Pouch problems in the first month post takedown

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Golfdrumst

I had my pouch created in Feb 2013 and my loop ileostomy takedown four weeks ago tomorrow. My problems are that I am still needing to visit the bathroom upto 15 times per day and usually twice during the night. I can sometimes go for several hours and then need to go 6 times in an hour. I am being careful with my diet, no alcohol and am using loperimide(Immodium) on a daily basis. As well as needing to go to the bathroom multiple times, I also get strong urges or rushes when I feel that I might not be able to hold things in, similar to those when I had colitis and also often a need to return to the bathroom almost immediately, ie as if my pouch had not emptied properly. I guess what I'm looking for here is either some advice or reassurance that this is normal and that things will improve but when/ how long will this take?
Thanks

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Jan DollarModerator, RN, retired

Sounds pretty typical to me. One thing I learned over time is not to be so quick to get up and leave the bathroom when I think I am finished. I give it another five minutes or so to see if more is coming along. Usually, there is more upstream. If I am feeling particularly full, I wait until there is a rush of gas, which typically is at the end of the line, signaling that I am done. Then I am good for hours. Sometimes it helps to stand up for a minute, then sit back down.

But, those first three months can be quite challenging, since there does not seem to be a set pattern to things.

Jan

7/9/133:29 PM

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suebearMember

Yes, this is normal and that was my experience. It will get better but it's going to take time. Expect improvement in weeks, not days. I saw small improvement in six week increments over the first 6 months.

Sue

7/9/135:05 PM

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clz81Member

have you noticed things getting worse or has this been since takedown? i definitely agree to give it some time if this has been the pattern since takedown. however, if you were have less frequency and urges before, you may have developed an early case of pouchitis. my first case was very obvious. i was doing amazing for my first few weeks post takedown, then things took a bad turn. i went in for a scope at 6 weeks since i had many pouchitis symptoms, and they did confirm it was pouchitis.

7/9/135:24 PM

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LesandiegoMember

Your pouch is still expanding. Eventually, you will decrease the frequency with each passing month (say a prayer). Initially I was going about 10 times per day.

I am now 3 months post take down and my doctor states that I should be going 4-6 times per day.

With my Rx of Lomitol and Bentyl, I have been able to achieve an average 5 times a day.

You can try immodium, but it did not help me much.

7/10/1312:37 AM

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CeeeeCeeeeMember

As mentioned, the suggestion to stand up and then sit back down helps! Gravity is the key here. That is one of the reasons walking helps everything move on down and out! Try to be patient. You'll learn what your new plumbing prefers and go from there. Best wishes!

7/10/1312:50 PM

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