Questions about j pouch surgery.

From what I understand, the ability to go from an end-ileo to a j-pouch has to do with what was left in tact at your emergency surgery (specifically how much of the rectum). I was not in this situation myself, but I have spoken with a couple people online who have gone from an emergency end-ileo to a j-pouch successfully. Many people with planned surgeries even choose to do it that way in three steps to reduce possible complications.

If you ask for horror stories, you will be able to find plenty. But studies show that the vast majority of people who have had j-pouch construction are happy with the results.

Mind you, it is a very difficult process and by no means a walk in the park. I haven't had my take-down yet, so my J-pouch is not yet connected, but I have been spending every day online reading about what to expect when I do... and it takes from four months to a year or more to adjust to your new J-pouch after it is connected and for it to really start working properly. Since it is made out of small intestine, it takes a while for the j-pouch to learn its new job and to grow/expand enough to hold for longer periods of time. Some people have trouble emptying, and others have trouble holding in. High frequency of bowel movements, butt burn (from the high acidity of the stool), and occasional anal leakage are common in the first few months. Sex can also be uncomfortable in some female patients while things are still settling and adjusting. Most of this improves over time and is no longer a problem after three or four months.

As far as permanent differences, barring any serious complications, people with j-pouches go from 5-8 times a day on average, but some go 1-3 times a day and others go much more. However, j-pouchers will tell you that bowel movements often coincide with going to the bathroom to urinate, so it's generally not really an inconvenience. Most people get up once or twice during the night to go. Many have annoying gas that can sometimes be difficult to pass without having an accident - some people learn to control this while others never do. However, a lot of these issues can also be managed through what, when, and how much you eat... For example, certain foods can cause more gas, or eating large meals late in the evening will cause you to get up more at night. (Keep in mind that the same can be said for people with healthy colons.)

I obviously thought it was worth it to try for the j-pouch... just couldn't stand the thought of a permanent ileostomy. It's really a very personal decision. If you choose to go for it, it will be quite an ordeal with two open surgeries to go through and recover from as well as the adjustment periods... so it's a matter of weighing that against what you would gain: not having to deal with a stoma, not worrying about appliances and whether they work properly, the aesthetic (vanity) and self-esteem reasons, etc....

The worst-case scenario is that the J-pouch would fail or that post-op issues are bad enough to be unbearable, and you go back to having an end-ileostomy again, and you would have gone through all that for nothing and be back where you started. However, if you have an experienced surgeon who is an expert at colorectal surgery, then this risk is extremely slim.

I was getting a little bummed yesterday reading about everyone's complaints on some of the various message boards, so I was happy to come across the following medical journals, posted by another j-pouch.org member here... I will post some of the quotes I found from the articles below so you can read the statistics yourself:

------------------------------------
www.ncbi.nlm.nih.gov/pmc/articles/PMC1420906/

"Long-term quality of life after ileal pouch surgery is excellent"

"On a scale of 0 to 10, mean happiness-with-surgery scores for each of the four postoperative intervals studied ranged from 8.9 to 9.3. "

"...quality of life was shown to increase after the first 2 years after surgery, and there was no deterioration thereafter."

"Ninety-eight percent of patients would recommend the surgery to others."

--------------------------------------------
www.ssat.com/cgi-bin/colitis.cgi

"Patient satisfaction is very high in patients with UC who undergo colectomy."

"When the IPAA [J-pouch] procedure is performed at centers with significant experience, at least 85-90% of patients have long-term functioning pouches. Nearly all patients would recommend the surgery to others, regardless of their operation (i.e., proctocolectomy with ileostomy or with IPAA )"

"At least 85% of patients have perfect fecal continence. In general, sexual function is preserved."

I can add very little to boostrap's thorough post. You should also ask this question in the Women's Health & Pregnancy forum here because many women have had their UC flare (or not flare) during pregnancy. Even with all those surgeries, what a wonderful outcome! A baby boy! It sort of makes everything worth it and puts everything in perspective, doesn't it?

kathy