I went back to work on Thursday. Maybe not the wisest choice, as I was still feeling a bit weak and exhausted, but as I am the only psychologist on duty until the 9th of January I felt obligated to go back to work. Thursday night when I went to sleep my tube was still working fine. During the night I kept waking up feeling sick and burping up formula. Knowing what that means, I checked my stomach in the morning and was able to vent tube feeding formula from my stomach. I was (and still am) devastated. This time my tube was even longer than the last time and according to my GI doc it was positioned really well. Still, it only took two days for it to migrate back into my stomach.
My GI doc is on vacation until the 10th of Jan., but I still texted him asking if he could tell me whom to call if the j-portion inside my stomach was starting to bother me more and make me feel sick (as it usually does). He texted back to say that he could reposition the tube on Tuesday. I talked to my dietician who thinks it makes absolutely no sense to keep repositioning the tubes. I therefore texted him again asking if he could maybe try the PEJ again, but I received no answer.
It's hard for me to put into words what I feel. I am scared because I know that no matter what tube we used it won't stay down. The tube that I have in now, was the last resort through the stomach j-tube, everyone believed that it was just the buttons that wouldn't stay down, but this tube was supposed to stay in place.
When I saw my new GI doc for the first time, he said that having retroflexing j-tubes certainly points to a motility problem. It really scares me to think that this is what's happening.