Badgut RN: Looking for answers to help with gastroparesis   

Posted by mariesgut @mariesgut, May 13, 2020

Have gastroparesis 8 months or so now. This is a horrible thing to have. Not really a disease or syndrome but a gut malfunction. The vagel nerve does not allow food to leave the stomach in a timely manner. Feel like food in stomach after 10-12 hours. Not eaten a steak in 4 years. Last time I had a small one felt like it did not digest for 2 days. Found out why last year. Constant bloating sometimes as soon as I eat & sometime mid abdomen rock hard. Taking assortment of antacids daily. Loss of appetite, start to eat & get full quickly, abdominal pain minimal to severe at times. Lots of nausea, reflux when I lay down which causes more nausea. Not sleeping much because of this. Vomiting more in April 5 times + which I was not doing. Dr ordered Protonix, & on it over a year now. Not sure it helps. Diet is supposed to be low fat, low fiber so hardly eating any fruits or veggies. Salads really cause pain so don’t eat them at all. Now severe constipation last 2-3 weeks. Is there no end to this process? Lately barely getting in 1000 calories/day. Last 2 weeks barely 450-800 calories/day. Weight up 10# after loosing 50 the last 2 years.[I was trying to lose weight then.] Read where bod can revert to starvation mode & pack on fat. Holy cow. I am a RN & can’t help myself. Gastro Dr not sure either. Ordered Linzess for constipation Monday but copay $131.00 for 90 pills/90 days lowest dose. Cannot afford that so cancelled med. Was taking senna, Dr told me Miralax 2x/day. Really no other meds for this.Have gen. Zofran for nausea, helps a lot, but sometimes nausea comes on & boom, to bathroom to vomit. Dr states not much help for this syndrome at present. OMG I am miserable everyday after I eat. Worry at night about what to eat the next day. Not what I eat anymore it is when I eat. Everything bothers my gut. Dr want to do another upper scope. Did one last year & found severe redness from acid production. Went in to see him after & told him again I did not feel my gut was emptying. Told him that on the 1st appointment. Finally he ordered the gastric emptying scan after I told him I needed one. Ordered labs Monday & all normal. I am doing a lot of fruit smoothies made a with meal replacement drinks, honey & frozen or fresh fruit. Ordered high protein Ensure this week to get more protein in. Not eating much meat. If anyone knows someone or something that can help with gastroparesis please let me know. I am a desperate RN Used to help others for 42 years, now cannot help myself. Thanks if you read this. I pray for others with this.

Hello,
I feel for you. I'm going through the same thing for years I have been hospitalized, multiple surgeries on my stomach and colon with no answers.
I was diagnosed 2 weeks ago.
I do exactly the same things as you. I vomit after every meal and my food just sits on my stomach and ferments, then I get extremely nauseas.
I had a gastric emptying study by they couldn't complete it bc I threw up the oatmeal.
I have had 15 colonoscopies, 8 endoscopies all in the last 2 years.
I'm am being sent to the Mayo clinic to see what they can do.
Please reply back to me..
Thanks

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@brandywine8875

Hello,
I feel for you. I'm going through the same thing for years I have been hospitalized, multiple surgeries on my stomach and colon with no answers.
I was diagnosed 2 weeks ago.
I do exactly the same things as you. I vomit after every meal and my food just sits on my stomach and ferments, then I get extremely nauseas.
I had a gastric emptying study by they couldn't complete it bc I threw up the oatmeal.
I have had 15 colonoscopies, 8 endoscopies all in the last 2 years.
I'm am being sent to the Mayo clinic to see what they can do.
Please reply back to me..
Thanks

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@brandywine8875 Mayo MN diagnosed my post operative gastroparesis the 1st day there.. so as not to vomit every meal ..I told the GI doc there of my selective vomiting.. I had eaten a small bit of chicken, then broccoli… the chicken stayed down.. the broccoli came up… Dr. Halland said that I would not have to eat broccoli again.. cut back on the quantity a lot.. It may take an hour or more just to eat breakfast… and so on.. have vitamin and protein rich snacks that are small.. Gravity needs to act on the food in your stomach … so after eating stay vertical.. walk about..

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That's very good advice. Should I even go to the Mayo clinic? Is it a waste of time?

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@pdilly

@1950 i don’t know what MCTD is – but I do have Gastroparesis. Here’s part of what I posted on this thread a while back:
5. After much trial and error, I now eat at least 6 times a day – more like snacks than meals. I eat slowly and chew every thing down to nothing before swallowing.
6. I do not eat FIBROUS foods. (At first I avoided all fiber. But when my doc gave me the go ahead to try adding quick oats and iceberg lettuce to my diet, I started trying more things.)
7. This is my definition of whether or not a food is FIBROUS: If I can chew and chew and it almost turns to liquid in my mouth, it is not FIBROUS and I will eat it. However if I chew and chew and it still there is still texture in my mouth, it is FIBROUS and I do not eat it.
8. I steam the hell out of vegetables so that they melt in my mouth – Brussels sprouts for example. (I love broccoli too but no matter how long I steam it, it remains too fibrous for me to eat.)
9. I take domperidone twice a day. My prescription says to take it 4 times a day but I only take it twice a day. (I call domperidone my illegal drug from Canada!)
10. I take a probiotic twice a day.

I used to have a problem with constipation and took colace twice a day. But since I figured out I can eat foods high in fiber as long as they are not fibrous, that problem stopped.

I used to have a problem with sudden severe stomach pain with simultaneous diarrhea and vomiting. But since my gall bladder was removed, that problem stopped. (I will forever be thankful to the doc who decided to test my gall bladder function! Usually test results of 35 or greater indicate normal function. But my result of 93 was crazy high and not normal at all! Gall bladder removed! Life improved!)

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What is domperidone?

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@brandywine8875

That's very good advice. Should I even go to the Mayo clinic? Is it a waste of time?

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@brandywine8875 I went to Mayo MN … My Medicare and Gap insurance paid for it.. My local GP referred me.. Yes, the time and effort was really worth it.. the Local (fairly big Clinic with over 100 doctors) couldn't do diagnose it.. and when they started to prescribe Non-FDA approved drugs I would have to get in Canada or Europe…. that was enough for me.. I had lost 50#… and I was slender and trim to begin with.. I have been to Mayo MN since for Kidney Stones, Urology, GI, Prostate Cancer and Hearing… All were conclusive trips that settled the Issues.. Ken

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@1950

What is domperidone?

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@1950 Domperidone is a medication to help the stomach empty. It had too many side effects for me, but is worth a try. It helps many people. I had my prescription filled at a local compounding pharmacy… I live in a small town. I cannot remember the cost.. it was several years ago. I only got two week's worth to try. Here is more in-depth about the drug. https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/side-effects/drg-20063481?p=1

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@fourof5zs

@1950 Domperidone is a medication to help the stomach empty. It had too many side effects for me, but is worth a try. It helps many people. I had my prescription filled at a local compounding pharmacy… I live in a small town. I cannot remember the cost.. it was several years ago. I only got two week's worth to try. Here is more in-depth about the drug. https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/side-effects/drg-20063481?p=1

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Thanks for the info! A couple drugs I take are on the do not go with list.

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@1950

What is domperidone?

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Domperidone is what I call my illegal drug from Canada! It helps with stomach emptying. It’s worked wonderfully for me. I take one in the morning and one at bedtime. It costs about $90 for 200 tablets.

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Domperidone has too many side effects, warnings and interactions with other drugs for me to be comfortable taking it – arrhythmias specifically.

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@pdilly @1950 @fourof5zs … When the local GI doc told me about that drug (Domperidone) that was not FDA approved, I first called a friend who was a radiologist in Sweden.. she said, "don't take that"… so I asked my Primary Care Physician to refer me to Mayo MN… That was a life changing day in my life.. 6 years ago and now doing pretty good even though I am 84..
"Domperidone has been banned in the United States for years because of fatal cardiac arrhythmias among cancer patients who had been prescribed the drug to prevent nausea and vomiting. … "Unfortunately the different uses of the medication have been tied into the one outcome – fatal cardiac arrhythmia." Nov 11, 2014..
https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/side-effects/drg-20063481?p=1#:~:text=Domperidone%20is%20a%20medicine%20that,immediate%20supervision%20of%20your%20doctor.

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@ken82

@pdilly @1950 @fourof5zs … When the local GI doc told me about that drug (Domperidone) that was not FDA approved, I first called a friend who was a radiologist in Sweden.. she said, "don't take that"… so I asked my Primary Care Physician to refer me to Mayo MN… That was a life changing day in my life.. 6 years ago and now doing pretty good even though I am 84..
"Domperidone has been banned in the United States for years because of fatal cardiac arrhythmias among cancer patients who had been prescribed the drug to prevent nausea and vomiting. … "Unfortunately the different uses of the medication have been tied into the one outcome – fatal cardiac arrhythmia." Nov 11, 2014..
https://www.mayoclinic.org/drugs-supplements/domperidone-oral-route/side-effects/drg-20063481?p=1#:~:text=Domperidone%20is%20a%20medicine%20that,immediate%20supervision%20of%20your%20doctor.

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Thank you for the article @ken82. My gastroenterologist thoroughly researched domperidone before putting me on it. He also had me make an appointment with a cardiologist to make sure he approved as well before giving me the prescription. (I don’t have any heart issues.)

Here is the statement from the FDA website about why they issued a warning about domperidone in 2004 — “FDA took this action because of the concern about the potential serious health risks associated with the use of domperidone by lactating women to enhance breast milk production.” That’s definitely not an issue for me as I approach age 70 — lol.

Since it has helped me so much with stomach emptying with no side effects, I’m very comfortable taking it. It’s also comforting to know that it’s available throughout the rest of the world — appears that only the USA has not approved it. In some countries it requires a prescription but in most countries it’s over the counter.

What is the source of the 2 quotations you shared. They weren’t included in the Mayo Clinic link so I just wanted to read more about those statements made November 11, 2014. Thanks!

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@1950

What is domperidone?

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@1950 Domperidone is a prescription motility aid drug to help move the food from stomach into the intestine faster.

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