Saturday, August 13, 2011

My Feeding "me magical and nourishing liquid sunshine" Tube

Well, after 2 months of trying everything I could to gain weight including medications, a botox treatment and multiple ways of taking in enough calories, I finally gave in and accepted that the feeding tube (G-J Tube) was the necessary next step.  I met with 3 doctors including my primary and GI in town as well as the GI at UW in Seattle.  All seemed to agree this was essential to at least get me back into a safe place with my weight.

The procedure was scheduled for August 10th at 8am. It is done through Interventional Radiology, less invasive than surgically implanting the tube.  My mom flew in the night before and sat with me watching a movie  while I sipped on the lovely barium contrast (aka liquid chalk), used highlight the abdominal area so they have a clear picture of where to go when inserting the tube.
After checking in at 8:00 I was taken back for vitals, blood work and prep for the procedure.  However, before actually going in they had to make sure the barium moved through completely, which of course with my slow as a hare digestive system, it had not.  So, I was to walk around as much as possible for the next 3 hours and then go in for another picture.  I was able to do this for about an hour before getting weak.  Walking around UW hospital is like touring an art museum.  The various paintings, sculptors and images were a perfect distraction.
Another picture was taken at noon and showed only moved an inch.  At this point the doctors were skeptical about it happening that day but said we could try again at 3.  This time instead of just merely walking, I went outside, sexy hospital gown and all, and practiced various yoga postures that have helped in the past with digestion.  By 3:00 the x-ray showed everything had moved through and was highlighted nicely.  Thank you to all of my yoga teachers and training!

I won't lie, the procedure itself was miserable and a bit painful, despite the conscious sedation.  It lasted about an hour and then I was returned to the room where I would stay overnight to be monitored.
The following morning a nutritionist stopped by to review my plan, what I could still eat during the day and what kind of formula would work best for the feeding at night.  She found one that is gluten and lactose free and that will, over the course of 6 days slowly build up until it reaches 1400 calories in a 12 hour feeding!  Despite the crazy idea that there is a strange tube sticking out of my small intestine, I actually felt excited at the though that between this many calories at night and what I could take in during the day will add pounds to my body.
After this things sort of went downhill.  The  infusion team came into show me how to properly use the machine and drain the tube 4x/day as well as proper care for cleaning.  When we tried the draining of the tube there was a blockage, not a good sign.  The IR doctor came into take a look and determined we needed to go back to the procedure room and figure out what was wrong.  So once again, I was put under sedatives, poked and prodded until they found what seemed to have been a kink in the tube underneath the abdominal wall.  It was apparently fixed and I was returned back to the my room for a 1 hour feeding to test it out.  All went well and by 8pm I was discharged.
BUT, it doesn't stop there.  My first night of feeding at home went well (as far as being 30, sleeping next to a worried husband and being hooked up to a tube can go).  Last night however, when flushing out the tube my mother and I discovered a tiny pinhole leak where water was bubbling out.  This was followed by an immediate panic attack and call to the hospital.  Within 10 minutes the doctor called back and said how sorry he was but unfortunately I will have to call on Monday morning and schedule a time to come in asap next week so they can go back in and replace the tube.  Until then he assured me there was no danger and to continue the feeding after covering the hole with waterproof medical tape.

My mother and I made a promise to each other that know matter how hard this gets we will not get discouraged.  I have to keep telling myself to just take it a day at a time and this too shall pass.  As the title says, this is not just any feeding tube.  It is feeding me magical and nourishing liquid sunshine, providing my body with everything it needs, including warmth and I will not let that image disappear.

I will post an update later this week after what I hope to be the last complication/ bump in the road.
Anyone who has had a J-tube please feel free to share your experience or if you have questions about mine I would be happy to give more details.



  1. Dearest Stephie, just reading this now...Lesley said you had called Friday at the office and she felt so bad she wasn't able to get back to you. The office seems to be non-stop these days, and it's so hard to find idle time anymore to visit...I'm anxious to hear how things shape up for you this week, so sorry to hear it wasn't 100% without a trial last week, but am so thankful your mom and wonderful husband are along side you for love and support and you know your dear friends are keeping you in their thoughts and prayers !! Much Love and healthy thoughts and prayers to you tonight sweetie, and as you said "this too shall come to pass" and it will...3 months you'll be able to look back in awe at what you have endured and be amazed at the strength you had to make it through, this I promise you !! hugs and more hugs,Suz

  2. Thanks Suz for the encouragement! As you can read in my newest post, I didn't have to go in for another tube so that is good news. I can feel the hugs and more hugs : )

  3. Thanks for the update post steph, it's nice to read what has been happening this last week in more detail. I really like the promise you and mom made, it is indeed wonderful. :)

    Love Jon