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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Has anyone had experience with using the drug Domperidone for chronic nausea?

REPLY

Hi @jacque6977,

As you probably know, Domperidone is not available in the United States, but it is widely used in other countries; for example, whenever I visit family in Bombay, India, Domperidone is what we take for nausea or even queasiness.

Although not for chronic nausea, @emeleen @konagirl have discussed taking Domperidone, for digestive issues, and I hope they will return to share their
experience.

@jacque6977, do you have a specific question regarding this drug?

REPLY
@kanaazpereira

Hi @jacque6977,

As you probably know, Domperidone is not available in the United States, but it is widely used in other countries; for example, whenever I visit family in Bombay, India, Domperidone is what we take for nausea or even queasiness.

Although not for chronic nausea, @emeleen @konagirl have discussed taking Domperidone, for digestive issues, and I hope they will return to share their
experience.

@jacque6977, do you have a specific question regarding this drug?

Jump to this post

For four years the medical profession has been unable to diagnose the cause of my wife's chronic nausea and fatigue. Domperidone is being given to her for a ten day trial. I realize the drug is not available in the US, but it can be purchased in Canada.

REPLY
@kanaazpereira

Hi @jacque6977,

As you probably know, Domperidone is not available in the United States, but it is widely used in other countries; for example, whenever I visit family in Bombay, India, Domperidone is what we take for nausea or even queasiness.

Although not for chronic nausea, @emeleen @konagirl have discussed taking Domperidone, for digestive issues, and I hope they will return to share their
experience.

@jacque6977, do you have a specific question regarding this drug?

Jump to this post

I tried it in 2009 and paid $34.00 month. It was becoming costly with my other medications and not covered under US Health insurances. It did work but my EES works just as well and is covered. A friend of mine "finally" was diagnosed with gastroparesis (felt she had it for years), and was placed on domperidone but shouldn't have. First, it is from Canada (not under our FDA and technically we are not to buy across country lines...even though used in Europe and Canada about 30 yrs and very good) but her cost is $700/month and her friend's at the pharmacy I used, is now up to $500/month she said. My friend is elderly and has a cardiac pacemaker, tears in her aortic arch and congestive heart failure. All "NO's" for domperidone's usage. She did not get a paper with side effects but, her daughters and I looked on the computer and she was shocked. My brother-in-law had 2 pharmacies that compounded it locally for him (they did it for years) but they discontinued doing it. He now obtains it from Canada and does help him a lot like it did for me. I do not remember his cost but I don't believe it was that high. I could be mistaken. The USA should manufacture it.

REPLY
@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

My grandson is only 19 years old and he has this. He takes protonix and watches his diet. I️ was very surprised someone so young has this. Our family has a history of bad stomach problems. Also diabetes. He does not have diabetes.

REPLY
@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 do. I took Propulsid for it for about 3 months before they took it off the market in 2000. It worked well for me. My doctors do no not think I am a good candidate for Reglan. I have a little bit of neurological problem... just a tic. In 2013 I tried Domperidone and I had side effects, but I cannot remember now what they were. After 2 weeks I discontinued them. A gastroenterologist at the Mayo Clinic in Jacksonville FL prescribed the Domperidone for me and I had it filled a local (Albany GA) compounding pharmacy. You might want to try it for a couple of weeks to see if it is for you. It was long ago, but I think they were pricey. If they work it would be worth it. I eat no raw vegetables or fruit except ripe bananas. Too much fiber at one time can slow my stomach emptying more. I eat soft cooked vegetables, and fruits, and tender meats. I had to have gastric bypass to fix a paraesopageal (sliding) hiatal hernia in 2014. My stomach only holds about a cup of food. So I eat about ever 2-3 hours and throw some high calorie cookies in there to get my calorie intake up to maintain weight. I do like those Lorna Doones though. More suggestions on food here: https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792 . I also have achalasia and Barrett's esophagus. I take the generic of Prilosec twice a day.

REPLY
@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

It has been determined that since I have the rare FGFR3 ANTIBODY which is the cause of the Peripheral Neuropathy, it is also the cause of the Gastroparesis since this is caused by the nerves but working properly in the stomach.

REPLY
@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

How did you find that out?

REPLY
@nanny23

How did you find that out?

Jump to this post

@nanny23
They did a gastric emptying study. You eat a small meal, which usually involves eggs and toast.. sometimes they add bacon.. that they put a little radioactive material in so the camera can follow the food as it goes down the digestive track. It has been a few years since I had the test, but think a scanner took a few pictures and then after a certain time a few more pictures were taken.. long enough to sit a while in a waiting room between sessions. An upper endoscooy was done around the same time.. I think a week or so before. There was undigested food found and a small bezoar. With me they do not know what caused me to have gatroparesis.

REPLY
@nanny23

How did you find that out?

Jump to this post

@nanny23 Nanny, at this point I can only add a bit of info. One of the docs who did my endo mentioned that this is common as a side effect of several forms of neuropathy. That is, when whatever you have that will bring neuropathy gets into one of two places, the esophageal valve system or the sensori-control nerve, it can make the valves inoperable or inefficient. There are several disorder which can do this, such as various forms of Amyloidosis such as Crohn's, Multiple Myeloma, Light Chain, Gelsolin, any kind of misfolded protein. Also, of course, diabetes, cancers, simple nodules on the valve system. When they checked me for muscle movement, they found that some of the tubing was not moving quite as it should when I gave the command to swallow, or cough, or whatever. That would probably be the neuropathy, it seems, as I have neuropathy all over my body. Maybe that is why the doc calls me "Psycho".

REPLY
Please sign in or register to post a reply.