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Gastroparesis with severe symptoms!
Does anyone have gastroparesis (low stomach emptying) and what are you doing to manage the problem. I was finally diagnoised with this condition this year after at least 3plus years of unexplained illness. Most of my symtoms were related to pain in the chest; deep back shoulder pain; lightheaded/dizzyness; I always felt like I was having a heart attack. But each time I went to the ER all the heart test came back fine and was told it was just acid reflux. I have been to cardiology; neuralogy; gastrology. I have had heart test; stress test;;thryrod; diabectic test; all kinds of blood test (only showed low vit D) MRI of brain; spinal tap. Finally had stomach emptying test in March - which showed 85% food still in stomach after 3 hours. I have had to switch to a no fat; low fiber diet - pretty much all liquid; soft (babyfood like) foods. If I do experiment and eat something that doesn't move through - then I end up with the deep shoulder pain; lighthed/dizziness;; numbness in the arms/fingers and over all wekness. In order to overcome this feeling - It seems to work by drinking just water /gator aid for at least a day. I just don't know if this all started by a nerve damage issue or if it is reverserble. I have done a lot of internet reading and there doesn't seem to be anything to do except eating habit changes. And no one else seems to associate the pain I have with the stomach - I never seem to have stomach pain - Only fullness; nausea; bloating/gas. I also am not diabetic. Which my understanding is a reason for this condition. If you have this condition - what are your symtoms and how are you managing? Thanks
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Never heard of using Botox, but whatever works.
Had gastroparesis for a long time, but it was pretty benign, then had fundoplication and it went into complete paralysis for a while. I found out the hard way that oatmeal is not good for me. Lots of diarrhea.
Gastroenterologist put me on Cholestyramine and that has made all the difference. Slowly adding some fiber back into my diet.
I think I've been lucky to have good doctors.
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1 ReactionI find it astounding that the so-called profession of gastroenterology is permitted to exist. I have been to many gastros over the years and I find that they have one thing in common. Their uncontrollable desire to administer a colonoscopy. it's almost like they are unable to function unless that is number one on their menu.
From there they proceed to the try this, try that, mode. In my experience, there is no consideration for cost and insurance coverage. For example, I have United Healthcare. They do not cover Ibsella. The cost for this drug is approximately $1500/ month. Without discussing the cost, this provider thought that this drug "might" be worth a try. I think he might join the real world and understand that some people can't afford $1500/month.
My point is, there is no direction. There is no assurance that they will handle this very serious issue.
I have noticed that this problem is not an unusual one. It is prevalent amongst the older population. It is also a very debilitating condition, and it is time that it is given the attention that it deserves.
As for hospital emergency rooms, on my last trip to North Shore Hospital in Manhasset, New York, they told me that the wait to see a physician would be around four hours. Need I say more?
My problem is constipation. Can’t have fiber. I wish oatmeal would work a little on me🤗
I've had it on and off since HS. I was not a diabetic till my 50's. It was years to get diagnosed as if I was feeling OK the gastric emptying study would be OK. I finally had a MD get one the next day and after 4H I still had 95% of it still in my stomach. Cisapride was a mirical from God but the FDA took it off the market for arrhythmia. Now I'm left with the constant nausea and occ vomiting. Even though I'm now a diabetic I eat whatever I can get down. I've always hated milk so all of those suppliment drinks I should take in, just make me sick. I've been so miserable from thisthat if I can enjoy eating, I will. I'd rather not eat than force something down I can go into a grocery store and come out with nothing, as nothing looked good.
I hurt in my upper mid back and my stomach, sometimes at the same time. I have severe reflux and have had to have my esophagus dilated many times now. Thanks for the info about the fundoplication. I've not heard a lot of positive for the pacemaker. They brought that up to me in the 90's. When I was so sick and throwing up and in pain, I was begging for a J tube and bypass my stomach. Now that's when he offered compassionate use of the cisapride before it was approved by the FDA. My life changed. You can still get it from Canada I believe. Reglan and Phenergan make me twitch. Cola syrup can help nausea. Your local pharmacist can get it. Galveston is a med I can't be without. Domperidone has been out there for years but it's impossible to get a referral to the 1 guy in town giving it, and I'm in Atlanta, GA. I just read there's a Reglan Nasal spray! I'll have to ask my MD. I really hate those people who say eat this and you'll be perfect. My weight can fluctuate 10 lbs a week depending on N&V. However I'm on the heavier side. I did lose my appetite for a year with vomiting and I lost 40lbs in a year in 2018. A hell of a way to do it. I've gained 15 back. I wish the best for anyone going through this. It can be hard to diagnose esp if you aren't a diabetic. I'll add prayers for others with GI problems.
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1 ReactionIs anyone experiencing chest pain? Gastroenterology, rheumatology, and cardiology don't have any concrete advice. GI keeps saying it's acid reflux. ENT said they don't see any signs of it.
I have it.Gastroparesis
In my case, pain, nausea, impossible to eat a meal and actually digest it. You mentioned domperidone. I take this drug and for me it has been a miracle drug. If I am without it for more than 24 hours, I have severe stomach pain.My stomach was so bad, as seen in an endoscopy, that the Dr. begin my treatments with 6 domperidone tablets a day. Tapering down to the recommended 3 a day. I am mostly fine now except for occasional reflux.
I am absolutely miserable. I've suffered with abdominal pain for over 10 years but starting in September things went from bad to OMG this is the worst pain I have ever felt. The pain is so bad that I take 4 pills of hydrocodone every day just to make it through the work day and I have no pain med left for at night. They did an upper endoscopy on me and actually had to suction out my stomach contents. I can barely eat. Yesterday all I had was 1/4 cup of soup. I have to drink sugar drinks to keep me from feeling like I am going to faint. I am not diabetic. Since September I have lost 47 pounds. The stomach pain and back pain are just awful. The only thing that I have found helpful is going for a walk. If I do eat anything I vomit and sometimes I even vomit the liquid I ingest. Everyone I have turned to for help just tells me to deal with it and that there is nothing they can do. My family is tired of hearing me complain about how awful I feel. Therapist and psychiatrist are helping me deal with this pain, but its really hard.
Hello
I am exactly where you are 🥴 Currently very frustrated with my GI team, who seem like my severe gastroparesis diagnosis is no big deal !!
I feel you exactly symptoms with back pain et all.
My doc has suggested a low dose of Reglan for my severe gastroparesis too. I have told them that I cannot tolerate it. They gave it to me when I was in ER for a migraine. I couldn't even stay on the gurney!! The restlessness and anxiety it caused me were through the roof. They eventually gave me benadryl to counteract it's effects. So I am not willing to try it again even at a lower dose !