Warning: This Blog post is about poop! LOL Medical Mommies: any suggestions???
Two months ago, Ian had a “viral gastroenteritis” as diagnosed by the hospital during an admission. We were admitted for a total of 14 days, with 3 ER trips for severe diarrhea causing dehydration and hypoglycemia. To this day, Ian still has at least 2 watery-running diarrhea diapers everyday. It has a rotting-horrible smell.
He has had 3 c.diff toxin tests and 2 stool cultures. All of which have been negative and uneventful. Each day, I would say he has about 1 diaper, usually more (overnight) with blood in it. It can be very mucousy. I can tell he gets belly cramps before them at night because he stirs and whines before he poops. It is explosive and we can hear it over the monitor.
There is usually a lot of gas as well. With his Nissen fundoplication, it is extremely difficult for him to burp and all the air in his system passes through his intestines. Despite all the simethicone and venting, he still acquires a large amount of gas. We have been giving him Culturelle for Kids and Fluorastor for Kids for over a month now. I think it has helped get us to where we are now, but has not eradicated the problem.
It seems as though the colitis from the viral gastroenteritis has never been able to fully heal because the diarrhea keeps occurring. For other reasons (prior vomiting and severe reflux), Ian has been tested 3 times in multiple ways over the last year for allergies and they are all negative (endoscopy, patch testing, blood testing.) I know viruses can wreck havoc on the intestines and can take some time to heal and G tube fed babies have generally loose stools, but this seems ridiculous.
We are having an 18 month well visit tomorrow with the ped and I am wondering if anyone has any experience or advice for how this discussion should go tomorrow, or where it should lead. I'm curious if there is other testing that should be done, stones that haven’t been turned yet, or treatment we should inquire about.
After all of Ian’s severe GI problems, I am pretty much assuming he will end up with some type of Irritable Bowel dysfunction, but I don’t know much about onset and/or symptoms of various ones. Im wondering if viral gastroenteritis can trigger these in these fragile GI toddlers. I seems like this stomach virus has destroyed his intestines and he has never recovered fully from it.
In addition to all that, he has had a diaper rash for these 2 months that we have no prayer in eliminating because of tall the diarrhea. We have used several concoctions of “Greer’s Goos” including A&D ointment, Nystatin cream, and powder, Desitin, Calmoseptine, Proshield, and Clotrimazole 1% to name a few. Ironically enough, sometimes, he struggles to poop and it is very thick and pasty.
Since he is almost entirely tube-fed, I don’t think anything he is eating by mouth is causing issues. He hardly eats by mouth at all due to swallowing and oral aversion with food from all the vomiting and reflux.
Unfortunately, Ian has already been through all the hypoallergenic formulas over the last 18 months and none of them helped his system previously. Due to his reactive hypoglycemia, we have to concoct his food every night anyway. He simply cannot tolerate anything right out of the jar or can. His blood sugar is extremely sensitive and rises and falls violently, causing nausea and retching. He has even been on a blenderized diet prior with no help.
Any experience anyone has with something similar would be very helpful. It is extremely discouraging to finally settle one chronic problem, only to have another one appear a month later. Ian has been through so much, and all this testing and medications have really taken a toll on him, myself, and our family. Fortunately, Ian seems happy and unfazed by the stool issues, aside from the occasional belly cramps.