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Hey, guys, so I have a question with a bit of backstory:
I've had IBS since long before my ME started, but it obviously got much, MUCH worse when the ME started up. I've had my motility tested and it supposedly was normal but I have a lot of signs of very slow motility... It's not this bad all the time, but for at LEAST a few months out of every year I am nearly unable to eat or drink, constantly nauseous and vomiting, bowel disturbances, etc. My last bout had me drop nearly 30 or 40 pounds, and I was a healthy weight to begin with.
I've been tossing around the idea of possible intermittent tube feeding for years, since back when I had horrible, horrible food allergies (I've since grown out of them), but sometimes the idea of not having to stress about food and being able to just relax and not be in so much pain and discomfort is appealing. I think being on a mild, bland, liquid diet would help me a lot but I can't choke down shakes or protein bars or anything.
Would it be possible to voluntarily have a gastrostomy tube placed but only use it when I'm really bad off? And how would I go about presenting that to a doctor when I'm a healthy weight and I usually don't lose *that* much weight? I mean I maintain my weight, sure, but I'm miserable and my quality of life is null.
I should also add that I have a history of, when my ME flares really badly, total GI system shutdown. I mean my bowels stop moving, I can't hold even water down, all of it. Would a g-tube help me? I'm afraid I'm just being dramatic for "wanting" a tube, but it's not the tube that I want, it's the ability to not be in so much pain and discomfort...but I'm afraid a doctor would just call me crazy and send me out the door.
Are voluntary g tubes a thing? How much does it cost to have a g-tube and keep it up? Is this even a remotely good idea in the first place???
Thanks,
Lauren
I've had IBS since long before my ME started, but it obviously got much, MUCH worse when the ME started up. I've had my motility tested and it supposedly was normal but I have a lot of signs of very slow motility... It's not this bad all the time, but for at LEAST a few months out of every year I am nearly unable to eat or drink, constantly nauseous and vomiting, bowel disturbances, etc. My last bout had me drop nearly 30 or 40 pounds, and I was a healthy weight to begin with.
I've been tossing around the idea of possible intermittent tube feeding for years, since back when I had horrible, horrible food allergies (I've since grown out of them), but sometimes the idea of not having to stress about food and being able to just relax and not be in so much pain and discomfort is appealing. I think being on a mild, bland, liquid diet would help me a lot but I can't choke down shakes or protein bars or anything.
Would it be possible to voluntarily have a gastrostomy tube placed but only use it when I'm really bad off? And how would I go about presenting that to a doctor when I'm a healthy weight and I usually don't lose *that* much weight? I mean I maintain my weight, sure, but I'm miserable and my quality of life is null.
I should also add that I have a history of, when my ME flares really badly, total GI system shutdown. I mean my bowels stop moving, I can't hold even water down, all of it. Would a g-tube help me? I'm afraid I'm just being dramatic for "wanting" a tube, but it's not the tube that I want, it's the ability to not be in so much pain and discomfort...but I'm afraid a doctor would just call me crazy and send me out the door.
Are voluntary g tubes a thing? How much does it cost to have a g-tube and keep it up? Is this even a remotely good idea in the first place???
Thanks,
Lauren