Frustrated, but don't want to give up yet....

This is probably unrelated to your pouch, from what you've described. If that's true, removing the pouch wouldn't help at all. Some fairly common possibilities include pancreatitis and cholecystitis (gall bladder inflammation). Other possibilities include abscess (do you have any signs of infection, like fever?), lactose intolerance, and intestinal parasites. There's a long list.

How quickly does the pain come on, and how long does it last? Do you have any other symptoms? Does it matter what you eat, or does all food have the same effect?

In the meantime, as you're getting to the bottom of this, you might want to explore additional approaches to pain management. They won't give you the level of relief that narcotics provide, but they also are less likely to destroy your life. Opiates are great for short-term or intermittent pain management, but there can be unpleasant consequences to long-term daily use.

Has anyone checked your gall bladder? When mine went bad I would get horrible pain after I ate anything.

Thanks for the reply Scott F and mgmt10,

I haven't yet been checked for pancreatitis or cholecystitis. Gall Bladder problems do run in my family though. My mother and my grandmother both had to have their gall bladders removed. This is something, I am definitely going to have the Drs. explore. Scott F, to answer your questions... I don't have a fever or any signs of infections, the pain is almost immediately following any food intake (I'd say like within 2-3 minutes). It doesn't matter what I eat, everything triggers off this pain. I have noticed, If I go long periods without eating or eat too much in one serving the pain becomes extremely severe. I have horrible stomach sounds and gurgling throughout the day but that's been consistent since my take-down. This almost reminds me kinda like the dreaded gas pains that you have in the beginning stages of recovery from the J pouch take-down. Could it be that my body hasn't adjusted yet and I'm still dealing with just gas pains even being 7 months post take-down? Maybe I'm just reading too much into this... I really don't know what to think, since the Drs can't find anything wrong. I'm praying this MRI provides some answers because I know it's not in my head.

I also would want to rule out gallbladder or pancreatitis. Beyond that, this could esily be adhesions at the stoma site preventing normal flow of your meal. If you switch to a liquid diet and 6 small meals per day (instead of the typical 3 large meals), that would also point toward obstructive adhesions. The stoma site is the most common location for this. The fact that it coincided with take down would make me suspicious. Adhesions form within the first week or two of surgery.

Unfortunately, there is no test for this that is reliable, as adhesions do not show up on imaging. You rule out everything else, then surgical release is the treatment. Unfortunately, more surgery can lead to more adhesions. But definitely worth exploring.

Jan

Jan, That's exactly where I feel pain from time to time; My old stoma sight@ an adhesion would make sense considering it doesn't show on imaging. Any cures for adhesion other then surgery?

I feel kinda silly asking this but any chance you can explain exactly what an adhesion is?

Sure. Adhesions are scar tissue that form between organs or between an organ and the abdominal wall.

I forgot to clarify/mention in my prior post that if your symptoms improve with a liquid diet or switching to 6 small meals, that would suggest chronic obstruction and/or adhesions.

Jan

I also neglected to mention in my prior post that I have tried an all liquid diet and noticed a significant improvement in the pain department and with the little research I just did online, It would certainly suggest an adhesion or obstruction of some sort. If this cannot be detected by imaging then how are adhesions diagnosed? I would imagine the patient wanting to know for sure that he/she has an adhesion before allowing the surgeon once again open them up.

You diagnose by exclusion. That means you rule out other causes, leaving adhesions as all that is left. The only definitive diagnostic is exploratory surgery, which is also the treatment.

So, basically, surgery is reserved as the last resort when your quality of life depends on it. If you are willing to live on a pureed diet, then the doctors are OK with that. If not, you need to convince your surgeon that it is unacceptable.

Jan

I have an MRI coming up in a little over a week, hopefully that will provide some answers. Thanks for all the information Jan, you are an awesome encyclopedia of knowledge as usual. I will keep everyone posted on what the end result is. Have a great day.