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Does anyone know if gastroparesis is progressive over time?

Posted by denisef @denisef, Nov 6, 2022

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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grace3 | @grace3 | Nov 15, 2022
In reply to @brendaharvey "My surgery was done by a surgeon who specializes in Gastroparesis. He did a surgery to..." + (show)
@brendaharvey

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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I have seen 5 different GI specialists over the years. May I ask who did your surgery? I have often considered this an option, but not one of the many GI specialists I have seen has recommended this. They keep telling me to stay on a GP diet as if I haven't been. UGH.
Hope you recover completely and rapidly!

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2 replies
denisef | @denisef | Nov 15, 2022
In reply to @brendaharvey "My surgery was done by a surgeon who specializes in Gastroparesis. He did a surgery to..." + (show)
@brendaharvey

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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have your symptoms improved since you had this done - or its too soon to tell? you had the pyloric valve "cut" - that is what they do - its called a pylorotomy - so it lets food out the stomach faster.

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brendaharvey | @brendaharvey | Nov 15, 2022
In reply to @grace3 "I have seen 5 different GI specialists over the years. May I ask who did your..." + (show)
@grace3

I have seen 5 different GI specialists over the years. May I ask who did your surgery? I have often considered this an option, but not one of the many GI specialists I have seen has recommended this. They keep telling me to stay on a GP diet as if I haven't been. UGH.
Hope you recover completely and rapidly!

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Dr. Michael Hughes did my surgery at Jewish hospital in Louisville, Ky.
His Medical group is called Vanguard.
He was great!
I will look up his phone # if you want.

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1 reply
denisef | @denisef | Nov 15, 2022

yes Grace, mine too is idiopathic - possibly caused by gallbladder surgery i had decades ago (though you think it would have come on sooner). everything you are saying i identify with - not being able to accept dinner invitations - unless i want to sit and watch others eat - eating out is a complete waste of time since i can barely eat a thing and if i order a sandwich or whatever i cannot even eat half of it... etc etc. My BIG question (which no one has really answered) is - did you find it progressed over time . i.e. did you go from just not been able to eat fibrous foods, then to not being able to eat more and more and eventually had to transition to liquids/pureed foods only. how many years did this take? i feel mine is progressing. This latest "flare" i have been having has been lasting almost a week now - its just not worth trying to eat anything other than tea/toast/protein shakes/cooked and pureed fruit and pureed soups. Also - how many hours before you go to bed do you stop eating? i have to stop at 2 p.m (8 hours prior to bedtime) and then still i can only sleep on my stomach - any other position i feel "pressure/pain/nausea" The only time i can lay in any position i want is in the morning when i wake up - 16 hours after i last ate!!

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denisef | @denisef | Nov 15, 2022
In reply to @grace3 "I have seen 5 different GI specialists over the years. May I ask who did your..." + (show)
@grace3

I have seen 5 different GI specialists over the years. May I ask who did your surgery? I have often considered this an option, but not one of the many GI specialists I have seen has recommended this. They keep telling me to stay on a GP diet as if I haven't been. UGH.
Hope you recover completely and rapidly!

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these GI docs have no empathy - one i went to told me "just drink Ensure" people live on it!! i think you really need to go to a specialty center where someone specializes in gastroparesis. the regular GI docs do not know much about it and have no "advice" to give that is helpful in any way, shape or form. i learned what to eat and what not to eat by trial and error. I have since found lists of what to eat and what not to eat on line - but years ago i had to figure it out by myself.

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ken82 | @ken82 | Nov 16, 2022
In reply to @denisef "hi Ken - thank you for your response. mine is "idiopathic" however maybe from a laparoscopic..." + (show)
@denisef

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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@denisef my Gastropanesis happened immediately after the Nissen surgery.. the Local GI doc struggled to diagnose my problem for 2 months... .couldn't keep food down.. Mayo MN figured it out in a day and gave me a way to cope..

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tsch | @tsch | Nov 16, 2022
In reply to @grace3 "I have been diagnosed with GP. Mine is considered idiopathic (unknown cause) since I do not..." + (show)
@grace3

I have been diagnosed with GP. Mine is considered idiopathic (unknown cause) since I do not have diabetes. If you are a diabetic controlling your blood sugar will help and in most cases cure GP. However, for people like myself, there is no cure or cause. I regurgitated food for over 5 years without a diagnosis. I still regurgitate food. Going on a liquid diet and making sure my bowels are moving helps me. I eat baby food, and almond milk with pea protein, and avoid meat. There are medications that claim they help. One that many find successful is Motegrity. I had serious side effects and had to stop this med after 5 days. It is an awful disease because every social event and every Holiday involves foods we cannot eat. Stay away from fried foods, dairy, and all Mexican food and cabbage. There are other foods that are not GP friendly. The list is extensive. It is very distressing and can leave you feeling isolated and alone. Usually, after I follow my liquid/baby food protocol for 3 days I can return to eating simple, nongaseous foods in small portions. Think white. Rice, potatoes, and bread. Think fish and nonfibrous veggies. I sincerely miss eating salads and all heart-healthy foods. Try to remain calm and seek help if you become dehydrated. I hope this helped a little. My sincere sympathy. Life is not easy with GP, but remain optimistic and work to find inner happiness in a world of nausea and stomach pain. Hugs!

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Have you tried domperidone? It helps my daughter. Some USA docs can prescribe and sometimes you need to get from Canada, but it helps her. She is also not a diabetic and the challenges you have, she has.

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2 replies
lidiana | @lidiana | Nov 16, 2022

I believe in my case yes 😓it’s progressing really fast. I was first having dumping syndrome symptoms (fast bowler movements), then very bad constipation (tried to manage: water intake, massages, suppositories, stool softeners but ultimately the hospital gave me Mirelax and laxatives, while giving me dicyclomine-in my case I don’t really know if it’s good idea- finally I have reduced the intake amount and increased the frequency over the day -when eating the small intake is 40% soluble solids and 60% liquid this has helped me a little) So far I have been diagnosed with HSD related to h/EDS on the spectrum and POTS subtype of Dysautonomia. I’m not sure what’s the root of everything tho. Some hypothesis from some doctors locally are:
✅that’s not gastroparesis
✅is endometriosis
✅POTS Dysautonomia
✅deconditioning
✅IBS

I’m concerned it’s that could be the NET cancer 2019 that started on the rectum is back after 2 years from the removal, other malignancy, MCAS or something autoimmune. I’m genetically in higher risk than average to melanoma, breast cancer, colon cancer afib and coronary heart deseases and have MTHFR. But we still working on figuring it out. My CT of the abdomen according to the vascular expert said I have diffused small bowel dilated, pathology said it’s just edema lymphocytic aggregates and I’m bleeding rectal a lil they said I have hemorrhoids. Back on February 2022 I got a hemorrhagic gastritis I think that was my first sign that something was not right but I was dealing with eating pain palpitations and extreme bloating. Still locally they gave me one egg after fasting from previous day 5pm (I was admitted that was the time of dinner) until 9am next day I think. I’m concerned because on March 2022 PET scan said “physiological activity” on my small and large bowels plus a suspected fibroid.

Hope everyone is doing better or getting the care needed. 🙏🏻Blessings of healing ❤️‍🩹

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1 reply
lidiana | @lidiana | Nov 16, 2022

@denisef I posted a comment under your discussion but I don’t know if you could see it. I’m having technical issues with the website. Let me know. I was also drinking ensure but it just didn’t sit right on my stomach either so I’m still searching for alternatives. I have a discussion about a drink that claim to help GI issues but honestly to this point I need nutrition treatment (trying to avoid having any implanted) cuz I was 132 before all the symptoms (explained on other of my discussions ) now 115 pound I’m 5’8” tall. 🙏🏻 I really hope you get the help you need as soon as possible. 🌼Blessings of healing ❤️‍🩹

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denisef | @denisef | Nov 16, 2022
In reply to @tsch "Have you tried domperidone? It helps my daughter. Some USA docs can prescribe and sometimes you..." + (show)
@tsch

Have you tried domperidone? It helps my daughter. Some USA docs can prescribe and sometimes you need to get from Canada, but it helps her. She is also not a diabetic and the challenges you have, she has.

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i heard it has very bad side effects...

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