1. < Digestive Health

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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tsch | @tsch | Nov 16, 2022

Domperidone has not had bad side effects for my daughter. There is another med that name I forget which is prescribed in the US and does have serious side effects. It is often the first prescribed med. side effect is muscular, forget the name.

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tsch | @tsch | Nov 16, 2022

https://www.drugs.com/condition/tardive-dyskinesia.html
Reglan is the scary med and tardive dyskinesia is the side effect to avoid.

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grace3 | @grace3 | Nov 16, 2022
In reply to @brendaharvey "Dr. Michael Hughes did my surgery at Jewish hospital in Louisville, Ky. His Medical group is..." + (show)
@brendaharvey

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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Thank you for responding! I should be able to find him through a Google search.
Hope you feel better soon!
Donna

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lidiana | @lidiana | Nov 16, 2022
In reply to @lidiana "I believe in my case yes 😓it’s progressing really fast. I was first having dumping syndrome..." + (show)
@lidiana

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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@grace3 thanks for the hugs.
May I ask @grace3 what has been your experience with this condition?

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lidiana | @lidiana | 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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I eat baby food too! Banana 🍌 one it’s good but sometimes it gives me itching on mouth. I’m going to get tested for allergies maybe that would say. But definitely there’s days I just eat mushy things to help. Thanks for sharing your experience 🙏🏻blessings ❤️

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gastrochic | @gastrochic | Nov 17, 2022

I have gastreoperasis I believe came from after my adrenalectomy, never had a problem before this operation. I don't know an answer, but I can relate. There are days we're I just don't eat anything. When I feel good ill eat, but then realize after time, it's way to much. I'm not so sure about GI Dr's, I mean they had me on 5 different pills. I just said enough is enough. Now months and months later I'm hurting again. Bloating nausea oh my. Not only gastreoperasis, but Gerd and hiatal hernia, constipation and the list goes on. I hope you find answers, but on my not so good days I do protein drinks and broth.

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grace3 | @grace3 | Nov 17, 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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This medication is not available in the US. It is also contradicted in people with certain heart conditions. Sadly, I am not a candidate for this drug. I am very happy this has helped your daughter. Hope it continues to bring relief.
Donna

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denisef | @denisef | Nov 17, 2022
In reply to @lidiana "I believe in my case yes 😓it’s progressing really fast. I was first having dumping syndrome..." + (show)
@lidiana

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 ❤️‍🩹

Jump to this post

Lidiana:
i just now see your post. you have a lot going on it seems like. There is only one definitive test for gastroparesis - the gastric emptying test - did you have that done yet - if not you should ask your GI guy to schedule it. i have a really good protein shake i drink - blend it with banana and pineapple or various other fruits - its called maxpro and has 30 grams of protein and lower sugar than most. it is really quite good. You can get it online. it is quite expensive but one bag lasts a long time and since you are not spending money on "real food" it is well worth it! i use about 1/4 cup orange/pineapple juice for liquid and the fruit is frozen - so it comes out very tropical tasting. get the vanilla - that way you can add whatever flavor you like - berries, pineapple, banana etc. sometimes i use chocolate milk for liquid - for a chocolate shake. i mostly have the shake daily, blended vegetable soup - cooked and blended fruit (apples or pears) and when i am doing "well" i can manage toast and a few other plain things..

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brendaharvey | @brendaharvey | Nov 18, 2022
In reply to @denisef "thanks for the info, again . I did watch some stuff online by Crystal Saltorelli -..." + (show)
@denisef

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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I had a surgical procedure called a Pyloroplasty 2-1/2 weeks ago. I am having a difficult recovery but hopefully I will be able to add some foods to my diet. I eat white bread toast with creamy peanut butter, yogurt, milkshakes, tuna, baked or mashed potatoes or sweet potatoes.
I weighed 130 pounds 4 years ago. Today 99 pounds. This is by far the most terrible thing to deal with!!!!

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1 reply
denisef | @denisef | Nov 18, 2022
In reply to @brendaharvey "I had a surgical procedure called a Pyloroplasty 2-1/2 weeks ago. I am having a difficult..." + (show)
@brendaharvey

I had a surgical procedure called a Pyloroplasty 2-1/2 weeks ago. I am having a difficult recovery but hopefully I will be able to add some foods to my diet. I eat white bread toast with creamy peanut butter, yogurt, milkshakes, tuna, baked or mashed potatoes or sweet potatoes.
I weighed 130 pounds 4 years ago. Today 99 pounds. This is by far the most terrible thing to deal with!!!!

Jump to this post

Brenda:
thank you for the update. your diet sounds very similar to mine - looots of bread/toast and shakes - main thing I eat. Can you eat stewed fruit (boiled and then pureed) - I find that a "nice treat" and sometimes warm it up and have it with frozen yogurt - very delish (since we cannot enjoy much!). that is a procedure I would consider if my condition deteriorates further. I am thankful right now I can eat what I can eat. Please let me know how you do once you recover. They did that procedure endoscopically - right? Did you have the botox injections into the pyloric valve first - to see if it was going to work? Just wondering .... Did your GP happen "all of a sudden" or did it happen gradually over many years? that was my original question - I am trying to find out how it progresses (or if it does). I definitely think mine is worsening. Another question - how many hours before you lay down to go to bed at night do you stop eating? that is one of my main issues. I cannot eat anything after 2 p.m. other than liquid otherwise the minute I lay down I get pain and nausea. Also - did you go to a specialty center to get the surgery done and if so where? Sorry for all the questions but I am trying to get some answers here and not many people seem to answer the questions I have....

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