Looking for answers to help with gastroparesis

Perhaps we can all pray for relief for one another. Until medicine catches up with our IBS or other serious stomach there is limited options. My heart goes out to all who are suffering pain today.

I have idiopathic gastroparesis and don't have diabetes. I tried Reglan and didn't work plus my Dr told me to stop it because it can cause Parkinson's. I had a gastric pacemaker implanted in my stomach which has leads that go directly into my stomach to stimulate it so I can eat and the food will digest. I have to eat several small meals and avoid raw vegetables, fruit, nuts and high fiber. Also only eat chicken, fish and hamburger. I have had the pacemaker since April 2012 and it's a life saver. Hopes this helps you. Kathy

Yes I had the Botox done 3 times before it quit working for me. It would last about 4-5 months. The last one didn't work at all that's why I got the gastric pacemaker implanted in my stomach.

Wow! I thought it was a brand new treatment. Now I'm wondering why the dr's didn't suggest it prior.

When you did use the botox treatment I am wondering about that.
1. Are there any side effects?
2. Complications or issues later on?
3. Does the botox make it so you no longer have a. Acid reflux b. Regurgitation c. Can you eat more variety?
4. Does the Pace maker make it so you're eating more"normal"? And are there any problems with the pacemaker?
Thank you!!
Darlia

I recommend the pacemaker.

Welcome to Connect, @pendragonart. We look forward to getting to know you. Do you have gastroparesis?

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 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***

I got gastroparesis after hiatal hernia repair surgery. I believe the vagus nerve was damaged during surgery. I understand that acupunture can be helpful. I haven't tried it but I plan to. I still struggle every day with nausea and gas pains. Some days are better than others. I take Zolfran for nausea and sometimes it works quite well and other times not so much.