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Anyone diagnosed with Gastroparesis?
I have had problems similar to so many GI people. The swallowing problems (food stuck in the throat, bloating, nausea, feeling like choking, "fullness" for hours). Finally after many upper and lower scopes ( have 18 cm colon left and function 80% well when cervical neck is well), a small hiatal hernia, numerous different PPI's for stomach changes, reflux, etc. and now on Nexium, the finding out the main problem 6 years ago was gastroparesis caused by a pain medication. Instead of a pacemaker, I tried a "newly" approved drug for the pyloric muscle of the lower stomach, botox, placed in 3 places to keep the muscle open a little so food could continually be released into the small intestine. The erythromycin in a low dose is a prokinetic, making the nerves contract the stomach muscles but, wasn't working. Still use 4x/day. This way no food collected in the stomach being able to "rot" causing sepsis, and decreased daily nausea and vomiting. I still can only eat small amounts and is more liquid or soft medicine/foods. My appetite isn't the best. I often have reflux, bloating, constipation and hoarseness. But it has been 3 yrs since botox to my stomach and it is working. I take my blessing where I can. I hope this helpe others.
Also, my diet had to change to rapidly digesting foods like white bread and not the "good" eating I was doing like whole wheat or 21 grain bread ( was laying on my stomach for hours), plus many vegetables and also many raw vegetables...a no no.
My daughter is going through so much of this and is an RN. Has Barrett's esophagitis, hiatal hernia, dysplasia, leaky gut syndrome i.e. and awaiting biopsies. Constant n/v, bloating,hoarseness, food in the throat like you in the chat.She is also an RN. On many "new" meds again.
It really can get to you especially when you work and have a very busy life like she does.
My best to all. Hope I could help someone.I understand your frustrations. It is wonderful having an understanding doctor that listens!
Joan
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Hello @montgomery41,
I found some information from Mayo Clinic regarding new treatments (under investigation) for gastroparesis, and though I'd copy relevant points that might interest you:
– One example is a new drug in development called relamorelin. The results of a phase 2 clinical trial found the drug could speed up gastric emptying and reduce vomiting. The drug is not yet approved by the Food and Drug Administration (FDA), but a larger clinical trial is currently underway.
– A number of new therapies are being tried with the help of endoscopy — a slender tube that's threaded down the esophagus. One procedure used endoscopy to place a small tube (stent) where the stomach connects to the small intestine (duodenum) to keep this connection open.
– Gastric electrical stimulation is a surgically implanted device that provides electrical stimulation to stimulate stomach muscles to move food more efficiently. Study results have been mixed. However, the device seems to be most helpful for people with diabetic gastroparesis.
– Gastric pacing also involves a surgically implanted device that stimulates the stomach muscles, but this device tries to more closely mimic normal stomach contractions. Currently, the device is too large and causes discomfort. Gastric pacing devices are only available in clinical trials right now.
https://www.mayoclinic.org/diseases-conditions/gastroparesis/diagnosis-treatment/drc-20355792
The above link also has details about two current Mayo Clinic trials that you may wish to view.
I'd like to reconnect you with @jlfisher56 @kamg @aishia @katmandoo @xcinsanx @harliegirl, as they've discussed similar issues – I hope they will join this conversation and share their thoughts about talking to your doctors.
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1 ReactionHi there is this gastric pacing you on about is the pacemaker you talking about or something new
Hi everyone! I follow this Digestive thread but I lurk most of the time and I apologize. I apologize, this may be a little long. If anyone is going through this and have any insight please share your thoughts/comments. I'm 41 y/o. I've had GP and the Vagus Nerve Damage for several years now. Anything I put in my mouth, food and/or fluids I end of vomiting the majority of the time. I've tried several different medications for the GP but none of them really helped. I had my first EGD with Botox injections back in April of this year which after about 2 weeks it seemed to help with the n/v to where I gained weight. I had my second round of Botox injections this past Thursday so I hope this helps. My GI specialist commented on my EGD results and said there was old food lining my esophagus and stomach and she was unable to remove it to see my abdominal lining. It sounded like the old food was like placque build up from old food. I have had more EGD's performed but none of them showed something like this. I am now to follow a full liquid diet and if that doesn't work then I'm looking at getting another J-tube placed. I also have an appointment with another specialist to talk to me about the gastric pacemaker. My abdomen hurts so bad I'm doubled over all of the time and my GERD is so bad even though I have to sleep in a recliner and not next to my husband the reflux is free flowing up my esophagus and out my mouth and nose causing painful sores in the corners of my mouth and in my nose. I had a Heller Myotomy in 2006, which is where they removed the lower section of my esophagus, which a typical person has a sphincter there to prevent food/reflux from going back up but with that procedure that sphincter does not work. I'm constantly nauseated and vomiting/retching. I don't know how to explain these things to my general primary doctor or the doctors in the ER because they don't have a clue as to what is going on with me. My pain is real and noone wants to address it. I was on a pain regimen but my PCP cut me off cold turkey and refuses to prescribe pain medication to me any longer. Can someone give me some insight on how to plead my case to physicians who aren't that familiar with my conditions?
Thank you so much for reading this.
God bless!
Michelle
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
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 😊
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1 ReactionSo 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
I get to see a GI doctor on February 18th so I am hoping they start to run tests sooner rather than later
Do any of you think Cleveland Clinic will help us more better
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.
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.