Tuesday, October 22, 2013

Confessions of a New Tubie

I'd just like to make some confessions real quick, that I'd really like to not have anyone know I said them, so I'm gonna hide behind my blog and say them anyway because no one knows who writes this, right?

1) When I was in college, and I was doing observations for classes in a severe and profound classroom I witnessed my first bolus tube feeding. This almost made me want to not be a special ed teacher or deal with special needs kids ever again because it seemed so disgusting to me. I was literally gagging. I don't know why. I had to leave the room because I loved the kid, he was one of my favorites. And I didn't want him to see me upset. This student was also my first student that passed away. I also associate that with tube feedings. I've been forever grateful I never had a student that had a tube feeding, I didn't think I could handle it. Now I have one. Joy.

2) It's almost a Shakespearean irony that we did this whole hey we're gonna give you a feeding tube so that you don't fall asleep when you eat so you can function better at school and in the process it forced me to go on leave from school because I missed too many days from the hospitalization and complications and recovery.

3) I'm really, really mad at my surgeon and my GI doctor for not helping me out in resolving my issues. Right now I can only get a maximum of 400 calories a day through my tube, and I can't eat by mouth much. That's not livable docs. Duh. And I really, really miss being able to eat whatever I want whenever I want (minus the stupid like issues I have while eating of course, but some food is better than no food).

4) Sitting around your room and watching TV all day sounds like living the dream, it's not. Trust me. I'm really bored, but then I get up and try to do things and it wears me out. So then I go back to doing it.

5) Bile is really, really disgusting. Especially when it is coming out of your tube. Onto your clothes. And it smells. And it's warm. And it makes me almost throw up. And this happens every time I have to access my tube for meds (at least 3 times a day) or to change the bag (1 time a day) or take a break for any other reason (5-6 times a day). And it's not normal. I also for the life of me cannot understand why no one is concerned about the fact that this is happening except me, my mom, and my support groups online.

6) I have had 3 separate nurses, un-prompted, tell me my "feeding tube" is actually a central line. I cannot wait until it gets changed to whatever the crap it's supposed to be so hopefully some of my complications can go away.

7) After having colitis for so many years and having to deal with the constant always having to rush to the bathroom all the time, words cannot express how many times in the past 3 weeks I have wanted to be able to go so bad. Because hey, when your intestines are paralyzed you can't do that and it really, really sucks.

8) I firmly believe that all dietitians should have a NJ tube at one point in their schooling so that when they are telling their patients that it isn't a big deal to have to go get it re-placed and to go out in society with it and deal with the constant annoyance of having it in your face for 24/7 they know they are lying.

9) I really do like that I can do some meds through my tube now. Especially the pain ones. They hit much faster that way. As long as they get absorbed and not spit out by the evil stupid backflowing tube.

10) No one really asked me or has asked me how this makes me feel emotionally minus like 3 people. Guys, this is life altering stuff. Food is so emotional. Especially for someone who spends most of her TV viewing on Food Network, is a dietetics student, loves to cook. This is hard. And it sucks. But no one asks you. They all just tell you you are being anxious and over reacting and it's no big deal and just wait 6 more days to see the doctor. That's just not acceptable to me. Why should it be? I don't understand. But I guess it's not up to me to understand right now.

11) That's an odd number to end on, right? I really hope my list of confessions of a tubie can begin to be more positive after my doctors appointment with my GI doc tomorrow. Hopefully when he sees it for himself he will come to his senses and do something about it and get it changed out sooner rather than later. Hopefully he will listen to me, he hasn't yet.

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