1. < Digestive Health

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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dsstevens | @dsstevens | Jul 31, 2020
In reply to @pdilly "@dsstevens I hope you will take time to go back to the beginning of this Gastroparesis..." + (show)
@pdilly

@dsstevens I hope you will take time to go back to the beginning of this Gastroparesis conversation and read all of the replies. I did the 6th reply to the original post And listed 11 things that got me to where I am today.
I’m so sorry your 20 year old daughter is dealing with this. You’re right — it’s tough to live with but you can get to the point where it is quite manageable.
From your post, I want to ask a really gross question. Does she ever have severe stomach cramps with diarrhea and vomiting simultaneously? I did. And the surgeon who was scheduled to do a Nissan fundiplication procedure pinpointed the problem.

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Hello. I'm still trying to learn how to work this page, lol An answer to your question, YES my daughter was sitting on the potty with it coming out both ends basically & the same things were coming out. We took a sample into the doc offc and the doctor didn't even have an answer, just an odd look on her face! She had sent us to the lab with it, they didn't take it and sent us back to the doctor and we told her that the lab didn't want the sample either that they got from her what they needed; but did they really because by the time she went to the lab for them to do tests, she was at that point showing blood in both the urine & stool sample, totally different than what we had brought in!

REPLY
Mary @1950 | @1950 | Mar 20, 2021

MCTD with gastroparesis and constipation

I have suffered with gastroparesis, heartburn, constipation and bowel leakage since I was diagnosed with MCTD 14 years ago. I have been to a gastroenterologist, had endoscopy and colonoscopy, CT scans and tried biofeed back with a Women’s OT. The heartburn is managed with daily medication but the bowel regime is just not helping. Any suggestions?

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1 reply
Erika | @erikas | Mar 20, 2021
In reply to @1950 "MCTD with gastroparesis and constipation I have suffered with gastroparesis, heartburn, constipation and bowel leakage since..." + (show)
@1950

MCTD with gastroparesis and constipation

I have suffered with gastroparesis, heartburn, constipation and bowel leakage since I was diagnosed with MCTD 14 years ago. I have been to a gastroenterologist, had endoscopy and colonoscopy, CT scans and tried biofeed back with a Women’s OT. The heartburn is managed with daily medication but the bowel regime is just not helping. Any suggestions?

Jump to this post

@1950 Welcome to Mayo Clinic Connect.

14 years is a long time and it's important that you find ways to better manage your symptoms.

You will notice that I added your question to a previous discussion.

I did this so you could connect with members like @dsstevens @dsstevens @fourof5zs @pdilly @picowgirl @rossjt @tazz61@helenfrances @annieoh that have already discussed this topic in the past.

I am wondering if you have ever considered acupuncture or yoga?

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1 reply
Mary @1950 | @1950 | Mar 20, 2021
In reply to @erikas "@1950 Welcome to Mayo Clinic Connect. 14 years is a long time and it's important that..." + (show)
@erikas

@1950 Welcome to Mayo Clinic Connect.

14 years is a long time and it's important that you find ways to better manage your symptoms.

You will notice that I added your question to a previous discussion.

I did this so you could connect with members like @dsstevens @dsstevens @fourof5zs @pdilly @picowgirl @rossjt @tazz61@helenfrances @annieoh that have already discussed this topic in the past.

I am wondering if you have ever considered acupuncture or yoga?

Jump to this post

I have tried acupuncture. Hoping to do some yoga. To add complications I was seriously injured a year and a half ago. Long recovery. I finally feel like myself again but now wear a brace on one lower leg. Slowly getting back in the exercise routine. Thank you for your help. Looking forward to hearing from others.

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pdilly | @pdilly | Mar 20, 2021

@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!)

REPLY
3 replies
Mary @1950 | @1950 | Mar 23, 2021
In reply to @pdilly "@1950 i don’t know what MCTD is - but I do have Gastroparesis. Here’s part of..." + (show)
@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!)

Jump to this post

Pdilley, Thank for the suggestions. MCTD is an autoimmune disease. Mine is a mixture of lupus, scleroderma and myositis.

REPLY
brandywine8875 | @brandywine8875 | Mar 29, 2021

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

REPLY
2 replies
ken82 | @ken82 | Mar 29, 2021
In reply to @brandywine8875 "Hello, I feel for you. I'm going through the same thing for years I have been..." + (show)
@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

@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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brandywine8875 | @brandywine8875 | Mar 29, 2021

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

REPLY
1 reply
Mary @1950 | @1950 | Mar 29, 2021
In reply to @pdilly "@1950 i don’t know what MCTD is - but I do have Gastroparesis. Here’s part of..." + (show)
@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!)

Jump to this post

What is domperidone?

REPLY
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