hi there, i want to thank you for talking about gastroparesis and sharing your experiences with tube feeding. i may or may not have gastroparesis as well, my gastric emptying test was inconclusive, but my stomach issues are pretty disabling and i have wondered if tube feeding might someday be necessary for me. hearing about your experience makes it a lot less scary sounding! i wonder if you would be comfortable sharing a little more about how tube feeding has improved your health, and impacted your daily life (for better or worse)? are there things you can do now that you couldn’t have done before tube feeding, or vice versa? feel free to take your time answering, or not answer at all if it’s too personal. either way, i appreciate you!
I'd love to talk more about it!
I can empathize with your GES results. They can just end up being just a snapshot of your entire experience, and unfortunately they can just catch you on a "good" day where your emptying times are better. I know some people will intentionally trigger flares to get more accurate numbers on their study.
I'll preface with a little more information about me. I was misdiagnosed for 16 years with Cyclic Vomiting Syndrome and dealt with that and other vague GI diagnoses like GERD and IBS-D episodically and it gradually got worse over time. I was never given a GES until 2022. After I got pregnant and gave birth in 2020 I drifted into this pattern of daily morning vomiting, then I went into a flare last August that I never left. I was diagnosed with gastroparesis in Nov 2022, caught covid for the first time at the end of Nov, and got my tube Jan 2023.
Tube feeding has significantly improved by health. I was slowly dying from starvation ketoacidosis in December 2022. But even when I was eating orally I struggled with severe gastric malabsorption for years and often felt symptoms of malnutrition and saw minor malnutrition on labs and never understood why because I was eating, but because of fatphobia I was never given a GES and I was never taken seriously until I lost a significant amount of weight. In the most severe moments I was having constant diarrhea and vomiting and I've had so many hospitalizations due to dehydration and vomiting alone when I was eating orally.
I'm about 7 months in and I'm getting about 1300-1500ish calories a day, which is not my goal and it needs to be increased. But the difference with it being in my jejunum is that I'm absorbing 100% of those calories and it has helped my energy and my immune system so much. I've been able to significantly slow the weight loss while we investigate the root cause of my gastroparesis, as well as test for intestinal dysmotility. My hair is growing back, my nails are stronger, and I'm having general improvement of my IBS-D.
That being said, being on feeds and fluids, especially continuous feeds, it does impact my lifestyle a lot. I need accommodations at work. I can't let my feeds get over room temp or fluctuate temp too much. When my bags are full and it's in my backpack I'm carrying 2L of liquid and a pump, plus an additional medical bag with supplies. I even have to sleep at an angle to prevent aspiration. And the fun of stoma care. Cats also seem to have a taste for formula and tubing, which has banished my fur children from our bedroom at night. My medical supplies take up half of my dining room. It's certainly a major life change.
But without all of that, I would be dead. For a lot of us, being without alternate nutrition means either death or severe suffering from symptoms of gastroparesis. This is my symptom tracker for vomiting over the past year. You can see the stark difference between July-December and January-now.
This alone was enough for me to justify for myself that a medical device was necessary. Even without the starvation, I still have two hernias from vomiting and developed chronic gastritis secondary to the GP.
The one thing with tube feeding is that your digestive system is like a muscle. If you don't use it, you lose it. And I've definitely noticed a decline in my capacity to tolerate anything in my stomach for long, even liquids. I'm grieving this and learning how to live with this because there isn't an alternative for me at this moment. I'm still trying, I use the gastric port to drain a lot just to keep what little of my stomach's function it still has.
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Wellness Wednesday:
The Groundhog Day Diet
Sunday I officially started my Groundhog Day Diet (the same daily meal on repeat). Obviously the name of the diet stems from the 1993 Bill Murray film, but the month long challenge was more inspired by Morgan Spurlock's 2004 documentary, Super Size Me (a challenge to eat McDonald's for 30 days straight).
I settled on the following specific daily foods for the month:
Lunch:
Turkey & Swiss Sandwich, a Side of Baby Carrots, a Cup Peaches
Snack:
A Serving of Trail Mix
Supper:
Bowl of Soup and a Glass of Milk.
All ^that^ comes out to approximately 1,290 Calories.
Now, I didn't necessarily do this to keep better tabs on my calories - no - I merely did it to see if I could do it - or - better yet see how long before my tongue goes mad.
As well, I am hoping this "diet" will assist my pocketbook as I have planned out my meals, purchased a large majority of all my fixings, thus hopefully minimizing my grocery bill for the month of October. The only items I forsee having to purchase is fresh Turkey, Bread, Milk, and Carrots.
So far, 4 days in, things aren't too shabby. I wish I would have thrown in some popcorn to booster my snack intake... but... I'll know better for next time.
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40th CHECK-IN:
Current Goals:
Lose 52 lbs
Completed as of 4/12/2023
New Goal: Maintain or Continue on The Weight Loss Path
Avoid "Junk Food"
Minimize Take-Out / Fast Food Consumption
Short Term:
Vegetarian-ish Diet: Completed
End Date: 4/09/2023 - 46 Days Total
Groundhog Day Diet:
10/01/2023 - 10/31/2023
Eat the Same Thing Each Day for 31 Days
*Not Photographed*
Turkey Deli Meat, Wheat Bread, Swiss Cheese, Milk.
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Stats from August:
Food:
Leftover Meals: 20
Oranges: 20
Salads: 18
Bags of Popcorn: 17
Cans of Soup: 9
Take Out: 0
Candy/Sweets: 0
Workout:
Jumping Jacks: 12,800
Push-Ups: 3,200
Glute Bridges: 3,200
Reverse Leg Lifts: 3,200
Leg Kickbacks: 3,200
Sit-Ups: 3,200
Squats: 800
Plank (mins): 160 mins
Assisted Push-Ups: 0
Weight Loss:
Weightloss This Month: -1.0 lbs
Average Weightloss per Week: -0.25 lbs
Total Weightloss: -85.6 lbs
Entertainment:
Movies Watched: 19
Favorite from the Month:
They Cloned Tyrone
"TV":
Hours of Television Watched: ~ 40 hours ( How To with John Wilson, Modern Family, Outer Banks, Ink Master, Muscles & Mayhem, Only Murders in the Building, Ms. Marvel, Detriot Lions vs KC, Detroit Lions vs Atlanta, Detroit Loins vs Green Bay)
Books:
Books Completed This Month: 0
Book Title(s) Completed This Month: -n/a-
Book Total for the Year: 2
Comics:
Comics Completed: 4
Trades Completed: 7
Comic/Trade Titles Completed:
Lumberjanes Vol. 1
Amazing Spider-Man Masterworks Vol. 1 (Marvel Masterworks)
Chew Vol. 3: Just Desserts
Deadpool by Skottie Young Vol. 2: Good Night (Deadpool (2018-2019))
Teenage Mutant Ninja Turtles: The IDW Collection Vol. 3
Teenage Mutant Ninja Turtles: Saturday Morning Adventures (2022-2023) #1
Teenage Mutant Ninja Turtles: Saturday Morning Adventures (2022-2023) #2
Teenage Mutant Ninja Turtles: Saturday Morning Adventures (2022-2023) #3
Teenage Mutant Ninja Turtles: Saturday Morning Adventures (2022-2023) #4
New X-Men by Grant Morrison Vol. 1: E Is For Extinction (New X-Men (2001-2004))
Spider-Man/Deadpool Vol. 0: Don't Call It A Team-Up (Spider-Man/Deadpool (2016-2019))
Favorite Comic/Trade Read:
Deadpool by Skottie Young Vol. 2: Good Night (Deadpool (2018-2019))
Magazine(s):
Magazine(s) Completed: 0
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Meal Tracker:
THURSDAY
Lunch:
(2) Hotdogs
Individual Cup of Bob Evan's Macaroni and Cheese
(1) Glass of Chocolate Milk
Snack:
Bag of Ranch Corn Nuts
Bag of BBQ Corn Nuts
(4oz) Bag of Sahale Snacks Pomegranate Vanilla Flavored Cashews Glazed Mix
(4oz) Bag of Sahale Snacks Pomegranate Flavored Pistachios Glazed Mix
(1) Glass of Chocolate Milk
Supper:
Can of Progresso Creamy Tomato with Penne
- 10 Crackers
(2) Grilled Cheese Sandwiches
(1) Glass of Chocolate Milk
(2) Small Oranges
FRIDAY
Lunch:
Bowl of Leftover White Chicken Chili
- 10 Crackers
(1) Grilled Cheese Sandwich
Snack:
Bowl of Wonderful's Shelled Sweet Chili Pistachios
(4oz) Bag of Sahale Snacks Pomegranate Vanilla Flavored Cashews Glazed Mix
(4oz) Bag of Sahale Snacks Pomegranate Flavored Pistachios Glazed Mix
Supper:
Individual Cup of Bob Evan's Macaroni and Cheese
SATURDAY
Lunch:
Skillet Chicken Quesadilla
- Leftover Chicken
- Busch's Taco Fiesta Black Beans
- Uncle Ben's Spanish Rice
- Shredded Mild Cheddar
- Good & Gather's Queso Blanco
- Side of Sour Cream mixed with Herdez's Street Taco Rojo and Verde Sauce
Snack:
(2) Individual Bags of Sahale Snacks Pomegranate Vanilla Flavored Cashews Glazed Mix
(2) Individual Bags of Smartfood's White Cheddar Popcorn
(1) Glass of Pumpkin Spice Flavored Milk
Bag of Black Jewel Popcorn
(1) Colorado Peach
Supper:
(2) Skillet Quesadilla
- Leftover Chicken
- Leftover Busch's Taco Fiesta Black Beans
- Leftover Uncle Ben's Spanish Rice
- Shredded Mild Cheddar
- Good & Gather's Queso Blanco
(1) Glass of Pumpkin Spice Flavored Milk
SUNDAY
Lunch:
Turkey & Swiss with Toasted Wheat Sandwich
(5) Baby Carrots
(1) Cup of Del Monte Peaches
Snack:
Serving of Good & Gather's Tex Mex Trail Mix
Supper:
Can of Progresso Lasagna Style Soup
- 10 Crackers
(1) Glass of Milk
MONDAY
Lunch:
Turkey & Swiss with Toasted Wheat Sandwich
(5) Baby Carrots
(1) Cup of Del Monte Peaches
Snack:
Serving of Good & Gather's Tex Mex Trail Mix
Supper:
Can of Progresso Lasagna Style Soup
- 10 Crackers
(1) Glass of Milk
TUESDAY
Lunch:
Turkey & Swiss with Toasted Wheat Sandwich
(5) Baby Carrots
(1) Cup of Del Monte Peaches
Snack:
Serving of Good & Gather's Tex Mex Trail Mix
Supper:
Can of Progresso Lasagna Style Soup
- 10 Crackers
(1) Glass of Milk
WEDNESDAY
Lunch:
Turkey & Swiss with Toasted Wheat Sandwich
(5) Baby Carrots
(1) Cup of Del Monte Peaches
Snack:
Serving of Good & Gather's Tex Mex Trail Mix
Supper:
Can of Progresso Lasagna Style Soup
- 10 Crackers
(1) Glass of Milk
.
.
Workouts:
THURSDAY
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges [4 sets of 25]
(100) Push-Ups [10 sets of 10]
(100) Reverse Leg Lifts [10 sets of 10]
(100) Leg Kickbacks [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(5 min) Planks [5 Sets of 1 min]
FRIDAY
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges [4 sets of 25]
(100) Push-Ups [10 sets of 10]
(10) Reverse Leg Lifts [10 sets of 10]
(10) Leg Kickbacks [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(5 min) Planks [5 Sets of 1 min]
SATURDAY
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges [4 sets of 25]
(100) Push-Ups [10 sets of 10]
(100) Reverse Leg Lifts [10 sets of 10]
(100) Leg Kickbacks [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(5 min) Planks [5 Sets of 1 min]
SUNDAY
* Afternoon Workout *
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges [4 sets of 25]
(100) Push-Ups [10 sets of 10]
(100) Reverse Leg Lifts [10 sets of 10]
(100) Leg Kickbacks [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(5 min) Planks [5 Sets of 1 min]
* Evening Workout *
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges [4 sets of 25]
(100) Push-Ups [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(100) Reverse Leg Lifts [10 sets of 10]
(100) Leg Kickbacks [10 sets of 10]
(5 min) Planks [5 Sets of 1 min]
MONDAY
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges [4 sets of 25]
(100) Push-Ups [10 sets of 10]
(100) Reverse Leg Lifts [10 sets of 10]
(100) Leg Kickbacks [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(5 min) Planks [5 Sets of 1 min]
TUESDAY
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges [4 sets of 25]
(100) Push-Ups [10 sets of 10]
(100) Reverse Leg Lifts [10 sets of 10]
(100) Leg Kickbacks [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(5 min) Planks [5 Sets of 1 min]
WEDNESDAY
(400) Jumping Jacks [8 sets of 50]
(100) Glute Bridges[4 sets of 25]
(100) Push-Ups [10 sets of 10]
(100) Reverse Leg Lifts [10 sets of 10]
(100) Leg Kickbacks [10 sets of 10]
(100) Sit-Ups [5 Sets of 20]
(5 min) Planks [5 Sets of 1 min]
.
.
WEIGHT TRACKER:
Starting Weight (Noon, 1/01/2023): XXX.X lbs
Weight at Last Check-In, 9/27/2023: -0.8 lbs
Weight As of Noon, 10/04/2023: +1.0 lbs
Total Weight Loss: -84.6 lbs
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.
Closing Thoughts:
The Good:
Had an opportunity to take PTO in the middle of the work week. Using it for some R&R.
The Bad:
I quasi wish I included a daily bag of popcorn in to my Groundhog Day Diet... You Live and You Learn.
Gained a pound - which put be under 85 pounds of weight loss.
The Ugly:
I have insane pain in my lower leg/shin. Been icing my leg throughout the day.
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Weight Loss Tracker
So,, I decided to create an accountability post to help me stay on track. I'll be updating it monthly. I don't care how much weight I'm losing, as long as I'm losing 🤧 I had this in my notes but was too hesitant to post...until now. I'm afraid that people will judge me because I'm starting out on a much heavier weight 😔
The point is to set smaller, realistic goals every month instead of big ones (because I get overwhelmed so easily 🙄) so it'll encourage me instead
Goals for 2023
Height: 166 cm
HW: 176 lbs / 80 kg
SW: 173 lbs / 78.5 kg
GW's: 154 lbs / 70 kg, 143 lbs / 65 kg, 132 lbs /60 kg, 121 lbs/ 55 kg
UGW: 110 lbs /50 kg
February 2023
SW: 173 lbs / 78.5 kg
GW: 165 lbs / 75 kg
EW: 162.7 lbs /73.8 kg
Weight Lost: 10.3 lbs or 4.7 kgs!
Note: I'm glad I lost something, but it's probably just water weight :/ losing fat is gonna be harder which is...yikes :(
March 2023
SW: 162.7 lbs / 73.8 kg
GW: 156.5 lbs / 71.0 kg
EW: 159.6 lbs / 72.4 kg
Weight Lost: 3.1 lbs or 1.4 kgs 😩
Note: I've mostly been maintaining last month smh
April 2023
SW: 159.6 lbs / 72.4 kg
GW: 152.1 lbs / 69.0 kg
EW: 157.9 lbs / 71.6 kg
Weight Lost: 1.8 lbs or 0.8 kgs
Note: Not bad since I've been eating over 1.5k calories almost everyday (but still under 2k and working out most days per week) I think I gained some muscles too 💪🏼
May 2023
SW: 157.9 lbs / 71.6 kg
GW: 152.1 lbs / 69.0 kg
EW: 156.5 lbs / 71.0 kg
Weight Lost: 1.3 lbs or 0.6 kgs.
Note: AHHH why is it so slow 😭 it could be that I'm gaining muscle since I workout so much more than usual but I wanna get lighter too
June 2023
SW: 156.5 lbs / 71 kg
GW: 147.7 lbs / 67.0 kg
EW: 145.3 lbs / 65.9 kg
Weight Lost: 11.2 lbs or 5.1 kg
Note: Feels good seeing some progress!
July 2023
SW: 145.3 lbs / 65.9 kg
GW: 138.9 lbs / 63.0 kg
EW: 147.3 lbs / 66.8 kg
Weight Lost Gained : 2.0 lbs / 0.9 kg
Note: I've been mostly eating around 1000-1500 calories this month 😳😳 I'm surprised I only gained 2 lbs overall lol
August 2023
SW: 147.3 lbs / 66.8 kg
GW: 140.0 lbs / 63.5 kg
EW: 143.3 lbs / 65.0 kg
Weight Lost: 4 lbs / 1.8 kg
•────•──────────•────•
March 2024
SW: 146.2 lbs / 66.3 kg
GW: 139 lbs / 63.0 kg
EW: 142.2 lbs / 64.5 kg
Weight Lost: 4 lbs / 1.8 kg
April 2024
SW: 142.2 lbs / 64.5 kg
GW: 137.0 lbs / 62.1 kg
EW:
Weight Lost:
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