Do any of you have paralysis of muscles that move food from stomach to

Posted by pfbacon @pfbacon, Jan 6 8:16pm

intestines?
I can't remember what it is called but I have it.
My gastroenterologist diagnosed it about 20 years ago.
I was put into the clinical trials for dexloxiglumide. It worked but FDA did not approve it.
I took another medicine that worked well for 2 years, then the FDA pulled it.
The gastro changed me to amitiza and it has been expensive but I had to pay or die.
Generic amitiza became available a couple of years ago and it works just as well.
I can ask my gastroenterologist what my condition is called (it isn't IBS or Chrohn's), but she might wonder if I am getting senile ... I'm not, it's just been a very long time and it's 2 very long words.
In my state, doctors are required to report to the DMV if they suspect that any patient is getting senile and of course the DMV revokes your driver's license immediately and you have to go through months of tests and sworn statements and reviews before you can get it back.
I'm sure other people have this condition - there wouldn't be medicine and generic medicine for it if I was the only one.

Thank you and Happy New Year! Peggy

Interested in more discussions like this? Go to the Digestive Health Support Group.

Good luck on your situation. There are so many different types of digestive disorders. I suggest asking your healthcare provider for a copy of your health records and a list off all medications you have taken. As far as IBS goes that would not be a DX ( DIAGNOSES) IBS is a symptom a or a condition; caused by a primary issue. I suggest further evaluation with ultra sounds and full abdominal CT scans to find out the core issue that can possibly be corrected with surgery. Providing you are a good candidate for surgery. Advocate strongly for your own health don't become a guinea pig based on cookie cutter diagnoses. If your care provider is not listening to you it may be time to find another if possible. Question everything and don't trust blindly. Merck Manuals and the CDC are great resources for gathering information to arm your knowledge base with.

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@holland

Could it be gastroparesis?

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Thank you ! It sounds plausible - I will look up "gastroparesis" and see if the symptoms described match mine. Peggy

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Not paralysis, but for me long and torturous colon , which causes constipation and slow passage of food .
However I have after 60 years of constipation finally found the answer. 😀🙃
Sheila .x

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Hi.
I have GASTROPARESIS and have the same symptoms. It means delayed stomach emptying. There's no cure. I am also clueless as to what to do about it because it affects my quality of life signafficantly

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@sheilagreen

Not paralysis, but for me long and torturous colon , which causes constipation and slow passage of food .
However I have after 60 years of constipation finally found the answer. 😀🙃
Sheila .x

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Please advise what the "answer" is? I take restoralax every day plus two prescriptions.

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@sophiageld

Hi.
I have GASTROPARESIS and have the same symptoms. It means delayed stomach emptying. There's no cure. I am also clueless as to what to do about it because it affects my quality of life signafficantly

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Hello @sophiageld and welcome to the Digestive Health support group on Mayo Connect. So many can empathize with the feeling that our digestive system is sluggish and moves way too slow for our comfort level. Mine seems to be caused by several surgeries of the upper digestive tract. I've found that a low residue diet has worked well for me.

As this is your first post on Connect, I look forward to getting to know you better. Please share, as you are comfortable doing so, what your doctors believe may attribute to your sluggish digestive tract. For example, have you had surgeries, do you have a disorder like diabetes or a neurological disorder such as MS or PD? What medications or lifestyle changes have been suggested to you to help with this problem?

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@hopeful33250

Hello @sophiageld and welcome to the Digestive Health support group on Mayo Connect. So many can empathize with the feeling that our digestive system is sluggish and moves way too slow for our comfort level. Mine seems to be caused by several surgeries of the upper digestive tract. I've found that a low residue diet has worked well for me.

As this is your first post on Connect, I look forward to getting to know you better. Please share, as you are comfortable doing so, what your doctors believe may attribute to your sluggish digestive tract. For example, have you had surgeries, do you have a disorder like diabetes or a neurological disorder such as MS or PD? What medications or lifestyle changes have been suggested to you to help with this problem?

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I contracted a virus (at the Marriot Hotel in Scottsdale Arizona) that was so pernicious that I was completely dehydrated in 2 hours, weak, couldn't move or even open my eyes. The hospital hydrated me, I flew home to LA. Then I kept getting sick over and over for 2 years, diagnosed with flu, fibromyalgia, chronic fatigue syndrome, etc. My adrenals got exhausted, doctor said my body was starting to shut down in preparation for death. Finally, a brilliant doctor took 2 trays of blood samples, sent them to labs including Cedars Sinai and UCLA - they found a virus that wasn't in any database, they surmised that it may have come from South America because of where I was when I got it. He sent me to another brilliant doctor, an internist, who said the labs also saw cytomegalovirus. He wanted to try giving me mega-doses of anti-virals for the cytomegalovirus in the hopes that it would also kill the other 'mystery' virus. He also sent me to Santa Barbara where another doctor took the blood out of my body, ran it under ultraviolet light (to kill some of the viruses) and put my blood back in. I fought for my life because my daughter was in grade school - she needed her mommy. Slowly, I got better. The anti-viral was very expensive and my insurance company tried every which way to cut me off so I had to fight them for my life every month too. After about 1 1/2 or 2 years, I felt well enough to quit the medicines. My doctor tested again and there was only a little of the viruses left. He said that the remnants would always be there and I should get a flu shot every year because getting sick with flu could trigger the mystery virus and/or cytomegalovirus to start replicating again. The muscles that move food from my stomach to intestines had shut down and they never have come back. The doctors sent me to a gastroenterologist who put me into the test program for dexloxiglumide. The rest of that part is in my first post. I had to rebuild strength in my body so I did physical therapy, Gold's gym, and running. My daughter is 33 now, married, and doing well. I retired after 50 years of working (while I was child-rearing I only worked part time). I have done everything to avoid getting covid. I didn't get it until last October - the doctors gave me Paxlovid and it worked very well. I haven't been sick since then but I'm still avoiding viruses as best I can (shots, masks, staying away from crowds, washing hands often, etc.) And I take a low dose "prophylactic anti-viral" every day.
Thank you for asking - I haven't told that scary story in a long time. I am still grateful to brilliant researchers and doctors who spend their lives looking for ways to make us feel better.
Peggy

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@pfbacon

Thank you ! It sounds plausible - I will look up "gastroparesis" and see if the symptoms described match mine. Peggy

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I looked up "gastroparesis" and the descriptions sound like what I have.
causes contractions of the muscles that are paralyzed (without causing spasms elsewhere). Sometimes I feel a little muscle spasming in my abdomen - not often enough to be a problem, it's rather reassuring actually, it tells me that the medicine is working.
When I was in the clinical trials for dexloxiglumide, I was given the placebo for the first 6 months. I had to eat less because the food would not leave my stomach - my stomach got full and hurt. I was allowed to take 4 exlax every 4 days - the 3rd and 4th days were very uncomfortable.
Thanks, all of you for sharing information about this condition that we share.
Peggy

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@sophiageld

Hi.
I have GASTROPARESIS and have the same symptoms. It means delayed stomach emptying. There's no cure. I am also clueless as to what to do about it because it affects my quality of life signafficantly

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I have gastroparesis also. I had surgery for hiatal hernia and the surgeon injured my vagus nerve. My entire life has changed for the worse.

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