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

@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

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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

Jump to this post

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***

Jump to this post

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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@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 have gastroparesis not caused from diabetes. I also have lower extremity neuropathy. If anyone like myself is having chronic nausea with no relief go look up (Marinol.) It is synthetic THC and it works very well. I has a little "pot like" buzz the first time i took it and thankfully that went away. It was originally used on nausea caused from chemotherapy.

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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

Hello Darla, Thank you for the feedback. I agree depending on the day what I eat may or may not agree with my stomach. I found it strange they requested another study although the two I had shows my GP to worsen. I use smoothies and tea as well. I have just started using dementia and Black Walnut natural herbs. I am always trying different combinations of things. Sometimes I can due tuna and crackers but once my body seems to become immune to something after while it rejects. Everyday is a challenge, but I refuse to sink so I must keep SWIMMING.

REPLY
@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***

Jump to this post

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?

Liked by blackoutthesun

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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***

Jump to this post

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.

REPLY
@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***

Jump to this post

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

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@aishia

Hello Darla, Thank you for the feedback. I agree depending on the day what I eat may or may not agree with my stomach. I found it strange they requested another study although the two I had shows my GP to worsen. I use smoothies and tea as well. I have just started using dementia and Black Walnut natural herbs. I am always trying different combinations of things. Sometimes I can due tuna and crackers but once my body seems to become immune to something after while it rejects. Everyday is a challenge, but I refuse to sink so I must keep SWIMMING.

Jump to this post

Wow that sounds exactly like the same thing I'm going through and have been going through since childhood! I've multiple spinal injuries including scoliosis and severe anxiety, a little bit depressed but mainly because of the chronic pain. Also I was pushed out of a moving car at the age of 1, luckily we were turning a corner. I suffered a very minor head trauma concussion and was sent home. It was so minor that even my father doesn't know about it. My mother and my grandmother died due to esophageal issues but when my grandmother died in 1999 they said she had rare growths in her lungs. In 2010 when my mother died, at the age of 58, they said the same thing about her at first but she ended up with necrotizing pneumonia and died 1 week later. I've also been very emotional since childhood and my pupils get large especially when I was a child. I also have fibromyalgia. My current psych doc ordered me to go to counseling, I had several traumatic things that happened to me since early childhood. Another psych doctor several years ago asked if I had head trauma as a baby because I had a seizure at age 25 due to orthostatic hypotension. He said people in their mid-20s reported having seizures after head trauma as a baby. I have Bodelekies (wrong spelling, another so-called rare disease) hiatal hernia and according to my research it's from blunt trauma and neurological issues. Almost everything, I've read here, I have including dehydration and I drink lots of water! I'm heading out today to get blood work. Thank you so much @aishia @katmandoo @maureercria and anyone else I may have missed I will post my future results.

Liked by Darlia

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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 have scoliosis and anxiety too. I don't know of trauma to my body, but the doctor induced my mother's labor and later said he guessed wrong on my due date. I was born at least one month early and had no eyelashes or fingernails and my digestive system and breathing had trouble because they were not mature for birth yet. My mother said she had to keep sticking her finger down my throat when I was a baby and she'd pull out flem so I wouldn't choke to death. I took pills for anxiety for quite a while and they didn't seem to help and they slowed my reactions and I had some car accidents so I won't take them any more. I haven't had any more car accidents since I stopped taking them.

Liked by blackoutthesun

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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

One more thing I've learned with nutcracker, the main procedure that seems to be working is POEM, can't remember what those letters stand for but I've a tiny Facebook group about 55 people so… I'm also narcissistic

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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

One more thing LOL I'm also OCD and narcissistic, it says narcissism is rare but it's not so rare anymore

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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 just seen this on Facebook from a good friend of mine, modern technology has just reached a much higher level! My chest is hurting so rubbing Icy Hot on it and hope that I sleep more than 4 or 5 hours. I've taken my meds so… I hope this helps! @kanaazpereira
https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787

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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

Let us know how that goes for you.

Liked by blackoutthesun

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