Jan 02, 2010 - 1:43 pm
Hi all - got my PEG placed 12-24-2009. Experienced more pain than I'd anticipated - surgeon later explained (in a very kind fashion) that more tissue experiences trauma when you have a thicker wall to penetrate (straight-speak: fat people have more pain). OK, I can accept that. At 5'7" and just over 200 lbs, I'm fat.
Have since experienced on-and-off-again cramping, level with PEG site, but cramps several inches away, nearly to the side sometimes, not at incision site. I got no suggestions from surgeons when I brought it up - just that it wouldn't be caused by the PEG that far away from the incision and tube. Has anyone else had stomach cramping not at incision? Have also had two overnight bleeding (from PEG incision site) scares.
I have also noticed that I smell an "off" odor when looking at PEG tube or doing maintenance. Kind of like very mild vomit. Has anyone experienced this? I see no redness or pus when I clean the site nightly. I currently can eat, and just flush the tube with water once a day.
More than a little frustrated with trying to follow up with surgeon's office - the earliest appointment I could get was Jan 11, and they could offer no support over phone - ended up in ER 12-29 to have PEG placement checked (bled through dressings). Hokey, but I knew I'd be OK when the xray technician came to collect me for my close-up, and his name was "Innocent" AND it was his birthday. Two days later, experienced much more blood loss at night - doctors weren't in at all then (New Year's), so I just watched and waited - bleeding stopped, again. Surgeon on call told me he wouldn't be concerned (course not - not his blood). I've come up with a way to keep myself from moving during the night, and have had no bleeding issues for two days now (fingers crossed).
This amazingly wordy post is my way of doing some venting, and calling out to anyone who may have a similar experience that they can share with me. I appreciate any insight you can offer.