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.

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ken82 | @ken82 | Mar 29, 2021

In reply to @brandywine8875 "That's very good advice. Should I even go to the Mayo clinic? Is it a waste..." + (show)

@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

ZeeGee | @fourof5zs | Mar 29, 2021

In reply to @1950 "What is domperidone?" + (show)

@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

Mary @1950 | @1950 | Mar 29, 2021

In reply to @fourof5zs "@1950 Domperidone is a medication to help the stomach empty. It had too many side effects..." + (show)

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

pdilly | @pdilly | Mar 30, 2021

In reply to @1950 "What is domperidone?" + (show)

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.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 30, 2021

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

ken82 | @ken82 | Mar 30, 2021

@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.

pdilly | @pdilly | Mar 30, 2021

In reply to @ken82 "@pdilly @1950 @fourof5zs ... When the local GI doc told me about that drug (Domperidone) that..." + (show)

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!

rashida | @rashida | Mar 31, 2021

In reply to @1950 "What is domperidone?" + (show)

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

rashida | @rashida | Mar 31, 2021

In reply to @pdilly "Thank you for the article @ken82. My gastroenterologist thoroughly researched domperidone before putting me on it...." + (show)

@pdilly Domperidone is available in Canada in prescription. I have had no ill effects or interactions with it. I used to take it at bed time any night I had had a heavy meal but for the past few years I have stopped eating from 9:00 p.m. through the night so I have not needed it.