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J pouchers: is it "uncomfortable to "hold it" and how long can you wait?

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Posted 11/23/2014 1:05 PM (GMT 0)
Hi all! I was recently speaking to a J poucher who told me it is very uncomfortable for her to hold it and that she worries about going on 45 minute car rides because she might have an accident. Are these two situations the norm? We have a boat and like to go out all day. Coming back to the marina twice is acceptable, but more than that would really put a crimp in the day. Also, my family lives 3 1/2 hours away and we frequently drive to see them. If the above-stated issues are the norm, it would keep me from doing those things. Thanks for your help.
Posted 11/23/2014 5:57 PM (GMT 0)
I know everyone's pouch acts differently, but in my situation I am able to go out on the boat without a problem. I might have to go once and in the summer time my pouch was less than 6 months old. The only time I feel some discomfort is when I am at work. I am a nurse and I run around for 12 hours. Since I am on my feet constantly moving around I feel like I need to go more often. I am able to hold it for a couple hours if I need to, but I get a bloated feeling.

I've never had to stop on a car ride to use the restroom. I am always able to go when it is convenient for me. You may need to take supplements to slow things down like lomotil or immodium. I drink a teaspoon of metamucil every day and it thickens things up perfect for me. Lomotil slowed things down TOO MUCH for me. Everyone is different.
Posted 11/23/2014 11:29 PM (GMT 0)
I can hold it for hours if I have to. But by that long, it gets uncomfortable. For example this afternoon I was at a friends house for lunch. I arrived at noon there and just got home now. I was able to hold it for the entire 6 hours no problem but the last hour was pretty uncomfortable. I just don't like using other peoples bathrooms especially when it's right off the kitchen where everyone is gathered! I've had my j pouch four years and not once have I had an accident....not even close.
Posted 11/24/2014 7:15 PM (GMT 0)
Very uncomfortable to hold and worried about 45 minute car-rides doesn't sound normal to me, she might have pouchitis that isn't being treated.

I'm able to sleep through the night and can make any plans that I want; I can hold it for hours without much discomfort.

I'm currently battling pouchitis myself and it is not fun but it is so much better than having UC.
Posted 11/25/2014 10:03 PM (GMT 0)
I'm 3 months post op and I felt like that when I had pouchitis. I go 3-4 times per day and just because of how my schedule works and what-not. I have no issues holding it for as long as needed. The "discomfort" for me is the longer I hold the more bloated/gassy I feel. It's not a feeling like I have to poop really bad. Sort of difficult to explain but I have no issues holding and I eat whatever I want. I have avoided coffee and alcohol for now but I can eat salads and whatever else...oh and spicy things I avoid because that is more painful coming out than going in at this point.

I feel the real battle for pouches is hydration, that is what's hardest for me. Other than that, good to go.
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