JW,

My tube hurt really bad at first and when I called they kept telling me it shouldn't hurt. I have had it out even for a while and it still hurts in the same place. It was stitched in and had these wierd metal "toggle bolts" (as they called them). It was cinched down really tight and literally was tearing the skin. They said it was at an unusual angle because of the size and location of my stomach. I had all the stitches cut out and half of the water let out but I still hurt from time to time and I got full immediately whenever I tried to feed through it. They told me it was infected and we went a round of anti-fungal and antibiotics. It is important to keep it flushed at least daily and use peroxide around the wound at least daily.

Mine was a pain and hassle, too, and I was glad to finally have it out. I lost about 70 lbs total from August to January but I have gained back 25 lbs since March. I think your mother and me are exceptions and generally there are little or no problems related to the tube. Be patient but be dilligent. If you can isolate specific issues with the tube, the doctors or people her can help point you towards resolution. You could ask for lidocaine in the tube and put it around the skin short-term to ease the pain.

Ed

SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023