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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Hi, @lell, this is Mamacita, from the Adults on the Autism Spectrum group. Years ago, when my gastroeneterologist said that I "might" have gastroparesis, my cousin, a Biologist, gave me an exercise to do where I "suck in" my abdomen, and release. Repeat. As many as you can do comfortably. And throughout the day. About this time I started eating gluten free, all except for one small yogurt each day. This progressed to Paleo, and now finally, Lazy Keto. I also have four gummy probiotics per day. I eat mostly vegetables and protein, maybe a handful of strawberries or blueberries. I also have IBS and Diverticulitis, along with severe food allergies. However, with the measures taken that I have mentioned, I have no symptoms from any of those conditions. Try to find a really good specialist for a second opinion. Who knows, you might like that doctor even more. What I have mentioned works for me, and many others. It may or may not work for you. I wish you good success on the path to health in this new year!
Do you know of a link that demonstrates that exercise by chance???
What is that?
I was diagnosed with mild gastroparesis ( they're just guessing) , but my symptoms are very severe. My gallbladder was removed in October of 2017 and 3 days later I became ill . I have been sick ever since… and it is now January of 2019. I have chronic and severe nausea everyday, lack of appetite, bloating and distention , stomach cramps, etc. I have had every test done that they can do and they still haven't figured out exactly what's wrong with me. In the meantime I suffer , and suffer greatly. They have tried every medication on me except for one , which my doctor is trying to get for me as we speak. If anyone has had their gallbladder out and then continue to have chronic nausea and GI issues PLEASE let me know what you have done to heal yourself of it
I believe gastroparesis refers to the intestines not functioning properly. We are not medical doctors and obviously nobody can diagnose symptoms over the internet but I unfortunately was wondering if perhaps the Keflex “messed up” the balance of your intestinal flora and you were left with diarrhea and colitis. That is essentially what happened to me after a round with Clindymycin, another antibiotic. I had diarrhea, gas and cramping for three months and lost twenty pounds. Other diagnoses that were thrown around for me were CDiff and microscopic colitis, but in the end my diagnosis was SIBO from the antibiotic use. In essence, the antibiotic causes a dysbiosis or imbalance of bacteria. I was put on other antibiotics to “kill” the bad bacteria and eventually had to go on a diet to keep from relapsing. What I ate during my acute diarrhea attacks were bananas, beef broth, scrambled eggs, etc. No toast, no milk products, no grains like rice and no apples or potatoes. No yogurt and very low sugar. I drank peppermint tea with a little grated ginger. For the weight loss, I drank elemental shakes you can purchase over the internet. They are called EleCare Jr. and come in powder form to to mix with water. They come in different flavors. Unfortunately, GI doctors know little about nutrition. I had to go to aa nutritionist to find out how to eat for my condition. Hope this information helps and you feel better soon. I know what it is like to be in your shoes and desperate for help. Keep us posted.
GASTROPARESIS. I certainly am not an MD, but I’ve had advanced gastroparesis for at least 20 years. Gastroparesis is a condition that affects the stomach muscles and prevents proper stomach emptying. It requires a medical diagnonis often through lab tests and imaging. It’s chronic and can last for years or a lifetime. Because food takes days to digest, I do not absorb nutrition or medication like I should.
Several years ago, I was hospitalized for months when I could not even keep water down. I received Reglan IV and other meds, as well as glucose. By the time I went to the hospital, I was too weak to stand and was depleted of potassium and magnesium. More IVs. FYI, if you ever need posassium via IV, insist that it be set on a VERY slow drip. It burns. The slower it is, the less it burns. It takes hours but worth the wait.
One common test is a food-swallowing test (although the results can be a false-negative as in my most recent test). I’ve had endos where I’ve fasted for the procedure and my gastroparesis surgeon still had to empty the contents of my stomach. Food I had ingested days before we’re still sitting in my stomach.
I tried oral Reglan (metoclopramide) but went off it because of possible devistating side effect called tardive dyskinesia (a rare but serious movement disorder that is often irreversible). I ended up developing it’s cousin, tardive akthenesia (similar, but not as severe). Since I was misdiagnosed as bi-polar four years ago and put on Latiuda and then Safaris, I cannot stand still without involuntarily shifting feet rapidly. So I definitely cannot ever go back on Reglan.
Then I tried Domperidone, NOT APPROVED BY THE FDA. It’s available in Canada, Europe and a few other countries. It did not help me and has possible cardiac side effects. If you try or are taking this drug, please have an EKG before starting it and keep up with follow-up EKGs. If you are an older patient and already have a known cardiac disease, it should be used with extra caution.
For the last two years, the food that sets in my stomach has been causing an acidic foam to rise up into my mouth. It is miserable to live with having to swallow every 5 seconds and sometimes makes me sick. I’ve had many tests, procedures (including Botox injections in my stomach) and a year ago I had a fundoplication (stomach wrap) where they wrap one-third of your stomach around the esophagus to reduce reflux. After the surgery, the symptom continued so they determined it was from gastroparesis.
My only option now is to have a pacemaker implanted in my stomach. It’s so drastic that I’ve put it off for nearly a year, but I am just about ready to proceed with it.
In the most severe cases, gastroparesis can lead to malnutrition, starvation and the need for continuous tube feeding. I pray mine does not go that far. I do not want to frighten anyone, but I urge you to seek a specialist who is familiar with treating the conditioning in the early stages. Also, follow a careful diet.
See my post below for an explanation of gastroparesis… a condition that affects the stomach muscles and makes it very difficult to digest food.
I am in so much pain and no one seems to find the reason why. I am in and out of the doctors offices and hospitals with no answer. I was first being treated for UTI and was on Keflex for 2 weeks. After that I started getting pain in the right side of my kidneys. Went to the hospital and they did a CT scan and lab work and everything was ok. I am having EXTREME upper abdominal pain that radiates to my back. I lost 17 pounds in two weeks. I can't eat without it going right through me. I believe I have what is called gastroparesis
Welcome to Connect. I moved your discussion and combined it with this existing discussion, as I thought it would be beneficial for you to meet with the many members who have discussed much of what you are experiencing.
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@tross, have you been diagnosed with gastroparesis? How are you coping with the symptoms?
Hi, my name is Tracy and I was diagnosed with gastroparesis about 3 weeks ago after a year of vomiting, stomach pain, countless trips to the ER, 5 hospital stays and 39 lbs lost. I also have long term back pain after an injury and multiple surgeries, fibromyalgia, Sjogren's Syndrome (an autoimmune disease like Lupus only everything is dry, including my digestive tract), osteoarthritis, and a weak immune system that requires IVIG (IV immunoglobulin treatments ) once a month to try to boost my ability to fight infections and such. I started with vomiting binges five or six years ago. They'd happen once a year at first, then twice until this last year, where was sick more than not. I had Zofran, but just the taste of it started making me sick to my stomach, then my potassium would tank and we'd be running back to the ER.
I wasn't able to have the gastric emptying test because I have an internal pain medicine pump which would have caused a positive result regardless, but I've seen the same gastroenterologist each time I've been in the hospital, and he's done or had done every other test, some 2-3 times, and seems that gastroparesis really fits the bill. The last time I was in, the first week in Jan., he gave me Reglan and Phenergan suppositories for when I can't take anything by mouth. He added Prilosec ER in Dec. and Bentyl as needed up to 4 times a day. He would have liked me to take the Reglan all the time, but my family doctor is very afraid of the side affects, and she's really been up on things since I switched to her about 5 years ago – she did everything she could to get me in to a gastroenterologist in an area where you can wait up to 6-8 months for an appointment, so I've been using it as needed and that seems to be working.
Since my last hopsitalization, I've been on the gastroparesis/FODMAP diet, so I've been staying away from gluten, lactose, nuts, fresh fruits and vegetables, anything high fiber except 5 doctor approved prunes minus skins each night so that the opioids don't cause more problems that I don't need. I've been doing pretty well. Since I really wasn't eating anything for the past year, I don't feel deprived at all, and I eat smaller, more frequent meals, like everyone else. I've been able to cut back a bit on my pain meds, which I imagine can't hurt, and will talk to my pain doctor next week about the possibility of turning down the internal pump. I know I won't be able to get rid of it completely, it takes care of an area of my spine that had already been fused when I injured it in a car accident, but I figure every little bit can help.
I'm not usually as positive as I sound today, but so far, I've had a good week. My husband's been very supportive (which wasn't always the case). He made a really good soup with things that I can eat and I feel like I've been at a banquet fit for a king since Sunday, But this is a real change for me after a year of hell. I hope it continues and I hope others have some days like the last few I have.
Sorry for going on so long, Tracy