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.

@pdilly

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!

Jump to this post

@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.

REPLY
@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

Jump to this post

Please let us know what you find out at Mayo.

REPLY
@astaingegerdm

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

Jump to this post

Too many interactions with my MCTD drugs.

REPLY
@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.

Jump to this post

Thanks for the info!!

REPLY
@rashida

@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.

Jump to this post

Yes! I get it from Canada too. I take it in the morning and at bedtime — have been on it for about 2 years now and no more monsters in my belly! (I had a bezoar one time – I hate to say that word!)

REPLY
@fourof5zs

@pdilly @annieoh ,

I tried domperidone in 2013 and I had several side effects.. I don't remember what they were now and not sure where the paper is I wrote them on. I got the prescription from a doctor at the Mayo in Jacksonville. I had it filled at a local compounding pharmacy. My insurance did not pay for it and I don't remember the cost. Worth checking at local compounding pharmacy for first try.. I got two week's worth. I think I made it a week and a half before I said I'd rather put up with the disease than the medication. It works for many people though.

Jump to this post

I am going to mayo in Jacksonville next month to see Dr. lacy he is supposed to be one of the best GI's in the country. I was just researching domperidone and it says it is no longer available in the US. That's crazy, if it works that well then why can't they make it in the US and how would we get it?

REPLY
@brandywine8875

I am going to mayo in Jacksonville next month to see Dr. lacy he is supposed to be one of the best GI's in the country. I was just researching domperidone and it says it is no longer available in the US. That's crazy, if it works that well then why can't they make it in the US and how would we get it?

Jump to this post

@brandywine .. terrible but I cannot remember the gastroenterologist's name I saw back in 2013 when was prescribed domperidone. I am now under the car of Dr Frances and her NP Lois Hemminger. .. my local GI refused to do endoscopies on me because my surgery repair was so extensive… he still does my colonoscopies. I'm glad to have a doctor admit that something is out of his league.

When I was prescribed domperidone I was told which compounding pharmacy to take it to in my town. You might call a compounding pharmacy to see if they compound it. I am including a link to the fda site that says this this information was accurate up until February this year… I would think if it had changed since then they would alter the information.

I think.. but not positive.. for a two week supply back then it was around $40. .. probably increased a lot since 2013. We had Tricare Standard then and it did not pay anything that I recall. My husband is retired Army. Now that we are Seniors we have Tricare for Life and Medicare. .. still probably no payment for the medication.
https://www.fda.gov/drugs/investigational-new-drug-ind-application/how-request-domperidone-expanded-access-use

REPLY
Please sign in or register to post a reply.