This has been one hell of a week. Where do I even begin?
My mother pitches a fit if I don’t eat with the family because it doesn’t feel like I’m “taking part of the family”. Thing is, I am NPO on a feeding tube.
Since I currently have only a “functional” (Most offensive term ever. I can promise you I am not functioning.) condition both professionals and my parents believe I am making a “mountain out of a molehill” and should just get over it and eat.
I also miss food. It’s so rare I eat, not only because of the excruciating pain it causes, but because I have such intense early satiety. I eat a couple bites and I am as full as if I ate a holiday meal. In addition I can feel the food backing up my oesophagus and throat. I have a hard time swallowing too.
So yes I miss food, but I know I cannot eat. Yet my mother’s wrath is not to be trifled with, especially when I am so low on energy. I caved anew ate around a a cup of mashed potatoes and a sliver of homemade sourdough bread.
Well…it was coming out of both my G and J tubes for the next two days. My CNA who helps me daily could see what I ate. It smelled like vomit. (Which I so badly wanted to do due to pain, but I am unable to do so.) I was awful. I was so nauseous. In so much pain. And worse of all I was constipated.
This may be considered TMI, but I don’t care. In multiple tests it’s been documented that I have constant stool burdens at the end of my small intestine and beginning of my colon. I am currently on linzess, but it isn’t helping.
I poop brown smelly water. Even my CNA said this looks like intestinal failure. Yet because I only have a functional diagnosis the ER won’t accept me until I am running a high fever. I have a low grade one, but nope. Still not good enough.
On top of that my feeding pump ( a Kangaroo Joey) stopped working yesterday. I called my feeding tube supplier about sending me a new one. They said it would arrive at noon.
It hadn’t. I called back asking when it would arrive and they said someone signed for it. So I asked all around my apartment complex asking where it was. Nobody said they had it. So I called again. Apparently it SOMEHOW got sent to the wrong place. So they will be sending me one…sometime. Tonight my CNA is going to help me use a gravity bag. I only used one once and it gave me really bad diarrhoea so hopefully we can find a speed that works for me.
So…those on feeding tubes, intestinal failure, and TPN…I need advice. How do I get help? I have been on a feeding tube since January and I am STILL underweight and malnourished. I am not running my full feeds because it burns and the pressure buildup is too much to handle. I already explained about my constant stool burdens and overflow problem. When and how do you bring up the topic of at least trying TPN? How do you get diagnosed with Chronic Intestinal Dysmotility? I know for a fact that is what is going on yet my GI refuses to let me get a Sitz Marker Test because it’s so expensive and intensive. I am suffering and at my whits end and don’t know what to do anymore. Any advice would be greatly appreciated!
