We saw Dr. K today! It had been a very long time since we last visited him. We were supposed to go back last September, which would have been a year, but thanks to scheduling conflicts we just now were able to make it work. So almost 18 months later, 30 months after your colostomy pull through, your bottom “feels amazing” according to Dr. K. He really has a way with words and always makes us laugh.
It’s exactly what we wanted to hear! No need to start dilations up again, your scar ring is soft and not causing any issues. In fact, he thinks your Hirschprung’s is very much under control. It is one of those diseases that once you have it, there is no “cure”. You can treat it, but it is always there. However, Dr. K doesn’t think you act like a Hirschprung’s patient at all. This is surprising considering our track record. We’ll take it!
I mentioned to him my theory of your episodes being bowel movement related. I told him how I thought you got backed up despite your chronic diarrhea and that’s why once a month or so you vomit non-stop and have huge diapers. Dr. K was able to confidently tell me that at this point, that is not the case. He saw your hip X-Rays and could see that your “tank was completely empty”. I was positive my theory was correct. Experience had practically proven it to me! So now I am back to square one on all this. Dr. K thinks we ought to have GI try some exploratory measures, such as biopsies or probes, to figure out what is happening. An absorption issue was thrown out there as something to look into. But really, the possibilities are countless. One thing is certain. We need some answers. Because we are going on our 6th straight week of diarrhea, and that’s not good for anyone.