Tokahfang
Moderator emeritus
- Joined
- Jan 31, 2010
- Messages
- 791
- Diagnosis
- 07/2009
- Country
- US
- State
- VA
- City
- Richmond
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.
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.