1. < Digestive Health

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.

Nanny23 | @nanny23 | Feb 4, 2020
In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)
@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

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

REPLY
israelray | @israelray | Feb 4, 2020
In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)
@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

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.

REPLY
Katmandoo | @katmandoo | Feb 4, 2020
In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)
@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 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

REPLY
1 reply
Darlia | @darlia | Feb 4, 2020
In reply to @katmandoo "I have idiopathic gastroparesis and don't have diabetes. I tried Reglan and didn't work plus my..." + (show)
@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

Jump to this post

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

REPLY
Katmandoo | @katmandoo | Feb 4, 2020
In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)
@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

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.

REPLY
1 reply
Darlia | @darlia | Feb 4, 2020
In reply to @katmandoo "Yes I had the Botox done 3 times before it quit working for me. It would..." + (show)
@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.

Jump to this post

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

REPLY
Darlia | @darlia | Feb 4, 2020
In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)
@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

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

REPLY
Katmandoo | @katmandoo | Feb 4, 2020
In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)
@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 recommend the pacemaker.

REPLY
pendragonart | @pendragonart | Feb 4, 2020
In reply to @darlia "Looking for suggestions on diet, alternative treatments, etc that are being used by others. I cannot..." + (show)
@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

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.

REPLY
6 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 4, 2020
In reply to @pendragonart "a friend has it and doesn't have diabetes. she is on reglan. she already had depression..." + (show)
@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.

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.