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.

Hi @dsstevens and @picowgirl, Welcome to Mayo Clinic Connect! Glad you decided to join in the discussions. As you will see I have added your discussion to an already active discussion. This benefits both you and the members that are currently having issues with Gastroparesis and talking about it here on Connect by introducing you to the group and sharing your concerns.

I have included one of the Mayo Clinic links about a diet plan specifically for patients living with
Gastroparesis. https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792#:~:text=Eat%20smaller%20meals%20more%20frequently,broccoli%2C%20which%20may%20cause%20bezoars

Can you give us a little more information about your diagnosis and what your biggest hurdles are?

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@amandaburnett

Hi @dsstevens and @picowgirl, Welcome to Mayo Clinic Connect! Glad you decided to join in the discussions. As you will see I have added your discussion to an already active discussion. This benefits both you and the members that are currently having issues with Gastroparesis and talking about it here on Connect by introducing you to the group and sharing your concerns.

I have included one of the Mayo Clinic links about a diet plan specifically for patients living with
Gastroparesis. https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792#:~:text=Eat%20smaller%20meals%20more%20frequently,broccoli%2C%20which%20may%20cause%20bezoars

Can you give us a little more information about your diagnosis and what your biggest hurdles are?

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Thanks @picowgirl & this is in regards to my 20yr old daughter whom was just diagnosed not even a year ago I believe. She just recently had what apparently was a really bad episode! She was vomiting, had terrible lower stomach cramping, had much diarrhea, back pain & continuous headache but only a low grade fever, never over 100.00 degrees, over the course of about 4-5 days. Prior to all these happenings, the week before she felt nauseated and didn't really have much of an appetite, she rarely does anymore; she has now lost over 6lbs in less than 2wks. and over the course of the past year lost over 30 some pounds. NO she's not a soda pop drinker, the kid LOVES water! After a few days, symptoms kept getting worse, things were coming out of her at both ends so-to-speak that I've never seen before. I took her to the ER; tests were ran and came back as NOTHING being wrong and they even of course tested for Covid which came back negative as well. We did a follow-up with her family physician the next day, again ran plenty of test and took in samples of what was coming out of her, which changed to blood when they got another sample there at the Lab and AGAIN – NOTHING! Only conclusion was it was all related to this Gastroparesis! Now we hear, there's NO CURE or medication to treat other than heartburn medication and they want her to set up an appointment with a GI doctor, again; though she doesn't get heartburn very often. I'm very concerned for multiple reasons, 1st of all, this is NOT my normal kid, I hate to see her sooooo sick and feel helpless. Secondly sounds like this is going to be a whole new lifestyle for her, so got on the internet and started doing research and trying to figure out a diet for her to follow. 3rd I'm very concerned, as for myself I have heartburn and then read that it's common for diabetics to get Gastroparesis as well, so that puts me in that category too, but I'll do the diet with her, whatever it takes! & lastly my mother too had heartburn all the time, long-short, she passed away from having Esophageal Cancer, which all started with much of these same symptoms 🙁

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@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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@picowgirl

i'd like to find out more too what do you have…any diet ideas

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All new to this really, I was just reading the link that Amanda Burnett posted

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@dsstevens

I understand your concerns. I have had gastroparesis…. my relief has been a fix for a hiatal hernia, a gastric by-pass. I still have some symptoms of it or they are the same as other problems I have. I now have Barrett's esophagus and achalasia.. a swallowing problem.

This article from the Mayo Clinic has suggestions in diet and life style. https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792

There are medications. Many people have success with reglan also called metoclopramide. My doctors say I have too many nerve problems to try it. Some have success with erythromycin, but my doctors have never mentioned it to me. The last one is domperidone. I did try it and had many side effects… I don't have my list handy and it is hard for me to remember back to 2013. I got the prescription filled at a compounding pharmacy. My insurance did not cover it and I only got enough pills for two weeks as a trial. I would suggest that option first before ordering a 3 month supply from pharmacy in Canada. When I was first diagnosed with gastroparesis I took propulsid. It was taken off the market shortly after prescribed.. I took it maybe six months and it helped. There are prescriptions for nausea too and they are mentioned in the article.

I do have a couple of personal suggestions. One is to take a probiotic. It will help balance gut bacteria. I tried several and my husband's cousin suggested that I try Align. It really helps me a lot. It cut down on the bouts of diarrhea. More expensive than some probiotics. I try to stock up on it when Sam's Club puts it on special. Secondly, filtered water. Water seemed to irritate my esophagus and stomach more than coffee… or even spicy foods. My husband put in an under the kitchen sink water filter. Only the cold water is filtered… including line to ice maker. Some people filter the water to everything. It may not help with gastroparesis, but it will help with GERD and also be better on an irritated esophagus from vomiting. One more.. take a chewable vitamin with a meal. It will get into your system a bit better than a capsule.

I have dealt with stomach problems since I was pregnant with my second child in 1972. I worry about his stomach too. He has had problems since he was 14. Wow.. a fast 48 years!!

ZeeGee

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@fourof5zs

@dsstevens

I understand your concerns. I have had gastroparesis…. my relief has been a fix for a hiatal hernia, a gastric by-pass. I still have some symptoms of it or they are the same as other problems I have. I now have Barrett's esophagus and achalasia.. a swallowing problem.

This article from the Mayo Clinic has suggestions in diet and life style. https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792

There are medications. Many people have success with reglan also called metoclopramide. My doctors say I have too many nerve problems to try it. Some have success with erythromycin, but my doctors have never mentioned it to me. The last one is domperidone. I did try it and had many side effects… I don't have my list handy and it is hard for me to remember back to 2013. I got the prescription filled at a compounding pharmacy. My insurance did not cover it and I only got enough pills for two weeks as a trial. I would suggest that option first before ordering a 3 month supply from pharmacy in Canada. When I was first diagnosed with gastroparesis I took propulsid. It was taken off the market shortly after prescribed.. I took it maybe six months and it helped. There are prescriptions for nausea too and they are mentioned in the article.

I do have a couple of personal suggestions. One is to take a probiotic. It will help balance gut bacteria. I tried several and my husband's cousin suggested that I try Align. It really helps me a lot. It cut down on the bouts of diarrhea. More expensive than some probiotics. I try to stock up on it when Sam's Club puts it on special. Secondly, filtered water. Water seemed to irritate my esophagus and stomach more than coffee… or even spicy foods. My husband put in an under the kitchen sink water filter. Only the cold water is filtered… including line to ice maker. Some people filter the water to everything. It may not help with gastroparesis, but it will help with GERD and also be better on an irritated esophagus from vomiting. One more.. take a chewable vitamin with a meal. It will get into your system a bit better than a capsule.

I have dealt with stomach problems since I was pregnant with my second child in 1972. I worry about his stomach too. He has had problems since he was 14. Wow.. a fast 48 years!!

ZeeGee

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Wow! I'm sorry to hear you've had such problems, for so long. Thanks so much for all the ideas &/or suggestions! The doctor did prescribe Reglan for nausea & Protonix for heartburn. It seems like my kid is just going to have to try different things and see what does or does not work for her. Perhaps there will be a cure in the near future – fingers crossed. Thanks again

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@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.

Jump to this post

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!

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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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@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?

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@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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@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?

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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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@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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@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.

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