Luckily not all Pompe patients have to use G-tube feeding, but for those who have this information might be interesting.
I received a PEG at June 1998 as my bodyweigtht decreased rapidly. The surgery went fine, but after surgery I experienced a lot of nerve pain around the PEG.
My respiratory care nurse consulted an ENT physician to check if he had any experience with similar pain experiences of patients with a tracheostomy. He recommended me to use an ear ointment that numbs the nerve pain and reduces the wild tissue that also can cause this pain. I received a prescription from my respiratory care specialist and applied the ear ointment on the skin around my G-tube. Since then I never experienced any pain around my G-tube/PEG anymore. The wild tissue too was eliminated.
I share this information with you as I notice that some people with G-tubes (among them cancer and neuromuscular disease patients) do experience quite some pain. This ear ointment may be helpful in solving this problem. It is only available on prescripion.
The name of the ear ointment is: TERRA-CORTRIL with POLYMYXINE-B (oxytetracycline 5mg/g, hydrocortisonacetaat 10mg/g, polymyxine-B 10.000 IE/g)