Anyone diagnosed with Gastroparesis?

Posted by jlfisher56 @jlfisher56, May 7, 2017

I have had problems similar to so many GI people. The swallowing problems (food stuck in the throat, bloating, nausea, feeling like choking, "fullness" for hours). Finally after many upper and lower scopes ( have 18 cm colon left and function 80% well when cervical neck is well), a small hiatal hernia, numerous different PPI's for stomach changes, reflux, etc. and now on Nexium, the finding out the main problem 6 years ago was gastroparesis caused by a pain medication. Instead of a pacemaker, I tried a "newly" approved drug for the pyloric muscle of the lower stomach, botox, placed in 3 places to keep the muscle open a little so food could continually be released into the small intestine. The erythromycin in a low dose is a prokinetic, making the nerves contract the stomach muscles but, wasn't working. Still use 4x/day. This way no food collected in the stomach being able to "rot" causing sepsis, and decreased daily nausea and vomiting. I still can only eat small amounts and is more liquid or soft medicine/foods. My appetite isn't the best. I often have reflux, bloating, constipation and hoarseness. But it has been 3 yrs since botox to my stomach and it is working. I take my blessing where I can. I hope this helpe others.
Also, my diet had to change to rapidly digesting foods like white bread and not the "good" eating I was doing like whole wheat or 21 grain bread ( was laying on my stomach for hours), plus many vegetables and also many raw vegetables...a no no.
My daughter is going through so much of this and is an RN. Has Barrett's esophagitis, hiatal hernia, dysplasia, leaky gut syndrome i.e. and awaiting biopsies. Constant n/v, bloating,hoarseness, food in the throat like you in the chat.She is also an RN. On many "new" meds again.
It really can get to you especially when you work and have a very busy life like she does.
My best to all. Hope I could help someone.I understand your frustrations. It is wonderful having an understanding doctor that listens!

Joan

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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I have gastroparesis after hiatal hernia repair surgery (nissen fundaplication). I take zolfran as needed for the stomach pain. I also get some relief from gasX. I am very careful about my diet. I avoid any raw fruit or vegetables. I also try to eat a low fat and low fiber diet. I have low energy and depression as a result of this disease. It has changed my life. I used to travel extensively but now I am limited because of dietary needs. I have learned to live with this but it is a challenge!

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@citygirlannie

I was told I had gastroparesis after I had surgery for a hiatial hernia operation 3 years ago. I have taken too many medications to count. I've also tried every diet with no success. I was told my vegas nerve was damaged so my digestive system no longer works. I have learned to live with it. I have lost a lot of weight and I have no strength left. I hope you have better luck.

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Have you pursued medical malpractice against the surgeon?

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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Please see my response below. peck1944

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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I wished I had never had the nissen fundiplication done when I had my gastric pacemaker implanted for my idiopathic gastroparesis. I was miserable afterwards plus he accidentally cut my spleen and couldn’t get it to quit bleeding so had to take it out. I wouldn’t recommend the nissen fundiplication to anyone. Kathy

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@katmandoo

I wished I had never had the nissen fundiplication done when I had my gastric pacemaker implanted for my idiopathic gastroparesis. I was miserable afterwards plus he accidentally cut my spleen and couldn’t get it to quit bleeding so had to take it out. I wouldn’t recommend the nissen fundiplication to anyone. Kathy

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Kathy, 3 years ago I had a hiatal hernia operation. At that time my vagas nerve was damaged so my digestive does not work anymore. At the same time I had a fundoplication and now I have heartburn and have to take Nexium every day. I wonder if you could tell me about the gastric pacemaker you had implanted. Could it help with my digestion? Ann

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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I was diagnosed with Gastroparesis which is not related to diabetes and it is not clear what causes it. I also was offered that horrible drug and declined it. I tried many fermented foods (that helped a little) and always questioned the doctors if I have a low acidity in my stomach. To my surprise they couldn't test it and actually were prescribing me medication to lower the stomach acid. Since I was feeling worse after prilosec and similar drugs, I started to do different home tests to see if my stomach acid is insufficient. Turns out - it is. Some people are just born with it, and some people acquire this disease as we age. Then I found this mineral water Mineral Water Essentuki No. 17. Make sure to take Essentuki No. 17 and not No. 4. I drink a few sips of it 30-40 minutes before food intake. So I go through less than 0.5 L bottle per day. I can not believe how much my symptoms improved. Not bloated anymore. Still have some air pushing out (belching) but pain is also mostly gone. One thing - I lost 15 pounds when I started this water and I was in normal weight. Probably because the food started to move faster. I am so happy I finally found what helps me after 2+ years of suffering. Try it. You can find it online. Good Luck!

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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I am 52 and have idiopathic gastroparesis. It was confirmed with gastric emptying test in 2015. I don't vomit, but the nausea is moderate to severe. Zofran, nor phenergan was helping anymore. I was put on marinol and i now have relief from the nausea. Finally, but marinol takes some getting use to as it is synthetic Thc. It gives you a (high) feeling, but your body adjust to it. I use either protonix, NEXIUM, or dexillant for my reflux and the occasional zantac 300mg if breakthrough reflux occurs

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

Jump to this post

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.

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@darlia

Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot use the Reglan as it is a bad drug in my opinion. I can tell you that it caused me to go into major depression in 2008

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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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@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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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

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