5 years with a feeding tube

5 YEARS.

I don’t even know where to begin. as of this month, i’ve been living on 100% tube feeds for 5 years. That means I don’t take any food by mouth. For the majority of my first 4 years on tube feeds I had a GJ tube. It was trusty and it got the job done. Unfortunately at the start of this past year, I entered a new chapter of my medical journey when GJ tubes stopped working for me.
Starting in october 2020, my tubes started “flipping” or, “coiling” (twisting up in my stomach) everytime I had a new one placed. This happens to some people. i lost count, but i’m pretty sure i had around 7 tube replacement procedures between October and February. Which was hard already, but then you factor in allergic reactions to fentanyl and my mom not being able to come back because of the virus. It was horrible.

With GJ tubes not working, I had to move on to a different type of tube- a J tube (jejunostomy), in addition to switching my GJ for a G. I was warned by friends of mine how awful j tubes are, but I had no choice. Shortly after my separation surgery to place my J, I battled a vicious round of cellulitis pseudomonas that went into my blood stream. It was one of the worst times of my life.

Somehow (by the grace of God), I made it out, but things have been consistently awful ever since. I’m struggling to tolerate clear fluids, and have had to compromise feeds sometimes to get water. My J tube has continued to give me a hard time with surface infections, and wearing pants is harder than it’s ever been.

Normally for my “year” posts I try and talk about what a gift my feeding tubes have been to me in keeping me alive, but this year was just scary. So in place of an optimistic celebratory post, i’m leaving you with this. Hopefully it’s up from here❤️

LOVE,

Jaime