Thursday, March 12, 2015

Who Knew?!?!

I was on the phone with my GI doctor the other day and made the comment that I never thought I would say it, but I am really liking having a tube in my nose. Not exactly something I ever planned on saying, but it's true!

I've had Herman 3 weeks now, and it is going well! The first week was rough...I was on a formula that I did not tolerate and I was adjusting to having the tube, so it was a challenge. Things are much better now. I was able to switch formulas which has made a huge difference in me being able to tolerate the feeds. I've been able to increase the rate that I'm running feeds which is good! My nose and throat are also much better. I still have some minor bleeding in my nose about every other day, but in general it's more or less "comfortable" and at times I forget it's there. My throat is also better and doesn't bother me much expect when it decides to feel like I'm being stabbed in the throat...but that only happens occasionally now.

So the feeding tube has been good! I also really like that I am able to get the nutrition that I need without having to force myself to eat and cause severe pain and nausea. Since having the tube placed, I have not needed to go to the ER (prayers that this streak continues!) and I have been able to control my symptoms at home. Yay!

Unfortunately, it's not all smooth sailing...

The stomach and intestines follow the same "use it or lose it" concept for all muscles in the body. Meaning, if no food is going into my stomach, there is a real risk of it shutting down completely...just to clarify, that is NOT good =P Even though I was having a lot of trouble eating, getting the NJ tube did not mean I was going to stop eating altogether, just that it took the pressure off of my needing to get all my calories from oral intake. So, that being said, I am still supposed to eat what I can with the tube to build my stomach back up to tolerating regular food and meals again. And that is where things are not going well...

When I try to eat anything solid (anything beyond smoothies, popsicles, etc.) my pain and nausea come back...not fun =( I have been able to control it at home with my medications since I am not eating large quantities, so we are thankful for that, but it's still discouraging to not be able to eat anything solid without being in pain and feeling like I'm going to throw up. If I only run the tube feeds and stick to clear liquids and smoothies, I feel great! It's just when I try to eat that things don't go well.

And that's where I'm at right now. I've had the tube for 3 weeks and am about half-way done. The plan was to have it for about 6 weeks for supplemental nutrition and transition back onto solid food while on the tube so when it's pulled I'll be more or less back on a "normal" diet. Please be praying that my stomach settles and I am able to start tolerating solids soon. It is great to not have the pressure of forcing myself to eat to get the nutrition I need, but I know that time I have the tube is limited, so we need to get the eating sorted out.

On a completely different note, I'm loving the warmer weather and hope everyone else is too! Yay for spring, although being in Ohio I'm still expecting another snow storm at some point...

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