We have been to the ER twice. We have been giving enema’s, suppositories, or irrigations depending on JC’s status. We have been through maybe two bouts w/ enteroc…or it never really was gone after the first oral course of flagyl. We had to do irrigations w/ Flagyl 3x per day for a while, then weaned down to 1-2x per day then 1x per day then put him on oral stool softner/lax then ADD a stimulant lax to that. Oh and we had some impacted stool/blockage that we had to try and get rid of and over medicated our baby on enemas (as per dr’s orders; gave us the WRONG info via email).
We saw some good results after the 3x per day irrigation. The enteroc. was gone and he was starting to poop on his own. But once we stopped irrigating, trying to rely on the oral meds to help him, things got erratic again.
Did I mention that there was a trip back out to Cinci in all of this???? We all drove out on a Thursday and were home by Monday. Dr. Levitt does not think tight anus, did diagnose (second time) enteroc., and is the one who put us on the irrigation/oral med schedule. We have tried and tried and tried several different things and still he is not pooping on his own enough. We occasionally get a day w/ some poop but then several days w/ nothing but smearing and we have to go back to irrigation which is the worst thing I have ever experienced. Joey Coop HATES it, screams and cries and tries to escape the entire time. It is hardly manageable.
So now we are off stool softner and on higher dose of lax. We will give this a few days and then try a different lax and then ??????
Everyday I wake up and hope that it is going to be a better day and most of the time it isn’t
Life is hard and health is not something anyone should take for granted.
I found your blog today (5-14-13). We recently had surgery with Dr. Levitt. We have had a time with Hirschsprungs disease associated enterocolitis. We also have the Malone cath in his belly button. I just want to talk to someone who has gone thru this. It is so hard.