After realizing that Hoden really should not have to be dealing with me changing his bum so many times a day. We decided to take him back to his surgeon to see how we can help him long term. Our surgeon reviewed his records and decided that Hoden definitely has no compounding conditions. No Hirschsprungs disease or anything like that. He explained that because Hoden was born with a very tiny rectum in addition to it not connecting to the colon, he essentially is more like Imperforate Anus patients and they too have problems for the first few years post pull through.
The surgeon then ordered an x-ray of Hoden's bowels and since that was done in office he reviewed them right away. We were incredibly shocked to hear that Hoden even though he had pooped 20 times only two days before was massively and concerning constipated. He explained that Hoden was suffering from pseudo incontinence where bowel blockages cause alternating constipation and diarrhea. Which explained perfectly why he had been having so many bowel movements for days at time then would be constipated for a few, then normal and then back to the tons of bowel movements all over again.
The surgeon went on to explain that Hoden's next health goal is to get on a bowel schedule so that he only has 1-2 bowel movements a day. It was so relieving to hear that. We went home with an incredible amount of hope. We were able to start him on a laxative that night.
TMI warning:
Not knowing what to expect in the morning we put Hoden in a disposable with a cloth diaper cover on top (he sometimes sleeps in disposables if we have been out and about the night before as his overnight diapers are pretty big for a diaper bag). Boy was it the best call ever. That poor diaper did not know what had happened. It would have been a blow out for sure without that cover's tight elastic. It was obvious that he truly had been "backed up" for quite awhile.
Even while changing this epic diaper of all diapers Hoden was the happiest we have ever seen him in his life. He was literally bouncing of the walls. He was giggling, laughing and dancing around. He must have felt so much better. I felt so relieved as his mom to know that he wasn't uncomfortable anymore. It was so relieving to know that we were no longer going to have to deal with constant diaper changes and rashes.
Long term prognosis wise he may have to continue with a type of bowel management program but supposedly by potty training age he should be able to achieve full bowel control. Knowing that this is a short term problem is such an incredible blessing. Thank you all so much for your support.