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

@nanny23

How did you find that out?

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I do not believe that FGFR3 is caused by an autoimmune disorder. However, I DO have autoimmune disorders separate from the Peripheral Neuropathy.

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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 @darlia,

We have several discussions about gastroparesis which you may wish to view:

– Does anyone else out there have gastroparesis? https://connect.mayoclinic.org/discussion/hi-all-does-anyone-else-out-there-have-gastroparesis/
– GERD, gastroparesis, neurogenic bowel https://connect.mayoclinic.org/discussion/gerd-gastroparesis-neurogenic-bowel/
– Failed Nissen w/gastroparesis & possible MALs https://connect.mayoclinic.org/discussion/failed-nissen-wgastroparesis-possible-mals/

I’d like to invite @katmandoo @citygirlannie @faycarole @clemlaa @debnjay @galy @jlfisher56 @robatk17, to join this discussion and share their insights as well.

The Mayo Clinic link provided by @fourof5zs above, (thank you!) also has some great information about ongoing research and studies to investigate new medications to treat gastroparesis.

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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 idiopathic gastroparesis and am pre diabetic.

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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 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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@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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So sorry you are not well. I have many stomach problems too and nothing seems to work for me

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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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Perhaps we can all pray for relief for one another. Until medicine catches up with our IBS or other serious stomach there is limited options. My heart goes out to all who are suffering pain today.

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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 idiopathic gastroparesis and don’t have diabetes. I tried Reglan and didn’t work plus my Dr told me to stop it because it can cause Parkinson’s. I had a gastric pacemaker implanted in my stomach which has leads that go directly into my stomach to stimulate it so I can eat and the food will digest. I have to eat several small meals and avoid raw vegetables, fruit, nuts and high fiber. Also only eat chicken, fish and hamburger. I have had the pacemaker since April 2012 and it’s a life saver. Hopes this helps you. Kathy

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@katmandoo

I have idiopathic gastroparesis and don’t have diabetes. I tried Reglan and didn’t work plus my Dr told me to stop it because it can cause Parkinson’s. I had a gastric pacemaker implanted in my stomach which has leads that go directly into my stomach to stimulate it so I can eat and the food will digest. I have to eat several small meals and avoid raw vegetables, fruit, nuts and high fiber. Also only eat chicken, fish and hamburger. I have had the pacemaker since April 2012 and it’s a life saver. Hopes this helps you. Kathy

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I’m glad to hear that the pacemaker is successful. I m not to that point YET! But I did take Raglan from 2007 till 2010 approx. It contributed to clinical severe depression and I weaned off in 2010 when a friend who also has Gastroparesis educated me that she’d read that Raglan could CAUSE depression. She said she would continue to try to control it with diet. So since 2010 I’ve struggled with it and attempting to use diet as the only control.
I don’t always succeed.
Recently now I saw a new Gastroenterologist and she seems very educated on it. She is suggesting an Endoscopy at which time she would inject Botox to open up the sphincter and cause the food to empty quicker. Has anyone else ever heard of this or had it done?
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

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Yes I had the Botox done 3 times before it quit working for me. It would last about 4-5 months. The last one didn’t work at all that’s why I got the gastric pacemaker implanted in my stomach.

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@katmandoo

Yes I had the Botox done 3 times before it quit working for me. It would last about 4-5 months. The last one didn’t work at all that’s why I got the gastric pacemaker implanted in my stomach.

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Wow! I thought it was a brand new treatment. Now I’m wondering why the dr’s didn’t suggest it prior.

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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 you did use the botox treatment I am wondering about that.
1. Are there any side effects?
2. Complications or issues later on?
3. Does the botox make it so you no longer have a. Acid reflux b. Regurgitation c. Can you eat more variety?
4. Does the Pace maker make it so you’re eating more”normal”? And are there any problems with the pacemaker?
Thank you!!
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

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I recommend the pacemaker.

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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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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

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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Welcome to Connect, @pendragonart. We look forward to getting to know you. Do you have gastroparesis?

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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 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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