I meant to chime in earlier about feeding tube issues. I hear a lot about seepage around the stoma and in almost nine months now, I have used less than ten gauze between my tube and skin. I have had few acid issues and my stoma is rarely red. All my doctors have asked me what I do and they ask to see my stoma every visit now to catch me irritated or in pain. A new GI Doctor even asked some nurses to come look. I work really hard to keep the acid manageable and I only clean my stoma once a day when I get up in the mornings.

I got rid of the 4 X 4 gauze as my skin is sensitive and tape is a bad thing for me. I have worked with the DME I use and switched to 2 X 2 which stay well withiut tape. I also have used baking soda at the first sign of seepage to eliminate skin breakdown. If a little baking soda doesn't help, I have even sprayed Spry xylitol spray since xylitol is antibacterial.

My supply list includes Clobetasol, one of the strongest corticosteroid ointments when any red pops up. The only bacteria of concern to me is staphlococcus aureus that causes skin infections and Mupirocin, generic Bactroban, works the best for skin infections. With a bad injury, I used Desitin as a protectant for 4 days.

I also only get seepage with formula and it is worse when I travel with a continuous feed pump for hours.


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