Life with a Feeding Tube

Wow, this is something different to get used to.  I was told when I had my revision nearly 2 weeks ago, that I had a feeding tube put in to help me fill the gap-kickstart my weight gain after surgery.  It’s certainly something to get used to and learn about. 

 

I have been in touch with home health nurses and dieticians who will help me to calculate my caloric needs, etc. to gain weight.  One of the problems I’m having currently is my flow rate is not that high, so I’m not getting the maximum calories in yet that my dr. wants.  So I’ve not gained any weight yet.  I’m working each day on trying to get my volume increased.  Sometimes it works, and sometimes it doesn’t.  I get really bloated feeling and it hurts.

 

So, anyway, tomorrow I have a follow up with my surgeon to get my stitches out.  My home health nurse said it looks like the tube they put in is just temporary, so I need to find out more what he has in mind for using this feeding tube for.  The discharge papers say to have it until I gain to 115 lbs.  That’s at least 23 lbs. away. I can’t see that happening in a couple weeks.  Maybe I’ll have to get a new tube.  The tube goes into my jejunum where things get absorbed immediately.  So, hopefully I can get my volume increased enough to start to see a gain of about 2 lbs. per week pretty soon. 

 

It’s strange to haul this poll around with me everywhere.  I have to live either upstairs or down, because I can’t carry the poll up or down. I’m too weak.  I have the pump on for nearly 24 hours a day, to give me the most intake possible.  I just have it off for showers and moving about the house.  Also, all my meds and extra water go directly into the tube. 

 

I still have not had a BM.  I’ve been using some laxatives the last couple of days to help it along, but nothing yet.  Please cross your fingers that things kick in and start working properly soon!

 

So, that’s my new thing to deal with. Let me know if you have any questions.  It’s been a real learning experience for me.

Wow Kim, I can't even begin to imagine what a feeding tube would be like.  Does it hurt?  Coming home from major surgery in itself is not a pleasant ordeal for anyone, but having the added burden of extra medical gadgets to deal with, must be really cumbersome and odd, especially if they're not doing what they are supposed to be doing.  I hope this gets fixed quick, that you gain your needed weight, and can finally get on with your life.  I'm looking forward to seeing you again at a get-together, all healed and fatter!  Take care. Donna 

Hi Donna.  No it doesn't hurt.  Thank goodness.  And I'm shoving stuff in it all the time.  Food (from my bag), water, meds.  I'm getting pretty good with dealing with a little dangly thing.  Hopefully he will put something more permanent in or find some way to secure this better.  It's only stitched to me with a couple stitches and it would hurt like heck if it gets caught on something and pulled out.

I've been following your story pretty closely and I just wanted to give you some support and encouragement.  I'm glad surgery went so well for you and that you are on your way back to being healthy.  Once you see your weight go back up I'm sure you'll be very happy you can get back to your life!  Well wishes heading your way, Biimbii

Thank you so much for your support!

Hi Kim!  Nice to hear from you!  How was your follow-up with Dr. D. today? Are you able to drink water or any fluids or suck on ice chips to keep your mouth moist while you're on the feeding tube? Perhaps your not having a BM for a while may mean that your body is adjusting to the revision.  Hopefully that is only temporary. I keep my fingers crossed that you will gain enough weight to get back up to the 120-125# range. Take care! (((Kim)))

Well got called away to emergency surgery yesterday so I didn't get to see him for long, except in passing in the hall where he swears he can see I gained a couple pounds, LOL!  I told him about some really bad acid reflux, and he told me to as for a different prescription for that, so I did.  I got to see his NP, Vicki.  I will go back next week to have my staples out.  I was thinking I would get them out yesterday, but that's ok.   I can drink water and gatorade.  I do get acid reflux, so it's been bad the last couple days, but today seems a bit better. And I had my first BM! Woo hoo!  Never thought I'd be so happy. LOL!  So everything is going well.  Vicki is estimating I will be on the feeding tube at least a month.  I get a new pump today.  A portable one, so I don't have to unhook when I go to appts.  That should be good.  And I get to start on full liquids.  I'm nervous about that, but we will see what happens this weekend.