I have a hole in my esophagus and the treatment is a stomach feeding tube and NPO nothing by mouth in hopes it will heal. It’s been 5 months and it is still there. My doctor is trying to get me into a Mayo Clinic.
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@bdungan Welcome to Connect. I do understand your dilemma and I hope you can be seen at Mayo. My dad had a few times in his life where he had a feeding tube and orders for nothing by mouth because of a traumatic brain injury and he lost the ability to swallow. He had to relearn that, and later in his life it became a problem again. I was taking care of him and managing the stomach tube and feedings, so I know how frustrating this can be for a patient, and the liquids for tube feeding don't have as much nutrition as real food. I have hope for you because I know that the doctors at Mayo do take on some of the more difficult health problems.
I came to Mayo for spine surgery after being turned down by 5 surgeons in my local area. I was impressed not only with the expertise of the Mayo specialists, but also the compassion shown to me by everyone there. Will you share your progress here on Connect?
Thanks so much for your comment. I am on my third stomach port. First one fell out second one leaked I had a new one put in this week. It seems to be. Working. I just get so thirsty. I can rinse my mouth out but I’m not supposed to swallow.
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@bdungan You can also take on water through the stomach tube. You might ask your doctor how much you need in addition to the liquid meals. I'm sure you are flushing the tubes with water anyway during your protocol. It also helps to clean the skin around the port daily to make sure it isn't getting infected. I would think a hole in the esophagus could also be a path for infection within the body. Have you been prescribed antibiotics?
You doctor may already have this information. Here is the page on the Mayo website for physician referrals to Mayo.
Hopefully, you will hear something soon. I know it's hard to live with the limitations. At which of the Mayo campuses are you trying to be seen for an appointment?
I have had a chest tube drain the infection and I’m on a antibiotic three times a day. I get water 6 times a day thru my stomachs port with my antibiotics. I just hope I’m accepted at Mayo and they can close the hole. Thanks for your input.
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