cassava7
Senior Member (Voting Rights)
I am bedridden with severe ME and am struggling to maintain my weight because digestion is very harsh on me. The more I eat throughout the day, the harder digestion becomes, so I cannot eat enough. I have lost a significant amount of weight over the last months, to the point that I have become severely malnourished.
After a week long stay at the hospital, I have had a nasogastric tube placed but it does not help because I still have to digest the feed (even though it is an easily digestible liquid that drips slowly over hours). In fact, it makes the problem worse — so far, I have not been able to finish a pouch of feed and it prevents me from eating my second and last meal of the day (dinner). The medical team essentially treated me as a malnourished patient and discharged me with a diagnosis of “functional digestive disorder”.
I am not sure that the issue is gastroparesis. Before I reduced my portion sizes and forced myself to eat, I did almost vomit, I have moderate nausea, and fats do exacerbate my digestive symptoms very much (for multiple days). But it still seems to me that food empties from my stomach at a normal speed — the predominant sensation is postprandial fullness accompanied by upper abdominal bloating or pain, early satiety and some nausea.
It is as though all my blood pools into my stomach during and after a meal (my hands become cold and pale and I shiver a lot) and stays there while my stomach is working very hard. Then, when I am done digesting and my stomach is empty, my blood comes out of it (my body warms up) and my typical overexertion symptoms come on: the flu-like feeling, a pounding headache, air hunger and exhaustion — as though I had post-exertional malaise from digesting.
In my opinion, postprandial distress syndrome (PDS, one of the two main sub-types of functional dyspepsia) is closer to what I am experiencing than gastroparesis. However, I have been taking domperidone before my meals for months to accelerate gastric emptying, so this biases my assessment; also, to my knowledge, there is no indication that in PDS, digestion becomes harder with each meal.
I have a gastric emptying scintigraphy scheduled next week to check for gastroparesis. However, the test meal is about as caloric as one of my usual meals (345 kcal), contains barely any fats and I will have it after being fasted overnight, i.e. the time of day when I digest the best, so I expect that it will come back clear.
Has anyone run into the same issue? Might it be purely due to ME and/or dysautonomia (I have POTS)?
After a week long stay at the hospital, I have had a nasogastric tube placed but it does not help because I still have to digest the feed (even though it is an easily digestible liquid that drips slowly over hours). In fact, it makes the problem worse — so far, I have not been able to finish a pouch of feed and it prevents me from eating my second and last meal of the day (dinner). The medical team essentially treated me as a malnourished patient and discharged me with a diagnosis of “functional digestive disorder”.
I am not sure that the issue is gastroparesis. Before I reduced my portion sizes and forced myself to eat, I did almost vomit, I have moderate nausea, and fats do exacerbate my digestive symptoms very much (for multiple days). But it still seems to me that food empties from my stomach at a normal speed — the predominant sensation is postprandial fullness accompanied by upper abdominal bloating or pain, early satiety and some nausea.
It is as though all my blood pools into my stomach during and after a meal (my hands become cold and pale and I shiver a lot) and stays there while my stomach is working very hard. Then, when I am done digesting and my stomach is empty, my blood comes out of it (my body warms up) and my typical overexertion symptoms come on: the flu-like feeling, a pounding headache, air hunger and exhaustion — as though I had post-exertional malaise from digesting.
In my opinion, postprandial distress syndrome (PDS, one of the two main sub-types of functional dyspepsia) is closer to what I am experiencing than gastroparesis. However, I have been taking domperidone before my meals for months to accelerate gastric emptying, so this biases my assessment; also, to my knowledge, there is no indication that in PDS, digestion becomes harder with each meal.
I have a gastric emptying scintigraphy scheduled next week to check for gastroparesis. However, the test meal is about as caloric as one of my usual meals (345 kcal), contains barely any fats and I will have it after being fasted overnight, i.e. the time of day when I digest the best, so I expect that it will come back clear.
Has anyone run into the same issue? Might it be purely due to ME and/or dysautonomia (I have POTS)?
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