#intestinal failure

[wiserteriaoverbarefeet]

anyone know where i can make some jokes about my potential organ failure & impending demise because apparently facetime with my best friend who really wants me to live is not the place

[blindgamermisadventures]

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!

[aelianated-star]

Hypokalemia, hypokalemia when I catch you hypokalemia.. Having to get potassium chloride replacement should be considered cruel and unusual istg

[kittysthoughtsforu]

What is medical burn out?

For me this is what it looked like:

I stopped taking medications, I stopped running my tube feeds and I stopped showering and taking care of myself. I was so depressed I couldn’t stand the thought of my own life. Was I going to be tubes and wires forever? Was I able to accept myself this way? I almost changed my career path because I developed an aversion to anything medical. The thought of ever loving myself or my life was a far cry. It felt so unobtainable that it wasn’t even worth trying.

So what did I do? I got my feeding tubes removed and In the process of not taking care of myself, I went septic and almost died. I had an infection in my blood stream originally from my broviac. A broviac is a essentially a large more permanent IV. It went in through my chest into my major artery in my heart. It’s how I got my medications and nutrition. I didn’t want another one and had them leave it out after the infection was gone. I dropped 35 pounds in 3.5 months and tried everything to keep the weight on.

Every medication option and diet option I had already previously exhausted.

So now I’m sitting here by the phone. Afraid to call the nutrition program because I know they think I’m just a bad patient. I’ve been sick for my whole entire life ( 22 years) and was always a perfect patient. Medical burn out is not a joke or a thing to be taken lightly. I was taken to an inpatient psychiatric hospital and diagnosed with severe depression, anxiety, medical OCD, and medical ptsd. The toll it takes on your mental health is not talked about enough and is an important issue.

Please check up on your chronically I’ll friends and family. Support them and tell them you love them. We act a lot stronger than we feel sometimes.

[thelastwhimzy]

Hey, y'all -

Just got a call from my home health company. Hurricane Helene has disrupted a major IV fluid supplier. I was told that hospital-based settings and infusion centers aren't being restricted yet but home health appears to be - pharmacist said he should know more Monday. Just wanted to give a heads up to my IV fluid dependent peeps 🫶🏽

A BBC article on the subject -

IV fluid supplies in US disrupted by Hurricane Helene

A manufacturing plant that produces 1.5 million bags of IV solution a day has temporarily closed.

[cfoxy29]

Over this crap

I just can't take it anymore .. I thought I was doing well and I thought I was handling this illness but fuck it just keeps coming at me, whenever I think I can breathe my body has another round of "ha don't be silly, I am destroying you remember"...

[oonahildegard]

At home, home is good.  As of late last week we cautiously went up to 31mls per hr for 12 hrs on continuous feed pump and 15hrs PN at 700mls. Yesterday she had 2/3 poo's at most!  Surprising as she is as still snotty as can be.  Had to put an NG down at 2:30am last night and made her nose bleed :(