I don't know much about it, other than it is pretty rare. Why are you asking? Do you have small bowel cancer?

Jan

Thanks for the reply Jan. I thought it was odd my dr brought it up as a possibility. I just had blood work and a stool sample tests. It shows my inflammation levels well below what they should be but im still in immense pain after I eat. Im going on my 5th remicade infusion next month but regardless of what the test show. Im not seeing improvements. He suggested another pouchoscopy to see what's going on in there. I'm waiting for them to call me to schedule it. I should mention, I also have this acidic feeling flowing through my upper GI. I have had a history of gastric ulcers in the past but as of early this year there were no signs of them and I'm current taking pantoprazole just in case. According to the inflammation markers I should be feeling great. That's not the case at all.

Doctors always mention all possible causes, even if unlikely, so try not to worry too much about cancer, unless there is something specific that you find out.

Inflammation markers are not a good way to determine level of disease, as it varies from person to person. You can have adhesion troubles without inflammation being the issue.

If you are having a great deal of pain soon after eating, your trouble is most likely upper GI, not pouch related. As I am sure you know, Crohn's can affect any part of the GI tract. I would think that you'd see a result from Remicade after 4 infusions if it was going to help you. Maybe it is time to switch to something else or add to it, like methotrexate.

Jan

Jan,

Is it normal to have the feeling of needing to empty the j pouch immediately after eating (within a couple of minutes) even if there's nothing that comes out? Is that normal j pouch behavior? Or could it be my crohns?

Yes, in a way at least. There is a normal gut reflex called the gastrocolic reflex that stimulates peristalsis when your stomach is full. This is to make room for the meal that will soon be coming along. It mostly affects the colon, but it also affects the small intestine. Some people are more sensitive to it than others. I can tell you that I nearly always feel the urge to empty my pouch within 30 minutes of a meal. But everyone is different. It all depends on your individual gut function.

Now, if this urge is accompanied by painful cramps, severe urgency, leakage, etc., then that would not be acceptable. And yes, Crohn's activity can definitely play a role.

Jan