Old 11-18-2010, 01:56 PM #1 (permalink)
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Default Gastroparesis/Gastric Emptying Delay

I think it deserves it's own thread.

Mayo's summary:

"Gastroparesis is a condition in which the muscles in your stomach don't function normally.

Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.

There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.

It's not always clear what leads to gastroparesis. But in many cases, gastroparesis is believed to be caused by damage to a nerve that controls the stomach muscles (vagus nerve).

The vagus nerve helps manage the complex processes in your digestive tract, including signaling the muscles in your stomach to contract and push food into the small intestine. A damaged vagus nerve can't send signals to your stomach muscles. This may cause food to remain in your stomach longer, rather than move normally into your small intestine to be digested."

For me, my lack of appetite set in about two years ago. At the time, I blamed it on my vegetarianism - healthy, whole grain vegetarian foods really are more filling per calorie, after all! I lost a comfortable pound and a half a week for six months, and finally some jealous dieting friends asked me how I did it. I added up my calorie count every day for a week and found I was eating 700-900 calories, and that the basic woman requirement is 1200. So I started eating an extra meal a day I wasn't hungry for and packing in the avocados and didn't think about it again for a while.

A year ago, my progression hit my torso and neck, and stranded me in bed as I couldn't sit in my manual wheelchair anymore. I missed all the big family holidays, and my appetite disappeared almost totally. My neuro felt this was from stress and depression at being stuck in bed, and I saw no reason to disagree with him. Dysphagia set in a few months later, and was clinically provable by February. I was already accustomed to eating by discipline and the clock, so all that really changed for me was what and how I was eating, including losing my vegetarianism.

In March, ALSA loaned me a powerchair and I returned to life. My appetite did increase, to where I was hungry nearly once every other day, and sometimes even two days in a row! I saw this as great, comparing it to not having one at all. I managed to throttle up to 1500-1700 calories a day, which should have caused weight gain. It didn't happen, and this is when I really started to worry what pit my body was throwing my calories down. Spasticity eats calories, but mine is very mild at this point, I am mostly weak. I was really demoralized by the difficulty in swallowing so many calories with little hunger or desire for food and still losing weight.

My hunger waned coming into this fall, but I didn't really notice. What I did notice was that after 9 or 10 months of rigid discipline in taking down all that food, most of which was smoothies or mush I wasn't excited about, I was losing it. It started by almost missing my calorie count, but managing it at the very end of the day, and then missing a day here or there. By the third week of October, though, I was completely off the wagon. I may have made 1200 calories 5 days since then.

I promised myself that if it wasn't better in a few weeks I would go to a doctor. After all, not everything is neurological and I've had a hiatal hernia for 16ish years at this point! My reflux had gotten much worse, too, so after those weeks of not eating nearly enough, it was off to the gastroenterologist for me. I was hoping that I was overblowing it... that my stomach meds were outdated or my hernia was just worse.

He, however, is quite sure that I have gastroparesis exascerbated by my cruddy chewing. I take down a full third of any solid food unchewed (mostly soft pastas), and I can reflux that stuff back up hours after it is supposed to be gone. My appetite, when it cares to appear, is gone after two swallows. And it seems like recommended diet suggestions is a joke at the expense of anyone with dysphagia.

So I'm going for a test to find out how bad it is in early December. In the meantime, he prescribed my erythromycin in elixir form so it will actually make it to my system and changed my stomach meds to elixer for the same reason. He also already started selling me on a feeding tube, but with MND I don't need much selling. I was going to need one someday, as my swallowing is affected. I bought the least harmful juices I could find, and I'm organizing my med times around when I haven't eaten yet to clog up the works.

H4C, Rose, Olly, anyone else who is dealing with this... do you guys have feeding tubes, and if so what kind? Is there anything else that helps?

I have read that aspiration of the reflux (or vomit, but I don't suceed at vomitting) is an issue... I have had chronic coughing fits with completely clear lungs, should I be worried? If I should, any idea of how to avoid that?

I'll add any updates or interesting things I learn here.
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Old 12-01-2010, 08:25 AM #2 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

Quote:
Originally Posted by Tokahfang View Post
I think it deserves it's own thread.


H4C, Rose, Olly, anyone else who is dealing with this... do you guys have feeding tubes, and if so what kind? Is there anything else that helps?

I have read that aspiration of the reflux (or vomit, but I don't suceed at vomitting) is an issue... I have had chronic coughing fits with completely clear lungs, should I be worried? If I should, any idea of how to avoid that?

I'll add any updates or interesting things I learn here.
About aspiration, my gastroenterologist said if the gastroparesis is severe enough, a "J"peg is used, it goes through the abdomen wall, through the stomach and into the small intestine, so that the food goes directly into the small intestines bypassing the stomach altogether. I'm attaching a link I found about various tube types, as I'm not all that knowledgeable about this subject.

Website :: Tube feeding info.


BTW, my problems definitely wax and wane, sometimes its daily, and other times a longer cycle with weeks of no problems, and then a hard stomach even the next morning after an afternoon meal. Seems to be no rhyme or reason as to when problems reoccur or disappear.
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Old 01-07-2011, 12:59 PM #3 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

Having gotten all of my test results, talked to my motility doctor, and studied my insurance coverage, it seems I have no recourse that will allow me to maintain a healthy weight. I am still in a bit of emotional shock, so please don't think too poorly of my writing style today.

I have gastroparesis, and my esophagus and swallow muscles are also impaired. I have become inured to the motile effects of erythromycin, and due to my existing neurological weakness I am not a candidate for any of the other ones. I have to get by with a stronger reflux drug and an anti-nasea suppository.

Spending so much time in the ALS community, I have a very different understanding and attitude about feeding tubes than most. They are given early in ALS to avoid surgical problems once the lungs become involved, and are welcomed for their nutritional support. Having researched the situation, it appears that ALS and cancer are special cases for medically justified feeding tubes. )PLS/HSP seem to fall in some kind of crack in the system.) In other instances, malnutrition has to be demonstrated by a BMI of under 18.5... 101 lbs in my case. "You aren't emaciated yet" was an actual quote by my gastroenterologist.

Unfortunately, weight loss is a bad prognosticator for motor neuron diseases, and the way I am slowing that weight loss is pushing my diabetes. Unless I am missing something, it seems my choices are to push my blood sugar until serious complications, or lose my weight fight and hope they are willing to put in a tube before my progression gets too bad.

I am casting around and seeking options, but I seem to have hit a brick wall. Even if I can get a doctor on my side on the matter, my insurance won't cover the surgery or the maintenance and who knows what else. The doctor has no hope for this cause of gastroparesis remitting, and my swallow certainly won't.

Thanks for listening. If anyone has any suggestions, I'd be thrilled.
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Old 01-07-2011, 04:43 PM #4 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

Dear Beky,
can you swallow liquids such as Ensure Plus? I remember that when I worked as a registered dietitian in the hospital, there was a study done on diabetics using it, and ity was fine on the blood sugars. Have you been evaluated by a dietitian? There are other ways to establish malnutrition than just emaciation. A dietitian could find that you are at high nutritional risk if you have lost a certain % of your usual body weight in a short period of time, if you have vitamin deficiencies, etc. You probably have lots of red flags by now. Doctors don't evaluate for malnutrition, although your primary physician could run blood tests for albumin and protein levels, etc, which would indicate malnutrition. It includes PLS, and there are some great threads on how people got the tubes, details, and advice.
hope this helps,
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Old 01-07-2011, 08:12 PM #5 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

Unfortunately, ensure's taste makes my constant nausea into full vomitous feelings. The doc gave me some anti-naseau meds, we'll see how they do.
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Old 01-07-2011, 10:53 PM #6 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

Wow you guys certainly have a weird health system. ALS gets one , PLS doesnt till emaciated? Thats ridiculous. Some PLS sufferes have swallowing issues early on. I am so sorry about the issues you are having Becky. Move to NZ. You wont ever get a vent but you will get a PEG as soon as you feel you need it and it would be free. I know a local farmer with PLS who has occassional swallowing difficulties. He has a PEG to fall back on , but seldom uses it. He powers around his farm on his modified powerchair.
I siuppose they are horrendously expensive like everything medical.
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Old 01-08-2011, 11:33 AM #7 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

It falls back on predictable outcomes: AlS predictably hurts your lung ability to do surgery, so they want to get in before that happens. Cancer treatments hurt your nutrition and intake, so they do it as prep beforehand if you have dysphagia. PLS is such a small population that it's not predictably anything, and I'm mostly still diagnosed with HSP on paper because of my gene test.

Lagal pointed out there are a few other ways to establish malnutrition and I'm looking into those, and also seek advice from my very helpful neurologist. If there is another way though this thing, I think he'll help me with it.

NZ sounds lovely, btw. =) We wanted to go there for our honeymoon, but it cost too much. If I could teleport, I'd be there, you guys have the best wheelchair rugby team!
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Old 01-08-2011, 12:43 PM #8 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

Of course. We have all the best rugby teams. . Personally I don't understand rugby at all. As soon as the ball is in play, a whole group of men leap on each other, then they do that stupid scrum thing, no idea who thought that up ! Throw the little weird shaped ball into the middle and kick it back out. Wow, obviously not created by the female sex. We would have made it so more understandable . Ha ha.
I really hope the nutrition stuff if sorted for you Becky. It seems so unfair.
This is an amazing country. I never take it for granted, never

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Old 01-08-2011, 12:49 PM #9 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

Beky,

It defies all logic to deny you a feeding tube. Hard to believe that the system in the USA works that way and yet people are not taking to the streets to protest the inhumanity of it all. Everyone is so smug and complacent until the problem is theirs. Seems to me the dreaded 'death panels' have been alive and well for a long time. This is simply heartbreaking.

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Old 01-08-2011, 07:59 PM #10 (permalink)
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Default Re: Gastroparesis/Gastric Emptying Delay

The anti-nausea drugs (Compro suppositories) are helping a good bit, actually, in getting a little more food down. I'll have to play wait and see about how much motility they grant. As I found out with pasta, consuming food doesn't mean my body makes calories out of it.

Tommorow I'll experiment if they make ensure stay down, and update this thread.

Still praying for your son, Olly.
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