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Reply to "Removing my colon wasn't all I was promised"

Although I do not have a j pouch I do have a k pouch and still remember pre-surgery misery.

I always carried a small squeezable water bottle with me (long before wipes were invented) to clean up in public stalls...it made a huge difference to the hell I was living in. Use liquid glycerine soap, but only a drop, in the water if you need to. You can pre-fill with the liquid soap and then just add water in the washroom when you get there or just shave off a few flakes of it from a bar of soap (dollar store sells them in different colors and smells) or use Pears (my fave), add water and shake.

It helps a lot...do not understand the pocket either but then you might need your surgeon to explain it to you.

I will make a comment here...Nothing will ever replace your colon the way nature planned it to function. At best, if we are lucky, we get a functional substitute that is liveable within whatever we consider to be acceptable criteria. 

Some of us can and do 'put up with ' the pain and live with it. Others cannot or will not...that is a very, very personal thing, depending on the personal hell that we lived in before surgery and our own pain and discomfort thresholds. 

But, and I am very honest here, no one should have to live with a horrible quality of life that prevents them from functioning and living normally. Yes, we must modify and accommodate ourselves to our new normal but once past that biological learning curve, we should not be forced to live in pain or hell.

Sharon

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