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I need to have my colon removed and my gastro guy is recommending J pouch rather than conventional ileostomy.  I can't figure out why.  QUESTION: To anyone who has had ileostomy and uses pouch - how is it?  How often do you need to replace bag? Is life better? Does anyone out there think J pouch is better? If so, why? Many, many thanks.

 Reply posted for rochellevalasek.



I don't eat pork now either..mainly cause it causes too much gas and I can't sleep with the gas passing through my intestines.  I still have food sensitivities after being on Remicade.  My 3rd treatment is on 2 Aug. 2012 in Chapel Hill, NC.  The doctor said if I'm not better after my 3rd infusion then he will add more strength to the Remicade and if that fails then I'll have to have the J-pouch done.  I'm glad here one gets to interact with people who KNOW first hand what this disease is like.  Thanks for you feedback..God Bless You and have a great week :)

 Reply posted for hockadoo.

J-Pouch is the bomb. You have much more freedom and less self consciousness. You won't be worrying so much. When I did have an illeol bag for 7 weeks, I wouldn't wish it on my own worst enemy. It's not comfortable, it is awful change, pee-euw! I am pretty vein when it comes to cleanliness. I emptied my bag almost every 20 to 30 minutes, flushing it out vigorously. I really don't see the pro side of the illeol pouch. 

 Reply posted for ridaddy1979.

Hello Riddaddy, 

I only have few sensitivities, nothing like I had before the surgery. Like I still can't handle pork...which is a blessing. I still have to be careful what and how many types of carbs I intake. Nothing major, just some things will make you feel yucky from being away from them so long. 

 Reply posted for rochellevalasek.

hockadoo...I thought that once one received the surgery to remove the colon that NO MORE FOOD SENSITIVITIES would occur!  I'm on Remicade now but if this doesn't't work then I will have to get my colon removed.  I looked on you tube and read a few things online that stated that the food sensitivities were gone after surgery.  It's really hard to eat so STRICT and to have to do so the rest of my life will be very tough.  Thanks for the info..helps to make what every adjustments that need to be made :)

 Reply posted for fatima.


And  to answer your questions...having the bag was really uncomfortable to me. I was really self-conscious. I had to replace my bag every 2 or 3 days. I had to empty it about 6 times. The benefit of the J pouch is that you will only have to have the bag temporarily. 

Yes go for the J pouch. You will only have to have the ileostomy for a short while. I'm 26 and I had my surgeries last year and I had to have a bag for 5 months and I hated it and am glad I don't have to have it anymore.

 Reply posted for hockadoo.

I forgot to add that I had Ulcerative Colitis for 15 years before the surgery.

 Reply posted for hockadoo.

I am 42 at the present. The one thing that didn't work for me is that my stool is still more of a loose/diarrhea consistency. Which does not bother me...I am just happy I no longer have UC or the possibility of getting colon cancer which they were approximating within two years I was so bad. I faced death a few times, so the trade was worth it.
The urgency is no longer there. THANK GOD! I still can go anywhere from 2 to 6 times a day. Usually if it is at a high frequency it is my fault...ha ha...I ate something I should have not had. You still have to watch what you eat, but nothing like you used to. I would never know I had UC other than I usually never have a normal stool consistency.

 Reply posted for rochellevalasek.

Rochelle - Thanks for the reply.  Can I ask a couple questions?  How old are you?  I am older (60) and have read J pouch may not work as well with us older folks.  How often are you going to the bathroom?  Is there still a sense of urgency?  Thanks again.  I appreciate your input.

 Reply posted for hockadoo.

Absolutely go for the JPouch. I am a new woman because of it. With a JPouch you do not have to live with an illeol bag. I only had to have one for 7 weeks while my "plumbing reconstruction" healed. Then I went into a second surgery to take the Illeol bag off and shut and reconnect the JPouch to the rectum. It is a tough surgery like any other surgery, but well worth it. I waited for years for a surgery like this. Literally...I would not get the colonostomy. I said I would wait for a surgery to come out that I won't have to wear a bag and it happened. yay! I had it done about 5 years ago.