with a diverting ostomy, based on your health history, is likely safer for most of us. Just my feeling, overall, though I also know someone who was one of his patients at the time who did just fabulously with a one step, so... there you go.

I agree. Both articles lean toward having the diverting ostomy as being the "safer" option, at least in most cases. The point being that anastomotic leaks are a more potentially serious outcome than strictures (of course, tell that to someone with a chronic stricture!).

The lesson learned over time I think is that omitting the diverting ileostomy needs to be with careful patient selection, not a set rule one way or the other. Ideally, you trust your surgeon to make the right choices for you, and that is why it is important to have that trust in your surgeon.

Jan

I haven't read the articles but do they weigh somewhat immediate complications against long term complications? A truth one-step would not include a stoma. It seems that many people have blockage or pain at the stomal site after takedown. Also, there is always a danger of problems while under anesthesia and sometimes complications after because of the anesthesia. So the fewer times going under the knife [or scalpel] would seem beneficial. And finally, for me anyway, fewer surgeries is way preferable.

I've known many people who've had 1-, 2-, and 3-step procedures. As far as I can tell, the complication rates are pretty equal. Or conversely, the rates of no complications are pretty equal.

You should go with whatever makes you most comfortable with the knowledge that if you chose to do the next step in one process it may end up being two, rather than one procedure.

kathy

I had a one-step (no stoma) over ten years ago, and it worked out very well for me. The surgeon offered me my choice (which meant he didn't have medical grounds to make a strong recommendation). It was thus quite appropriate to choose the one-step on convenience grounds (I lived 2,000 miles from the hospital). You might argue that planning to get it all behind you before starting school is a legitimate consideration, as long as you remember that plans sometimes go awry. How hard you can party is just something you'll have to find out.

I thought you had to keep your rectum in order for you jpouch to be hooked up? I have still have mine and I have to have it tested every other year.

Maybe I am confused but I am sure every surgeon is different and every situation is different also.

My colorectal surgeon really wanted to do my J-pouch surgery in one step. What did I know? I mentioned it to my gastroenterologist and he about hit the roof! This was about 12 years ago. He gave me several reasons for recommending I have a two step surgery. I went back to my surgeon and insisted on it. (He wasn't happy!) Well, I then chose to keep the temporary ileostomy for a full year instead of a couple of months. I just liked feeling healthy and in control for the first time in years. Again, I'm glad I waited for the takedown as long as I did. I was well healed and had a very easy transition to having a functioning J-pouch.

I have about 2 cm of rectal cuff, but he stripped the mucosa. So I do not have my "rectum" anymore. My pouch is where my rectum once was. I think you might be thinking about an ileorectal anastamosis, that procedure does keep your rectum, but isn't a good choice for someone with UC. An ileoanal anastamosis like I have had done for UC gets rid of your rectum.

I think the confusion is that it is true that you need to retain your rectum to have the j-pouch surgery. But, the rectum is removed during j-pouch surgery. A small rim of rectal cuff (1-2cm) is left behind to attach the pouch in most cases. It is the retained rectal cuff that needs to be monitored.

Jan

I also would advise against doing a 1 step. My husband had a 2 step surgery and I thank God he did cause guess what? One or two of the staples popped open on his jpouch after creation and just from the left over stuff draining through him right after surgery he got multiple abcesses in his stomach and almost died from septic shock.

I cannot imagine how bad it would have been if he didn't have an ileostomy while having a hole in his pouch.

And to the other conversation about 3 step vs. 2 step... I actually have been seeing most people do 3 steps from the various forums that I frequent. The general consensus was a 3 step is better than a 2... but I personally believe a 2 step is way better. You get everything major out of the way in one step and your pouch has a lot longer to adapt and heal. I have read about more complications with takedown with 3 steppers than I have with 2. And my husband's take down (after the hole healed completely) was a complete breeze. I know everyone is different and will always have different experiences but just sharing information.

seems i have lots of replies, i will explain a few things, my surgeons reasoning is quite logical to me and simpler than most of you are even saying. He says he has done several surgeries in this way, and that male candidates are far better at adapting because they tend to be able to support the pouch better if they are in good health (lean, etc) like i am. Women however tend to have much wider hips which means the pouch is not supported as easily, so he doesnt do it this way anymore for women. I dont expect to be running around drinking like i do at the moment for a good while haha, so there is no worries there. I just want to be able to get back to my usual self, get fit like i was a few years ago, since i have UC left in my rectum i still loose blood regularly and im quite anaemic, i understand the idea of pouch failure and it being higher, but if i did decide to have another step, i would then have to wait until Christmas at the very earliest to have it reversed, then deal with the high output and other recovery elements at a different time. To me this just seems like delaying the inevitable?

"I had no accidents while out and about, and could delay a bowel movement 1-2 hours within a week post op." By the way this is what i wanted to hear really, thank you Jan! Also some people arent really taking in what I have put in the first comment.. and just putting irrelevant things.. hmm.. thanks for helping tho

I see you are in the UK - as am I - and I have been to 2 top London hospitals 'Centres of Excellence' - St Marks Hospital - and University College Hospital London, (and my own local hospital) none of them would do a 'one step' and I was well at the time (whether it was because I was female - I don't know - but I got the impression it was for either sex)

Anyway - I have had step one of 2 - and had complications with leaks in the pouch - so 7 months on I still have a loop ileostomy (which I hate).BUT If I had had the one step - I probably wouldn't be here now....

Not sure how I missed this thread until now, sorry. I had my surgery as your surgeon is proposing. I had Toxic Mega Colon after being very sick with UC and had a proctocolectomy with an end ileo to get me back to good health. I was too sick at the time for j-pouch creation. Six months later, off steroids and meds, I had j-pouch creation and hookup in one surgery. My j-pouch is wildly successful, I haven't had pouchitis in years and years, I go to the bathroom 4 or 5 times a day, sleep through the night and most days don't even think about having a j-pouch.

This type of two-step is no more dangerous than three steps with the right patient and the right surgeon. My surgeon also did one-step operations and three-step surgeries; it was dependent on the patient and their health. He was extremely experienced as well, and trained at the Cleveland Clinic. I had returned to good health, so there was no reason at all for me to have an additional surgery. Like Kathy said, the fewer the surgeries, the better. More surgery adds more risk from complications, anesthesia, hospital-borne infection, etc.

And I hate to sound cynical (okay, no I don't, ha ha) but as to the question of WHY a doctor would do three steps when it could be done in two, I can't help but think money could be a contributing factor and perhaps looking more conservative in the event of a poor outcome that could lead to a lawsuit? Sounds terrible, but as much as I'd like every doctor to be 100% altruistic in their choices, I'm more realistic than that. Or maybe they don't have the experience or have had a bad experience (which happens with one-, two- and three-step procedures). I don't know. Perhaps a second opinion would be useful if the patient isn't sure how to proceed.

But yeah, I had that many years ago and yeah, I did just fine and would do it again and wouldn't hesitate to recommend it if your surgeon feels you are a good candidate and he has the experience.

I haven't read all the comments yet, but I know Jan and I both had our pouches created and used without a break, and we are in favor of it. That should say a lot.

Best wishes for great success and let us know how things go.

While the one step isn't for everyone, it really is sometimes an appropriate choice. It does have a different risk spectrum, and probably nets out as somewhat riskier. Some of the complications that occur with two- and three-step procedures are a consequence of additional surgeries, but it's easy to discount them because a more "conservative" approach was followed. Try to remember that none of this is risk-free, so a thoughtful approach will serve best, I think.

yeah, thanks to those who actually gave some constructive advice, those who just complained/ranted about nonsense or ignored what i wrote in the first post... well.. my surgery is scheduled for this thursday anyway, so imma see what happens and report back at some point. Confident everything will be fine tho.

Good luck to you. Hope it pans out as you'd like. Keep us posted. I thought most posts in your thread were pretty constructive, overall... at least, they mostly seemed to offer individual views on one step surgeries. I knew one guy who my surgeon did a true one step (yours is sort of a 1.5 step, since you have an ostomy; he never had one), and he did great after it. But yeah, come back and give us your report on your personal experience.

Positive attitude goes a loooooong way, along with a sense of humor. So, try not to get discouraged if everything isn't perfect. Regardless of the type of surgery or how great the surgeon is, sometimes stuff happens.

But, by the time school starts up in the fall, you should be doing OK. Yeah, you will be having more BMs than your pals, but you probably won't be in the can any more often than the next guy. Can't help you with how to deal with nasty public toilets or lack of privacy, but you will figure it out. But, DON'T AVOID EATING WHEN DRINKING, thinking it will cut down on your visits to the toilet. It can easily backfire on you and be worse.

Plan your first parties at home, then you'll know how you react.

Good luck!

Jan