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Darlia
@darlia

Posts: 133
Joined: Jul 21, 2017

Does anyone else have Gastroparesis not caused by diabetes?

Posted by @darlia, Nov 9, 2017

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

REPLY

@pendragonart

a friend has it and doesn’t have diabetes. she is on reglan. she already had depression before starting it. I am trying to help with diet etc.

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I think there are many good ideas in this discussion that she should talk over with her doctor. It sounds like her problem is severe. The pacemaker may be a better option for her. It may depend on what other digestive problems she has.. and it sounds like she may have more than gastroparesis (I have no medical training.. I’m just guessing). I deal with 4 digestive diseases myself and many in this group deal with more. Finding a diet that works all the time is impossible. There are bouts of constipation and diarrhea. I wish her the best and pray she finds help soon.

Yes it can. I was on it many years and started having 6 months of terrible shaking, and almost the inability of writing my name. Then .a black box warning just came out stating the severe side effects you mentioned and that they may be permanent. I tried domperidone from Canada which helped but then used the erythromycin that my insurance paid for (125 mg 4 times a day as a prokinetic—stomach contraction). I was lucky that all the shakiness abated but took many months. It is very serious. AS a nurse, we used to use it on infants who had reflux. I never knew it had such severe side effects and like I said, I took it at least 6 or 7 years before it became so bad. NEVER again! Tardive dyskinesia is a horrible side effect that I have had patients with and I thank God I did not get that. The uncontrollable shakiness was enough. It almost was to the point I had to sign an X. My neurologist was so thorough always reviewing all my medicines and was the one who found the NEW alert!

@jlfisher56

Yes it can. I was on it many years and started having 6 months of terrible shaking, and almost the inability of writing my name. Then .a black box warning just came out stating the severe side effects you mentioned and that they may be permanent. I tried domperidone from Canada which helped but then used the erythromycin that my insurance paid for (125 mg 4 times a day as a prokinetic—stomach contraction). I was lucky that all the shakiness abated but took many months. It is very serious. AS a nurse, we used to use it on infants who had reflux. I never knew it had such severe side effects and like I said, I took it at least 6 or 7 years before it became so bad. NEVER again! Tardive dyskinesia is a horrible side effect that I have had patients with and I thank God I did not get that. The uncontrollable shakiness was enough. It almost was to the point I had to sign an X. My neurologist was so thorough always reviewing all my medicines and was the one who found the NEW alert!

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with domperidone, CHF is not to be used by the way! Just a side note. A friend of mine is using it and has CHF and a pacemaker but the alert states not to use if heart failure. That is the problem with some of our doctors and getting medicine from Canada. She is paying $800/month and a friend told her of another pharmacy for $500/month. Erythromycin is an antibiotic that used in a low dose is a prokinetic,,,contracts the stomach muscle. Best of luck.

@fourof5zs

I eat several small meals a day, but sometimes the food just sits in my stomach. A walk usually helps. I also gently massage my stomach to help stimulate it. I lay a microwavable heating pad on my stomach when it gets painful and do more gentle massaging. My doctors advise me not to take reglan. I tried the domperidone (may not be spelled correctly) and I had several side effects and it was no help for me. Propulsid did work, but it went off market shortly after I started taking it. What works for one person may not work for another. Sometimes you deal with several differrent conditions and it makes it difficult to figure out what will work for you or your loved one.

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botox worked great for my gastroparesis. I had it down to the lower sphincter in the stomach and that way, when the food gets there, a hole is always open allowing it to enter the small intestine. Botox is injected into 3 small areas of the muscle. With stomach contracting so slow, by the time the food reaches the bottom, the muscle is closed. Food can collect and “rot” causing infection. Botox keeps the muscle slightly open allowing food to exit in small amounts preventing this. I had it done January 2014. The daily nausea and vomiting are gone and excessive weight loss. I still have limited foods I can eat but NO pacemaker. Botox is still working and is a blessing. I use liquid erythromycin (granules) to make my stomach contract and eat small meals. My vitamins are gummies or chewables and foods must be easily digestible. Breads have to be white (refined) nothing that takes long to digest causing further problems. A wonderful dietician helped me. I am not diabetic and it was caused by medications. As an RN, I never had encountered it. My case was/is severe. The botox really saved me. Best of luck! Joan

Liked by Darlia

Hi All:

I have been reading with interest your discussions on gastroparesis. I have had 3 surgeries of the upper digestive tract and 2 of the surgeries were invasive. Since the second surgery, I certainly have a lot of the symptoms of gastroparesis, with feeling full quite quickly and feeling nauseous if I go beyond the full feeling. I noticed that some of you have mentioned walking after eating and I realized that exercise was probably a good idea. As a result, I “Googled” exercises for gastroparesis and found some very interesting, easy to do exercises that don’t require walking outside. These are to be done after you eat. I’ve tried both of them and could notice feeling better without so much of that bloated, full feeling. I just wanted to share it with you in case you would like an alternative treatment.

Here is the link, http://www.diabetes-book.com/exercises-facilitate-stomach-emptying/.

Have anyone tried other exercises after meals? If so, will you share your experiences?

Teresa

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!

@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?

Liked by blackoutthesun

Please see my response below. peck1944

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

@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

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!

Liked by 0530

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

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.

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***

@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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