It sounds like you do have Gastroparesis. Any chance you're sick -- with a virus or something (based on the temperatures, fatigue etc.)? That can make your motility (temporarily) worsen. My daughter has a J tube (used to have a GJ) and we lower the rate of her feeds whenever she is sick with a cold or virus or whatever.
It does definitely sound like you have delayed gastric emptying or gastroparesis (which is poor motility of the stomach) -- especially since you do not tolerate anything in your stomach.
They can actually do the delayed gastric emptying test using formula - they do it that way for babies! They just mix the radioactive tracer into the formula, pump it into your stomach and then measure how much empties over 4 hours.
However, you would have to be able to keep the formula down - if you vomit, the test is basically worthless.
Have you considered trying motility medications? Erythromycin is often prescribed in the US. Domperidone is also an option and it is easily available in the UK. Reglan is also used.
My daughter also has pretty severe gastroparesis but with motility medications (she is on Domperidone) she is able to eat some food (and gets the rest through her J tube).
My daughter also sometimes drains bile from her G tube. That means your motility is pretty bad. That would be another good reason to try a motility medication.
Hi thanks so much for your reply!
I really do not feel unwell with a virus or anything so its anyones guess what the temperatures are but I think Ive decided to book a GP appointment (I think in america you call that your primary care dr?) to get some bloods and to ask for some more pain relief as Im trying to continue at school and my life etc and I had to have two weeks off!
The last time I had a bit of formula- it was Modulen actually, into the stomach I was sick
but thanks for that information- if things imporve ill ask them to do it with the feed!
I have tried motility meds- been on erythromycin, domperidone and metacloperamide but my idiot consultant stopped me from having them so Im now just on prucalopride which to be honest isnt helping. So Im going to ask for a motility medication if appropriate at my appointment of the 14th of December.
My bowel motility isnt the best either- I can only go after taking multiple senna doses- ducosol, movicol dont work and I cant tolerate lactose so cant have lactulose. They found when placing the PEG that gastografin doesnt go through my bowel quickly- and thats going down my tube!
To be honest Im often quite shocked and alarmed about the volume that can sometimes drain out the tube- its ridiculous! and ive taken pictures of when its been really bad to show to the dr and I showed my dietician and she was shocked and was like yep thats definitely pure bile!