Finally HOME and a few questions about feeding tube

After pretty much 2 weeks inpatient, and a great deal of that on liquids or NPO, with TPN and a feeding tube plus my revision surgery.....I AM HOME. Sigh...and it sure does feel great. So,  I can eat as of yesterday afternoon but have a feeding tube in the lower bowel for gravity bolus feeds of protein. The staph cleared up in my PICC, it was removed and another installed before my surgery Wed and now that one is gone, thank goodness.
The swelling is much better and heart palps are gone! I am sore still from the revision on Wed.
I am a bit concerned because I've not had a bowel movement since starting the feeding tube. It is connected to my lower bowel and it is also a good thing because I had horrible DH pre-revision but I think I am due one. The  gurgling and cramping is starting to get to me.
I'd love any advice on using my feeding tube and what to put in it. I have been using unflavored Unjury since being home as it's a carbfree, clean 20 grams and mix with water. I was on a machine with it at the hospital and some thick, carb laden crap. I was starting to wonder if I could put in a liquid gas med during my feed since I am so crampy right now.

Hi Charity,
Welcome home!  The feeding tube phase was awful for me!  Hated it! .....I used up all the crappy proteins I had in the house (mixed with water) and all the crappy proteins that my friends didn't like too.  I saved the good tasting stuff for later when I'd take it orally.  I mostly used the Nectars since they are zero carbs and fairly low calorie but ....really, not too worry.  You can't eat that much (or shouldn't really) with your new tiny sleeve so calories and carbs aren't going to get out of hands with the protein feeds.

I would add dry miralax powder to the protein mix and insert into the feeding tube (The nurse suggested it at the hospital).  It would take a bit of time but would always produce:)

Good luck!  Hang in there.......it only gets better!
 

Hi there,

Kindly could you please explain why sometimes people need to be put on feeding tube.                     
Sorry i havnt been following up your posts what revision surgery did you have?
Wish you feel better soon
Thanks

I was very malnourished and I chose a slight revision to lengthen my limbs on my original DS. I chose to revise because I was to have a very long road back to recovery on TPN and as well as who knows how many infusions, etc.... I had a very scary "episode" where my electrolytes were way out of balance and I went sort of nuts, in front of my kids and have no memory of the entire thing.
I would like to say that this didn't creep up on me. I knew I was having way to many bowel movements and having a hard time putting away enough protein but I kept it to myself out of fear of being told I'd need to revise or reverse my surgery. I was suprised at how bad it had gotten.
I hope that by being honest and sharing my story with folks, they'll feel more open to share with their health care providers so that it doesn't get out of control.

 So glad you are home.  I have to know, how many grams of protein were you averaging???  I am not quite 3 months out yet, and I am having a very difficult time getting my daily protein requirements in.  I am hoping this improves.  

" I was suprised at how bad it had gotten."

Fortunately, Charity, you came here and mentioned the problem and a whole bunch of us climbed up your ass and you FINALLY made a really good decision.

Thing is, the damned deficiencies themselves are what keep us--any of us--from making good decisions at exactly the point in time we need to make good decisions.  I think they see it more with RnY and Vitamin B deficiencies, where people get really, really nuts.  I mean, one woman in the medical literature was scheduled fro Electroconvulsive (aka Electroshock) Therapy when they finally figured out she just needed Vitamin B.

So...if MY memory isn't sketchy due to MY deficiencies...lol...this whole thing started when you were on a new job and didn't want to take time off during training and yet, your edema was so bad you couldn't even sit at a desk without elevating your feet and all that.  What's going to happen on that front?  Will you get a chance to go back? 

I owe you and many others on this board my life. It was the first place I opened up and felt secure enough to share how bad I was feeling and I got excellent advice, which I somehow was able to be sane enough to take.

The edema is still bad and I still have to have my feet up, but it takes a longer period of time to incur the same amount of swelling, so it's at least that much better. It was basically explained that it is due to protein deficiency and that the water leaks out of the cells...something to that effect. The heart palps are gone at least, so maybe the heart is getting stronger with the absorption of some protein. However, when I had the PICC line, I couldn't sleep on my side because it would cause my heart to flutter like crazy and now I can't sleep on my side due to recent surgery, so I can't test the theory that it was just my PICC yet.

My workplace said to get back in contact with them after I heal and they would try to get me in another training class.

OH folks, if you are not able to take in enough protein, water, vites....get with your Dr and get a plan for how you'll do it NOW. Do as I say, not as I had done.

 How deficient were you in your daily intake?  Did you keep track of your daily protein grams?  How many were you getting in????

Most days 80 or so. Bad days, about 60. Great days over 100.

 This totally scares me, cause like I wrote earlier, I am coming up on 3 months out, and I really struggle daily to get between 70 and 80.  I keep hoping that as I get farther out, it will get easier.  Right now, it is so hard.