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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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)

I use FDguard also and it is helpful. The best price for FDguard I've found is on Amazon. Recently read about Bacilus Coagulans and it has been the most helpful. I take it after a meal. I got it on Amazon also: Schiff Digestive Advantage "Intensive Bowel Support". There is more than one "Digestive Advantage", but one "Intensive Bowel Support." So make sure it has their proprietary "BC30 Probiotic."

mardar | @mardar | Feb 4, 2020

In reply to @ktracyf "I'm not a doctor, so please don't take this as advice, ok? But I, too, have..." + (show)

@ktracyf

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

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I was diagnosed with fibromyalgia in 2007 and recently Nov 2019 with gastroparesis. I started using medical marijuana in Jan of 2019. The Dr is blaming certain medications or in my case he said marijuana use. I don't think this Dr knows I have fibromyalgia the whole thing just passed me off I've only seen this Dr when he did my colonoscopy and endoscopy at no time did he even examine me!! These Drs DON'T KNOW DAMN THING!! We have to have to many Drs!! It's not like the old days if your Dr had to send to a specialist he did / Now you have to have a specialist for everything! Not counting my eye dr, dentist , chiropractor, and gynecologist I have about 4 or 5 Drs I see regularly 😨 and it's all due to the marijuana that actually makes me want to eat and it helps some with the pain 😺

blmd5861 | @blmd5861 | 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 was not given any guidance after my diagnosis. Looked up gastroparesis on the Mayo Clinic site that
gives causes, treatment, prognosis for diseases. Also have googled gastroparesis diet.

ken82 | @ken82 | 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)

During a Nissen surgery to relieve GERD the nerves that do the stomach emptying were damaged.. which resulted in gastropaneisis.. The Doctors in Central Iowa could not diagnois for 2 months (9 days in the hospital) I went to Mayo Minnesota and they (GI tests and doc) figured it out that first morning. I had lost 50 pounds (was not overweight before the surgery) the GI doctor at Mayo talked with me for nearly Half an hour...sent me to the Nutritionist... I had to go back once .. Mayo gave me a way to cope.. eat often, small meals and small bites, chew very well, don't get too full, don't lie down after eating...prop yourself up when sleeping.. gravity has a big role in emptying the stomach... I've gained 25 pounds back after they gave me directions... None of your friends or family members understand.. avoid carbonated beverages, soft bread, don't bother with hard to digest veggies like broccoli etc.. Your blender will make almost anything etible..ken

blmd5861 | @blmd5861 | Feb 4, 2020

In reply to @ken82 "During a Nissen surgery to relieve GERD the nerves that do the stomach emptying were damaged....." + (show)

Wonderful information- thank you! Gastroenterologist in Moline, Il. diagnosed but then provided no info for managing!!

Teresa, Volunteer Mentor | @hopeful33250 | Feb 4, 2020

In reply to @ken82 "During a Nissen surgery to relieve GERD the nerves that do the stomach emptying were damaged....." + (show)

@ken82
Hello Ken,

I am sorry to hear of the complications from your Nissen surgery, but I'm glad that the doctors at Mayo were able to find the problem. We actually have a couple of discussions here on Connect about gastroparesis. Here are the links to two of those discussions.

https://connect.mayoclinic.org/discussion/gastroparesis/?commentsorderby=DESC#chv4-comment-stream-header
and
https://connect.mayoclinic.org/discussion/gastroparesis-diet-alot-out-there-but-nothing-consistent/

How are you coping with the diet/lifestyle changes that were suggested? Are you feeling any better?

waslatter | @waslatter | 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 was diagnosed with gastroparesis recently. After ruling out other causes such as bacterial, picture of stomach (did have undigested food), I did a stomach emptying test which confirmed gastroparesis. No real treatment except dietary.
Mine seems to be somewhat mild, have never had nausea to the point of vomiting and am actually gaining weight. A good enterologist should be able to help.

ken82 | @ken82 | Feb 4, 2020

In reply to @hgarm "I get to see a GI doctor on February 18th so I am hoping they start..." + (show)

The stomach emptying test establishes the base definition of gastropanesis...slow to empty stomach... No cure.. just learning to cope.. Mayo did that for me when my local GI and surgeon could not ... Go to the Best available.. acting on firm knowledge is essential..

mardar | @mardar | Feb 4, 2020

In reply to @ken82 "During a Nissen surgery to relieve GERD the nerves that do the stomach emptying were damaged....." + (show)

It's prob all the meds they give you for the fibromyalgia

martft4 | @martft4 | 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)

Has anyone been prescribed motegrity for gastroparesis?

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