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Anyone diagnosed with Gastroparesis?

Digestive Health | Last Active: Apr 10 5:06pm | Replies (204)

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@aishia

Hello All, I'm new to this thread but I must say so far I ha e read nothing but positive and encouraging comments. I was diagnosed with Gastroparessis in 2014 and I'm in Raleigh, NC. I have tried many medicines including Reglan, Erythromycin, etc. I currently rotate between Zofran, Benadryl, and Phenergan for nausea. I was recently diagnosed with Jackhammer Esophagus and I'm waiting on my appointment for Botox injections... I have been looking to get the Pacemaker but no doctors here in NC actually performs the procedure. I've lost weight, had to have a port placed due to my veins not being accessible due to dehydration from vomiting so much in the beginning. I do have a few questions, feedback is greatly appreciated.

Does anyone know of any GI specialist that will do the initial consult over the phone?

Has anyone had their insurance cover traveling cost to go out if state to see another specialist or to have a procedure done such as the Pacemaker or G-Poem surgery?

Could someone please provide some of their best GI or Gastroparesis specialist?

I'm at the point where if I need to travel for a resolution I will. My last gastric emptying study was in 2014 should I request another one or can doctor's use the previous test?

Thank you all in advance for your feedback.

***Aetna is my current health insurance***

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Replies to "Hello All, I'm new to this thread but I must say so far I ha e..."

Greetings Aishia,

Thank you for your imput on your personal experience with Gastroparesis..I empathize with your story too. I can say that it is an ongoing battle that doesn't have any ending for sure!. In answer to your ? about the stomach emptying test... you only need it one time to determine how long it takes your nerves in your stomach to digest, I was told by my Gastroenterologist. I originally had it done in 2007. If anything, the symptoms will get worse over time as we get older. I have found that diet is the best option. I am not taking Zofran or any of the other drugs I had taken in the past for nausea either. I have found that drinking tea made from natural things like Ginger root and Basil leaves will help with symptoms. I grow my own Basil too and then dry it to have it on hand. Excersize too helps as was mentioned by another member prior. Some times I experiment with eating a food that I was told that I shouldn't eat and it will be okay. I think it depends on other things going on as to if it will make me sick or not or be tolerated. That's so weird I think but thought I would pass that on as it has happened. Like raw lettuce, Romain, I can tolerate once in a while. I do a lot of smoothies and have found that using a Super Food of dehydrated veggies, fruits, probiotics and vitamins mixed with coconut or almond milk, ice and banana or strawberries or powdered peanut butter in the blender is very good!. I buy it at Walmart in the vitamin section and it comes in a canister and I have found that the cocoa flavored one is good because then you don't have that green algae, alfphalfa flavor thing to deal with!. It makes a great smoothie, I have it as a meal because it is so big and I get 50 items in it at once as is listed on the packaging. I live in NE Missouri and the Gastro Dr I have wanted to do the Botox on me but I said no because it only lasts for 6 mnths. I hope you get a good Dr. too. I know that it is not easy to deal with daily and if you haven't had a good dietitian, I would recommend that too. Just Keep Swimming, Just Keep Swimming!
Stay safe!
Darlia

Hello @aishia,

I'd like to welcome you, and thank you for reaching out to Mayo Clinic Connect. We're so glad you've joined. Mayo Clinic doctors diagnose and treat almost 1,600 people with gastroparesis every year, and Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation by U.S. News & World Report.
Here's some information about gastroparesis and Mayo Clinic's care approach: https://www.mayoclinic.org/diseases-conditions/gastroparesis/care-at-mayo-clinic/mac-20355796

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

Might I suggest you also call Mayo Clinic's Patient Account Services? The number to call is 800-660-4582
For further information check out this resource about billing and insurance from Mayo Clinic: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance

I'd also like to introduce you to @katmandoo who has a gastric pacemaker due to idiopathic gastroparesis, and who will be able to share some insights that might help you.

You may also wish to view this conversation on Connect, "Does anyone here have or heard of nutcracker esophagus?" https://connect.mayoclinic.org/discussion/does-anyone-here-have-or-heard-of-nutcracker-esophagus/, where @blackoutthesun @maureercria have shared their experiences with nutcracker esophagus, also referred to as jackhammer esophagus.

@aishia, how are you managing your symptoms day-to-day?

I have written in about all my situations that give me awake and asleep problems. I have seen a urologist and gastroenterologist and tried medications. I also had surgery by an ear-nose-throat doctor. I have hiatal hernaia, acid reflux, IBS, Hemerroids, urinary urgency, anxiety, osteoarthritis. Whenever I list all this stuff, I feel sorry for myself so I hate to say it. It makes me face my reality. Newer medications for IBS and urinary urgency are quite expensive. They didn't help that much so for a few days I am trying life without them. I have gotten meat stuck in my esphagus. I believe that was the nutracker esophagus you were describing. I have glaucoma too.

I went to Omaha, NE to get my gastric pacemaker implanted. I live in Kansas and was told of three places closest to me to get one. They were Omaha, St. Louis and Wichita. My insurance did not cover my mileage but the pacemaker has been a God send. I had it implanted in April 2012. My Dr told me not to take Reglan because it can cause Parkinson’s disease. I also got the fundiplication wrap and I wouldn’t advice to get that because I was miserable and he accidentally cut my spleen and it had to be removed. My gastroenterologist recommended these places so maybe find a good Gastroenterologist in your area to help you. Good luck and get better, I did. Kathy