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Do gastroparesis symptoms slowly creep up on everyone?

Posted by Brewnews @brewnews, Jul 20, 2023

I am not diabetic nor do I have blood sugar problems.
This Spring (2023) I started getting full after only a few bites. After awhile, constipation became an issue followed by waking up so hungry I wanted to throw up. 6 weeks ago the nausea and vomiting began, particularly after eating. On bad days it’s 4-5 vomiting episodes and after every “meal” I go through a crazy routine of trying to keep food down. I’ve lost 20 lbs in 6 weeks & ended up in the ER.
Is the slow buildup of symptoms typical of gastroparesis? I’m a healthy 57 year old woman with chronic MDD which is currently under control so I have no idea how I developed gastroparesis. I’ve discovered that bananas & Fresca are life savers!
Any input &/or advice is greatly appreciated. Thank you.

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Profile picture for denisef
denisef | @denisef | Nov 7, 2022
In reply to @kamama94 "@denisef, hello. Although I would prefer to do otherwise, I drink Boost every day and eat..." + (show)
Profile picture for kamama94 @kamama94

@denisef, hello. Although I would prefer to do otherwise, I drink Boost every day and eat only very soft or mashed foods and purees. Otherwise, food "sits there" with unhappy results.

I can totally relate to your frustration but have been coming to terms with my new reality, albeit slowly. Like you experienced where you are, the GI folks here were not helpful. Since I was diagnosed with renal disease a few years ago and couldn't find local dietary assistance with a renal diet, I researched and designed my own. BUT when I was diagnosed with gastroparesis, I had to start compromising because my renal diet conflicts with my diabetic diet with my gastro diet.

My hospital here finally is revamping its dietary department and is hiring knowledgeable experts to start one on one outpatient consultations the first of the year so am hoping to get more input which I will share.

Meanwhile, I have read that some people can reverse or somewhat reverse GP while others learn to manage it and keep it from progressing but I also understand that it can worsen over time for some people.

I hope you can find a good dietitian and can also google Crystal Saltorelli, who has written a good pdf about GP diets.

Wishing you well!

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thanks for the info, again . I did watch some stuff online by Crystal Saltorelli - that was a good referral - some very good stuff. most of it I have learned by trial and error - over the years - but I always wonder if there is some stuff out there that I don't know! I have changed GI docs three times now - I now have one I like - but still next to no information he can provide on gastroparesis. I think you need to go to a center that specializes in it - but I have HMO insurance and it would not be covered. I also found a site livingwithgastroparesis.com that is good and this doctor Mark Cooper MD who is a gastroenterologist in Texas is VERY GOOD! Much of the stuff, as I said, I am already doing - I mostly was interested to know how progressive this disease is - like if it gets worse and worse until eventually you are on liquids only or a feeding tube.

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denisef | @denisef | Nov 8, 2022
In reply to @denisef "Thank you for your response. is your GP as a result of diabetes? was it diagnosed..." + (show)
Profile picture for denisef @denisef

Thank you for your response. is your GP as a result of diabetes? was it diagnosed with a gastric emptying study?

i pretty much have figured out what foods to eat and not to eat by trial and error - i asked my GI doc for a dietician referral when i was first diagnosed - he couldn't even give me that - just a "regular dietician" who knows very little about this 'not so common" illness. i subsequently have found lists of what to eat and what not to eat online and pretty much it is what i figured out by trial and error. i do seem to get "flares" though - which last several days where i literally can only take liquids and maybe thin pureed soup or shakes - but no solids. The biggest problem i have is sleeping at night - the food just "sits" and makes acid. for months now i stop eating at 2 p.m. and go to bed 9-10 p.m. so the food has 8 hours to "go down" but still some nights i have problems getting comfortable with a lot of "pressure/aching/gas/acid" etc. i haven't eaten "dinner" per se in over a year - just tea and maybe a very small amount of frozen yogurt or a popsicle... it sometimes feels thing are getting worse and more restrictive and i was just interested to see if other people had the same experience. No-one has mentioned having problems sleeping at night - which is actually my main issue (even if i manage what and when i eat during the day)

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I wanted to ask you - do you have problems laying down after you eat. How many hours before you go to bed do you eat your last pureed type food? Other than being very restricted as to what I am able to eat, this is my biggest issue. I really cannot take anything other than liquids 6-8 hours before I go to bed - which means 2 p.m. is my "cut off" for eating any food. I can have high protein chocolate milk or a smoothie up to about 5-6 p.m. and then just tea/water

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denisef | @denisef | Nov 8, 2022
In reply to @macrdo "Check n d's you're on. I was on gabepentin and got off it. Had major improvements...." + (show)
Profile picture for macrdo @macrdo

Check n d's you're on. I was on gabepentin and got off it. Had major improvements. Still have some issues but much better. Was on liquid diet for 3 yrs and got down too 100 lbs. My norm is 130 -160 lb. I fluctuate alot. What other medical issues do you have and can possible have food allergies that cause major disruptions. Just a thought.

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no other medical issues at all - on no medications other than thyroid medication, omeprazole and Tums. no food allergies - extremely delayed gastric emptying proven on the standard gastric emptying test - been worsening over the years slowly but surely - which is why I was asking if it is known to be "progressive" .

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ken82 | @ken82 | Nov 8, 2022
In reply to @denisef "i was diagnosed with gastroparesis about 3 years ago (gastric emptying study). I had it several..." + (show)
Profile picture for denisef @denisef

i was diagnosed with gastroparesis about 3 years ago (gastric emptying study). I had it several years prior, however, just went undiagnosed and YEARS ago was unable to eat fibrous vegetables things like broccolli etc. it would just "sit" and come back up hours later - totally undigested. I am managing it by dramatically changing my lifestyle both when and what i eat. Currently I am unable to eat anything solid after 2 pm. if i want to be able to lay down and sleep around 9-10 p.m. Lately things seem to be getting worse and there are some days where i ONLY eat pureed things/smoothies, frozen yogurt and nothing solid - otherwise i feel nauseous all the time. I was wondering if this is what happens - that things get worse and worse until eventually you cannot eat any solids at all and perhaps even have to get a feeding tube put in?? Seems like the gastroenterologists i have seen know "next to nothing" about this condition. One told me "you can just drink Ensure" - like it was no big deal to drink Ensure the rest of your life!!

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@willows , @denisef , @kamama94
I have had "post operative Gastroparesis" for 7 years as, since a botched Nissen to relieve Gerd.. the surgeon damaged nerves that surround the stomach.. the local clinic in Iowa was no help in diagnosis.. Mayo MN gave me cope mechanisms .. I can eat some solid food...in small amounts frequently.. I live alone in a small house so eating something every time I go through the kitchen is a must.. I lost 50 pounds initially but gained 20 back and constantly try to gain weight.. now 85 .. I do finding putting of Dinner a comfort mechanism.. bloating is a constant threat.. but I take papaya enzyme to help calm the foam that forms when eating anxiously.. too fast.. I have no trouble sleeping on a wedge and pillows that bends me so my head is a foot above the bed top.. I trend to play a few mind games to get in the mood to sleep.

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denisef | @denisef | Nov 8, 2022
In reply to @denisef "i was diagnosed with gastroparesis about 3 years ago (gastric emptying study). I had it several..." + (show)
Profile picture for denisef @denisef

i was diagnosed with gastroparesis about 3 years ago (gastric emptying study). I had it several years prior, however, just went undiagnosed and YEARS ago was unable to eat fibrous vegetables things like broccolli etc. it would just "sit" and come back up hours later - totally undigested. I am managing it by dramatically changing my lifestyle both when and what i eat. Currently I am unable to eat anything solid after 2 pm. if i want to be able to lay down and sleep around 9-10 p.m. Lately things seem to be getting worse and there are some days where i ONLY eat pureed things/smoothies, frozen yogurt and nothing solid - otherwise i feel nauseous all the time. I was wondering if this is what happens - that things get worse and worse until eventually you cannot eat any solids at all and perhaps even have to get a feeding tube put in?? Seems like the gastroenterologists i have seen know "next to nothing" about this condition. One told me "you can just drink Ensure" - like it was no big deal to drink Ensure the rest of your life!!

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hi Ken - thank you for your response. mine is "idiopathic" however maybe from a laparoscopic gallbladder surgery that "got complicated" and was converted to open procedure years and years ago. However, I did not have bad symptoms until years and years later - so not sure if that was what caused it. I did recently get a bed wedge - and yes its at least 12 inches above the bed - about 60 degree angle - but I am unable to fall asleep like that. I am a stomach sleeper - there is no way I can sleep on either side (right side is the worst - pressure and pain) or on my back. as a result of my "sleeping issues" I have to stop eating at 2 p.m. - 7-8 hours before going to bed - and still I can only sleep on my stomach. I am going to keep trying to use the wedge but if I haven't fallen asleep in 30 minutes I usually toss it aside and lay in the position I am accustomed to.

Was your condition "acute" I.e. did it come on suddenly directly after the surgery - or did it happen more gradually and then got worse and worse as time progressed?

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macrdo | @macrdo | Nov 9, 2022
In reply to @denisef "no other medical issues at all - on no medications other than thyroid medication, omeprazole and..." + (show)
Profile picture for denisef @denisef

no other medical issues at all - on no medications other than thyroid medication, omeprazole and Tums. no food allergies - extremely delayed gastric emptying proven on the standard gastric emptying test - been worsening over the years slowly but surely - which is why I was asking if it is known to be "progressive" .

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So sorry to hear it's worsening. Hope you find out what's causing it to worsen. In my thoughts and prayers.

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brendaharvey | @brendaharvey | Nov 9, 2022
In reply to @denisef "no other medical issues at all - on no medications other than thyroid medication, omeprazole and..." + (show)
Profile picture for denisef @denisef

no other medical issues at all - on no medications other than thyroid medication, omeprazole and Tums. no food allergies - extremely delayed gastric emptying proven on the standard gastric emptying test - been worsening over the years slowly but surely - which is why I was asking if it is known to be "progressive" .

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Mine did become more sever as years passed. I never strayed
from my diet.
I had surgery on Nov 1.
I am still sore but recovering.

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denisef | @denisef | Nov 9, 2022
In reply to @brendaharvey "Mine did become more sever as years passed. I never strayed from my diet. I had..." + (show)
Profile picture for brendaharvey @brendaharvey

Mine did become more sever as years passed. I never strayed
from my diet.
I had surgery on Nov 1.
I am still sore but recovering.

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Did you have surgery related to the gastroparesis? Perhaps the neurostimulator implant surgery? Or something unrelated? You are the first person that actually answered my question! thank you for that.. How many have you had it and how far did it progress (for example where you able to eventually only take liquids etc etc ).

Also are you an idiopathic case or prior surgery or diabetic related?
Thanks

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2 replies
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tsch | @tsch | Nov 10, 2022
In reply to @denisef "Did you have surgery related to the gastroparesis? Perhaps the neurostimulator implant surgery? Or something unrelated?..." + (show)
Profile picture for denisef @denisef

Did you have surgery related to the gastroparesis? Perhaps the neurostimulator implant surgery? Or something unrelated? You are the first person that actually answered my question! thank you for that.. How many have you had it and how far did it progress (for example where you able to eventually only take liquids etc etc ).

Also are you an idiopathic case or prior surgery or diabetic related?
Thanks

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I hope you get some real answers. My daughter has gastroparesis as aftermath of treatment for chronic fatigue illness. Vagus nerve apparently damaged. She has good times and bad. Also has cyclic vomitting now on occasion, somehow related. She does not want surgery, but it would be good to know what procedures have really helped people. She is not diabetic either.

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Profile picture for brendaharvey
brendaharvey | @brendaharvey | Nov 10, 2022
In reply to @denisef "Did you have surgery related to the gastroparesis? Perhaps the neurostimulator implant surgery? Or something unrelated?..." + (show)
Profile picture for denisef @denisef

Did you have surgery related to the gastroparesis? Perhaps the neurostimulator implant surgery? Or something unrelated? You are the first person that actually answered my question! thank you for that.. How many have you had it and how far did it progress (for example where you able to eventually only take liquids etc etc ).

Also are you an idiopathic case or prior surgery or diabetic related?
Thanks

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My surgery was done by a surgeon who specializes in Gastroparesis.
He did a surgery to open and clean out my pyloric valve.
It has been a painful recovery and am not recovered completely yet. It will be long but so worth it! Mine was far advanced and more than he had expected.

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