I don't know how many times I've begun to make a post about this symptom, only to change my mind. Though I've had CCC ME/CFS for 5 years and a milder case for a few years longer, I'm quite certain this symptom is not part of ME/CFS. Plus it's a gross one to read about - consider yourself warned. But it's a very serious (potentially life-threatening) issue and so far no one can figure it out so I'm asking for help from you all to solve this mystery.
In a nutshell, the symptom is acute onset of severe abdominal pain and uncontrolled vomiting and diarhhea. And by that I mean zero control over bowels - vomiting every minute or two and the diahhrea pouring out of me every time I heave. I didn't think it was possible to lose so much. I'm unable to sit up, much less stand as I'm just lying on the floor screaming my head off. I end up literally covered head to toe in vomit and feces. The most critical thing is to replace fluids and electrolytes during this time, and if I don't get it within a couple minutes of onset I begin passing out. I tend to have about 30 seconds of warning between the time I realize it's happening and the time I'm completely helpless on the floor. Once I reach that point I am incapable of doing anything, including getting fluids for myself.
The longest this symptom has ever lasted is an hour, after which I am perfectly fine aside from being completely exhausted and wanting to eat gently or not at all for a while to give my bowels a chance to recover. It happens about 2-3 times a year with a few months between episodes and is progressively worse each time. The last time it happened I was passing undigested food by the end of it.
For most gastrointestinal problems the first place you look is a person's diet and whatever other medications or supplements that person is taking orally. That's the problem - no such culprit can be pinpointed. I eat a grand total of 5 different foods - beef, potatoes, pecan butter, honey, and coconut oil - and each one has specifics on how it's prepared, cooked, processed, the source we get it from, etc. I occasionally try a few bites of a different food....this symptom has never occurred in correspondence with that.
And it isn't a problem with a certain batch of food or food poisoning, as we once suspected. I've eaten the same batch of food, the same jar, even leftovers from what I ate right before an episode and had zero problems.
As far as oral medications and supplements go, at one point I cut them all out to see if that would cause these episodes to stop. It did not. Also, in the years this symptom has been occurring I have completely changed my oral supplements and medications, so that I am currently not taking any that I was taking before, yet this symptom has continued its steady, predictable, progressive path.
What do you do with a GI symptom that can't be traced to anything you put into your mouth?!
I've had stool tests done twice in the past 5 years without showing anything significant, and am getting ready to do them again. My doctor's only guess at this time is a parasite issue, so that's loosely what we're assuming for now.
I first noticed the symptom a few years ago, but since it only lasted a few minutes and was just some vomiting and diarrhea at the same time along with brief but horrible pain I shrugged it off as a fluke or a bug or a food issue - certainly nothing to worry about. After a few times (that would be over the course of a year or more) I began to realize that this kind of thing had happened before, and took note of the circumstances surrounding it. When it continued I eventually mentioned it to my caretaker, cut out oral supplements in case one of them was causing the issue, but as it kept happening and became worse I began to require my caretaker to nurse me through the episodes. The first time she saw it she had the same thought that I did at first, that it was some sort of fluke that shouldn't happen again - and yet, it keeps happening! It's easy enough to forget inbetween episodes because it happens so rarely, and I don't have any other GI problems otherwise. But then it hits again...
We have tried charcoal (activated carbon) during these episodes, which should help if it is some issue of poisoning. One time we thought it had made a difference, but multiple times since then has shown no change and we now no longer use it.
So far every time it happens I've eaten within the past 10 minutes or so. It is not tied to a specific food...I'm always eating beef and potatoes together or pecan butter and honey together, and the symptom can happen directly after eating one without having the other in a while, or vice versa. No connection there that I can see. Part of that might be due to the fact that I often mistake mild nausea for hunger and will instinctively eat whenever something feels indiscernably "off" with my stomach.
My caretaker and I are agreed that if she's more than 5 minutes away when this symptom happens next then it's time to call an ambulance, since once I'm in that position I can't get fluids for myself no matter how much my life depends on it. We might end up calling one next time even if she is with me, because I lose fluids awfully fast and the pain is beyond excruciating, and each time it hits harder and lasts longer. My doctor agrees that it is a very serious situation and we are doing more tests. I just wish I had a clue as to how to stop it.
Any ideas?
In a nutshell, the symptom is acute onset of severe abdominal pain and uncontrolled vomiting and diarhhea. And by that I mean zero control over bowels - vomiting every minute or two and the diahhrea pouring out of me every time I heave. I didn't think it was possible to lose so much. I'm unable to sit up, much less stand as I'm just lying on the floor screaming my head off. I end up literally covered head to toe in vomit and feces. The most critical thing is to replace fluids and electrolytes during this time, and if I don't get it within a couple minutes of onset I begin passing out. I tend to have about 30 seconds of warning between the time I realize it's happening and the time I'm completely helpless on the floor. Once I reach that point I am incapable of doing anything, including getting fluids for myself.
The longest this symptom has ever lasted is an hour, after which I am perfectly fine aside from being completely exhausted and wanting to eat gently or not at all for a while to give my bowels a chance to recover. It happens about 2-3 times a year with a few months between episodes and is progressively worse each time. The last time it happened I was passing undigested food by the end of it.
For most gastrointestinal problems the first place you look is a person's diet and whatever other medications or supplements that person is taking orally. That's the problem - no such culprit can be pinpointed. I eat a grand total of 5 different foods - beef, potatoes, pecan butter, honey, and coconut oil - and each one has specifics on how it's prepared, cooked, processed, the source we get it from, etc. I occasionally try a few bites of a different food....this symptom has never occurred in correspondence with that.
And it isn't a problem with a certain batch of food or food poisoning, as we once suspected. I've eaten the same batch of food, the same jar, even leftovers from what I ate right before an episode and had zero problems.
As far as oral medications and supplements go, at one point I cut them all out to see if that would cause these episodes to stop. It did not. Also, in the years this symptom has been occurring I have completely changed my oral supplements and medications, so that I am currently not taking any that I was taking before, yet this symptom has continued its steady, predictable, progressive path.
What do you do with a GI symptom that can't be traced to anything you put into your mouth?!
I've had stool tests done twice in the past 5 years without showing anything significant, and am getting ready to do them again. My doctor's only guess at this time is a parasite issue, so that's loosely what we're assuming for now.
I first noticed the symptom a few years ago, but since it only lasted a few minutes and was just some vomiting and diarrhea at the same time along with brief but horrible pain I shrugged it off as a fluke or a bug or a food issue - certainly nothing to worry about. After a few times (that would be over the course of a year or more) I began to realize that this kind of thing had happened before, and took note of the circumstances surrounding it. When it continued I eventually mentioned it to my caretaker, cut out oral supplements in case one of them was causing the issue, but as it kept happening and became worse I began to require my caretaker to nurse me through the episodes. The first time she saw it she had the same thought that I did at first, that it was some sort of fluke that shouldn't happen again - and yet, it keeps happening! It's easy enough to forget inbetween episodes because it happens so rarely, and I don't have any other GI problems otherwise. But then it hits again...
We have tried charcoal (activated carbon) during these episodes, which should help if it is some issue of poisoning. One time we thought it had made a difference, but multiple times since then has shown no change and we now no longer use it.
So far every time it happens I've eaten within the past 10 minutes or so. It is not tied to a specific food...I'm always eating beef and potatoes together or pecan butter and honey together, and the symptom can happen directly after eating one without having the other in a while, or vice versa. No connection there that I can see. Part of that might be due to the fact that I often mistake mild nausea for hunger and will instinctively eat whenever something feels indiscernably "off" with my stomach.
My caretaker and I are agreed that if she's more than 5 minutes away when this symptom happens next then it's time to call an ambulance, since once I'm in that position I can't get fluids for myself no matter how much my life depends on it. We might end up calling one next time even if she is with me, because I lose fluids awfully fast and the pain is beyond excruciating, and each time it hits harder and lasts longer. My doctor agrees that it is a very serious situation and we are doing more tests. I just wish I had a clue as to how to stop it.
Any ideas?