I have created this site in order to reach out to the rest of you who are looking for information regarding gastroparesis, whether it be diabetic, viral or idiopathic in nature. I am an idiopahtc sufferer (which means no known cause) and I have been dealing with it since I was 13 years old.
My first bout knocked me off of my chair with the intensity of the pain. I went through many doctors and many pointless tests before I was finally diagnosed at the age of 19. I went through barium swallows, endoscopies, ultrasounds checking my gallbladder and many other tests. I was put on different medications and I ended up in the emergency room numerous times in agony and they could do nothing for me except give me pain meds. No solution. Finally after 5 doctors not being able to help me, I was finally sent to a stomach specialist, who decided to have me try a nuclear swallow to determine what my digestion rate was. I booked an appointment and was fed slightly radioactive eggs and was monitored with x-rays to see how I digested. In an hour and a half, my food had not moved at all. A normal person's stomach will have most of the food moving through in an hour. So finally I knew what was wrong!
Now the question was how to treat it, as many of you may know, is a difficult thing. I was put on Domperidone and it didn't work. I was put on Reglan/Maxaran and it didn't work for me. Finally I was put on Cisparide/Prepulsid and it worked! I was also on Prilosec to deal with the acid reflux (which I believe is a side effect of Gastroparesis) after Cimetidine/Tagamet and Ranitidine/Zantac didn't work anymore. So all of that with a combination of careful diet management and exercise, I improved. Then Prepulsid was taken off the market. I am now currently on no medications as nothing else will work for me. I still eat when I can and exercise. Some days are better than others.
The diet that I have found that works the best for me is a low fat/low fibre diet. I stay away from all red meat (almost all meat in general actually) and if I do eat any meat, I stick with chicken breast and fish. I don't eat potatoes as they are hard to break down. I stick to rice and pasta if I can handle starchy things. I don't eat vegetables and fruit unless they are cooked and are not stringy or tough skinned (eg., apples, oranges, celery). If I do eat dairy products, they are low-fat. The acid reflux just adds to the list of things I can't eat. I stay away from all citrus fruits, any tomato based sauces and soups, any spicy foods and anything overly greasy or deep-fried. I never eat any full sized meals. Everything is in small portions and spread out through the day. On the really hard days, I will drink Carnation Instant Breakfast (Cafe Mocha is my favourite) and eat soup if I can. It is really hard to want to have anything to eat on those days. Actually most days, I would rather not eat anything as it is easier on the bloating, nausea and pain. Sometimes I will have bad months and that is when it is the hardest. I lose weight and I get sicker and sicker.
I have tried different things in order to promote gut motility, with no success. I will mention them just in case they will work for someone else out there. I have tried pancreatic enzymes, spirulina (natural supplement pills) and digestive teas. I have heard that some people have tried aloe vera juice but I have also heard that it doesn't work and it tastes absolutely horrific so I haven't been overwhelmed to try it out.
I elevate the head of my bed about 4 inches because of my acid reflux but I also think it helps move any food I might have in my stomach in a general downwards direction.
If you have any questions, please feel free to email me at luv2flutterby23@hotmail.com
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