Does anyone know if gastroparesis is progressive over time?
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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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.
thank you for your response. is your GP as a result of diabetes?? Was it diagnosed by a gastric emptying study?
you can eat anything and everything on those meds listed above?
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)
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.
Thanks. I could have written this paragraph. Fits me to a tee! Mike
@denisef, My docs think the gastroparesis could have been caused by vagus nerve damage from years of Type 2 diabetes. I started being unable to eat properly a year ago this past fall and finally wound up in the hospital in March after several trips to the ER. After being admitted I had a gastric emptying study which confirmed gastroparesis. They also did an upper endoscopy, found some esophageal narrowing (and stretched my esophagus) and did a colonoscopy. The gastroparesis diet they gave me was impossible for a diabetic with renal disease to follow so I had to develop my own meal plans as a result.
To Denise’s, No I do not have diabetes. I did have a pile of studies at the hospital and the diagnosis was a « classic case of lazy stomach » meaning that my stomach was not doing its job. This happened rather suddenly when I became quite Ill and couldn’t eat or sleep I felt so nauseous and bloated and my stomach ached. I was put on this regimen of medication and it began to work right away. Now if I go without the medication I have terrible heartburn and stomach ache. This happened when I went on vacation and forgot my pills. Had to chew on Gaveson the whole trip. In terms of diet
I found that it I was really important to cutdown on my portions for one thing. Also I have to be very careful of tomato
based sauces, although I can eat uncooked tomatoes. As well garlic raw is a no no but cooked in food is ok unless it’s too strong. Coffee doesn’t bother me. In conclusion you will learn through trial and error what you can eat once you are on medication. I introduced foods slowly until I figured out what and how much my stomach can process. Also drink water and keep hydrated.
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.