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I had colectomy and the J pouch was done 2014. This is much better , when I had the bag outside I had problems with kidney stones and it is so much of maintenance, smell although it is a little more convenient because you do not feel the pain to use the bathroom! with the JPouch I use the bathroom more often especially if I ate food that has fiber, milk also even if it is almond milk causes me diarrhea no matter how it was consumed even coconut milk. I tried mixing it with food but it does not work. Apple juice does the same too . My doctor told me to have food forming like rice, peanut butter etc. I tried but it makes me constipated. then, I have to have apple juice or milk to let it out. If I have to go out I mean church , food shopping or to travel by air, I have to not eat at least 7-8 hours before so I do not have to use the bathroom. If I ate and I bent down, or carry a box or anything that has at least 2-lbs and up ,it triggers my bathroom usage. I have to sit in the bathroom for at least 20 minutes or so. and then come back after an hour, and then the pain  that it causes...I have been analyzing my everyday routine and I realize that my day was almost all bathroom trips!

I am just doing a guessing game each day of what will make me feel better, and comfortable. I do not even know if my body is getting enough nutrients now... My work requires lots of standing but I can not do that now. No one will understand how it is only those who had the same issues.

Now, it is hard to spend overnight at others home because of this bathroom issues. Even eating out is not a good idea... 

I got scared of what the other member was saying that she is living at the end of her rope. ..

If anyone had some suggestions please let me now. Thanks for your time 

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HI Isabella, I think your doing the right thing in finding a different doctor.  You need someone with the heart of a teacher and who is knowledgeable about J-pouch issues.  Unfortunately, we are different than the 'normal' colon people  Have this new GI check you for possible pouchitis. It could be you're having issues due to this or another issue that medicine can help.

That said, you might want to try to adjust when you eat certain foods and see if that helps to control output.  I only use juice in smoothies and rarely then.  I go for the real fruit because of its fiber.  I try to eat most of my fruit before lunch so that I'm not up a lot at night.  I would also try to add more thickening foods to your diet such as oatmeal, potatoes, white rice. Soluble fiber will be your friend.  Things will be thicker, but still move.  I also only use Almond milk with something thickening, like a smoothie or oatmeal. That way I get the nutrition, but it doesn't move through so fast.

I'm really sorry you are going through this really awful time.  I wish I had a magic wand that could make everything better. My pouch will be twelve this year, but it took finding a good GI for it to behave anywhere near 'normal'. (The first 9 years were not so pretty. I understand what is like to be afraid to go anywhere because your pouch may act up.) Know your not alone. All of us have issues. Maybe not the same as yours, but we all struggle.  The good news is we can struggle together and get help from real people who have had the same issues we have. Don't give up searching for answers!

 

 

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