Monday, September 26, 2016

PEG Tube (photos and medical details, so only read if interested)

Several people are fascinated/ have asked about the tube, so I thought I would explain a little bit.  Again, I got the PEG tube (Percutaneous Endoscopic Gastrostomy tube) after my first round of chemo went haywire and I was unable to eat or drink properly since my tumor started acting strangely in my mouth.  I was going to get the tube no matter what as a part of my upcoming surgery when they remove the tumor, so getting it early was not a huge deal.

Basically, it is just a plastic tube that has been inserted into the upper part of my stomach.  It has a clamp and I can use it to drink water, take medicine, and eat liquid food, kind of like juice boxes of Ensure.  If I am not able to eat at all by mouth, then I should be taking in at least 4 feedings a day plus added water.  Currently, I am eating totally normally by mouth, but I am still using the tube multiple times a day for water and sometimes medicine. I don't want it to get clogged or backed up so I make sure it is used a lot.

At the risk of sharing too much information, this is what it looks like:
This was one random day when I got dressed up and wanted to feel normal - my wig is hilarious - but you can see that stupid tube sticks out horribly and I don't like putting too much tape on my skin
this is the actual tube where it is inserted in my stomach - it is hard to show scale here, but this is the actual tube (this was the first picture originally, but I realized it showed up in my post so I switched it with the one above to not gross people out who didn't want to click on my link - hee hee)
this is what it looks like on a daily basis actually attached to me - I have these sterile pads I have to change every other day (it is an open hole so it has to be cleaned with special stuff) and you can see how long it is and how I have to tuck it up in my bra - it is really hard to hide it under clothes - and ever since I got it inserted, my stomach has been bloated and sticking out and hard to the touch - it is super sexy (obviously a huge concern of mine at the moment - but worth noting)
A company sends me the food and tube supplies every two weeks in the mail.  I have an IV pole that I borrowed from my Aunt Lynn (she uses it for her skeletons at Halloween - this makes perfect sense if you know her), and we hang a gravity bag for the food from it, which then drains down into my tube.  It feels super strange to have something pumped directly into your stomach.  Sometimes, it makes me really full and if I burp I can taste the formula.  So.  Gross.
my juice boxes of "food"
what my bathroom cabinet currently looks like - food, tubes, sterile bandages, it is super classy my life right now...
the syringe we use when we manually do water or medicine in the tube
my IV pole and one of the gravity bags after a feeding
in a strange twist, Violet thinks this is the coolest thing in the world - Dr. Hopper helps clean the tube, use the syringe, and basically wants to be a part of all the tube fun - it is cute - Jeremy has stayed far away so far, and that is okay too
my view when the food is being pumped in - I just sit back and relax while it goes in - it takes about 45 minutes to do a full feeding, but only 5 minutes when we just to water
The site where the tube goes into my stomach is the only issue I am having.  By this point, I was expecting to not need bandages at all and to have no pain.  Well, I still have pain and still need bandages that I have to change and clean every 2 days.  I am following up with the docs about this in a few days, but it is yucky.  I don't think I have a full infection or anything, I just don't think it has fully healed yet, which sucks.  Cleaning underneath that sucker is painful and I do not like it at all.

I cannot take a bath and when I shower, I have to tape a plastic bag over the tube so that the site does not get wet.  By the way, showering in general right now is just super strange.  I am always a little off balance and shaky, so that is fun, but I also have no hair and have a plastic bag taped to my stomach.  I am just really ready for all this crap to be over, but I know I am still at the beginning of this process.  Ugh.

Overall, I hate the tube and the fact that I had to get it early and how I am aware of it all the time - when I sleep, move, walk, cough, laugh, whatever.  But, I am grateful that I know dehydration will no longer be an issue for me - no matter what.  That was scary, so even if I go totally crazy, Brian or my mom or someone could still feed and water me and I could still get the chemo or whatever moving through my system.  And that is the ultimate goal, so I put up with this painful and gross huge plastic thing hanging off my body and try to make the most of it.  Really it is not that bad, and it gets more manageable every day.  I can do this.  I can do this.


  1. You can do this.

    But, it is also totally okay to complain when you need to vent!

    I love all of the details in the new posts! Keep posting!

  2. I will absolutely respect you if you tell me not to do this, but I really want to refer to meal times as feedings when you get back! Wish you could be here to hear about all the roommate conflicts we are dealing with... but we always have next semester :) <3