My daughter is 16 years old and been dealing with GP/CIP for her entire life. She is a vibrant, smart, funny and has a contagious smile. She went into a bad episode about 2 1/2 years ago and during that time has spent 160 nights in the hospital and numerous (too many to count) ER visits. Since she was born she is in constant pain (lowest on the pain scale 5) Her GI (which has been her Dr since she was 8) said he wanted to schedule her for motility tests again (the last time was between the ages of 3-5). It has been over 6 months and we have found - her esophagus, small intestine and large intestines are non-functioning. She just had a lower Barium enema study and I was shocked to see the screen. Her large intestine looked like a balloon animal - it was redundant and it stretched so big - it was the size of a baby. The Dr doing the X-Ray said her intestine is stretched as wide as her pelvis. They inserted 2 gallons and it stayed in the huge stretched out area.
No wonder she sometimes does not go the bathroom for 30 days.
This testing was horrible for my daughter to experience but we are able to see what is really happening (or not happening)
I guess the silly people that thought she or I was suffering from Munchhausen ....(again)
should see her X-Rays or better yet just live in her pain filled shoes for a few days .....
If anyone out there has a similar experience or can add to any of my questions - please post -
Oh another thing to add - miralax does not work on her any longer -(I guess too many years)
Enemas dont work on her - from top or bottom -
Here are a few of my questions for the Surgeon on Wednesday
1. Can it rupture ?
if partial removal -
how much will you take ?
how much will you leave ?
can the same thing happen to the remaining intestine ?
If so - how can it be prevented
Thanks everyone -