Has anyone suffered or heard of gastroparesis?

Posted by hgarm @hgarm, Fri, Jan 25 10:58am

I know you are never supposed to Google your symptoms but because the doctors don't seem to know what's going on with me I figured I should give it a try. After googling my symptoms gastroparesis popped up saying that my symptoms resemble it. Seeing as the symptoms online seem very vague I was hoping someone who Has it or is suffering from it could tell me their symptoms? I am currently dealing with severe stomach pains when eating, diahrea that seems so be slime like and yellow, a feeling like something is stuck in my throat by my chest and feeling like I'm going to vomit it up. Some days are way worse than others but right now I can't eat and it's caused me to loose over 22 pounds in a month. What were your symptoms before you got diagnosed?

Hi @hgarm, about six months ago, I had my 3rd allergic reaction to my 3rd RA med (older school, DMARD's) Sulfasalazine, which then began another odyssey or maybe avalanche is more apt, in my health issues. But my GI Dr. & her PA (around here you ONLY see the PA or CNP in-office).

SYMPTOMS, PROCEDURES & TESTS – here we go:
•my first symptoms were EXTREME abdominal stomach pain, it was lower than normal, right about center of my tummy.
•It was even more severe than the 2 bouts of Epiploic Appendagitis I've had.
•I started drinking Pepto (or generic) a LOT, like way too much. Which gave me terrible, impossible constipation.

Other symptoms included:
•Extreme nausea
•Vomiting
•Unable to swallow much of anything…and then keep it down.
•Weakness, overwhelming fatigue.
•My acid reflux went crazy also, we tried all the usual stuff – tilting the bed, propping up on pillows & more, until I just finally started to sleep upright in my hubby's comfy chair.
•I've lost over 30 lbs & I CAN NOT exercise, due to my many pain-related issues.
•The first test by GI Dr. ran was an upper abdominal ultrasound (to see if I had any blockages, tumors etc. I came up clean, only with enlarged bile ducts.
•Then I had an abdominal ultra-sound.
•Next, was a MRI of my abdomen with contrast.
•And the last one I had was 2 wks ago, an upper abdominal endoscopy w/ultra-sound.

As for me, I've been instructed to eat small meals about every 2.5 hrs.
That has helped & now it seems most of my day is involved with taking pills at exactly the right time, eating at the right time, etc.

THINGS THAT HELPED:
•My doctors doubled my PPI meds (Lansoprazole also avail OTC);
•they added another med (Rinatidine) 2x a day
•Smaller meals
•STOPPING the Pepto!!! I'm a moron & of course I did not even consider how severe it would make constipation.
•Slowed waaayyy down on Tums, cause I kept eating them to keep the acid reflux away (also can cause constipation). But say, 6 tums after a half bowl of oatmeal. Then if I do get reflux right away, I'll have another 2 or 4.
•Limiting (not really by choice) what I (can) eat to things like: oatmeal, bread, yogurt, protein drink.
NO: chocolate, caffeine, juices…most everything else (for me).
•My DH finally broke down & got me the adjustable base & a new Tempurpedic mattress.
UP NEXT:
•I should share that I do take a lot of meds, the GI Dr. & her PA (the Dr., Whom I ONLY see for about :30 seconds before & after procedure) have always mocked & chastised me for "all the pills" I take – including pain meds, which are managed by a pain specialist (MD).

So the Dr. had the diagnosis made up in her mind – *Gastroparesis*
•My PA had been telling me that a 'Gastric Emptying Study,' & a colonoscopy where what I needed to do to ?confirm?
•FYI the treatment is to stop, permanently, all my pain meds; all anxiety neds & 1 depression med. I have major PTSD, which I noticed in the past 6-12 mo, is really is really being triggered. Probably about all the handling & pain inducing procedures. So anyway, since my mom committed suicide when i was 18, you might see my hesitation to stop some of these meds.
•Finally, on Tue., when I met with the PA in office, he said that they thought the 'Gastric Emptying Study' wasn't really necessary!!!
!!! WHAT ?? !!!
I did a search on the Mayo site & the said "the most important test in diagnosing Gastroparesis."

I hope this helps. Get to a GOOD GI Dr. asap. Where U live, there is only one GI group within 60 miles. 🙁

Holly | TuJaded

REPLY

Those are the same symptoms I had and after a years worth of different procedures and tests, it finally came down to the HIDA scan. 7years later after two pregnancies… It’s back. My symptoms are extreme stomach pain which causes nausea, weightloss, and some days not being able to eat because the pain and nausea are so extreme. I need to get back to the GI doc but its so expensive 😢
If you have any other questions I’d be happy to try and answer 😊

REPLY
@alanz

Those are the same symptoms I had and after a years worth of different procedures and tests, it finally came down to the HIDA scan. 7years later after two pregnancies… It’s back. My symptoms are extreme stomach pain which causes nausea, weightloss, and some days not being able to eat because the pain and nausea are so extreme. I need to get back to the GI doc but its so expensive 😢
If you have any other questions I’d be happy to try and answer 😊

Jump to this post

So was it gastroparesis or your gallbladder? I had my gallbladder removed almost 2 weeks ago but was told by the surgeon that th3se symptoms are not typical for after gallbladder

REPLY
@tujaded

Hi @hgarm, about six months ago, I had my 3rd allergic reaction to my 3rd RA med (older school, DMARD's) Sulfasalazine, which then began another odyssey or maybe avalanche is more apt, in my health issues. But my GI Dr. & her PA (around here you ONLY see the PA or CNP in-office).

SYMPTOMS, PROCEDURES & TESTS – here we go:
•my first symptoms were EXTREME abdominal stomach pain, it was lower than normal, right about center of my tummy.
•It was even more severe than the 2 bouts of Epiploic Appendagitis I've had.
•I started drinking Pepto (or generic) a LOT, like way too much. Which gave me terrible, impossible constipation.

Other symptoms included:
•Extreme nausea
•Vomiting
•Unable to swallow much of anything…and then keep it down.
•Weakness, overwhelming fatigue.
•My acid reflux went crazy also, we tried all the usual stuff – tilting the bed, propping up on pillows & more, until I just finally started to sleep upright in my hubby's comfy chair.
•I've lost over 30 lbs & I CAN NOT exercise, due to my many pain-related issues.
•The first test by GI Dr. ran was an upper abdominal ultrasound (to see if I had any blockages, tumors etc. I came up clean, only with enlarged bile ducts.
•Then I had an abdominal ultra-sound.
•Next, was a MRI of my abdomen with contrast.
•And the last one I had was 2 wks ago, an upper abdominal endoscopy w/ultra-sound.

As for me, I've been instructed to eat small meals about every 2.5 hrs.
That has helped & now it seems most of my day is involved with taking pills at exactly the right time, eating at the right time, etc.

THINGS THAT HELPED:
•My doctors doubled my PPI meds (Lansoprazole also avail OTC);
•they added another med (Rinatidine) 2x a day
•Smaller meals
•STOPPING the Pepto!!! I'm a moron & of course I did not even consider how severe it would make constipation.
•Slowed waaayyy down on Tums, cause I kept eating them to keep the acid reflux away (also can cause constipation). But say, 6 tums after a half bowl of oatmeal. Then if I do get reflux right away, I'll have another 2 or 4.
•Limiting (not really by choice) what I (can) eat to things like: oatmeal, bread, yogurt, protein drink.
NO: chocolate, caffeine, juices…most everything else (for me).
•My DH finally broke down & got me the adjustable base & a new Tempurpedic mattress.
UP NEXT:
•I should share that I do take a lot of meds, the GI Dr. & her PA (the Dr., Whom I ONLY see for about :30 seconds before & after procedure) have always mocked & chastised me for "all the pills" I take – including pain meds, which are managed by a pain specialist (MD).

So the Dr. had the diagnosis made up in her mind – *Gastroparesis*
•My PA had been telling me that a 'Gastric Emptying Study,' & a colonoscopy where what I needed to do to ?confirm?
•FYI the treatment is to stop, permanently, all my pain meds; all anxiety neds & 1 depression med. I have major PTSD, which I noticed in the past 6-12 mo, is really is really being triggered. Probably about all the handling & pain inducing procedures. So anyway, since my mom committed suicide when i was 18, you might see my hesitation to stop some of these meds.
•Finally, on Tue., when I met with the PA in office, he said that they thought the 'Gastric Emptying Study' wasn't really necessary!!!
!!! WHAT ?? !!!
I did a search on the Mayo site & the said "the most important test in diagnosing Gastroparesis."

I hope this helps. Get to a GOOD GI Dr. asap. Where U live, there is only one GI group within 60 miles. 🙁

Holly | TuJaded

Jump to this post

I get to see a GI doctor on February 18th so I am hoping they start to run tests sooner rather than later

REPLY

Do any of you think Cleveland Clinic will help us more better

REPLY

Hi @gharm, I was diagnosed with Gastroparesis about a year ago. The test that confirmed this was a gastric emptying test. My symptoms were major weight loss at first (from a size 12 to a 2) in about 2 1/2 months. I also could not eat many foods without experiencing some adverse reaction such as constipation, nausea, dizziness, etc. I lived in about 3 foods for over a year of which were bone broth, organic turkey and yams. I’m also a POTS patient so it was difficult healthwise. My histamine levels rise rather quickly with almost everything so I make a lot of items myself (cleansers, cosmetics, etc) and I have to watch my foods carefully. I would suggest you ask for a gastric emptying test. In my case applesauce took more than 5 hours to move. I now have SIBO and am being tested for MALS. My physician is trying to see which began first. I hope they are able to get to the bottom of it sooner for you.

REPLY

yes, my daughter had Gastroparesis and was treated at Mayo Clinic in Rochester. She was treated by Dr. Camalari, however not sure if he is still there, but you could certainly check. He was a wonderful Dr.

REPLY
@thelma76

Do any of you think Cleveland Clinic will help us more better

Jump to this post

What is the cleavland clinic? I live in Wisconsin so I am not near a mayo clinic and no one in my family would take the time to drive me to a mayo clinic. Right now everyone is angry that they have to take off to take me places and I have become a burden

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@bl3ss3d

Hi @gharm, I was diagnosed with Gastroparesis about a year ago. The test that confirmed this was a gastric emptying test. My symptoms were major weight loss at first (from a size 12 to a 2) in about 2 1/2 months. I also could not eat many foods without experiencing some adverse reaction such as constipation, nausea, dizziness, etc. I lived in about 3 foods for over a year of which were bone broth, organic turkey and yams. I’m also a POTS patient so it was difficult healthwise. My histamine levels rise rather quickly with almost everything so I make a lot of items myself (cleansers, cosmetics, etc) and I have to watch my foods carefully. I would suggest you ask for a gastric emptying test. In my case applesauce took more than 5 hours to move. I now have SIBO and am being tested for MALS. My physician is trying to see which began first. I hope they are able to get to the bottom of it sooner for you.

Jump to this post

I have lost over 22 pounds in a month I am now currently dealing with some abdominal swelling and it's really hard to breath on top of pain that feels like someone is squeezing my abdomen. Again barely eating anything do to pain after eating and just generally feeling like very weak and in pain

REPLY

Discomfort in upper abdomen which is very hard to explain. Not pain really, more like a heavy, uncomfortable feeling. Realized later on, it was probably bloating that I was experiencing. I lost weight because I was so anxious about not knowing what was wrong, and when I had episodes of discomfort/bloating, I stopped eating. My GP was diagnosed with the gold-standard test, Gastric Emptying. That was 2 years ago. I'll be happy to answer any questions. I felt very alone in my journey to self-help. There is no cure for GP and no explanation for mine. It's a "motility" issue possibly caused by damage to the Vagus nerve. Your stomach does not empty in a timely way, allowing food to sit and rot, and also resulting in early satiety. I recently joined a GP group that you may find helpful: Inspire.com Good Luck.

REPLY

I had nissen fundiplication in 2015 for hiatal hernia repair. Apparently the vagus nerve was damaged and after gastric emptying test I was diagnosed with gastroparesis. This is a life changing disease for which there is no cure. I continue to try to manage it and some days are better than others.

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@hgarm

What is the cleavland clinic? I live in Wisconsin so I am not near a mayo clinic and no one in my family would take the time to drive me to a mayo clinic. Right now everyone is angry that they have to take off to take me places and I have become a burden

Jump to this post

@hgarm I’m so sorry you feel like that… I go to Mayo Clinic here in AZ it’s ok I’m trying to get a patient advocate

REPLY
@tujaded

Hi @hgarm, about six months ago, I had my 3rd allergic reaction to my 3rd RA med (older school, DMARD's) Sulfasalazine, which then began another odyssey or maybe avalanche is more apt, in my health issues. But my GI Dr. & her PA (around here you ONLY see the PA or CNP in-office).

SYMPTOMS, PROCEDURES & TESTS – here we go:
•my first symptoms were EXTREME abdominal stomach pain, it was lower than normal, right about center of my tummy.
•It was even more severe than the 2 bouts of Epiploic Appendagitis I've had.
•I started drinking Pepto (or generic) a LOT, like way too much. Which gave me terrible, impossible constipation.

Other symptoms included:
•Extreme nausea
•Vomiting
•Unable to swallow much of anything…and then keep it down.
•Weakness, overwhelming fatigue.
•My acid reflux went crazy also, we tried all the usual stuff – tilting the bed, propping up on pillows & more, until I just finally started to sleep upright in my hubby's comfy chair.
•I've lost over 30 lbs & I CAN NOT exercise, due to my many pain-related issues.
•The first test by GI Dr. ran was an upper abdominal ultrasound (to see if I had any blockages, tumors etc. I came up clean, only with enlarged bile ducts.
•Then I had an abdominal ultra-sound.
•Next, was a MRI of my abdomen with contrast.
•And the last one I had was 2 wks ago, an upper abdominal endoscopy w/ultra-sound.

As for me, I've been instructed to eat small meals about every 2.5 hrs.
That has helped & now it seems most of my day is involved with taking pills at exactly the right time, eating at the right time, etc.

THINGS THAT HELPED:
•My doctors doubled my PPI meds (Lansoprazole also avail OTC);
•they added another med (Rinatidine) 2x a day
•Smaller meals
•STOPPING the Pepto!!! I'm a moron & of course I did not even consider how severe it would make constipation.
•Slowed waaayyy down on Tums, cause I kept eating them to keep the acid reflux away (also can cause constipation). But say, 6 tums after a half bowl of oatmeal. Then if I do get reflux right away, I'll have another 2 or 4.
•Limiting (not really by choice) what I (can) eat to things like: oatmeal, bread, yogurt, protein drink.
NO: chocolate, caffeine, juices…most everything else (for me).
•My DH finally broke down & got me the adjustable base & a new Tempurpedic mattress.
UP NEXT:
•I should share that I do take a lot of meds, the GI Dr. & her PA (the Dr., Whom I ONLY see for about :30 seconds before & after procedure) have always mocked & chastised me for "all the pills" I take – including pain meds, which are managed by a pain specialist (MD).

So the Dr. had the diagnosis made up in her mind – *Gastroparesis*
•My PA had been telling me that a 'Gastric Emptying Study,' & a colonoscopy where what I needed to do to ?confirm?
•FYI the treatment is to stop, permanently, all my pain meds; all anxiety neds & 1 depression med. I have major PTSD, which I noticed in the past 6-12 mo, is really is really being triggered. Probably about all the handling & pain inducing procedures. So anyway, since my mom committed suicide when i was 18, you might see my hesitation to stop some of these meds.
•Finally, on Tue., when I met with the PA in office, he said that they thought the 'Gastric Emptying Study' wasn't really necessary!!!
!!! WHAT ?? !!!
I did a search on the Mayo site & the said "the most important test in diagnosing Gastroparesis."

I hope this helps. Get to a GOOD GI Dr. asap. Where U live, there is only one GI group within 60 miles. 🙁

Holly | TuJaded

Jump to this post

I'm not a doctor, so please don't take this as advice, ok? But I, too, have pain issues from multiple back surgeries following an injury 26 years ago, as well as fibromyalgia and the autoimmune disease, Sjogren's Syndrome. I was recently diagnosed with Gastroparesis after a year of vomiting and stomach pain, not being able to eat…you know the score.

Anyway, I have an implanted device that delivers dilaudid to a place in my spine that was injured after a car accident AFTER I'd already had a spinal fusion and I take additional pain medicine for breakthrough pain. It makes doing the test for gastroparesis impossible because it would be positive regardless, but after a year of every test under the sun, the doctor feels very confident with his diagnosis and I'm doing really well with the smaller meals and a combination of the gastroparesis/FODMAP diet.

My gastroenterologist has never suggested I go off my pain meds or the other medication I take for my other conditions. While I've been cutting back some on my oral meds and I want to talk to my pain doctor about what I might be able to do to cut back with my pump, my gastroenterologist seems to understand that my pain is a part of me and he's treating me as a whole, not just as a stomach.

Since you have major PTSD as well as pain, is it possible to talk to another doctor who would treat the whole you? Again, I'm not a doctor, I just hate to see anyone have to choose which disease they're going to have treated, That's totally unfair. I understand there's some give and take, but as a fellow pain patient, I can sympathize when someone tells you, that's it, stop your pain meds. Right, and while I'm at it, I'll go back 26 years and undo the injury, it's about as likely. I've definitely been able to cut mine back, but getting rid of them overnight is never going to happen.

I wish you the very best. I know there is a whole lot I can do to help make my disease better and I'm doing all I can every day, but it helps to have a doctor who's working with me and all of my warts. I hope you get the support you deserve for all that you're dealing with.

All my best, Tracy

REPLY

Nausea and vomiting all the time. It got so bad I started vomiting up any liquid.I was diagnosed December 2018 and have lost 16 pounds since then.I can only eat unsweeten applesauce or canned peaches without sugar and infant lemon flavor pedialyte to drink to be able to take my other medication.Everything else that I drink or eat results in vomiting even drinking water. Im on zofran which helps a little and reglan 3 times a day and 10,000mg a day vitamin D3 my calcium is 10 and im on prescription iron pills 325mg once a day for 6 months now and my iron is always between 8 and 10. My parents said as an infant I always had a vomiting issue and could only drink goats milk. As I got older stomach problems continued and I was put on a medication called "Milkinol" it was in a brown bottle and it was white like milk. it coated my stomach and tasted good .I would have to take it 30 minutes before eating 3 times a day from age 4yrs to age 12.After that I was always a picky eater because my stomach hurt all the time this was in the 70's in Alabama so going to a Gp wasnt an option.I was always very skinny and anemic with brittle nails and osteoarthritis in all my joints.So now the Gp said its probably always been gastroparesis.This has been a lifelong battle with stomach problems.

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Try FDguard capsule. It is sold only ar Walgreens, cvs, or on amozon. It is natural stomach food. Look it up . My Gastrologist recomended it and it works.

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