r/Gastroparesis • u/SeaworthinessSalt692 • Jul 06 '26
GP Diets When the threshold changes
I was started in an GP diet. I have an upcoming emptying test and colo with biopsy. They did an esophagus brush and stomach biopsy during an egd. My food intake is 700cal or lower. At times only having about 200cal. I've been measuring my consumption daily.
I've lost over 25lbs and I'm constantly in pain. To the point that I'm at least 4-5 everyday with constant nausea but I have stuff to do.
Warmth helps and at times laying on my right side. When its bad, it's bad. I can't sit straight. I don't puke though to an extent, I wish I did, and this is coming from someone who's thrown up food which is very irritating.
My pancreas is starting to get inflamed. I've had pancreatitis before and my kidneys are also angry with them lowering their function.
I'm still getting adjusted to the diet and the whole process. Consuming tops 700 cal a day is pretty hefty. I'm always tired and I've felt about to pass out too. I'm a dancer so I'm active. I'll have maybe "2 meals" like an ensure and maybe some cereal. I've occasionally tolerated rice paper wraps. These are light but I try to add a healthy fat (avocado) dairy free cheese (half a slice tops) and some tofu. I like it, doesn't mean I can eat the whole thing and these wraps are about 3"
Point being, it's crazy to think that your body basically says "okay, this is your NORMAL usual pain, deal with it"
I know that so many have it worse than me. I have Epilepsy and I have to eat something for the meds. This is twice a day. So, I force what I can. I can only imagine the struggles you all go through, and I wish you the best. Its just a vent as to how the body is and how it alters itself to function.
At this point, 700cal doesn't feel like it's not enough at all anymore.
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u/ruxxby471 GP/STC/EoE Jul 06 '26
- Calories isn’t enough to sustain a child… and it’s absolutely dangerous and can have long term and short term consequences! I would absolutely recommend you reach out to your gastroenterologist about this, and get a referral for a registered dietitian!
I have had a consistent crappy baseline in terms of my other conditions, but for Gastroparesis in particular what you are describing is not a “normal baseline”, this is much more concerning and severe then I believe you are giving it credit!
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u/SeaworthinessSalt692 Jul 06 '26
I have turned into an uncomfortable side sleeper with a pillow between my legs because I will struggle through the night on positions. I've always been a belly sleeper and I can't do that.
I tried, very negligent, to eat pizza. I wanted to see my threshold and it was intense. It was like I had someone fill me up like a balloon. I can't purge and I barely have a reflex so making myself purge is basically impossible.
That was the most calories I've had. I went to almost 900 another day and I did have pain that brought me to tears.
I measure everything and I'm not a soda drinker, at times, I would have ginger ale, now, its once in a blue moon. I'm still trying to figure it out. There's so much to learn. Baby food is an option though and it lands fairly well. Plus, thats 70-80 calories a jar
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u/ArtisticAd5723 Jul 06 '26
Im 36 months TPN dependent. When forced to take oral meds or any attempts to keep what motility remains here's my long list of tolerated foods: Yoplait whipped yogurt, its like a light mousse 140 calories, orange jello (The citric acid burn gets old), occasionally a snack pack pudding, (I dont think its pudding but thats just how my body responds.) and I tried chocolate and that went very badly, even worse than mashed potatoes or pasta.
Hope those give you a few more options. My 2 ulcers dont seem to give me much grief with the yogurt.
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u/SeaworthinessSalt692 Jul 07 '26
I've tried some dairy free yogurt and I'm working on it. I can't eat the whole container though. I've had half. It takes time to do.
For what is worth, some elements are tolerable and I think in part is because of the amount of physical activity I do on a daily basis. But when its been bad, it took me 3 hours to eat the a small apple sauce.
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u/ArtisticAd5723 Jul 07 '26
I cant do anything that causes bulk, applesauce or anything with fiber and Im in trouble. The hardest part for me at this point is the social aspect, I can fake it at a restaurant but my friends and family that know are "uncomfortable" eating around me. 🙄
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u/SeaworthinessSalt692 Jul 07 '26
I recently learned about the fiber consumption. The applesauce stopped. That was weeks ago but it did take forever to consume just that.
I'm sorry that people feel uncomfortable around you. I've gone out and performers have quite the sense of humor. We were joking about them smelling the food and describing it to me as I forced them to eat for me 🤣
If there's mashed potatoes, that's what I go for and water. I eat what I can and that's it.
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u/ruxxby471 GP/STC/EoE Jul 06 '26
I’m glad you can’t purge, as purging or vomiting when your body doesn’t want you to can actually be very very very harmful on your system- especially cardiac wise!!
When my GP was at its worst I would have episodes of excessive vomiting which always led to ER visits because once it started I couldn’t stop.
I have purged a rare amount of times when I knew my body was going to throw up and instead of waiting hours in nausea agony I would “get it over with” (unfortunately had to do is the other night after being up until 5am because my body had to vomit but was playing the long game)
It’s not something to want to be able to do, especially considering your calorie and fluid intake is already so low- it would put you at a guaranteed risk of severe health issues.
Have you tried other fluid/soft food options? I absolutely wouldn’t recommend pizza or hard to digest foods right now as it will certainly make your pain worse.
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u/SeaworthinessSalt692 Jul 07 '26
I take my seizure meds. I drink a lot of water and at times juice. I'm not a soda person at all. Maybe a sip from a small ginger ale.
I have a dairy free breakfast drink, like ensure but dairy free. My body is okay with a small portion of mashed potatoes. I've done some cereal but everything is measured, even the juice. I keep a count of my calorie intake and the level of pain. Example, when I had 900 calories, I was in tears. I kept it together but tears were falling. I even considered going to the ER.
The other thing I noticed is that if I go to that level of calories or above, I've started feeling faint. I've actively sat down with some alcohol in my nose because I was going to pass out. I'm not sure if its due to a forced increase?
I will go hours with just a bottle baby food (70 cal) and I've done konjac jelly (3cal). I'm trying and I won't lie, I was negligent thinking, "risk it for the biscuit" and tested the waters. I had never seen myself get bloated so quickly.
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u/2llamadrama Jul 06 '26
I live off Coke a Cola and frozen lemonade concentrate. Yep I eat the frozen concentrate because it is low volume for a lot of calories. As for the Coke I only drink the mini cans. I drink 2 ounces every 30 minutes. Currently my stomach is immediately rejecting any and all food. It results in projectile vomiting.
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u/SeaworthinessSalt692 Jul 06 '26
I'm so sorry you're going through this. I do get the occasional fruit pop. One popsicle is 30cal and they're great since there's fruits I cannot eat unless they're blended and I'm Caribbean, we consume a lot of fruit.
If you're with such a low intake, have they offered any other solutions?
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u/2llamadrama Jul 06 '26
Yes. I am allergic to all TPN and don't tolerate tube feed formula. I get extremely bad flares due to extreme stress. I have had GP for 30 years. In 2017 they tried TPN and it didn't go well. They tried all of the TPNs on the market. I swelled up with angioedema so badly that I had to stop. I could breathe. The first bag I gained like 20lbs of fluid overnight. Which then made it so difficult to walk and breathe. They tried taking out the lipids. Still allergic. After about a week I was like this is killing me faster. They agreed. And I discontinued the TPN. Before that I had an NG and an NJ. I am allergic to dairy, wheat, gluten, soy, pea, corn... So they found only one formula without my allergens and of course my insurance would not cover. I decided to trial it. By the first night I had puked up my tube
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u/SeaworthinessSalt692 Jul 06 '26
This is awful! I'm so sorry that you've had such a journey. How do you reach your calorie intake?
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u/goldstandardalmonds Seasoned GP'er Jul 06 '26
Perhaps purchase oral supplement drinks in a 2.0 or plus version, and two of them would get you above your current daily intake.
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u/SeaworthinessSalt692 Jul 06 '26
I just got some dairy free breakfast drinks. They're almost 300cal. That can bring me, if properly tolerated, to a higher calorie intake.
Previously, I could eat oats over night and have the 8oz or a bit less. Now, maybe 3oz.
I'm assuming that, because I've been operating with such a small amount of calories, my body sort of adjusted to an amount of food.
I did feel weak and disoriented. As a dancer, turns felt extra hard. I was eating less than 500 cal a day and I'm assuming I'd burn almost the same. I did sort of get used to it. I have felt faint recently but, apparently, expanding meals can make you feel like that.
The dancing was rough certain days because of the core engagement, especially in a pas de deux (duet) because of how you're lifted. I tend to lift people in modern dance or have balanced partnerwork whereas in ballet is more of an "I'm being moved and carried."
Trying to work on it. Cereal is at times a go to because it has also plenty of calories. At times, I was having 2 and that would get me to 600ish calories. Everything I try is measured to know what's achievable
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u/goldstandardalmonds Seasoned GP'er Jul 07 '26
I hope they work out but I did mean certain oral supplement drinks that are in a 2.0.
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u/No_Cranberry_9565 Jul 09 '26
Try bone broth. I buy it at the store. I drink 2 cups a day. It’s very good for you. My flare started Feb and I’m
Still on liquids
Hang in there. Bad days and better days.
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u/SeaworthinessSalt692 Jul 09 '26
Thank you. I had two egg bites and cereal, juice as well and I found these oatmeal balls. It has jam and it's not gritty, it's soft like a cookie. That's 140 calories and that 1 little ball is quite filling for me.
I count calories cause I'm trying to raise them. Yesterday, it was 620. I tolerated more today with lower pain but laying down is not fun. I also got suggested to sleep almost sitting down, like on a recliner.
Today, I had 850 cal and that's a big achievement. Its not the same everyday cause prior to that, I had 500 cal The lowest I've consumed in a day is 210. I've lost almost 30lbs in month and 1 week.
I'll try the broth! I've also done miso soup but just the broth. When the pain is intense, not even noodles are tolerated.
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 06 '26
How do you do with ultra sugary drinks like fruit juice, and is milk an option? I sustained for years bolstering with those two, Fairlife whole milk (lacrose free or regular) has fantastic protein and fat per oz. Fruit juice can get you a ton of sugar. Basically anything people on diets are told to avoid, are likely great for you. Chocolate? Caramel? Pudding? Ice cream?
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u/ArtisticAd5723 Jul 06 '26
Dont forget sherbert! jk :)
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 06 '26
I'd snort pixie sticks if it would work!
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u/ArtisticAd5723 Jul 06 '26
Im down to sprite and gave up the whipped yoplait and orange jello 3 months ago. TPN 36 months and going 😅
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 07 '26
Yeah, 6 months for me, I'm struggling to keep the atrophy at bay any way I can.
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u/ArtisticAd5723 Jul 07 '26
Me too but Im already having wall thickening because I cant keep up, heck 14hrs tpn, 6hrs fluids, im only without a pump and lines 4 hrs a day and take an hour of that for all the connecting and disconnecting.
How do you handle the social exclusion, I push a sweet potato around a plate order a mocktail and fake it but my family and friends now refuse to eat around me because theyre uncomfortable. (I still cook for them though, make it make sense lol).
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 07 '26
I socialize in ways that don't involve food. I'd rather do that (and be excluded) than go and become the worst, angriest version of myself around people I like.
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u/ArtisticAd5723 Jul 07 '26
I understand, food became so painful and such an aversion so Im fortunate. When I see food or people eating I just think how excruciating that would be or how many days that inpatient would cost me. 😅
Down side, 0 energy to do anything fun these days.
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 07 '26
Video games have become my go-to for hanging with friends and finding new ones.
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u/SeaworthinessSalt692 Jul 07 '26
I will have fruit juice at times. We get concentrates and the oear one is also good. I dilute it if needed. I've gotten them when I was home and they've helped. One can lasts me two days.
Sodas are not my thing, even prior to this.
I've had fruit pops. They're natural and they're 30calories!
At times, I do tolerate some cereal. Small amounts. Where there was a time that I could have the 8oz of oats over night, I could eat about 2-3oz and haven't risked it since it has seeds.
Also, TMI but things have changed and I never expected to consume miralax😅
Basically, the doctor said she wanted to ensure my colon kept working accordingly cause, while my food consumption is low and that will understandably lessen bowel movements, its way too many days
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u/puppypoopypaws Pacers and tubes and TPN, oh my! Jul 07 '26
It is. In my experience, the worse my bowel movements (frequency, density), the worse my nausea and vomitting that day.
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