AtypicallyRecovering

Photo- mine

Except for a month and a few odd days here and there, I had a NG tube to ensure enough fluid intake to protect my kidneys for the last 41 months, changing it out every 4-6 weeks as needed. It was only supposed to be in for the duration of a bladder infection, but that was early on in treatment, and with increased food (from my ‘normal’), it was too much volume to eat and drink, so the slower fluids via the tube helped. As a RN, I was trained in how to insert and manage NG tubes. ****** it is crucial that nobody who hasn’t had this kind of training attempts to do this on their own****** You could essentially drown yourself if the fluids aren’t going into the stomach, and make a detour at the spot where the esophagus and trachea share limited real estate.

At first, it was so helpful, and stayed that way for quite a while. Then my body started viewing it as the foreign object that it was, and I had horrible post nasal drip, sneezing, and coughing. I’d attempt to take it out periodically, but I seldom made it through more than 2 days without the tube, and struggled to get enough fluids and electrolytes into my system without it. I don’t mind drinking water, but then I had some bad labs come back, and my nephrologist told me that my labs were not normal and that the only way they end up like that is from not eating enough. He gave me 2 weeks to get more fluids and Liquid IV in, or I’d be admitted for IVs.

With the NG, I managed to get things back on track, at least for the time being. I got through a month of no tube, but then the colonoscopy prep wasn’t going to get in without it, so I put it back in for the test. I tried to keep the tube out, but the severe pain from the prep was awful, and frankly, it was traumatic. I’ve had trouble getting enough in again. I keep trying new things- teas, diabetic friendly drinks, some juices (if my carbs allowed for them), and broth based soups. I don’t mind drinking/eating those things, but I have trouble with “enough”.

So now, I’m at a crossroads once again. I have another day to get it together, or I’m going to have to put the NG back in for ‘topping up’ if I can’t drink enough. It’s SO frustrating to want to do things like a normal human being only not to be able to sustain it. I can’t risk my kidneys- that’s the bottom line. And yet, I can’t stand the tube and all of the snot that comes with it. So, I’m hoping that I do better for the rest of the night, as well as tomorrow. That’s my deadline.

Since I’m managing it on my own (every MD has seen it, and said very little). I KNOW I don’t “look” like I need it, and ideally, I’d be able to tolerate both food and fluids, but without the tube, something gets short-changed, and right now that’s food and fluids. The fluids I am drinking just fill me up too much, and then the reflux gets worse. With water with Liquid IV, I can let it go in slowly, and avoid the major bloating of 1/2- 1 liter of fluids in my stomach until they take their sweet time heading down the pipeline, so to speak. Low volume- high density foods help, but I don’t like eating like that. I’m more of a cheese board sort rather than someone who likes much on a plate.

I never thought I’d have that stupid tube for 3 1/2 + years, though i’m thankful that I could protect my kidneys with it. But I just want to move on with this, and do things like normal people do. Drinking fluids shouldn’t be that big of a problem. But I’ve never been great at drinking fluids, and growing up, we all had water with meals, but there wasn’t much talk about between meal fluid intake. I did drink a lot of diet soda for years, but quit that because of the nasty sweeteners.

But I’m working on this. It’s so much better in other ways without that tube.