Jun 14, 2013 - 8:07 pm
Hi everyone- I finished the primary Cisplatin and concurrent radiation on May 10th and finally succumbed to PEG on Friday June7th. I started the adjuvant chemotherapy on May 30th and the 5FU tore up my mouth and throat way worse than the Cisplatan or Radiation and the DOCS all agreed the weightloss was too much. I seem to be getting quite a bit of pain from the PEG site when I sit up, roll over or move in certain directions(Like Hernia pain). If you slide the outer large plastic button outward, you can see 3 inner buttons that pull the tube way into my belly. That is where the pain is coming from and the Dr. who installed the tube says it's normal. Those inner buttons are glued or stitched and will come loose in week or so. It makes the tube site hard to clean as well as the buttons collect everything. Does anyone else have this type of tube and did you have pain. Were you able to gravity feed? My tube will only allow thin meals by pressure on the syringe. Thanks!