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the nasogastric tube SUCKS! i've had two during my four hospitalizations (complications from a prolonged leak). the j tube wasn't so bad. i did my feedings at 60 overnight but would have to do it for 12 hours. i couldn't stomach more than 60 for the rate or it made me ill. i did osmolite for a while, then switched to my premier Protein drinks (and added in a tbsp of olive oil as i was beginning to get "ashy"... seriously). i'm sorry you have to go through this, but it's better than being malnutritioned. at my lowest, i got to 130 and am 5'7. that is too small.... i'm about 140 now and holding.

oh and btw, i got a little bag that someone gave me and put my pump in there with the feeding bag made up and could just rock and roll whereever i wanted.

here's a tip that i never knew until i had my feeding tube: keep the small diet cokes or canned cokes in the house and do flush with that once a week, then flush the tube at least 3-4 times a day. make sure you do this or you could have "issues" if you don't....

you'd be surprised what you can acclimate to whenever you just have to.

i had my feeding tube from 12/14 (ish) to hmm, last week. i am so glad it's gone. i'm almost back progressed to chicken in my diet, but fish is my favorite right now.

best of luck!

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Stephanie

thank you so much for sharing your incredible journey. i thought mine was rough.38 days in with every complication possible. I was ok for about 3 weeks once my jtube fell out. already with the formula i am feeling better. dropped 2 # in a few days so my metabolism is getting better along with my strength. I keep re- reading your story and i am amazed at your strength. i will post thur after my consult with my surgeon. thanks again!!!!!! trish

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the nasogastric tube SUCKS! i've had two during my four hospitalizations (complications from a prolonged leak). the j tube wasn't so bad. i did my feedings at 60 overnight but would have to do it for 12 hours. i couldn't stomach more than 60 for the rate or it made me ill. i did osmolite for a while, then switched to my premier Protein drinks (and added in a tbsp of olive oil as i was beginning to get "ashy"... seriously). i'm sorry you have to go through this, but it's better than being malnutritioned. at my lowest, i got to 130 and am 5'7. that is too small.... i'm about 140 now and holding.

oh and btw, i got a little bag that someone gave me and put my pump in there with the feeding bag made up and could just rock and roll whereever i wanted.

here's a tip that i never knew until i had my feeding tube: keep the small diet cokes or canned cokes in the house and do flush with that once a week, then flush the tube at least 3-4 times a day. make sure you do this or you could have "issues" if you don't....

you'd be surprised what you can acclimate to whenever you just have to.

i had my feeding tube from 12/14 (ish) to hmm, last week. i am so glad it's gone. i'm almost back progressed to chicken in my diet, but fish is my favorite right now.

best of luck!

yeah, that cokeacola is our little secret when our patient's tube is clogged! thank you for your encouragement.....very helpful. I have an apt with my NUT 2-4-13 for my vit a def. (3 - too low for NJ out and J tube in). 2-25-13 is my next surgery date. Malnutrition sucks....the peptide Impact 1.5 is top notch and i already feel better. 15 hours at 70 ml/hour is my goal. not quite there yet plus 900 ml total of flushing. glad you are on the mend!!!!!!

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      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. LeighaTR

        I hope your surgery on Wednesday goes well. You will be able to do all sorts of new things as you find your new normal after surgery. I don't know this from experience yet, but I am seeing a lot of positive things from people who have had it done. Best of luck!

    • Alisa_S

      On day 4 of the 2 week liquid pre-op diet. Surgery scheduled for June 11th.
      Soooo I am coming to a realization
      of something and I'm not sure what to do about it. For years the only thing I've enjoyed is eating. We rarely do anything or go anywhere and if we do it always includes food. Family comes over? Big family dinner! Go camping? Food! Take a short ride or trip? Food! Holiday? Food! Go out of town for a Dr appointment? Food! When we go to a new town we don't look for any attractions, we look for restaurants we haven't been to. Heck, I look forward to getting off work because that means it's almost supper time. Now that I'm drinking these pre-op shakes for breakfast, lunch, and supper I have nothing to look forward to.  And once I have surgery on June 11th it'll be more of the same shakes. Even after pureed stage, soft food stage, and finally regular food stage, it's going to be a drastic change for the rest of my life. I'm giving up the one thing that really brings me joy. Eating. How do you cope with that? What do you do to fill that void? Wow. Now I'm sad.
      · 1 reply
      1. summerseeker

        Life as a big person had limited my life to what I knew I could manage to do each day. That was eat. I hadn't anything else to look forward to. So my eating choices were the best I could dream up. I planned the cooking in managable lots in my head and filled my day with and around it.

        Now I have a whole new big, bigger, biggest, best days ever. I am out there with those skinny people doing stuff i could never have dreamt of. Food is now an after thought. It doesn't consume my day. I still enjoy the good home cooked food but I eat smaller portions. I leave food on my plate when I am full. I can no longer hear my mother's voice saying eat it all up, ther are starving children in Africa who would want that!

        I still cook for family feasts, I love cooking. I still do holidays but I have changed from the All inclusive drinking and eating everything everyday kind to Self catering accommodation. This gives me the choice of cooking or eating out as I choose. I rarely drink anymore as I usually travel alone now and I feel I need to keep aware of my surroundings.

        I don't know at what point my life expanded, was it when I lost 100 pounds? Was it when I left my walking stick at home ? Was it when I said yes to an outing instead of finding an excuse to stay home ? i look back at my last five years and wonder how loosing weight has made such a difference. Be ready to amaze yourself.

        BTW, the liquid diet sucks, one more day and you are over the worst. You can do it.

    • CaseyP1011

      Officially here for a long time, not just a good time💪
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