Jim, your feeding tube clearly needs some attention even if it isn't an infection (although pain and bad smell equals infection in a lot of cases).

I am not sure how the system works there but in Alex's case it was the nurse who was expert in dealing with leaks, pain and smells, not the doctor who replaced the PEG/feeding tube. I really think you need to ring the doctor/technician who is replacing the PEG, let them know you are in pain, are leaking, losing weight and have a bad smell around the tube and you need to extend your appointment to discuss the issues and give you some ideas on how to manage. I suspect they will find something there that shouldn't be happening (infection would be my guess) that should be treated.

The nurse might be able to give you some tips on how to manage things if it continues or happens again.

Alex had all of the things you are suffering and it was suggested that he go in to see the nurse at a separate appointment to get help. He never got there with other multiple complications happening at the same time and the antibiotics used during his complications, probably sorted out the infection at the PEG site as well.

Alex is fascinated with how things work (fixed his own and everyone elses chemo pumps on chemo days :)) and managed to fix his leaks with gauze under the flange and a clothes peg as a back stop for backflow. For a while there I was a bit worried I would get home one day and find he had used plumbing tape or silcon sealant smile


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight