possible complete colectomy/ileostomy with j-pouch

[twinsmomplus2more]

My 15 y/o daughter has total colonic inertia.  She has no bowel control or motility at all and never has.  She has had an ACE/Malone for about 3 years now.  She had a partial colectomy in December to remove about half of her nonfunctioning colon.  This was done in hopes that the rest of her colon would begin to function.  Unfortunately, it was ineffective, and she continues to require daily flushes through her ACE.  Now the ACE is not working and she is having issues with fecal retention, bloating, pain, and possible impactions.  This has been going on for about 2 weeks now.
We went to see her GI doctor today.  She was concerned because her colon is quite full, despite ineffective daily flushes.  She also found blood in her stool upon a rectal exam.  She ordered a KUB and a ton of blood work.  She also recommended that she have her entire colon removed and have an ileostomy with a j-pouch.
My question involves the ileostomy and j-pouch.  I really need some reassuring and, I guess a second opinion??  I don't know much of anything about this procedure or surgery.  Is this the same as a colostomy?  Will she need to empty a bag for the rest of her life?  I was also told that the j-pouch was internal?  What does that mean?  I'm so confused.
Can you help??  Please??

Debra

[Thane A Blinman, MD, FAAP]

Sorry to hear about your daughter’s troubles.  

It sounds like a reasonable strategy to remove the colon:  it sounds like all efforts have been made to make that organ function, and these have failed.  If you were to proceed with this, then where would that leave her “plumbing,” as it were.

The “j-pouch” is simply the very end of the small bowel formed into a “J” shape and sewn to itself to make a bag, or reservoir.  An opening is created at the bottom (in the curvy part of the J) and the “J” is pulled into the pelvis and that hole is attached to the anus.   This is the most common form of reconstruction after total colectomy.  

But it is not her only surgical option.  Other options:

1.  A subtotal colectomy, leaving just the rectum (attaching the small bowel to the rectum)
2.  A total colectomy (including the rectum) and some other type of reconstruction (“S” pouches and straight pullthroughs—no pouch—are used)
3.  A permanent ileostomy
4.  A permanent colostomy.

For any operation involving a total colectomy and a “pouch” procedure, a TEMPORARY ileostomy would probably be done in order to let the reconstruction in the pelvis heal up.  Then after a period of time—say around 6 weeks—that ileostomy would be closed or “taken down”, allowing the fecal stream to exit via the anus again.  

I recommend going to see a surgeon and asking him or her about these options, and their relative risks and benefits.  And have the surgeon draw you some pictures!  

[twinsmomplus2more]

Thank you very much, Dr.Blinman,

I appreciate your time in answering me.  We do have an appointment with the surgeon next Tuesday, but I really needed to have more information before going in.  This is a very difficult decision and a major surgery.  I need to know as much about it as possible.
I agree with you that something needs to be done, but now it's time to gather the info and determine what is best.  Thank you again for your information.

Debra