"Pain associated with my jejunostomy tube and hernia"

I had a surgical jejunostomy tube placed toward the end of last year, due to gastroparesis, secondary to my Ehlers Danlos Syndrome Type III. 

It had been going okay until I got food poisoning early this year, which caused me to vomit multiple times. Since then I have had significant pain near my jejunostomy site, to the point where I cannot walk much and cannot tolerate running my feeds. I am supposed to be on daily enteral nutrition. My doctors believe it is another hernia, since I have had 4 spigelian hernias in the past in a similar place. We also believe I am allergic to the rubber they use to make this jejunostomy tube, as it has caused me constant pain and extreme itching from day one. I believe my previous surgeon did not believe I was in pain or had a hernia, but instead chose to believe it was all psychological. All 4 of my previous hernias never showed up on imaging and were never found during laparoscopic procedures, only open surgery. I am struggling with the pain and limited amount of activities I can do at the moment. I believe I am needing a surgeon who will be willing to do open surgery on me to fix this hernia and replace my current feeding tube with a different one that’s smaller and more discreet and also made of a different material. Can anyone please help out with this.

Thank you for you time.

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