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

@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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no I don’t have it but a dear friend almost certainly does, and I have been trying to help. she has had every sort of test I can think of done due to her crippling condition and nothing else shows up. I told hewr reglan is risky but she has lost so much weight and is malnourished from it. has no other options that they share with her so I came here.

Liked by blackoutthesun

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@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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@pendragonart If she has not tried domperidone I would recommend she try it before reglan. I had to go to a compounding pharmacy for it. It does not have side effects that are permanent like reglan. I have other issues that contribute to me trying to maintain weight and was not causing the problem I had when they tried me on it. Liquids or pureed foods and low fiber also help. If her gastropareis is severe her best option may be the pacemaker.

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@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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she is on reglan. I just told her about the domperidone and pureed foods. she couldn’t go to thanksgiving dinner because of her stomach and bowel issues. she is miserable always feeling like she needs to “go” and cant. yes she is avoiding fiber.

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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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When I first was having problems with my idiopathic gastroparesis they put me on Reglan. My family Dr told me to stop it because it can cause Parkinson’s disease. I’m doing quite well on the pacemaker I’ve had since April 2012.

Liked by Darlia

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@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.

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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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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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@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.

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@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

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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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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

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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?

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

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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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