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.

ken82 | @ken82 | Feb 4, 2020
In reply to @mardar "It's prob all the meds they give you for the fibromyalgia" + (show)
@mardar

It's prob all the meds they give you for the fibromyalgia

Jump to this post

I don't have fibromyalgia.. I don't take any meds for it...I do take the genaric Nexium.. (Magnesium... something)..

REPLY
darlenemeeder | @darlenemeeder | Oct 28, 2020

I am new here and just recently diagnosed with severe gastroparesis. I have had GI issues since I had my gallbladder removed in 2011. Symptoms were mild at first, but gradually got worse. I had an endoscopy and colonoscopy and those did not show anything to warrant my issues. Severe nausea, fullness without eating, no appetite, pains in stomach, side, back, lower intestine, constipation/diarrhea, weakness, exhaustion, no energy. My follow up appointment with GI wasn't for 3 weeks, and I ended up in the ER. The ER doctor ordered, CT scan to check pancreas and liver. That's how he discovered gastroparesis. I have been living on Boost and Powerade. GI doctor ordered the Gastric emptying study and that showed it was Severe. I tried drinking 3 Boost a day, taking 3 hours to drink each one and sipping Powerade throughout the day, about 30 ounces. I haven't had solid food for over 3 months. I have more bad days than good...
Blessings,
Darlene

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 28, 2020

Hello @darlenemeeder and welcome to Mayo Clinic Connect. I'm glad that you found this patient support network. I'm so sorry to hear about your digestive problems. Not having had solid foods in over 3 months is certainly difficult. I'm assuming that you have lost a lot of weight.

We have many Members who deal with this diagnosis. I will invite them to post to you about their experiences, @rossjt, @ken82 and @fourof5zs.

I see that this was diagnosed in the ER. Have you seen a gastroenterologist since that diagnosis? If not, that would be a good next step. There might be meds and a diet plan that could help as well.

REPLY
1 reply
ken82 | @ken82 | Oct 28, 2020
In reply to @darlenemeeder "I am new here and just recently diagnosed with severe gastroparesis. I have had GI issues..." + (show)
@darlenemeeder

I am new here and just recently diagnosed with severe gastroparesis. I have had GI issues since I had my gallbladder removed in 2011. Symptoms were mild at first, but gradually got worse. I had an endoscopy and colonoscopy and those did not show anything to warrant my issues. Severe nausea, fullness without eating, no appetite, pains in stomach, side, back, lower intestine, constipation/diarrhea, weakness, exhaustion, no energy. My follow up appointment with GI wasn't for 3 weeks, and I ended up in the ER. The ER doctor ordered, CT scan to check pancreas and liver. That's how he discovered gastroparesis. I have been living on Boost and Powerade. GI doctor ordered the Gastric emptying study and that showed it was Severe. I tried drinking 3 Boost a day, taking 3 hours to drink each one and sipping Powerade throughout the day, about 30 ounces. I haven't had solid food for over 3 months. I have more bad days than good...
Blessings,
Darlene

Jump to this post

@darlenemeeder ...just a little while ago Oct 28 5:30 Central ..I wrote of my experiences with gastroparesis..Can you look back and find that pile of suggestions..? I cannot drink Boost as it is yogurt like... before gastroparesis I loved yogurt and ate a lot of it.. Did you ever have the stomach emptying test, where you eat the standard meal in a prescribed time and then they check you every hour tracing how that food goes through your body... That work and 2 other tests were done at Mayo MN.. I do drink an Electrolyte liquid (like Pedilyte) to help control the diarrhea.. check the amount of essential salts and minerals in the drink.. get the max..

REPLY
3 replies
darlenemeeder | @darlenemeeder | Oct 28, 2020
In reply to @hopeful33250 "Hello @darlenemeeder and welcome to Mayo Clinic Connect. I'm glad that you found this patient support..." + (show)
@hopeful33250

Hello @darlenemeeder and welcome to Mayo Clinic Connect. I'm glad that you found this patient support network. I'm so sorry to hear about your digestive problems. Not having had solid foods in over 3 months is certainly difficult. I'm assuming that you have lost a lot of weight.

We have many Members who deal with this diagnosis. I will invite them to post to you about their experiences, @rossjt, @ken82 and @fourof5zs.

I see that this was diagnosed in the ER. Have you seen a gastroenterologist since that diagnosis? If not, that would be a good next step. There might be meds and a diet plan that could help as well.

Jump to this post

Thank you. Yes, I have seen my GI guy. He sent me for the Gastric emptying study. He didn't realize how bad I was. I found out what to do, diet wise, on the Mayo Clinic Website for Severe Gastroparesis. That is how I found this group. I have lost 34 pounds in 3 months.

REPLY
darlenemeeder | @darlenemeeder | Oct 28, 2020
In reply to @ken82 "@darlenemeeder ...just a little while ago Oct 28 5:30 Central ..I wrote of my experiences with..." + (show)
@ken82

@darlenemeeder ...just a little while ago Oct 28 5:30 Central ..I wrote of my experiences with gastroparesis..Can you look back and find that pile of suggestions..? I cannot drink Boost as it is yogurt like... before gastroparesis I loved yogurt and ate a lot of it.. Did you ever have the stomach emptying test, where you eat the standard meal in a prescribed time and then they check you every hour tracing how that food goes through your body... That work and 2 other tests were done at Mayo MN.. I do drink an Electrolyte liquid (like Pedilyte) to help control the diarrhea.. check the amount of essential salts and minerals in the drink.. get the max..

Jump to this post

I did have that test. 90% full at 1 hour and 60%full at 2 hours. I drink Powerade and Gatorade.

REPLY
1 reply
darlenemeeder | @darlenemeeder | Oct 28, 2020
In reply to @ken82 "@darlenemeeder ...just a little while ago Oct 28 5:30 Central ..I wrote of my experiences with..." + (show)
@ken82

@darlenemeeder ...just a little while ago Oct 28 5:30 Central ..I wrote of my experiences with gastroparesis..Can you look back and find that pile of suggestions..? I cannot drink Boost as it is yogurt like... before gastroparesis I loved yogurt and ate a lot of it.. Did you ever have the stomach emptying test, where you eat the standard meal in a prescribed time and then they check you every hour tracing how that food goes through your body... That work and 2 other tests were done at Mayo MN.. I do drink an Electrolyte liquid (like Pedilyte) to help control the diarrhea.. check the amount of essential salts and minerals in the drink.. get the max..

Jump to this post

I went and read your post. Thank you. I go see the specialist again on November 2 nd. I was told I had to wait until December. I said I could not wait. I was very ill and needed help. That was yesterday 😉

REPLY
ken82 | @ken82 | Oct 28, 2020

In what state / area do you live... I went to Mayo MN.. the best GI department in the US.. I felt desperate when I had lost all that weight and could not keep anything down... Mayo MN, Phoenix, Jacksonville have Emergency Rooms.. but I have never used them.. Good luck .. Ken

REPLY
1 reply
thull | @thull | Oct 28, 2020
In reply to @darlenemeeder "I did have that test. 90% full at 1 hour and 60%full at 2 hours. I..." + (show)
@darlenemeeder

I did have that test. 90% full at 1 hour and 60%full at 2 hours. I drink Powerade and Gatorade.

Jump to this post

I still had like 40 percent of the egg sandwich in my stomach at 6 hours in. Have to eat very small low residue foods spread out the day. If I eat too much I projectile vomit

REPLY
thull | @thull | Oct 28, 2020
In reply to @ken82 "@darlenemeeder ...just a little while ago Oct 28 5:30 Central ..I wrote of my experiences with..." + (show)
@ken82

@darlenemeeder ...just a little while ago Oct 28 5:30 Central ..I wrote of my experiences with gastroparesis..Can you look back and find that pile of suggestions..? I cannot drink Boost as it is yogurt like... before gastroparesis I loved yogurt and ate a lot of it.. Did you ever have the stomach emptying test, where you eat the standard meal in a prescribed time and then they check you every hour tracing how that food goes through your body... That work and 2 other tests were done at Mayo MN.. I do drink an Electrolyte liquid (like Pedilyte) to help control the diarrhea.. check the amount of essential salts and minerals in the drink.. get the max..

Jump to this post

Boost Breeze is a great drink that is clear. 250 calories and 9 grams of protein per juice box. I was given while inpatient at Mayo Phoenix and was able to order it by the case on Amazon. My favorite was the peach flavor. I was on nothing but clear liquids for over a month due to a bowel blockage. This was my go to

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