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Anyone diagnosed with Gastroparesis?

Digestive Health | Last Active: Apr 10 5:06pm | Replies (204)

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@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

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Replies to "Hi @hgarm, about six months ago, I had my 3rd allergic reaction to my 3rd RA..."

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

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