I have had it for about 20 years and with Domperidone, Previcid and sucrafat everything is under control.

@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!

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.

I could have written this paragraph. Exactly my issue and exactly the response I get when I ask the doctors questions. Anything you can add would help.

Mike

@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.

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?

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!

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!!

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 ❤️‍🩹

@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 ❤️‍🩹