Gastroparesis

[cjanrun]

When will more medications be available for those of us with Gastroparesis? There is only one available in the U.S. that is Reglan which has all sorts of side effects. I cannot take this medication because of those side effects so purchase Domperidone through a Canadian drug company. Since I do this, insurance does not cover it. Also, I am very frustrated with the medical profession's lack of awareness regarding this disease.

[cjanrun]

I would get a copy of those GES test results and see a motility specialist. Take an antacid, my eye. That is so infuriating. I had a GI doc who told me I was just being sensitive. I have Kaiser which is actually quite good. I ended up going to my primary doc about 1 1/2 years later because my symptoms had reached such a point that I was doubling over. She was going to send me back to that same doc and I told her I would not go back to him so I was referred to a very good GI doc. He has been of immense help. I have been a member of an on-line support group for over 3 years. They are so wonderful. We do help each other a ton.

I also had a barium swallow which revealed nothing. The endoscopy showed an LES that was basically staying open and I have a small hiatal hernia.

[tennisman]

I've had it for about 8 months now, but just had it diagnosed in January.  I've been on the antibiotic for about 3 months.

I had lost a lot of weight last school year due to what may have been stress. During the summer I started trying to eat a little more to gain the weight back and I began having stomach pains and regurgitating. I had an endoscope done that revealed nothing. My doctor then just said I should eat small meals and take an antacid. The pain and regurgitation continued. My doctor then ordered a barium swallow, which only revealed a hiatal hernia. I knew that I had more than this, because my dad has a hiatal hernia and doesn't have these problems. One morning after breakfast I was having trouble keeping the food down. I got online and found out about the gastric emptying test. I asked my doctor to order it. Not sure about my results (the gi guy has them), but it was diagnosed as gastroparesis.

[cjanrun]

How long have you had Gastroparesis? Did you have a GES and if so, what were the results? I do not have trouble with constipation. How long have you been taking the antibiotic?

[cjanrun]

Yes, I know about the lack of awareness. I was diagnosed with this problem about 3 1/2 years ago. I have pretty good results with my current medications: Domperidone, Nexium, Phenergan and Elavil for pain. I take other meds for other problems. I do have dyspepsia and GERD which I think are symptoms of Gastroparesis. There is no way I would go to a naturopath or Chinese doctor because their knowledge of the condition is very lacking. Even one Chinese doctor told me I needed to go off all my meds, take the herbs and have a positive attitude. I was pissed. There is no way I could even think of going off my meds for one single day. When I had gotten sick with this back in August '05 I had so much chest pain that it threw off my EKG so I had to go through testing and a night in the hospital to rule out heart attack. There's no way I want to go through that again.

Isn't there a more current paper than one written in 2003?

[tennisman]

My Gastro doctor put me on Azithromycin. It prevents bacteria from forming and has been proven to help empty the stomach as well. Also, if you experience problems with constipation ask your doctor about Amitiza.

[anniebbb]

I take ritalin and it works great but they have reduced the dose. I now only take 10mg in tbe morning. I was taking it twice a day. My doc just prescribed amitiza but I haven't tried it yet. I also just bought some Citracel and will take that at night to make it easier. My lunch comes free at work so I cant always eat the type of diet I shoykd anymore unless I bring foid with me so I think the citracel will help. I took Ritalin for ADHD but it ended up serving 2 purposes. I suppose it may have made my stomach lazy too, I dont know, but it works anyway. The only thing is, you will have a hard time getting a doc to prescribe it for that, especially a system doc.

[GhostOf1901]

That's a very good question. The problem isn't only medications, it's an understanding of these disorders. In 2002, for example, only about $2 million was spent for motility research, and very few, if any, research dollars were spent by the NIH on research for effective treatment options. The simple fact is that not enough is even KNOWN about this condition, and because it's so often misdiagnosed (as either dyspepsia, GERD, or even as a psychological issue), the condition goes largely ignored. The only place I've seen an actual focus on this condition is in the naturopathic and holistic sectors, particularly the traditional Chinese medical community.

For some information on the status of things, see the paper "Gastroparesis and related digestive motility diseases, a medical crisis" (2003), prepared by the Gastroparesis and Dysmotilitie Associaion (GPDA), and presented to the NIH and Congress on August 19, 2003.

[PCBTrish]

I know you won't believe this but I had gastroparesis and a tumor/mass in my pancreas. I was as sick as sick can be. Even made my funeral arrangement for my kids "just in case". I was on Reglan and it worked, I was aware of the EPS and was very reluctant to take it. However, I did some research on pancreatic masses. The NIH and other authoritative organizations also mentioned CBD oil as a remedy for tumors in the pancreas. I took the CBD oil, hand made by a friend who followed the Rick Simpson's instructive video, and the tumor was gone the next month. I had that tumor for over two years and one 5cc does of CBD oil over a month period of time solved it. BUT guess what else I don't have....gastroparesis. Not sure why, could it be because of the CBD? Who knows but I swear by it. Additionally and most importantly of all, educate yourself on your disease and be proactive when it comes to your physician. Do your own research and bring it to him/her. I had too, they don't and didn't like it but I do it nonetheless. I feel for all of you who suffer from GP, as it is horrible. Thank goodness I don't suffer from it anymore. P.S. CBD oil and/or Marijuana has never killed one person and there are no side effects other than "an elated feeling of happiness"....wow, that is some bad stuff. LOL Be facetious. Basically the above Marijuana has been given out by the US government for years. They know it works and that is why they provide it to individuals. Sadly, Marinol, a synthetic THC (pot) has been on the market for decades and has never had any side effects. If we can give synthetic marijuana, why not the natural? Profits, or lack thereof, if it were not a scheduled drug. Defies logic, that's for sure.