Thanks for your replies. She doesn't have any bloody diarrhea, no diarrhea at all actually, she's on a daily dose of miralax to keep her going. That is a good tip to know about the stomach acid smell, I'll keep that one for future if it ever happens.
She does indicate pain, mostly by holding her breath, until her lips are literally purple, her neurologist said that she could actually pass out from holding it too long but she'll start breathing again. She's never done it that long, but we have noticed thru all of this that it is a big pain indicator for her. She also grimaces her face and will moan and cry. I can usually get a pretty accurate response from her when i say "if your stomach hurts look at me" she will sometimes spin her head right around to look me straight in the eye, so i'm sure it's stomach pain. She has had a full endocrinology work up also in Aug that showed she is low in vitamin d but nothing else. Last week I had her to her regular doctor for a complete urine work up and everything was fine there. We did that just to rule out other things before assuming it's her intestinal erosions.
She is on a daily dose of gas x to try and eleviate some of the gas she gets built up from swallowing air, I think it helps a little.
Thanks for all of your helpful ideas, I sure apprecitate them. I have a call into her GI waiting for advice on some pain meds.