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Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March - which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet - pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn't move through - then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling - It seems to work by drinking just water /gator aid for at least a day. I just don't know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn't seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach - I never seem to have stomach pain - Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition - what are your symtoms and how are you managing? Thanks

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romans8 | @romans8 | Nov 4, 2023
In reply to @sebley12 "I have Multiple Sclerosis and because of muscle weakness I was also diagnosed with GP. I..." + (show)
Profile picture for Kimberly @sebley12

I have Multiple Sclerosis and because of muscle weakness I was also diagnosed with GP. I had recently had a Laproscopic Pyelormyotomy and am now doing fine. I also have a lot of other Autoimmune diseases as well such as Lupus and Sacoidosis and more. Autoimmune diseases can cause all kinds of Gastrointestinal problems so be sure to get your ANA blood checked for any kind of Autoimmune activity that your Doctor may be un aware of. I also had the Nissen Fundolpcation as well. Best wishes to all!!

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Hi everyone. It is really heartbreaking to hear how so many of you have suffered with gastroparesis with so little relief. I was just diagnosed with this condition after a nuclear gastro emptying solid test a month ago. I was told to follow the corresponding soft/liquid diet and was prescribed Motegrity, which I haven’t been able to get my insurance to cover. So I am at a loss as to how else to deal with this frustrating condition. My GI symptoms are pretty much the same as most of you have described ( without the vomiting). I am not diabetic, but do have severe neuropathy and had a thyroidectomy several years ago. I also have heart arrythmias, so that eliminated some medication suggestions.
I am wondering if any of you have tried Motegrity? Or Tens unit on the stomach?
Hope to hear from some of you.

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ugg | @ugg | Nov 15, 2023
In reply to @paarak "Crystal Saltrelli (below message) has such a great website and support for gastroparesis. I found the..." + (show)
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Crystal Saltrelli (below message) has such a great website and support for gastroparesis. I found the site when I was first diaganoised four months agao. She is a life saver for me when I start to get depressed and feeling sorry for myself. I go read some of the facebook or her website and get a better feel for life. Right now I am having a good spell. I try to keep track of everything that goes on in the day - so when I am having a good day it helps to see if there are trigger points. I seen a UCDavis specialist a couple of weeks ago and she took meoff Domperidone as she didn't think it was helping and prescribed Reglan. But after reading all the side effects the last thing I want to do is give myself more problems so I never started taking it. I am not taking any meds!! What she also told me to start taking for my constipation is MiraLax and a fiber supplement CITRUCEL (although Crystal website suggest being careful with Fiber supplements). Now that I am not having prog.ems with constipation - the liquid, soft food diet that I am on seems to work. I feel really good with the diet modification. almost feel like I can start experimenting with more solid gastroparesis friendly food again.

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I also have found Crystal’s books and website helpful. I have had gastroperises for 6 years. Recently I have had a flare up that has been rough. Diet and anti anxiety medication has helped me. The cause of mine was hiatal hernia surgery. Diet is tough but the only thing that works to help. I am also not taking meds. for this. Too many side effects. I find that eating right and keeping your spirits up help . I highly recommend Crystal’s articles.

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ugg | @ugg | Nov 16, 2023

In reading all your comments on meds. you have tried, I am very committed to staying off all. It is hard when you feel so bad but the side effects of all these meds. are just as troublesome. My gastroenterologist suggested that I keep a food diary , seek the help of a nutritionist and pull meals from those foods best tolerated. This along with anti anxiety med., lorazepam, has really helped me live more normally without the sick feeling I seemed to be having from drugs that were supposed to help me. I suggest that you try eliminating as many drugs as you can . Also, another over the counter drug that can help is famodadine for acid reduction. Hope this might help somebody struggling now.

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parrotlady | @parrotlady | Nov 17, 2023
In reply to @cnash1 "my daughter was dx with this and she took erythromycin 30 minutes before every meal except..." + (show)
Profile picture for cnash1 @cnash1

my daughter was dx with this and she took erythromycin 30 minutes before every meal except snack like meals and it helped tremendously. She did this for about 3 months and was able to stop the medication and has been doing well with that ever since. We unfortunately still can not find the source of her lower abdominal pain but we are still searching for answers.

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Has she been tested for SIBO? I have gastroparesis and SIBO. It seems the horrible lower abdomen pain I was having was from SIBO.

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cnash1 | @cnash1 | Nov 17, 2023
In reply to @parrotlady "Has she been tested for SIBO? I have gastroparesis and SIBO. It seems the horrible lower..." + (show)
Profile picture for parrotlady @parrotlady

Has she been tested for SIBO? I have gastroparesis and SIBO. It seems the horrible lower abdomen pain I was having was from SIBO.

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Hi No what is SIBO?

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parrotlady | @parrotlady | Nov 18, 2023
In reply to @cnash1 "Hi No what is SIBO?" + (show)
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Hi No what is SIBO?

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Small intestine bacteria overgrowth. I just finished an antibiotic for SIBO. Other then the usual symptoms of gastroparesis, I’m 80% better.

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cnash1 | @cnash1 | Nov 20, 2023
In reply to @parrotlady "Small intestine bacteria overgrowth. I just finished an antibiotic for SIBO. Other then the usual symptoms..." + (show)
Profile picture for parrotlady @parrotlady

Small intestine bacteria overgrowth. I just finished an antibiotic for SIBO. Other then the usual symptoms of gastroparesis, I’m 80% better.

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Thank you. How is that diagnosed?

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parrotlady | @parrotlady | Nov 20, 2023

Mine was diagnosed by symptoms but there is a breath test for diagnosis.

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Phil | @dover1036 | Nov 21, 2023
In reply to @cnash1 "Thank you. How is that diagnosed?" + (show)
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Thank you. How is that diagnosed?

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Gastric emptying study.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 21, 2023

@romans8
Regarding Motegrity you can get it through a Canadian pharmacy at a much lower price.
Look up Certified Canadian Pharmacies and compare prices.

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