Chances are this is the 50th feeding tube awareness post you’ve seen this week. In the midst of all the positivity and talk about how tubes save lives (because they do!), I wanted to share my *very* negative post about what you don’t know about feeding tubes until you really have a feeding tube—

1. Nasal tubes wreck your sinuses, and if you throw up too hard you’ll throw the tube up and it’ll go through your nose and out your mouth. This nasal damage is long term, and will leave you with actual nose pain.

2. Infections. I have nightmares and flashbacks of infections and mistake the pain for being in Hell. During the heat of them, sometimes it really feels like you’re dying. And after a serious infection, your stoma is wrecked. I have limited mobility in my lower torso because of the pain I have as a result of a bad infection.

3. Bile leaks. This picture is nothingggg compared to what I deal with everyday but I don’t have any pictures. I could fill 5 coffee mugs with all the leakage I deal with everyday. I haven’t met a lot of people who deal with this to the same severity and it feels like it controls my life sometimes. Tissues always stuffed in my waistband and bile spontaneously running down my thigh when I don’t catch it in time.

4. Your tubing gets caught on everything and then yanks on your abdomen and it hurts. Especially the kitchen drawers.

5. Sometimes tubes don’t stay in the right place and will coil up in your intestines. It’s painful and you have to have them replaced over and over.

6. Dangler tubes (what you get at first with new tube insertions) are so heavy!! You can’t usually get it switched out for the low profile tube for a few months.

7. Wearing pants or any kind of waistband that touches my feeding tubes is super painful. No body understands that until you deal with it yourself.

Sorry for the bummer post but man I wish I knew what I know now. Maybe you learned something new. Happy Feeding Tube Awareness Week 2022.

LOVE,

Jaime