Aboveallislove
Super Moderator
I've strategerized DS's GI issues here for several years, seeking input, throwing out ideas, etc., so I wanted to share some "lessons" learned "ah ha" moments in case it helps anyone else. For about 4 years DS would slowly go through a good, fine, fair, poor, bad, horrible routine where he would stop eating, have constant tummy aches, horrible acid reflux, night waking, gagging sight of enzymes, draino tummy sound, it would slowly start up with a couple then more than all of the symptoms. The GIs put down to functional abdonminal pain (meaning either in his head or touchy nerves), even though he had a hospitalization for DIOS when about 2 which followed that exact pattern. Two times ago he did flagyl (equivalent) and then I upped Miralax and we had nearly a year of good. During those 4 years I discovered the white bread was a trigger and cut out the Texas Toast he loved and which always started it. Well about 3 weeks ago he was starved and ate 1/2 of a white bun which he's never had before. Now he doesn't get a tummy ache from that, but the next day he only stooled 1 x and it was hard to pass and then the routine started. And the pain gets worse...it doesn't go away after a few days would normally clear anything he ate. It took an enormous amount of clean out efforts but after everything was cleared he went back to no problems at all, which was his "normal" the last year. In my mind this means that the constipation caused by the bread was stuck with CF constipation and that in the past that's what was going on. ...something got adhered to the wall and just stuck there causing all the discomfort and other issues. I'll be running by the GI team so we know what's wrong so we know what to do! And obviously I'll avoid the triggers. Wanted to share in case others see something similar.