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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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Mary @1950 | @1950 | Mar 31, 2021
In reply to @astaingegerdm "Domperidone has too many side effects, warnings and interactions with other drugs for me to be..." + (show)
@astaingegerdm

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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Too many interactions with my MCTD drugs.

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Mary @1950 | @1950 | Mar 31, 2021
In reply to @ken82 "@pdilly @1950 @fourof5zs ... When the local GI doc told me about that drug (Domperidone) that..." + (show)
@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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Thanks for the info!!

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pdilly | @pdilly | Mar 31, 2021
In reply to @rashida "@pdilly Domperidone is available in Canada in prescription. I have had no ill effects or interactions..." + (show)
@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.

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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!)

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brandywine8875 | @brandywine8875 | Apr 1, 2021
In reply to @fourof5zs "@pdilly @annieoh , I tried domperidone in 2013 and I had several side effects.. I don't..." + (show)
@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.

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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?

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1 reply
ZeeGee | @fourof5zs | Apr 1, 2021
In reply to @brandywine8875 "I am going to mayo in Jacksonville next month to see Dr. lacy he is supposed..." + (show)
@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?

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@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

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playball | @playball | Jan 30, 2023
In reply to @annieoh "So ulcers solutions anyone? Carafate & rabeprazole not working." + (show)
@annieoh

So ulcers solutions anyone? Carafate & rabeprazole not working.

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Manuka Honey

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1 reply
shellr61 | @shellr61 | May 17, 2023

I am an RN and have been trying to self diagnose and treat my abdominal bloating, nausea and discomfort for months. Eating small, low fiber meals frequently and Zofran as needed. I recently failed a gastric emptying study which indicated gastroparesis. Colonoscopy yesterday was clean. I am still uncomfortable after eating small amounts of food but gaining weight as my activity level has decreased due to fatigue. Iam not diabetic. I have a SIBO test to complete this week but Iam getting so frustrated and feeling like I’m pregnant every day due to distention. I am 61 years old and my kids are grown.
I did have a serious event with Solanine/nightshade poisoning from a Chinese Lantern plant and ended up unconscious and awakened while in a CT scanner after paramedics brought
Me to local ED. Could there be some correlation between this ? I did see a naturopath after the poisoning event and she said the poison could remain in intestines for years to come… I did have a colonic or washing of the colon after the event but what about my small intestinal tract ?
Just working on trying to feel like myself again as I am a busy RN and want to continue working.
Any and all thoughts are appreciated.

REPLY
2 replies
Phil | @dover1036 | May 18, 2023
In reply to @shellr61 "I am an RN and have been trying to self diagnose and treat my abdominal bloating,..." + (show)
@shellr61

I am an RN and have been trying to self diagnose and treat my abdominal bloating, nausea and discomfort for months. Eating small, low fiber meals frequently and Zofran as needed. I recently failed a gastric emptying study which indicated gastroparesis. Colonoscopy yesterday was clean. I am still uncomfortable after eating small amounts of food but gaining weight as my activity level has decreased due to fatigue. Iam not diabetic. I have a SIBO test to complete this week but Iam getting so frustrated and feeling like I’m pregnant every day due to distention. I am 61 years old and my kids are grown.
I did have a serious event with Solanine/nightshade poisoning from a Chinese Lantern plant and ended up unconscious and awakened while in a CT scanner after paramedics brought
Me to local ED. Could there be some correlation between this ? I did see a naturopath after the poisoning event and she said the poison could remain in intestines for years to come… I did have a colonic or washing of the colon after the event but what about my small intestinal tract ?
Just working on trying to feel like myself again as I am a busy RN and want to continue working.
Any and all thoughts are appreciated.

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I also failed the gastric emptying scan. I am not diabetic. Been dealing with it since 2020.
I’ve tried to nail it down with types of food but doesn’t seem to matter what I eat etc. I don’t bother trying to eat anything until noon.
Sometimes Zofran helps.
Definitely effects your quality of life.
I have no answers.

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shellr61 | @shellr61 | May 18, 2023
In reply to @playball "Manuka Honey" + (show)
@playball

Manuka Honey

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Wow that’s interesting as I have been craving honey and it actually settles my stomach. Starting to eat it right out of the jar lately hahaha

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mikejjb123 | @mikejjb123 | May 18, 2023
In reply to @shellr61 "I am an RN and have been trying to self diagnose and treat my abdominal bloating,..." + (show)
@shellr61

I am an RN and have been trying to self diagnose and treat my abdominal bloating, nausea and discomfort for months. Eating small, low fiber meals frequently and Zofran as needed. I recently failed a gastric emptying study which indicated gastroparesis. Colonoscopy yesterday was clean. I am still uncomfortable after eating small amounts of food but gaining weight as my activity level has decreased due to fatigue. Iam not diabetic. I have a SIBO test to complete this week but Iam getting so frustrated and feeling like I’m pregnant every day due to distention. I am 61 years old and my kids are grown.
I did have a serious event with Solanine/nightshade poisoning from a Chinese Lantern plant and ended up unconscious and awakened while in a CT scanner after paramedics brought
Me to local ED. Could there be some correlation between this ? I did see a naturopath after the poisoning event and she said the poison could remain in intestines for years to come… I did have a colonic or washing of the colon after the event but what about my small intestinal tract ?
Just working on trying to feel like myself again as I am a busy RN and want to continue working.
Any and all thoughts are appreciated.

Jump to this post

I had nausea for 5 years. Searched for answers but the doctors had none for me. The answer is simple........see what works for you. Me? I cut out caffeine and instead of taking separate B-6, B-12 and folic acid I take a one a day vitamin. No nausea. Yes, it is hit or miss. Keep trying. What works for you doesn't work for all.

Mike

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