Hi Maria, and welcome to Healing Well.
I am 26 and was diagnosed with Gastroparesis about four years ago - mine is secondary to my main problem, Complex Regional Pain Syndrome (CRPS), which causes autonomic dysfunction. It sure is a horrible condition to deal with. I am managing now a lot better than I was, but I almost lost my life to the 'GP' and spent a large amount of time in hospital with IVs, feeding tubes and a lot of critical care after my weight hit just 28kg (about 60 lb).
You don't say much about what treatment you've had - just that your GI doctor has said she can no longer help you.
Are you following any sort of GP Diet? It involves a bit of experimentation because everyone finds that they tolerate slightly different foods, but as a general rule -
* Low Fat - very important - FAT slows the rate at which the stomach empties
* Reduced Fibre - FIBRE also reduces gastric emptying rate, plus indigestible/insoluble fibre increases the risk of problems like bezoars (balls of material that can block in your stomach or intestine)
* No red meat (or only limited amounts of very lean red meat)
* Peel and cook vegetables
* Pureed Fruit
* Small, frequent meals - I have to take things to extremes because my gastric emptying is really poor and I have about 12 tiny meals over 18 hours. Most people seem to find that they function best breaking down their food intake into 6, even 8 meals a day instead of 3.
Rapid weight loss is worrying. I'd recommend that you see a nutritionist or dietician if you're not already, as they have access to a lot of special supplements that aren't available over the counter. One that springs to mind for example is a product called Benecalorie, which is something like 200 calories/1.5mL - it's designed for people who can't handle much food intake but need to gain/maintain weight.
You need to make sure that your doctor is monitoring your electrolyte levels - particularly if you are also vomiting. I ended up hospitalised more than once with dehydration and my potassium through the floor.
Are you on any medications? There are several for gastroparesis, though I'm not sure what are available in the US. Here there are two main ones - metaclopramide (Reglan to you guys, I think?), and domperidone. There is also a third one, cisapride, but it's only available here under special authority from the TGA (=your FDA) because it has a potential to cause heart issues in people with certain underlying issues. There is also the option of Botox - this is injected into the pylorus via endoscopy, with the idea that by relaxing the sphincter you can increase outflow. Didn't work for me - neither did the medications as it happens (side effects with metaclopramide and domperidone, and I have heart issues that mean it's too risky for me to have the cisapride), but they do help a lot of people. Sometimes analgesics are necessary to manage the pain too.
I hope that helps - and if you've any questions about any of it do let me know :) Good luck with your appointment tomorrow *hugs* Please check back in and let us know how you get on.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.
On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio