Anybody else a "tubie"?

VividDawn
VividDawn Posts: 111 Member
My reason for gaining weight is because of chronic illness. Of my various health issues, one is a compacted stomach, which means I can't eat much at one time - or I get cramps/nausea. Even eating 6 times a day, I barely get 1800 calories. Soooo, I got a feeding tube to help. My goal is 3000ish calories, until I get to 90 pounds, then I hope I can drop down to 2500 for maintaining. That would be 1000 calories at night with my tube pump, then 1500 during the day with solid food (which is going to be way easier than 1800+)

I've slacked off on doing my daily diary logging, and I really need to start eating more than just junk food (I've had nothing but candy bars and cheesecake this last week... BUT I gained a pound!)

Replies

  • singingflutelady
    singingflutelady Posts: 8,736 Member
    I'm not a tubie but I have had tpn for extended periods of time when my Crohn's is flaring.

    How tall are you for 90 lbs to be your maintenance weight?
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Oh tpn is feeding through a picc line or port that goes directly in your blood and bypasses the gi system all together. I don't absorb nutrients (everything goes straight through) when flaring so I get about 2000 calories on that (it is non stop) plus clear fluids and some easily digestible food by mouth. I am not in a major flare at the moment so not on tpn.
  • VividDawn
    VividDawn Posts: 111 Member
    I'm 5'0". Never been over 90 lbs in my whole life (that's what I weighed in my prime, at 16 years old)
    My cardiologist doesn't want me to go above that, because too much body to support would put extra strain on my heart. But being under 75 (I am right now) also isn't good, because when I get sick THAT doesn't give me any buffer to rely on. When I do get sick and lose a couple pounds, it takes forever to put it back on.

    I got my tube on July 29, had some complications and only had formula at night... no eating during the day. By August 5th, I was down to 69 pounds. Luckily I was able to start eating food again, and this Monday I weighed 75! :) I forgot to weigh this morning, but the nurse is coming tomorrow to do a check, so gotta do it tomorrow anyway.
    I'm hoping to be 80 by my cardiology appointment on October 10th
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Good luck. I actually don't gain on tpn for some reason (I didn't on Prednisone either) but maybe going to the bathroom 30+ times a day would do that. I wasn't as low as you but I was 110 at 5'8. My meds are finally working so I am absorbing atm so I'm back at bmi 20.
  • VividDawn
    VividDawn Posts: 111 Member
    I was on the Depo birth control shot for years, everybody kept telling me it makes you gain 20 pounds... not me!
    I also got told that when I hit my 30s my metabolism would slow down and I'd gain weight easier... HA! I'm LOSING weight, and I'm almost 40 now, if I'm not careful about getting enough in me.

    The home health nurse came today to do a check up, and I weighed 75.2 YAY! I think I'll definitely reach my goal of 90 by the end of the year. Then maintaining is gonna take work too, I guess :/
  • LGM99
    LGM99 Posts: 1 Member
    I'm a tubie! Currently on tube feeds and TPN to get all my calories in. But I'm working on eating more. Today is the first day I'm starting to count the calories of my oral intake! Which is, like, 50ish for the day. And not enough to reduce what I get in my TPN or feeds. But it's not 0!
  • VividDawn
    VividDawn Posts: 111 Member
    Well, things are going okay... a couple of times in the last 2 weeks I got nauseated for a couple days and didn't eat much and skipped my pumping, so my weight is still hovering 74...give or take a pound. I've also been really tired, and sleep all day, so not eating as much.

    I'm going grocery shopping tomorrow, and plan to put a box of snack stuff by my bed, and try to at least get a little something every couple hours between naps.
  • Triathlete1502
    Triathlete1502 Posts: 103 Member
    Anyone knows someone on TPN with terminal cancer?
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Anyone knows someone on TPN with terminal cancer?

    No but I have been on TPN for other reasons (crohn's disease)
  • Hamsibian
    Hamsibian Posts: 1,388 Member
    This is an old thread, but is it possible to lift weights - even if it's just light ones - on TPN?
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