j-pouch surgery

I'd posted earlier, telling of my wife's situation with a pre-cancerous polyp and a history of previous colon cancer. We met with our surgeon and he's recommending a total procto-colectomy with an ileo-anal anastomosis. He would remove the remainder of the colon, including the rectum. The small intestine would be connected to the anus. He would create something called a j-pouch out of the end of the small intestine. This j-pouch is meant to replace the rectum for storage of waste. Full control of bowel movements is retained. I'm wondering if anyone has experience with this surgery and would be willing to tell us what life would be like post surgery. We have not definitely said we'd go with the ileoanal surgery instead of the ileorectal. The problem with keeping her rectum is that her genetic predisposition to colon cancer would leave us with a significantly raised risk for future cancer. The benefit of the ileoanal surgery is that the risk of further colon cancer drops very close to zero.
Thanks.
Michael

[CalGal]

If you don't get any response, you may want to try on some Inflammatory Bowel Disease (IBD) boards. This form of surgery is often used by those with ulcerative colitis.

[Morecambe]

Hi - I remember placing a reply to your earlier posting.  I underwent the "ileo rectal" rather than the "ileoanal" surgery so I can't respond on the experience of the J pouch.

However, if I were in your situation I suppose I would ask the following questions:-

- is the "defecating experience" after the ileoanal/J pouch worse/more troublesome than the defecating experience after the ileorectal??  In other words does the experience of the J pouch impinge on your life to a much greater extent for whatever reasons??

- if so, then is it possible to undergo the ileorectal procedure, then keep a close eye via regular sigmoidoscopies on the state of the rectum, and then if the rectum starts to look "pre-cancerous (or whatever) convert the "ileorectal" into an "ileoanal".  Can one assume that if in the future, the ileorectal is converted to an ileoanal, then the removal of the cancerous rectum will not have increased the risk of any metastising elsewhere??

Good luck
Morecambe

[mikeandjean]

I took CalGal's suggestion and did some research (via Google) on IBD. Sure enough, there is plenty of information, both professional and personal, about the J-pouch surgery. Sounds like a very promising route for us, with a good bit of experience out there with j-pouch surgery.

[CalGal]

I hope you'll find enough of an answer 'for you.' Be sure to ask LOTS of questions.

[debbie207]

i am just about to go through the same thing in a couple of weeks,i have had a large amount of large bowel removed already due to  polps the ones i have has a really long name to it and is really rare so they say in such a young age i was 27 when there first found them now im 32. i am really unsure of what to except they said they would join the small one up to some pouch is that the j pouch you mentioned?? i belive for myself this is the best suggestion cause they can never remove the lot of them at once and they just keep growing and im always at risk of cancer. i have had a stoma before and do you know if this op is likey to have the same outcome or is it just if things go wrong again, i really need to talk to the doctor again i know. can you help me with any information you may no?

[TrudieC]

Yes, this would be the J-Pouch.  If things go wrong you could have a stoma again but odds are good all will be fine.  I had my J-Pouch done 16 years ago and have had such success.  The first 6 months are quite challenging but be vigilant in adjusting your meds and diet and you will get there.  It is so worth it.

[katy55]

I no not know if you have had your surgery or not yet but I have a j pouch which I have had for 14 years and I have had no problems going to the toilet about 5 times a day mostly at night or in the early morning.Just lately I have been getting a lot of pains in my stomach and i have been told it is the scar tissues and the pain is unbelievable has any one else got the same problem.

[niki26]

Honestly if I could go back in time I wouldnt have gotten the removal of the large intestine and a j-pouch... since i've gotten that surgery 6 years ago i've had nothing but problems with it. Although i have Ulcerative Colitis and that could be one of the reasons. Just make sure you get a second opinion. Like the poster  trudie said the first 6 months r usually difficult because of the healing time. And for awhile you'll always wanna kno that there is a bathroom close by.

[Julieann606]

Hi, I had this surgery 13 years ago, including the rectum. Reply if you'd like more info, although I've just seen the date and you've probably had to make your decision by now. It really is ok, I lead a normal and healthy life and go to the toilet about 4-5 times a day. There's so much more info I could give you if you still need it, but remember this is just my experience, but everyone else I know with a pouch are all fine too. Put it this way, you would probably find that the 2 op procedures over 3 months are hellish and the following year after, a real learning process, possibly with some complications just to add to your woes, but eventually, having a pouch would be like second nature and it's something you would adapt to having. We're human, we adapt and become stronger people in the process. Get a specialist to explain everything to you. I hope you have made the right decision for you, but a pouch is not so bad, it's easy to get caught up in the negative reviews, but at the end of the day, if it keeps you alive and even happy after a while, you really have nothing to lose... listen to your specialist. Good luck x

[mikeandjean]

Thanks for everyone's comments. J had her surgery in 12/08 and has dealt well with the challenges (there have been many) of the last year. Major problem I guess was the ileus, essentially an intestinal shutdown, a few months after surgery. That put her back in the hospital for a week. She still has to deal with 5 to 7 bowel movements per day. One issue on which I've seen no discussion is that each bowel movement takes about 15 to 20 minutes. She had the special x-ray called a defocography and the docs say the pouch does seem to be working but no one has been able to explain why a bowel movement takes so long. You can do the math and see that she's having to spend many hours each day in the bathroom. I'd be very interested to hear what foods cause other people problems. She used to like spicy food but can't go near anything with some zip to it any more. Also has a fair amount of cramping, pretty much controlled by medicine, but I'd appreciate hearing what others have found help in fighting that.
I should look into cross posting on the IBS pages, too.
Thanks.
Michael

[tdurvin]

hi my name is tiffany.i am 25.i have had bowel problems since i was born.doctors always told me it was my fault that i didnt eat the right food.the doctors never did any test on me to see why i  was so sick until last year.the doctor said he will need to remove my large intestine,but he has not told me what i have.he just says my intestine dont work. but im scared to have the surgery because i have known 3 people to die this year from having the same surgery and one of the 3 was my aunt.if something dont happen to me im scared that i might wake up with a bag on my side and thats one thing i dont want. i been sick fomr so long i dont know what to do.i have 3 young kids that need me .what should i do

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