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Anyone with a feeding tube, how did you get one?
I have severe AMAG and gastroparesis. Ability to eat has slowed down. I started losing weight, but more than the weight is the muscle and fat wasting away. Energy is gone. Starting to have all these weird things going on and I am losing my quality of life rather quickly. All they want to do is throw more meds at me, which take away the little I do have as far as life goes. I want it back, not to be a drugged up vegetable. All I need is the ability to have some nutrition so I can be active. Insurance denies for months some drugs. All I can do is take antidepressants, I tried them all at this point. They make me sleep and make me wanna eat even less.
All I am asking for is my life back and to not look in the mirror and see a stick figure. I am not all that bad yet, but I do not recognize myself.
From what I read, most end up with a tube and seems they did not have this much trouble getting one.
So what made you finally end up on one? I am tired of begging and wasting away in the meantime. I may not be the ideal candidate, but I can not eat more than 300 cals a day and I get about 10 grams of proteins or less. Been months and months like this, no matter what meds they give me. Starting to get scared.
Nobody is hearing me though. Should it be this hard? I am done with starting and stopping meds. Last thing I want it to sleep all day and wanna eat even less.
I want my life back to an extent.
Thanks for sharing how hard it was for you guys! Means a lot to me.
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You would think so. I can accept food but it does not stay or digest correctly. Even liquid diet causes stomach flu like symptoms. And I get only 300 cals a day on a good day. Been going on for months as I waste away. My other specialist are asking them to do it and are quite concerned, but the gastro docs just wanna try another med, which so far only makes feel worse. It is starting to get too scary to keep playing games with them.
You need to take control to get them to stop experimenting with you.
Jumping in here, out of my range of experience as a patient - but wondering if there is hope in trying this new medicine? How long until you can expect any positive results.
Is it possible that the GI is looking for the underlying cause, thus avoiding a feeding tube?
I know you said you had trouble with liquids but have you tried the High Calorie Ensure? It has 355 calories and the chocolate flavor goes down well for me. A nutritionist recommended this when I was losing weight rapidly from chronic nausea. It helped stabilize the weight decline, along with some other therapies. It is worth a try while you are waiting to figure out your next step. Hang in there @gastrogirl!
@gastrogirl Just another note regarding high calorie shakes: Boost has one with a whopping 530 calories, but I couldn’t handle the taste and, soI stuck with Ensure Plus chocolate.
Hah! Hi and ty so much. I have three of the boost left in my fridge. Very high calorie plus protien but they stick right in my throat. I also can not handle the taste and thickness. But I have the ensures right now. I drank one today and am struggling to keep it down. Then I get the runs with this nausea. I was drinking two of these a day but lately I struggle to get an entire one down all day. I have to sip and put it back until I finish it.
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1 ReactionThe meds they put me on not only make me sleep nonstop, but lower my blood pressure too low and dizzy plus they take away my ability to eat at all. I have medication hypersensitivity...possible mast cell. I tried them but stopped being able to eat or drink let alone wake up and move. No they are done looking for causes. I know them. They say nothing can be done about it. So now trying to keep me going. Guess they are trying to exhaust every ave.
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