Gastroparesis with severe symptoms!

Posted by paarak @paarak, Jul 17, 2011

Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March - which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet - pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn't move through - then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling - It seems to work by drinking just water /gator aid for at least a day. I just don't know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn't seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach - I never seem to have stomach pain - Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition - what are your symtoms and how are you managing? Thanks

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I have been on Suboxone for a year. And I do struggle with constipation and I've been reading a lot of information on gastroparesis and Suboxone use and I am very scared and wondering how do I prevent this. I haven't found a lot of I haven't found a lot of information regarding the connection. Or what I can do to prevent this I'm on the sublocade shot and I'm weaning myself down. But honestly my anxiety and fear is worse than anything

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@jenniferpruitt

I have been on Suboxone for a year. And I do struggle with constipation and I've been reading a lot of information on gastroparesis and Suboxone use and I am very scared and wondering how do I prevent this. I haven't found a lot of I haven't found a lot of information regarding the connection. Or what I can do to prevent this I'm on the sublocade shot and I'm weaning myself down. But honestly my anxiety and fear is worse than anything

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Hi , I also have Gastroparesis and acid reflux. Bloating, and fullness. I have has 3 endoscopys, pH test, Barium swallow test, Emptying test, Colonoscopy and seen 7 different Gastroenterologists. I have Gone 2 hours away to Tampa General- wouldn’t recommend, as I live in Punta Gorda, Fl and NYC twice and everything normal. I eat spaghetti squash, scrambled eggs and grilled chicken ( no fat) on white toast. Most days I skip dinner, As I am too full. My Gastroenterolgist prescribed taking Miralax 1-3 doses 30 mins apart every 5 days or when needed in order to empty out. On those days I stay near a bathroom. I am now on Xifaxan twice a day for 30 days in case I have Small Intestine Overgrowth bacteria (SIBO). I did the home test annd came back negative, but my doctor didn’t have much faith in the test. Insurance doesn’t always pay. I paid $905 for it. I have been suffering for a year and a half. My next plan is to get surgery for an Enterra Batery operated device put in my stomach to empty out, like a pace maker. Hope something works for you. Feel better!

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@flourface

Hi , I also have Gastroparesis and acid reflux. Bloating, and fullness. I have has 3 endoscopys, pH test, Barium swallow test, Emptying test, Colonoscopy and seen 7 different Gastroenterologists. I have Gone 2 hours away to Tampa General- wouldn’t recommend, as I live in Punta Gorda, Fl and NYC twice and everything normal. I eat spaghetti squash, scrambled eggs and grilled chicken ( no fat) on white toast. Most days I skip dinner, As I am too full. My Gastroenterolgist prescribed taking Miralax 1-3 doses 30 mins apart every 5 days or when needed in order to empty out. On those days I stay near a bathroom. I am now on Xifaxan twice a day for 30 days in case I have Small Intestine Overgrowth bacteria (SIBO). I did the home test annd came back negative, but my doctor didn’t have much faith in the test. Insurance doesn’t always pay. I paid $905 for it. I have been suffering for a year and a half. My next plan is to get surgery for an Enterra Batery operated device put in my stomach to empty out, like a pace maker. Hope something works for you. Feel better!

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God bless you!!

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@flourface

Hi , I also have Gastroparesis and acid reflux. Bloating, and fullness. I have has 3 endoscopys, pH test, Barium swallow test, Emptying test, Colonoscopy and seen 7 different Gastroenterologists. I have Gone 2 hours away to Tampa General- wouldn’t recommend, as I live in Punta Gorda, Fl and NYC twice and everything normal. I eat spaghetti squash, scrambled eggs and grilled chicken ( no fat) on white toast. Most days I skip dinner, As I am too full. My Gastroenterolgist prescribed taking Miralax 1-3 doses 30 mins apart every 5 days or when needed in order to empty out. On those days I stay near a bathroom. I am now on Xifaxan twice a day for 30 days in case I have Small Intestine Overgrowth bacteria (SIBO). I did the home test annd came back negative, but my doctor didn’t have much faith in the test. Insurance doesn’t always pay. I paid $905 for it. I have been suffering for a year and a half. My next plan is to get surgery for an Enterra Batery operated device put in my stomach to empty out, like a pace maker. Hope something works for you. Feel better!

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I also have gastroparesis & really bad GERD….. I had two surgeries for my hiatal hernia of which “I think is my culprit of my gastroparesis” not been confirmed, but…. Not diabetic.
This might sound crazy to some, but here goes & it’s working for me…. I quit eat veggies & fruits along with starchy foods….. I eat red meat, eggs, bacon, fish, & chicken….. I’m lactose intolerant or I would be eating ice cream & cream in my coffee….. (tested at Mayo Clinic) I still enjoy my lemon green tea & limit my caffein & good old H2O. I graze during the day & give my stomach a rest after last meal about 6 pm for about 16hrs. I try very hard not to overeat because I can still get bloated & Walking helps a lot after eating if I do, along with occasional Zofran (an Rx). My PC doctor knows & follows me with labs…. I do take supplements. Hope this might help someone experiencing gastroparesis. My gastroenterologist threw up his hands & said “I don’t know what to do for you!!!! I went to Mayo & had more tests & talked with a dietitian who had pregnant brain…. I knew more than she did…. I know this goes against all our teachings about nutrition & I’m an RN, but it’s working for me…. You tube helped me a lot with high protein low carb eating…. Lots of info on YouTube on carnivore eating….I know some think bad of this….but…..
Prayers For Answers For Us Suffering….

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Greetings

I had the stomach emptying test at Rochester a few months ago. Based upon that and an Endoscope study, I had surgery 3 weeks ago. Everything went great. The surgeon also removed a 1.6" stage 2 A. cancer, that he discovered with the scope. Good things can come from bad. All this was done as an outpatient and I was home and slept in my bed that night.

Diet is hard to get a handle on. I am eating mostly what I call ABC (Already Been Chewed) food. Mashed potatoes and gravy, or chicken salad works well.

If in doubt, do the test and find out where you are at. I hope you can manage without surgery as many can. This is going to take time to get used too. Try eating 5 or 6 - 2/3 cup meals a day. There are many diet guidelines out there.

I pray that you will find relief. God bless your journey.

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@jenniferpruitt

I have been on Suboxone for a year. And I do struggle with constipation and I've been reading a lot of information on gastroparesis and Suboxone use and I am very scared and wondering how do I prevent this. I haven't found a lot of I haven't found a lot of information regarding the connection. Or what I can do to prevent this I'm on the sublocade shot and I'm weaning myself down. But honestly my anxiety and fear is worse than anything

Jump to this post

I’m 70 & have struggled with this condition for 20 years; at my age it’s not getting better as digestion slows with age. While Gastroparesis can only be confirmed with a gastric emptying test, its causes range from multiple to unknown. While it’s most typical with diabetics, SIBO can cause it, since the small intestinal bacteria overgrowth can do that. And while a stool sample by some doctors (certainly not many western MDs) can confirm such bacteria, the common breath test is best to register abnormal levels of methane in the stomach & duodenum area. You do it at home in an empty stomach; high methane are from the bacteria. Once you get some facts, your options may take you thru much trial & error. Someone posting mentioned Xifaxin, a common Rx to kill the bacteria, but you can read many postings & articles about the bacteria coming back. Definitely worth trying, however. You’ve also GOT to work with a nutritionist & get very serious about how, what & when you eat. Some diets or foods sone posting on this site mention will make some sufferers symptoms FAR worse; everyone’s body, digestion & conditions reacts VERY differently to many foods. I’d been a pretty strict vegan eating only 2 meals daily & my gastro condition has gotten worse (though getting older hasn’t likely helped). The upper chest pains & tingling/numb sensations are all from how gas & bloating (much less undigested food) are affecting your nerves; gastro symptoms are different for everyone. Exercise is key; walking after a meal. As is general stress management (be it yoga, mediation, etc). As for me, I can eat full & healthy breakfasts, but then can only tolerate a lunch meal generally no later than 2-3 pm. Protein at lunch needs to be very limited. Nothing with refined sugar. Forget about desserts after lunch. I only use stevia as sweetener. No snacks between meals. Fruit is fine but limited to AM hrs.
Supplements can be VERY helpful. I take several extra HCl (mine includes pepsin & gentian bitters) capsules, especially with lunch to help digest protein. Pre-meal bitters can help. If I had a bad night sleep from gastric distress ( my symptoms are terrible, recurring stomach gas that’ll not pass thru sometimes til nearly dawn; I’m up in a chair, drinking charcoal & water & massaging my stomach). I’ll be extra careful how I eat to give my system a rest.
But getting ahold of a GOOD nutritionist (one who knows about the FODMAP diet) is critical, as well as the interaction of certain probiotics (that are all the rage now) & other supplements on the bad bacteria (if that’s what you’ve got) that you’re trying to get rid of. There’s also a new treatment out there called Thaenabiotics, put out by a company in Portland, OR. There are some ND providers out there who can get authorized to give it to patients, as it’s still in study stage; it’s had some success with some. I’m doing it now.
There are also some supplements, rather than rounds of antibiotics (which can either not work or provide other lousy side effects) that a GOOD nutritionist or ND knows about.
But if you are looking for answers beyond a western MD, you need to find an and or other provider whose specialty IS gastro conditions.
Everyone with stomach emptying issues IS different , exhibiting different symptoms. And that’s what makes it such an unknown to ALL practitioners. Even my Kaiser gastro doc is stumped past a certain point, though I’ve pushed to get him to authorize whatever he could, sometimes as recommended by my ND & nutritionist. And for any of you posting who’ve worked with a Mayo Clinic gastro specialist, I’m shocked they didn’t tell you all of this, since they bill themselves as THE western MD experts on so many conditions. And I know that many such alternative provides & therapies won’t be covered by your insurance; so it’s out-of-pocket if you can afford it.
But don’t waste time with any western MD who hasn’t a clue or won’t get you the tests & referrals you need. Good luck to all
If you out there.

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I’ve also suffered from slow stomach motility, be it from SIBO that I’m working to resolve OR some vagus nerve issue. Anyway, my worst symptoms occur in the evening; despite being vegan & eating no later than 2-3 pm, any slight mis-eating (snacks, to much protein, sugar, whatever), creates hours of gas & bloating (no nausea) that will keep me up often til 2 am or even dawn. Only multiple drinks of charcoal & stomach massaging eventually results in whatever’s in my stomach to pass. My question to anyone with this condition is have you found ANYTHING to hasten the absorption of such gas (or neutralizing of bacteria) that works? Mind you, no type of herbal tea, finger, fennel or any over-the-counter medication (GasX) helps. Nothing. Anyone out there found anything? Thanks

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@peggyjean

I also have gastroparesis & really bad GERD….. I had two surgeries for my hiatal hernia of which “I think is my culprit of my gastroparesis” not been confirmed, but…. Not diabetic.
This might sound crazy to some, but here goes & it’s working for me…. I quit eat veggies & fruits along with starchy foods….. I eat red meat, eggs, bacon, fish, & chicken….. I’m lactose intolerant or I would be eating ice cream & cream in my coffee….. (tested at Mayo Clinic) I still enjoy my lemon green tea & limit my caffein & good old H2O. I graze during the day & give my stomach a rest after last meal about 6 pm for about 16hrs. I try very hard not to overeat because I can still get bloated & Walking helps a lot after eating if I do, along with occasional Zofran (an Rx). My PC doctor knows & follows me with labs…. I do take supplements. Hope this might help someone experiencing gastroparesis. My gastroenterologist threw up his hands & said “I don’t know what to do for you!!!! I went to Mayo & had more tests & talked with a dietitian who had pregnant brain…. I knew more than she did…. I know this goes against all our teachings about nutrition & I’m an RN, but it’s working for me…. You tube helped me a lot with high protein low carb eating…. Lots of info on YouTube on carnivore eating….I know some think bad of this….but…..
Prayers For Answers For Us Suffering….

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What helps you with the Gerd? Thanks.

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Eating no raw veggies & fruits helps a lot… I’ve also cut out most dairy & caffeine which was one of my favorites…real cream in my hazelnut nut coffee…. I’m lactose intolerant per tests at Mayo Clinic…. I eat small meals throughout the day & try to walk after eating…. I wear loose clothing…. Try not to eat at least 3 hrs before laying down…. I take supplements like potassium, magnesium & calcium… I also have hypothyroidism….. I usually fast (I do drink water etc.) from last meal till breakfast or brunch about 16hrs to rest my stomach & eat for about 8hr period… I take an occasional Zofran & Famotidine 40mg at night to help with GERD, if I do have GERD sometimes just drinking some water or changing my sleeping position helps, and then sometimes I just get up & sit in the recliner for awhile… I have water with me 24/7. What surprised me was being able to eat meats again with no fruits & veggies….. Feel like a new person…. Try different ways of eating & eliminating foods , smaller amounts & frequencies….. I gave anything new about 2 weeks, but sometimes you know right away! Taking pro & prebiotics sometimes also especially if I get diarrhea, but eliminating dairy has helped with that…. Good Luck!

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Oh my goodness, I do have most of the same symptoms. I was just diagnosed with gastroparesis. I have been so nauseous every morning and dizziness and light headedness for so long. So off balance. Chest pains, bloating, can't eat lg meals. I went to a cardiologist but only thing I have is SVT. I also have Fibromyalgia. I am not a diabetic either. I am on Reglan (liquid) for 12 weeks it is suppose jump start my gut. I sure hope so. I started eating soft foods and shake meal replacements. I still get nauseous but isn't quite as bad. Please keep me posted

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