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rose

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Are there any PALs here that have had to deal with this?

Also, has anyone had a JEG (jejunostomy tube) in the small intestine, instead of PEG?

I've developed a (very) noticeable slowing of food leaving the stomach to be digested. Its like when one is coming down with the stomach flu, but doesn't feel sick yet, just that "why is my stomach still full and I have some indigestion" feeling. fibrous foods such as raw veggies seem to be the worst.

I've had a gastroenterologist, my GP, and my neurologist at Hopkins say that they feel that my latest and greatest development is due to the problems I have with the Vagus nerve (10th cranial, same one responsible for voice, swallowing, etc). .. So, to be preemptive in answering questions, no, its not medications, I actually went off of the Rilutek hoping for some improvement, and it hasn't helped. I've been back off of it (I' ve stopped before due to same reason) for about a month, maybe a little longer. Right now I'm on no meds, and vitamins are just miserable but I still get them in about 5 days a week.

The first sign of a problem was found during a swallow study that revealed slowed esophageal emptying into my stomach, and has progressed to slowed stomach emptying since then.

I also feel like I'm swallowing air frequently. Of course with the BiPAP it happens while sleeping, but even throughout the day I get the sensation sometimes. It makes me wonder if maybe the sphincter muscle that closes off my stomach isn't closing like it should either. (?) Has anyone had this happen, either with the BiPAP or just on its own? I've taken a lot of good natured ribbing from the men in my life over Christmas, because I've not ever needed to cultivate the talent to "belch" like a guy. It was quite entertaining have them demonstrate how to get out a good burp ~ and the silly proud look they'd get when they did. :cool: Apparently there is a subtle but important difference between a beer burp and a Diet Coke burp.....

I'm being scheduled to see a gastroenterologist at the same time of my next Multidisciplinary ALS clinic visit mid-February, so I was hoping for some input from others that have experienced this, and suggestion for what I should ask when I'm at the appointment... thanks :)
 

olly

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hi rose.
sorry you are going through yet more problems,i hope at your next appointment you can get it sorted out.
i can not answer your questions but keen to hear any responses you get.
as you know i have the same feeling/problem with food settling heavy in my lower throat/upper chest.
i was thinking it was because i can not chew very well so some of my food goes down in chunks.
i wish i could burp:lol: i feel like i need to alot of time but its stuck and wont come out.
take good care dear friend:)
 

CindyM

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Gosh, Rose- I hope you do not have to wait until February to sort this out. In the meantime, I wonder if it would help to substitute at lest one meal for one of those liquids like ensure? It might be easier to swallow and digest...Just a thought.
 

ktmj

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A 100-yr old lady was celebrating her birthday. She leaned to the right and everyone reacted and propped her up with pillows. She started leaning to the left and they did the same. Then she started leaning forward and they pulled her back in her chair. Everybody was being so caring.

About that time her great-grandson showed up and asked if she was having a good birthday. She said "Oh it's a marvelous party but they won't let me fart".
 

brendapals

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hey rose,
I certainly wish I had some insight to share with you, but I don't. Just know that I'm thinking of you and hoping for the best,
About all I know right now is I can't burp!
talk soon dear,
brenda
 

rose

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ktmj..... :lol::lol::lol:

Cindy, I think I want to wait (for the doctor appt ) if I am able. I've gone to a local gastro, who is excellent, but it gets so complicated trying to get records and communication back and forth between here and JHH. The clinic director at Hopkins said it was best just to use their doctors because they want to do their own testing, and interpretation of results. I did have a scope done ( here locally) that showed that I don't have a blockage, which no one thought I did have anyway... I've found my "best friend" is yogurt, especially the style I used to get over in the UK, (thick in a bottle that is pourable) I've found it at Whole Foods, but not much of a selection on flavors.~ so I guess its going to be another banana-mango week here! :cool:

Caroline, I'll let you know.... at first it was just the slowing in the esophagus, which kind of sounds like what you've got going on, like, if I would drink something hot, I'd feel the heat where you're describing (although more in the back than the front) instead of that warm good feeling in the stomach, it is a hot even painful feeling in the chest til it moves on down - same thing with cold. I can feel where the liquid or food is hanging up in there by temperature. The last time I had the stupid pneumonia, it was after I drank a GIANT smoothie, and I actually felt coldness spread out over on the upper left side of my chest, - next day I started to get sick, and they're thinking that I aspirated by it building up in my esophagus rather than improper swallowing. - but no one really knows of course. I'm careful to never drink that much an once anymore, and to stay upright for a while after I eat too. The gastroenterologist said that it is easier for the esophagus muscles to move substances the consistency of honey down than a thin liquid such as water. He said thin stuff just splashes around in there, which seems weird to me. I guess I always thought of the esophagus as a pipe and that water or whatever would go right down, but it must be more that the muscles move it down....

Brenda.... yep, we spend all of our lives trying to be ladies and not burp, then it turns out to be a talent that would come in handy! I remember my youngest son could burp the alphabet when he was about 11 or so LOL.
 

olly

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hi rose.
i do get the heat/burning in my chest if i drink something like a cup of tea too hot.
just had my evening meal and the lower neck/upper chest area is feeling heavy,like a bloated feeling you get in your stomach.
i agree lighter foods /meals dont feel as bad after.
love the new photo by the way,noticed your hair is straighter.
i will have to get my son take a photo of me,will need to straighten my hair and put a bit of makeup on or everyone will think its halloween again:lol:
 

rose

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Caroline, make sure you stay sitting up for a bit after you eat.... and get that picture posted!

Re: my hair, its getting long, starting to look like it did back in the 70's ~ with a 30 year older face LOL I've been trying out the pale lipstick too because my mouth is getting more lopsided. The shade is called "doll house pink" :cool: I normally wear "starlet" which is the red..... I really hate this disease, but I'm not letting it get the upper hand.
 

ZenArcher

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Both the sphincters in the stomach relax to open which means that as/if they become affected they would be more apt to open than remain shut. For me personally I know that I have more issues with heartburn especially when lying down than before. That could be due to a weakening of the cardia which is the valve between the esophagus and stomach which as you said is innervated by the vagus nerve.

I find myself swallowing more air when I lie down. I try not to belch. I've found that more often than not belching will result in laryngospasms and heartburn. My only thoughts based on what you've said are first tuck your chin to your chest when swallowing which you probably already are and get a good amount of fluids in you to help things along.

Good luck at the doc.
 

rose

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Thanks Jeff, Yes tucking my chin, and actually turning my neck.head to the side is another technique they showed me to help with moving it down to the stomach. Doesn't seem there is anything to help it once its in the stomach other than watching what I eat... I'm glad I'm not the only one on here that feels like they swallow air. Before I was switched to BiPAP, while still on CPAP it was horrible. (air would clog my ears too)
 
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