1. < Digestive Health

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 10 1:34pm
In reply to @marshae "Hi: My GI specialist says he is "frustrated" and has not come up with a diagnosis...." + (show)
@marshae

Hi: My GI specialist says he is "frustrated" and has not come up with a diagnosis. I have had exploratory bowel surgery with nothing turning up plus several CT scans. One prescription I am on is to speed up digestion but I had another obstructed bowel since starting to take them. The other prescription is supposed to help muscles work. I have been on that one for several months. It does give me the runs plus a sick stomach at times. The only surgery I had before this all started with appendix which does not appear to be the cause. I had a colonoscopy in late March and then 2 weeks later had my first obstruction, followed by the 2nd obstruction about 6 weeks later and then the 3rd obstruction about 14 weeks later. I feel that the GI people are ready to give up. In order to get a 2nd opinion I would have to have them refer me and would have to travel to a larger city. At one point they told me to eat whatever I wanted. I have cut out popcorn, walnuts and raw vegetables but other than that am eating pretty well everything.

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That must be frustrating, @marshae. Are you able to go to a larger city (or get a ride with someone) in order to get a second opinion?

I'm glad that you are working at finding a helpful eating plan. It seems that everyone has different reactions to foods that can either help or hinder the problem. I would like to follow your progress. Will you keep in touch and provide updates as it is convenient for you?

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2 replies
marshae | @marshae | Jan 10 4:05pm

Yes, I can keep in touch. Thank you. I actually have an appointment tomorrow with the GI specialist here in Kingston. Not expecting much. If I could get a referral to say Ottawa I could get there. Will let you know what is happening.

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marshae | @marshae | Jan 10 4:07pm
In reply to @hopeful33250 "That must be frustrating, @marshae. Are you able to go to a larger city (or get..." + (show)
@hopeful33250

That must be frustrating, @marshae. Are you able to go to a larger city (or get a ride with someone) in order to get a second opinion?

I'm glad that you are working at finding a helpful eating plan. It seems that everyone has different reactions to foods that can either help or hinder the problem. I would like to follow your progress. Will you keep in touch and provide updates as it is convenient for you?

Jump to this post

Forgot to mention that my husband and I are avid travellers. We have had to cancel 2 major trips since spring because of this. My travel insurance would not cover me if something happened while away or if I had to cancel due to this problem.

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1 reply
cowtownusa | @cowtownusa | Jan 11 10:32am

Have you had any of your spine and cervical (neck region ) checked. I have recently been diagnosed with MALs ( median arcuate ligament syndrome) also known as celiac compression syndrome ; also known as dunbars disease the core cause for me is slight scoliosis which in turn causes lordosis in my back which pulls muscles to tight which in turn compress the celiac nerve causing digestive disorders leading to high cholesterol and cardiac issues. Everything is connected, one thing goes wrong in the body is like a domino effect. I hope you can find answers and relief soon.

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marshae | @marshae | Jan 11 6:20pm
In reply to @hopeful33250 "That must be frustrating, @marshae. Are you able to go to a larger city (or get..." + (show)
@hopeful33250

That must be frustrating, @marshae. Are you able to go to a larger city (or get a ride with someone) in order to get a second opinion?

I'm glad that you are working at finding a helpful eating plan. It seems that everyone has different reactions to foods that can either help or hinder the problem. I would like to follow your progress. Will you keep in touch and provide updates as it is convenient for you?

Jump to this post

Hi: Wanted to let you know an update. I had an appointment with the GI specialist this morning. He says he is cautiously optimistic that the new meds I have been on for several months will be the answer. He does not feel it is a mechanical problem and the surgeon has confirmed that. I am seeing the surgeon at the end of this month as the GI people requested that he take a second look at my CT scans.

I feel very hopeful that this will work out. The doctor also said that he feels I will be safe to travel as long as I travel to a country with good medical coverage. If I can make it to March that will be 6 months since my last obstruction and we will book a trip.

Thank you for asking me for follow up information. I really appreciate your interest.
Marsha

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 12 8:48am
In reply to @marshae "Hi: Wanted to let you know an update. I had an appointment with the GI specialist..." + (show)
@marshae

Hi: Wanted to let you know an update. I had an appointment with the GI specialist this morning. He says he is cautiously optimistic that the new meds I have been on for several months will be the answer. He does not feel it is a mechanical problem and the surgeon has confirmed that. I am seeing the surgeon at the end of this month as the GI people requested that he take a second look at my CT scans.

I feel very hopeful that this will work out. The doctor also said that he feels I will be safe to travel as long as I travel to a country with good medical coverage. If I can make it to March that will be 6 months since my last obstruction and we will book a trip.

Thank you for asking me for follow up information. I really appreciate your interest.
Marsha

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That certainly is encouraging news, @marshae. Second opinions are important and I'm glad that you were able to see another specialist.

I hope that you continue to do well. Please keep posting as you have other concerns or questions. I'd enjoy hearing from you again.

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wisco50 | @wisco50 | Jan 19 10:20pm

Gastroparesis? Sounds like what I know about it. Have a friend diagnosed with it years back. She takes some med called - not sure about spelling - “sounds like” Cisispride…

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1 reply
wisco50 | @wisco50 | Jan 19 10:24pm
In reply to @marshae "Forgot to mention that my husband and I are avid travellers. We have had to cancel..." + (show)
@marshae

Forgot to mention that my husband and I are avid travellers. We have had to cancel 2 major trips since spring because of this. My travel insurance would not cover me if something happened while away or if I had to cancel due to this problem.

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I thought travel insurance covered that sort of thing - I mean, if our own health insurance policy at home doesn’t cover us out of area or out of country, isn’t that the idea we get travel insurance?! Yikes! I might need to research this in more depth.

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1 reply
marshae | @marshae | Jan 20 7:40am
In reply to @wisco50 "I thought travel insurance covered that sort of thing - I mean, if our own health..." + (show)
@wisco50

I thought travel insurance covered that sort of thing - I mean, if our own health insurance policy at home doesn’t cover us out of area or out of country, isn’t that the idea we get travel insurance?! Yikes! I might need to research this in more depth.

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Travel insurance can be complicated. Even though my bowel issue doesn't fall under the pre-existing conditions the problem is in the small print. Under additional exclusions and limitations: Any medical condition for which prior to your day of departure and/or prior to booking your trip 1. you were awaiting the outcome of medical tests, the results of which show any irregularities or abnormalities. 2. future investigation , consultation with any physician, treatment or surgery (except routine monitoring) is recommended by a physician or planned before your trip.
This does not include regular check-ups or routine tests where no medical signs or symptoms existed or were found during the check-up.

That is the exact wording in my travel insurance. So it can be very tricky and you would not want to go on the trip and then have to file a claim and have it denied because of the above.
My GI specialist suggested I wait for 6 months with no issues before booking a trip which I am going to do. I am going back to him in 4 months but it will be routine monitoring. Hope it will work out.

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1 reply
pfbacon | @pfbacon | Jan 20 8:20am
In reply to @marshae "Travel insurance can be complicated. Even though my bowel issue doesn't fall under the pre-existing conditions..." + (show)
@marshae

Travel insurance can be complicated. Even though my bowel issue doesn't fall under the pre-existing conditions the problem is in the small print. Under additional exclusions and limitations: Any medical condition for which prior to your day of departure and/or prior to booking your trip 1. you were awaiting the outcome of medical tests, the results of which show any irregularities or abnormalities. 2. future investigation , consultation with any physician, treatment or surgery (except routine monitoring) is recommended by a physician or planned before your trip.
This does not include regular check-ups or routine tests where no medical signs or symptoms existed or were found during the check-up.

That is the exact wording in my travel insurance. So it can be very tricky and you would not want to go on the trip and then have to file a claim and have it denied because of the above.
My GI specialist suggested I wait for 6 months with no issues before booking a trip which I am going to do. I am going back to him in 4 months but it will be routine monitoring. Hope it will work out.

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Thanks for pointing this out. I wouldn't have read the fine print. pfbacon

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