Hi Sandra

yes, normal. Whilst many return to some version of eating within a few weeks, a select few have the issues similar to what you describe. Sometimes it is just about recognising that the time it is taking to return to eating might be a bit longer than you had hoped and that is still ok. Alex's experience and some ideas below.

Alex relied on his PEG for over 12 months. I remember quite clearly being "told off" by the oncologist who inferred that Alex's bloating, nausea and vomiting, was something he just had to deal with should "try harder" ...thanks doc - very useful . This was in the February of 2011 which was close to 12 months after start of treatment (and insertion of PEG) and 6 months after the completion of treatment.

As a consequence of this, we started documenting what was really happening. Alex's problems included bloating, nausea and vomiting as well as disturbed taste, appetite and ability to swallow.

At the time Alex was on an overnight pump feed which he managed to speed up to finish around 4am in the morning. Even so, he found himself completely lacking in appetite all day. Finally in the evening, he would try mushy food even though he couldn't taste it and didn't want it. Essentially the first two mouthfuls went down well, the third was a battle and made him feel bloated and nauseous and the fourth often caused him to vomit. Consequence: Alex became fearful of that 4th mouthful as the one that was likely to undo all his hard work so stopped doing it.

Plan B was to start taking some formula orally and the rest by pump. Over time he increased the oral intake and decreased the pump feed until it was 100% by mouth. He left the PEG in for about 3 months without using it before having it removed in August of 2011 which was 18 months after he had it inserted.

Two things happened that assisted in switching Alex from pump/PEG to oral feeds that I would recommend you consider or discuss with your doctor.
1. Alex started going to the speech pathologist who showed him what was happening with his swallow and gave him exercises to do including using food (jelly snakes) as part of the process. Eating (well, swallowing mush actually) became a competition instead of a chore. He used the speech pathologist as his personal cheer leading squad and she was very happy to be that.
2. A specialist unconnected with the oncology circus, but very familiar with eating disorders caused by illness and treatment, prescribed an anti-depressant. The doctor pitched it as an appetite stimulant but it did a world of good for Alex's mood as well. Don't know which part had the effect - improvement in mood or improvement in appetite, but over the next few months Alex became fixated with getting rid of the PEG and achieved this nearly 1 year to the day that he finished treatment and about 6 months after he started the anti-depressant.

Maybe something in Alex's story will provide ideas or at least reassurance that you are not peculiar