ileostomy vs. j-pouch

aprilblue (nice name)

I'm having an illeostomy on April 4th...I chose not to have the j-pouch for several reasons:
1) Pouchitis - not wanting to have to take prednisone, or antibiotics, for this.
2) J-pouch surgery is a little more involved than illeostomy surgery
3) There are no internal "connections" with an illeostomy
4) After everything I read, and all the people I've talked to, I didn't want to learn how to go to the bathroom again.
5) The people whom I've met the past 6 months who have an illeostomy all seem to carry on normal lives and live well. some have problems (just read these forums), but all in all most seem happy with the illeostomy.

And, some other reasons...plus, being on prednisone for so long, I did not want to take the chance with any internal healing (see #3 above).

Oh, it seems "regular" bowl movements with a j-pouch are 4-6 times a day....maybe more...I just feel I would have more control with a pouch on the outside (after things settle down after surgery) for the rest of my life...it won't be convienient of course, but living with UC isn't convenient...

There's another misconception about the jpouch, prednisone is not prescribed for pouchitis. Antibiotics are prescribed.

Surgery is not that much more complicated, if having a 2-step. The final surgery is merely a reversal of the ostomy and one is in and out of the hospital fairly quickly. I actually think the permanent ostomy surgery is harder and more painful due to closure of the rectum. But that's my personal opinion.

One does not have to learn how to go to the bathroom again with a jpouch. The function is the same as with a colon and rectum.

You certainly need to go with the choice that is best for you, and I think you have determined that by choosing a permanent ileostomy. All surgery choices for UC are good and will relieve you of the disease. There is no perfect surgery but there is a surgery that is best suited for you. I could never have lived with a permanent ileo, too many skin issues and the cost of supplies would have been overwhelming. Be sure to check with your insurance company to see if they cover the cost of ostomy supplies. Some cover 100%, some less, and some not at all.

Sue

I was sold the j pouch as the greatest thing ever, hardly any problems ever, etc, etc.  Well, I have had just about every problem you can imagine in 20 years because of it.  Arthritis, diarrhea, aches, pains, and on and on.  If I had known before surgery of potential problems with the j pouch, I never would have went for it.  It is nice not to have to bother with appliances, but I spend on average more each year  on j pouch related problems (just trying to avoid more surgery) than appliances would cost for several years.   And now comes the beauty of pouch removal surgery at a very bad time for me.  Success rate means absolutely nothing if you happen to be one of the failures.  Suebear and Happy represent the best of the best in regard to j pouch successes.  Even when my pouch is working it's absolute best, I don't think I have ever got below 8x/day b.m. including getting up at night usually twice. This is close to average for most people.  One thing I hate about the pouch is with spicy foods.  With the ileo, no problems.  With the j pouch, it feels to me like I am pooping flaming gasoline.  I still think long term, the j pouch is going to be at some point a health risk.  You are storing infectious  body waste in your small intestine.  Over the years there are many potential serious problems because of that.  Most people are willing to take that risk to avoid an appliance on their side because of body image, or possible activity restrictions. I hope they don't live to regret that.  Best of luck.

PS: If you want more replies to your actual question, maybe you need to ask on the ostomy boards. 

Thank you all for your replies!

My husband has a j-pouch and like suebear and happy, he has never had a problem with it. He doesn't go everytime he pees, though. So I'm a little confused at what some of you are saying about that. But he does go several times a day. Maybe 3-4. And gmark, my husband eats hot sauce like it's going out of style and doesn't have issues with that either. I'm sorry to hear that your pouch has given you so much problems.

If I were to ever get to the point of removing my colon, I would go for the j-pouch. Like gmark said, for me it would be partially because of body image and partially because of the cost of supplies and having to use them. I would want to try to go as normal as possible again and to me that would be the j-pouch. I don't know if the body image thing sounds shallow or not, but I even asked my husband about that. What if I were to have to get my colon removed and the j-pouch wasn't an option and I HAD to just have an ileo... And he said that would be hard. I guess hard to be intimate with me if I had that. Which I thought his answer was odd since he has had one and had UC. But I guess it's understandable?? I guess like myself, he too would want things to be as normal as they could be.

gmark:

Sorry you have had a lot of trouble. Has any doctor ever ruled out Crohns as a diagnosis for you?