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When you have 3 step j pouch surgery, why do they leave the rectum?

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Posted 4/22/2012 7:00 AM (GMT 0)
Hi all,

I think I might already know the answer to my own question but I'd like to be sure.

When you have 2 step j pouch surgery, they remove the colon and recutum, form the pouch, hook it up to your rectal cuff/anus, and form a temp ileostomy ALL in the first surgery. The second op reverses the stoma so that you''re using the j pouch instead (correct?).

But when you have a 3 step surgery, due to colectomy being an emergnecy, the doctors not being sure if you're eligible for a j pouch, or you not being sure if you want one, I believe they just remove the colon in the first surgery and leave the rectum in place. Is this so this so that it's easier to 'find' the rectum during the second the surgery, so that they can remove it and attach the j pouch? (I can imagine going back in some months later, it might be difficult to locate a tiny rectal cuff).

I'm just wondering because if I was to have surgery, I think mine would have to be 3 step because my colitis is currently 'indeterminate' and they'd insist on seeing the path report on the colon specimin before deciding where to go next (very sucky :(...). My concern is that my rectum is driving me INSANE right now, it aches all the time, gives me that urgent feeling when I don't even need to go, bleeds when I do go, and particularly hurts just before and during a bowel movement, and often for a good while after one. Since I'm still sometimes producing somewhat solid stool between mucus/blood bms, it seems as though my infammation may mainly be low down/left sided this time (in the past my whole colon has been involved). So I'm worried that if I had to a 3 step surgery, they'd leave the rectum which is one of my worst offending areas, and I'll still be suffering with discomfort, urgency and bleeding even with a stoma. I hear so much about people stumps flaring in this situation and it sounds totally miserable.

So back to my original question - why do they leave the rectum when they do a 3 step surgery?

Thanks in advance!
Posted 4/22/2012 1:16 PM (GMT 0)
Hi. i don't know the answer to your main question as i just had my very own emergency colectomy a month ago. but i can tell you that my rectum was in an even worse state than you described and currently i still have mine.... and i have none of those issues anymore. pretty much immediately. Since i woke up from surgery i have practically forgotten i even have a rectum to be honest.
Not sure of the how or why but my rectum seems to have fixed itself overnight.
I too will have a 3 step surgery as my first one was a life saving emergency and they only took out the colon.
the tragic state of my hunk o junk colon was so bad that they would not have done the 2nd step even if it wasn't emergency surgery.
Other than that i don't know much else. still new and learning myself.
Don't stress out too much about your rectum as im sure there is a good reason for them leaving it there.

Post Edited (kazygirl) : 4/22/2012 7:19:13 AM (GMT-6)

Posted 4/22/2012 3:11 PM (GMT 0)
Hi kazygirl,

Thanks for the reply. That's good to know that for some the rectum actually becomes quiescent after colectomy. Good luck with your furture surgeries, do you know when they will be?
Posted 4/22/2012 3:18 PM (GMT 0)
Kazygirl,

My 15 yr old son had the 3 stage surgery.   His first surgery was emergency surgery due to severe ulcerative collits that affected his entire colon and none of the meds worked- we tried them all. 

In the first surgery (August 2011), they removed his entire colon but left the entire rectum and he had an end ileostomy.  His second surgery was Dec 2011 and they formed the JPouch and removed all but an inch of the rectum to which the pouch was attached and he had a loop ileostomy.

His 3rd and final Takedown surgery was March 2012 and closed the Stoma. 

I was reading your post to him... He told me that he had the same pain, achiness and urgency after the Takedown surgery, but said it tapered off and finally went away 1-2 after the surgery.  He now has no pain, no achiness in the rectal area and no sense of urgency.   He is back to school full time (3 weeks after his Takedown surgery) and can make it through the entire school day without going to the bathroom.  He is only taking one Imodium a day in the morning with his breakfast.  He still goes to the bathroom on an average 6-8 times a day but is only getting up once, maybe twice, at night.

I will never forget what he told me in the recovery room after his first surgery... "Mom, I can't believe how much better I already feel".   His colom was so diseased that the Dr told us there was no medication that would have helped him.

He now takes NO medication except for an Imodium.   He told me that he is so happy he had the surgery.

I wish you the best with whatever decision you make.   There is nothing better than "quality of life" and my son had none for a year before his surgery.   He does now  yeah  

Good luck.

Pam

Posted 4/22/2012 11:06 PM (GMT 0)
My rectum was also the worst part. I think that remicade helped to heal everything above that, but still did nothing for the rectum. It was awful.

I have had Step 1 of the process and I can tell you that it is great! I will admit that I do still have some mucous and blood on occasion and sometimes a bit of urgency, but it is NOTHING like it was. It is very, very manageable and more of an annoyance than anything else. It doesn't hurt at all. Just once or twice a day I pass some mucous/blood. Many others don't even pass anything after the initial surgery, so keep that in mind too.

I have no regrets at all about the surgery. I am still deciding about whether I will get the j-pouch or stay with the ileo. The surgery has given me my life back, and I am forever grateful.

Good luck with your decision. It is not an easy one.
Posted 4/22/2012 11:08 PM (GMT 0)
Sorry, I realize that I didn't answer your question. To my knowledge, they keep the rectum so that it and the anal cuff stay healthy with a blood supply until you have the next surgery where they make the j-pouch. I imagine it also gives them more to work with.
Posted 4/22/2012 11:14 PM (GMT 0)
Thanks mom2panda, that makes a lot of sense, and I'm glad to hear your step one was problem free regarding all things rectum related :). So for some I guess the UC/Crohns decides to **** off since the majority of its favourite chew toy is gone. Shame that's not the case for everyone.

Glad to hear you're happy with your surgery too.
Posted 4/22/2012 11:31 PM (GMT 0)
I agree that it decides to ****off, but I also think that it is not being irritated by stool, and that makes a HUGE difference. Just think about how many times a day it has to deal with stool when you have UC (15-20+ times a day for me). Once there is no more stool, there is much less irritation I think.

It's kind of like it is having a "rest", I guess.
Posted 4/23/2012 7:48 PM (GMT 0)
I also had lots of rectal involvement with my UC and three step j-pouch surgery. After the first surgery, I never had anymore pain or urgency again. I did pass small amounts of mucus occassionally (more once my j-pouch was hooked to the rectal cuff) but it was never painful or making me rush to the bathroom.
Posted 4/23/2012 10:13 PM (GMT 0)
Surgery deep in the pelvis carries with it a number of risks. A proctectomy requires deep access in the pelvis as does ileo-anal pouch formation, doing this in a single surgery helps to reduce these risks.

Peter
Posted 4/24/2012 5:42 AM (GMT 0)
with 3 step j-pouch surgery, what happens to the ileostomy after the 2nd step??
where do you poop from while you heal after 2nd step?
and what is the 3rd step exactly?
Posted 4/24/2012 8:54 AM (GMT 0)

kazygirl said...
with 3 step j-pouch surgery, what happens to the ileostomy after the 2nd step??
where do you poop from while you heal after 2nd step?
and what is the 3rd step exactly?

Step One: Removal of Colon.
Step Two: J-Pouch construction, loop ileo formation (an ileostomy created higher up the small intestine, now your new "poop hole"!).
Step Three: "Takedown", loop ileo reconnected, waste now passes all the way through small intestine to the pouch and you poo "normally".

I'm currently at step one, with a Sub-Total Colectomy, and after 14 months, still undecided on further surgery.
Posted 4/24/2012 10:37 AM (GMT 0)
will the loop ileo be in the same spot as the one i have now or in a different spot?
how many freakin holes do they put into our tummies?
Posted 4/24/2012 5:10 PM (GMT 0)
The loop ileostomy (phase two) will replace the end ileostomy (from phase one) but it will be at the same stoma opening site you already have.   My son had to switch sizes on the wafer and bag he used because the loop ileo (phase two) was slightly larger and different in shape to the end ileo that he had with the first surgery.   He now has a thin 4 inch horizontal scar where the Stoma site was.   He calls it his "battle wound".  cool
Posted 4/24/2012 5:35 PM (GMT 0)
Hi. My son Dillon had the same experience with his three step surgery. We were told they initially leave the rectum to keep the anal tissue healthy. There is also some issue of when they cut the rectal tissue away that the anal tissue retracks. They need to connect it immediately. Dillon also had major rectal involvement prior to surgery. Because of this the surgeon created a mucous fistula... They bring the new end of the rectum through the abdominal wall and leave it just under the skin. If it should become badly inflamed it can now ooze out through the skin instead of into the abdomen. I know this sounds gross but I think it is usually just a precaution. In reality Dillon had no issue with the rectum at all between surgeries. We were told that is because the ulcers are not being irritated by poop.
Posted 4/25/2012 8:35 AM (GMT 0)
Without meaning to hijack this thread, does anyone know how long you can go between Sub-Total Colectomy and J-Pouch construction, before it's no longer a viable option? I had my surgery 14 months ago, and am still very much undecided on whether to continue with my end Ileo, or try the J-Pouch. Something needs to be done at some point, as the piece of Rectum I have left bleeds sporadically, and I have to purge mucous several times a day, albeit without urgency or irritation.
Posted 4/30/2012 10:25 PM (GMT 0)
Silent - you can wait pretty much as long as you'd like as far as I know. My Dr said she had someone come back 10 years after to get the j-pouch. Now that said, she told me that I should make my decision within 5 years, but I'm 43 so it may have been an age thing.
Posted 5/1/2012 2:51 AM (GMT 0)
I was told by my surgeon that the rectum essentially is just an extension of the large intestine, aka it's an extension of your colon. I had the 3 step surgery done not because it was an emergency (even though it was DEFINITELY NEEDED) but because it was his preference to do it in 3 steps since it just gives the body more time to heal in between, hence less chance of any infection or complication with the end result. My first surgery, the entire colon was removed EXCEPT for the last 10 inches, which was my rectum. He left the rectum intact and left me with my end ileostomy so that my body got used to the initial shock of such a huge surgery AND so that it got used to not longer being engulfed with disease! I felt like gold after I recovered from my first surgery and this was why. My second surgery, he removed my rectum (the last 10 inches of the colon) and constructed my J pouch. My J pouch is made up of my small intestines only. Then I was left with my loop ileostomy. 3 months after that, I went in for my takedown, where the surgeon just removed my bag and reconnected the point where my small intestines were cracked open for the ostomy.

Basically my answer to your question I guess would be that the reason they don't remove everything or do anything all at once a lot of the time is because the more steps you take and the more time you give it to heal, the less chance there is for infection and the better the end result. This is what I was told. I am now living with my j pouch and loving it. I saw and x ray of the end result and my surgeon says he's very proud of it, says it looked "beautiful." I'm not sure why this makes me feel more confident about it, because it's not like my surgeon would look at the x ray and say "God this looks awful" but so far I am happy with my results. I started my surgeries last October and ended April 27, so it took me 7 months to get where I am, complication free (knock on wood!!)
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