Does anyone have any knowledge of gastroparesis? I was back in the hospital on Friday with terrible stomach pain. For the last two weeks, every time I have eaten, I immediately feel full and ill within 30-45 minutes. I get a bulge at the top of my stomach like I am pregnant and I feel like I have eaten an entire turkey.
For the time being, doctors are still treating me with baby aspirins and exercise and healthy eating. Ughhhh. No trial of Low Molecular Weight Heparin yet. Many MS and neurologic issues plus Factor V Leiden .... and quality of life stinks for decades.
Gastroparesis has been found related to blood clots. In this study, 89% of gastroparesis patients had detectable hypercoagulable risk factors. ncbi.nlm.nih.gov/pubmed/171...
Hopefully, my docs will give me a trial soon. I realize that heparin isn't something to be tested/tried unless there is a true chance it will help (as opposed to down side risks). But I've gone way past that point. Now I am down 15 pounds and I can only eat low fat soup for last two weeks. Couple that with memory issues, foot drop, ice-pick migraines, and on and on and on. While, yes I could lose a lot more than 15 pounds this is really serious.
I see my docs in NYC next week. I am sure hoping they do something other than send me home with more aspirin. I have been fighting this for decades and I am so tired of climbing up that health mountain only to be knocked down again.
I am tired of one doc saying it's this and another one saying it's not and then new symptoms and a doc saying it might be this and another one saying it's not. I need a nap. Actually I NEED TO EAT SOME FOOD AND HAVE IT GO DOWN. I am starving......
Thank you for everyone on this site. I haven't posted in a while (haven't been feeling well), but I do read the posts and I appreciate all of your posts!!! Hugs!
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Tranquility1
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Yes, I've been having the same thing: either food not going into the stomach from the gullet; and/or a burning pain in the stomach when some foods go into it.
I had a gastroscopy and biopsies very recently and everything looks totally normal. My GE said that he felt the my lower oesophagal sphincter was lazy and didn't always fully open and also that the nerves in the stomach lining have become hyper-sensitised.
Sorry you have been feeling badly. I hope you get your heperin trial, not only for your sake, but if you respond maybe they will start rethinking their heels in the ground attitude regarding seronegative APS.
How is it? Do you have a Doctor who really understands APS? Are you still with that Neurologist who thought you had MS?
You speak of several docs. You need one in particular who understands that you perhaps need a heparin trial.
I have Esomeprazol from my Rheumatologist to take if I have trouble with my stomach. Do you have something for your stomach? I do hope you do not take too much Aspirin as this is not good for your stomach either.
Even doctors who "understand APS" in the US, refuse to believe there is such a thing as "seronegative APS." (I actually have a forgotten anitbody that seems to be related to the antiCL antibodies call anti mylen IGG antibody. It is an old test that seems to be unknown to new doctors.)
Sorry if I'm answering for Tranquillity, but we are dealing with some of the same things with the same centers for APS in the US.
Dave, I've also had the colonoscopy and gastroscopy and also mine are clear. Have you had the gastric emptying study? Here is some info on it. healthline.com/health/gastr...
Over the days of trial and error of what to eat, I am learning through experience during this flare up that high fat meals are harder for my stomach to digest so therefore anything high fat is out for now. In addition, I love blueberries. Love, love, love them. But, even when I eat a small bowl of them right now with nothing else but water, a half hour later I am in severe pain because they are harder with the skins on to digest. Tomorrow I am going to try cooking the blueberries first and take off the skins.
Yes, I have many doctors. Some who say, yes you should be given a trial of anticoagulants by your general practitioner or cardiologist or hematologist. But they won't do it themselves. Then my general doc feels it should be one of the other two (cardiologist or hematologist). As Ann mentioned, the other two here in the U.S. don't believe in seronegative Hughes Syndrome. Nobody is willing to step up to the plate and prescribe them. Nobody disagrees that they might help me. They all are in agreement that they might. These docs are afraid of being sued if they prescribe them and I get a bleed. It's a crazy mixed up world -- because if I die of a blood clot, my husband will be sure to sue them for not following the studies that say people like me are under-prescribed the anticoagulants and are dying because of it.
We have years of research and doctors visits and tests that back up the need for me to be on anticoagulants, I have diagnoses from top hospitals that I am hypercoagulable, but nobody is willing to step up to the plate. Now I've got the added symptom of my stomach shutting down. Where have all the cowboys gone???
I wish I had a magic wand, or the ability to hypnotize doctors from afar. I too have run into the belief that there's no such thing as seronegative APS. it's hard to believe that New York City would not have every specialty you could possibly need. but maybe it's time to look elsewhere? Do doctors at Cleveland clinic acknowledge seronegative? Canada? A trip and short stay in London would come to thousands of dollars. I hope you can find Dr. support closer to home. Because it sure sounds like a clot in the Gastro system.
I have mild gastroparesis and stomach angina as my consultant says as I've occluded blood supply to the bowel. I get pain within 30 mins after eating most times. I also had a follow through scan where you eat radioactive porridge and they track the progress through digestion. I'm on donperidone but feel they don't help and I try to follow a diet that facilities easy digestion.
I hope you can get treatment and that it helps. Before I was diagnosed with APS I was diagnosed with coeliac disease which I am told goes hand in hand with APS; as well as rheumatoid arthritis and diabetes. Thankfully I haven't got the latter. There should be a standard diagnosis and treatment for APS all over the world. Good luck.
Here is a link to Crystal Saltrelli's free e-book "Quick Start Guide to Gastroparesis Management". Of all the websites and information on Gastroparesis, this free e-book has the best real life information on how to eat, cope, etc.... livingwithgastroparesis.com...
While Crystal's gastroparesis is not due to APS, blood clots, or MS, her insight into the condition and how to live with it (improving one's quality of life) are much more informative than anything I have seen come from a doctor's office or hospital. This is the type of information that I believe doctors should be providing to patients that are looking for more information on any medical issue that impacts quality of life. I look forward to the day when the medical community provides greater resources on how to improve our quality of life.
Hi tranquility. For a couple of years i suffered from slow emptying and food coming back up even through the nose once. I had a variety of tests which all came back negative.
- colonoscopy(3 in one year)
- swallowed a tablet with a camera in it
- radio active porridge
- a camera down my nose whilst eating, drinking, and gulping air
- there may have been others but none of them were conclusive.
My symptoms have settled, but I still get full very quickly occasionally, plus a very painful abdomen at the top, left or right side, I can barely breathe or move. My go and I are treating this as chronic constipation. One of my consultants said some people just have constipation for no reason. I take movical and senna, both liquid every day. If I miss a dose, which is frequent(I can't work out if I've taken it sometimes), then I get the excruciating pain where I almost pass out, and constipation followed by fullness and regurgitation and sometimes vomiting. I've had enough of investigations on this, and currently, I am giving attention to other parts of my body. Never ending. But having said all that, I feel better than I have for years since being diagnosed APS. i am now getting most of the treatment I need ie.vitB12,folic, iron, calcium with vit D, eosomeprozole, gaviscon advance, thyroid, domperidone(?)+ all the others for heart etc.: good luck with sorting yours out.
Hi I’m new here, I’ve been suffering the same thing contestant burning under left ribs and acid reflux even on 40mg of Omeprazole no joy I have had one aps test come back positive have the other next week could have possible pots too and suffer insomnia and other things, recently got put on mirtazapine for sleep anxiety and depression I couldn’t believe how Hungary I am the last 4 days I can now eat a full meal and probably more so googled this it has been shown to speed up gastric emptying but I can’t stop thinking of food and then get agitated as I’m trying to be as healthy as can be as I Can not get to rheumatology, cardiology etc due to Coronavirus so I thought Id up my fibre intake to try and fill up and I’m ok but being so inactive the last 6 months I worry about diabetes and getting it especially with aps I’ve been having severe joint pain and my legs hurt and chest can’t exercise for more than 10 minutes and heart rates racing then go dizzy, I’m trying so hard but feel like this is not going to get sorted, can anybody give me some tips of what they do and also do you feel a little better after they thin your blood thanks in advance xxxx
Hi I have sever gastroparesis so if you have any questions about meds, food, pain relief, nausea etc, just let me know ok. I have just had a PEG tube fitted too, although I am determined to eat orally for a s long as possible. I use the PEG to vent and also feed, as I am now 5 stone 7 and find it hard to gain weight. Life is tough with this illness, and it is largely invisible. I will help in any way I can x
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