Anyone diagnosed with Gastroparesis?

Posted by jlfisher56 @jlfisher56, May 7, 2017

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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hgarm | @hgarm | Feb 4, 2020

In reply to @thelma76 "Do any of you think Cleveland Clinic will help us more better" + (show)

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

hgarm | @hgarm | Feb 4, 2020

In reply to @bl3ss3d "Hi @gharm, I was diagnosed with Gastroparesis about a year ago. The test that confirmed this..." + (show)

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

rdlvae | @rdlvae | Feb 4, 2020

In reply to @hgarm "I know you are never supposed to Google your symptoms but because the doctors don't seem..." + (show)

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.

peck1944 | @peck1944 | Feb 4, 2020

In reply to @hgarm "I know you are never supposed to Google your symptoms but because the doctors don't seem..." + (show)

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.

thelma76 | @thelma76 | Feb 4, 2020

In reply to @hgarm "What is the cleavland clinic? I live in Wisconsin so I am not near a mayo..." + (show)

@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

ktracyf | @ktracyf | Feb 4, 2020

In reply to @tujaded "Hi @hgarm, about six months ago, I had my 3rd allergic reaction to my 3rd RA..." + (show)

@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

sonjettiajon | @sonjettiajon | Feb 4, 2020

In reply to @hgarm "I know you are never supposed to Google your symptoms but because the doctors don't seem..." + (show)

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.

hgarm | @hgarm | Feb 4, 2020

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?

lvon | @lvon | Feb 4, 2020

In reply to @hgarm "I know you are never supposed to Google your symptoms but because the doctors don't seem..." + (show)

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.

lvon | @lvon | Feb 4, 2020

In reply to @rdlvae "Discomfort in upper abdomen which is very hard to explain. Not pain really, more like a..." + (show)

I have that also. My diagnosed as FuntionalDyspepsia. I take Celexa for anxiety and a over the counter drug called FDguard capsules. You can only get these capsules at Walgreens CVS , or on Amozon .com I sometimes take a gas x or tumns. I was on other men's but with the FDguard and Celexa I am almost 90% now