Taking Life One Day at a Time

Wake up

Take AM Meds (linzess, claritin, cbd/cbg, famatodine, qvar, ondansatron)

Coffee flush and a few sips energy drink and cherry coke

Get dressed

**feeds

Drink 8oz coffee w/ 2tsp coffee syrup, 2 TB whipped powdered egg whites, and 3oz ripple milk

Drink rest of coke and eat a meringue

Drink 6oz coffee w/ 2oz ripple milk

*Eat candy corn, jelly beans, and ginger chews as needed

Go to work

Drink (first break): 8oz decaf coffee, 4oz ripple

Work

Drink (second break/ lunch): 6oz decaf coffee, 2oz ripple milk

Eat (also second break/ lunch): 1/3 cup instant mashed potatoes made w/ water, almond milk, egg white powder, chicjen boulion, and country crock butter

Also Drink (second break/lunch): 3oz green juice

Work

Drink (final break): 8oz decaf coffee, 3 oz almond milk, 1oz soylent

Work

Return home

Eat: 1/2 oz pork rinds, 1.5 TB light mayo, 2 TB strawberry basil vinegrette, 1/2 rice cake, 1/2 cup canned green beans

Drink: 1/2 cup almond milk, 1/2 cup coconut water, 1/2 cup beef broth

Eat: 1 Vanilla wafer cookie

Meds: azithromycin, qvar, famatodine, magnesium, nexium, multivitamin, and melatonin

Go to bed!

*eat candy and drink soda sips throughout the day to maintain hydration and blood sugar

** run continous feeds (vivonex rtf + kcl) for all waking hours of the day

Wake up

take AM meds (linzess, famatodine, claritin, qvar, cbd/cbg)

Drink 8oz energy drink, flush tube w/ 2oz coffee concentrate

Shower, get dressed, AM exercises (push ups, twists, sit-ups)

Weekly T injection

Drink 8oz coffee w/ 2TB chocolate syrup, 4 oz soy milk, and 2TB whipped egg white powder

Drink 6oz mountain dew, eat small handful candy corn

Hula-hoop

Drink 8 oz grape juice, 1/2 scoop collagen peptides

Go for short walk (enjoy the sun)

Drink 4oz decaf coffee, 2oz soy milk

Eat 1/2 protein bar, flush w/ 2oz chicken broth w/ added electrolytes

Go to work

Drink (on first work break) 8 oz coffee (decaf), 4oz soy milk

Work

Drink sips of soda as needed, ginger candies and jelly beans as needed

Work

Drink (on second break/ "lunch") 8oz coffee, 4oz soy milk

Work

Return home from work

Eat 1/2 oz pork rinds, 1/2 rice cake, 1.5TB light mayo, 1TB teriyaki sauce, and 1/2 cup canned green beans (if feeling up to the green beans)

Drink 1/2 cup almond milk, 1/2 cup coconut water, 1/2 cup beef broth

Take bedtime meds (azithromycin, famatodine, nexium, magnesium, qvar, melatonin)

Go to bed

And of course, run jejunal feeds the whole time (vivonex rtf w/ added kcl)

It's so hard as I miss food and I do so good during the day but at night I break down and eat all the things j shouldn't. In some ways its good as I'm finally gaining weight but it's also making me miserable. I'm ridiculously constipated for one thing and I keep choking on my vomit at night when I try to sleep.

I really just need more ordered eating in my life (I seem to eat at night out of stress/ boredom/ habit) and get my food in in a satisfying way during the day so I don't binge at night.

I want a normal life but I haven't been able yo eat properly due to gi issues for so long thar now I actually can eat some stuff (thanks to meds and better understanding of my gut) I'm completely lost.

Let's see if I can stick to this!

Wake up: 4oz diet mountain dew, meds

Shower

Flush: 2oz coffee, also ate 2 pieces candy corn

Breakfast: 6oz decaf coffee, 1/4 cup ripple milk, 1TB white chocolate syrup, 3TB powdered egg whites, 6 oz diet cherry pepsi

Snack(s): 4oz diet mountain dew, 6oz diet cherry pepsi, 1 ginger chew, 3 jelly beans

Started feeds: 500ml vivonex rtf, rate 49ml/hr, additional 40 MEQ KCl added

--drained off 6 oz--

Lunch: 6oz body armour drink, 6 oz cherry coke zero, 1/2 cup unsweetened cashew yogurt mixed with 2TB egg white powder, 2 jelly beans

(This has all been actually consumed, the rest is just planned)

Snack (before work): 6oz body armor, 4oz diet cherry coke

--start work--

Snack (first break): 6oz decaf coffee, 4oz ripple, 1/8 builder bar

Snacks (on the floor): more candy corn/jelly beans/ ginger chews

Snack ("lunch break at 8pm"): 8 oz decaf coffee, 2oz ripple

--end work (6 hour shift)--

Snack (bedtime): 2 popscicles, 1/2 cup pedialyte, 1 scoop collagen powder, 1 oz deli turkey, 1 meringue

Flush (down tube): 40ml water, 2 tsp walnut oil, meds (including mag citrate, omega 3 gummies, and a multivitamin)

Bedtime (hopefully by 2am)

Goals: less than 10,000 steps

Totals: 1,400 calories/ 85g protein/ 30g fat/ 199g carbs (66g sugar, 2g fiber)/ 1,431mg sodium/ 5,784mg potassium

I was actually doing pretty well, for a few weeks but then, things happened...

-I developed a fatty acid deficiency

-I got officially diagnosed with severe colonic dysmotility (and am now trialing new meds to address it)

-my metabolism sped up, leading me to get hungry at night and overeat things I shouldn't, which naturally led me to getting too stopped up to tolerate enough nutrition in the day time (and the cycle continues...)

So I'm going to try to hold myself accountable again, and force myself to stick to more structured eating habits.

9:30am- wake up

Intake:

10:15am- 6 oz coffee, 2 oz soy milk, 6 TB egg whites, 1 meringue, 1 ginger chew, 2 oz mountain dew spark

11:30am- 6 oz decaf coffee, 2 oz soy milk, 1 oz owyn elite protein shake, 5 pieces candy corn

12pm- start feeds, 500ml vivonex rtf, 44ml/hr

1:15pm- 8 oz decaf coffee, 2 oz soy milk, 2TB egg whites, a few bites chocolate pb builder bar, 1 popsicle

2:30pm- 4 oz decaf coffee, 1 oz soy milk, 1 oz owyn elite

4:30pm- 8 oz decaf coffee, 2 oz soy milk, a few bites pb builder bar, a whole bunch of df breyers oreo ice cream

5pm- half a banana/ pumpkin baby food thingy, 2 ginger candies, 2 popsicles, 1 pedialyte pop

6pm- 2 pedialyte pops, 2 popsicles

7pm- 6 oz cranberry juice, 4 oz spindrift, 1 partake bday cookie, more ice cream, 1.5 scoops collagen peptides

1am- 2 scoops collagen, 1 square dark chocolate, 2 popsicles

Activity:

Hula-hoop: 30 minutes

Walking: 3 miles (had to get groceries!)

Wake up: 9am

Intake:

9:45am- 4 oz bang energy, 6 oz coffee, 2 oz soy milk, 6TB egg whites (whipped in), 1 TB cotton candy coffer syrup, 1 meringue

11:00am- 6oz bone broth w/ ginger and maple syrup + extra boulion powder, a few jelly beans

12pm- start feeds, 500ml vivonex rtf, 44ml/hr

2pm: 10oz decaf coffee w/ 2 oz soy milk and a splash (1/2 TB???) Creme Brulee almond milk creamer (side note: I did NOT like the creamer, it made the coffee taste chemically and burnt but was free in the break room so I wanted to try it)

4pm: 8oz decaf caramel coffee w/ 4 oz soy milk, splash creme brulee creamer (still gross, why did I try it again???), a few bites of a builder bar, 1/2 partake cookie

5pm: a few jelly beans

6pm: 12 oz heated root beer, 1/2 partake cookie, a few bites builder bar

8pm: 10 oz lemon sparkling water mixed cranberry juice, 1 pedialyte pop, 3 popscicles, 4 pieces candy corn

1am: 2TB egg white powder, 1 scoop collagen peptides, 1 oz beef jerky (whoops ...), 1 popsicle, 6 jelly beans

Activity:

Work: 6.5 hours

Wake up: 10:30am

11:00am- 8 oz coffee, 2 oz flax milk, 1 oz soy milk, 6TB egg whites (whipped into the coffee), 1 tsp pumpkin spice syrup, 4oz bang energy drink, 1 caramel apple candy

12:00pm- 6oz coffee, 2 oz almond milk, 1/4 cup egg whites (in coffee), 1 meringue

12:30pm- Start feeds, 525ml vivonex rtf, rate at 43ml/hr

1-3pm: a few jelly beans

3:45pm: 12 oz decaf coffee, 4 oz soy milk, 1 peice dark chocolate (melted in drink)

6pm: 12 oz heated sparkling lemon iced tea (weird, I know...), a few bites of a chocolate builder bar

8pm: 12 oz decaf coffee, 4 oz soy milk, hazelnut syrup, 1 low fiber cinnamom graham cracker

9pm: a popscicle

12am: 3 popsicles, 3TB egg white powder, 1 pedialyte pop, a few bites of a pecan rx bar

Activity:

Work: 7.5 hours

Walking: 1 mile

Intake/sleep

10:30am: wake up, get dressed

11:00am: 8 oz coffee, 2 oz soy milk, 2 oz owyn, 6TB liquid egg whites, 1/2 cup bang energy

12:00pm: 3oz soy milk, 1 oz coconut water, 1 tsp banana coffee syrup, 1 meringue

12:30pm: start feeds

1-2pm: 5 jelly beans, 1 ginger chew

2:30pm: 8oz decaf caramel coffee, 4 oz soy milk

5:00pm: 12oz decaf coffee, 4 oz soy milk, 1 TJ's cinnamon graham cracker

7:00pm: 1 ginger candy, 6oz decaf cinnamon roll coffee, 3oz flax milk

7:45pm: 2 pedialyte pops, 1 popscicle, 1 candy apple heart, 6 jelly beans

8:30pm: 2 popscicles

12:30am: 1 wild berry peep, 5 prices candy corn, 2TB egg white protein powder, 3 popsicles

2:30am: bedtime

Activity:

-work: 5.5 hours casheir

Wake up: 4oz bang, 6 oz cherry coke, 1/4 builder bar, 4oz coffee, 1oz oywn, 1oz soy

12:30pm: 2 oz flush, 1/4 builder bar, 3 omega gummies

12:50pm: start feeds, 43ml/hr, 500ml vivonex + 22.5ml kcl

1:30pm: 6 oz coffee + 2 oz soy+ 2TB egg white

2pm: 8oz kombucha

4:30pm: 12 oz coffee+ 4oz soy

6:00pm: 12 oz cherry 7 up

7pm: 10 oz bone broth + extra boulion

7:30pm: 2 popscicles

Bedtime snacking: 1 pedialyte pop, 2 popscicles, 2TB egg white powder, 1/4 rx protein bar

Activity:

-4 hours casheir

-1 hour hula-hoop

Update/ reason for doing this:

I am starting to realize just how much more functional I am and how much more pleasant it is to be in my body when I get adequate nutrition. I recently have been diagnosed with intestinal dysmolity in addition to severe gastroparesis which explains why I struggle to even tolerate jejunal feeds. Luckily, I am in a "good phase" where I can tolerate some liquids and even some solids orally. But I am learning that I need to be careful, especially when it comes to fat and fiber as sometimes my stomach can handle more than my intestines can and I later pay the price and am unable to run feeds because my intestines are so backed up from what I ate. It is a bit of a conundrum.

December 22nd I was 66.6lb and my feeding tube got clogged. IR couldn't het me in that day and said they'd call back. They never did and we've been leaving messages with them ever since. My doctor put me on a new med (azithromycin) so I've been able to eat/ drink some stuff orally and have been managing around 1,000 calories a day without it so we determined it wasn't am emergency if I had to wait a day or two.

Well... then we were hit by a snow storm and IR was impossible to get ahold of... and then they finally told us they don't accept standing orders anymore and I'll have to wait several more days to get my NJ tube replaced.

The problem?

It's December 29th and I'm down to 61.7lb... that's 4lb in a week and it's not like I had any weight to lose!