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Non Diabetic Gastroparesis
I am a 36 year old female. I have been diagnosed with gastroparesis. I have had this diagnosis for over a year but I have not been able to find a doctor that will help me find the reason I have it. I am not Diabetic. I cannot take Reaglan and my doctor indicates that I don't have any other options. He has talked about putting a tube in my neck and feeding me that way. I don't want that. I have been throwing up and bad (almost daily) diareaha for over 2 years now. I am at my wits end. I have become very depressed. This is effecting my daily life and ability to work. I live in Lubbock Texas. I need help please. I need to find out why I have this problem instead of treating symptoms that won't go away. I am tired of throwing up and not being able to leave my house for fear of having accidents. Can somebody please help me. I don't know what else to do. I have seen 3 different Gastro doctors in the last 2 years. I have had a colonoscopy that was normal. I have had 2 EGD's. I have a hiatal hernia, and a lot of inflammation in my stomach. I did have H-Pylori, I was treated for it but I don't know if it went away. I have not had another biopsy to find out. I need someone who cares enough to help me find out why. Please, Please help me.
I stopped seeking testing because after EVERY test I was devastated to learn that everything looked great. i know it sounds crazy but I'd rather have a reason than NOTHINHG. I have been sick for 8 years. Diagnosed with gastroparesis for 5. I gave up searching when a doctor at Dartmouth hitchcock hopital said there was nothing more he could do. i didn't respond to any medication. i decided to learn to live with it. DON'T EVER GIVE UP! NOT EVEN FOR A SHORT TIME! I can't leave the house anymore. Nausea, vomiting, severe abdominal pain and diarrhea. Can only drink some light fluids. no food or any medication. Don't stop until someone listens.
MEDICAL PROFESSIONAL
"Only one way to cure gastroparesis" Nice thought. Will probably sell books but not accurate. Diabetics with excellent sugar control still have gastroparesis as well as non diabetics. Autonomic neuropathy is usually a one way street.
Dr. Bernstein in his Diabetes Solution book claims that there is only one way to cure gastroparesis, and it is by stabilising the bloodsugar. This is in diabetics of course, but the rest of us can have quite unstable blood sugars as well. So maybe buy blood sugar tester to see if you react much to meals and snacks, and I can recomend a look in the book. Good luck
I am on Erythromycin and Zofran and it seems to be working. I am switching to Domperidone that I ordered from Canada. I willl switch the two medications every 6 months. Good Luck.
Gastroparesis is an interesting topic. Not nearly enough is known about it, yet it can be one of the most devastating things to quality of life. Unfortunately, the condition is very, very personal, so that how it manifests and how it's treated is almost different for every person.
Let's take some of your questions:
1) Why did gastroparesis happen to you? The fact is that while the most common single cause for GP is diabetes, it only accounts for about 20% of cases. Of the remaining 80%, 30% have other possible causes (MS and Parkinson's are two that come to mind), so you should be checked for these things as it may be a first symptom (this is unlikely, however). The remaining 50% are known as idiopathic cases: they have no known cause. It may have been viral in nature (in which case there's a chance that the condition would improve over time), or it may have been caused by something else entirely. Still, the majority of cases have no known cause.
The first thing I would tell you to do is find a good support group. (Yahoo Groups has a spectacular gastroparesis group which I highly recommend. While I don't have the condition myself, my interest in it stems now highly from the knowledge I've gained from that group.) The reasons for this are obvious: they'll have the best concentration of encouragement, empathy, and knowledge, three things you need now.
The second thing I'd tell you to do is to find a doctor who's very familiar with the condition. They're not easy to find, but if you can find a specialist, do so, even if you have to travel to meet them. Again, a support group will help you find a good in your area, or as close to your area as possible. Gastroparesis is uncommon enough that most doctors don't see a lot of cases and may not be aware of the options available. (Regalan is only one of the drugs available. Some drugs are good, but unavailable in the US because they don't have FDA approval even though it's first-line defense in places like Australia and England. I believe the drug's name is Domperidone.) While limited, there are choices other than a G-tube and a J-tube which you may be able to try.
* As a side note, have you tried to take digestive enzymes? They may or may not work for you as you may or may not be able to tolerate them. Still, if you can somehow take something like Nux Vomita (for the nausea) and DigestGold (for the digestion, prevention of bezoars), it might offer some help. Note that I'm NOT endorsing these products, I just would rather tell you what's worked for some and use brand names to let you start your hunt there.
Now, you don't mention the order in which these things happened, the hiatal hernia (or discovery thereof), the gastritis (inflammation of the stomach), the h. pylori (which was very likely associated with the gastritis). Their existence may shed some light on the reason for the GP, since they may point to either nerve or muscle damage. Regardless, if your case is truly idiopathic, then it may not matter.
One thing you should remember throughout all this is that treatments are advancing all the time. According to something I read recently (information from the University of Florida's Shand's hospital, which has an excellent gastroenterology department), gastric pacers, which would stimulate your stomach muscles much the same way a pacemaker would stimulate a heart, are about 5 years out from becoming mainline therapy for the condition. I know that at times it feels like you won't make it five years, that it might as well be an eternity, but you must know that the time will come and that you will be able to take advantage of all the best opportunities available.
Good luck.
Let's take some of your questions:
1) Why did gastroparesis happen to you? The fact is that while the most common single cause for GP is diabetes, it only accounts for about 20% of cases. Of the remaining 80%, 30% have other possible causes (MS and Parkinson's are two that come to mind), so you should be checked for these things as it may be a first symptom (this is unlikely, however). The remaining 50% are known as idiopathic cases: they have no known cause. It may have been viral in nature (in which case there's a chance that the condition would improve over time), or it may have been caused by something else entirely. Still, the majority of cases have no known cause.
The first thing I would tell you to do is find a good support group. (Yahoo Groups has a spectacular gastroparesis group which I highly recommend. While I don't have the condition myself, my interest in it stems now highly from the knowledge I've gained from that group.) The reasons for this are obvious: they'll have the best concentration of encouragement, empathy, and knowledge, three things you need now.
The second thing I'd tell you to do is to find a doctor who's very familiar with the condition. They're not easy to find, but if you can find a specialist, do so, even if you have to travel to meet them. Again, a support group will help you find a good in your area, or as close to your area as possible. Gastroparesis is uncommon enough that most doctors don't see a lot of cases and may not be aware of the options available. (Regalan is only one of the drugs available. Some drugs are good, but unavailable in the US because they don't have FDA approval even though it's first-line defense in places like Australia and England. I believe the drug's name is Domperidone.) While limited, there are choices other than a G-tube and a J-tube which you may be able to try.
* As a side note, have you tried to take digestive enzymes? They may or may not work for you as you may or may not be able to tolerate them. Still, if you can somehow take something like Nux Vomita (for the nausea) and DigestGold (for the digestion, prevention of bezoars), it might offer some help. Note that I'm NOT endorsing these products, I just would rather tell you what's worked for some and use brand names to let you start your hunt there.
Now, you don't mention the order in which these things happened, the hiatal hernia (or discovery thereof), the gastritis (inflammation of the stomach), the h. pylori (which was very likely associated with the gastritis). Their existence may shed some light on the reason for the GP, since they may point to either nerve or muscle damage. Regardless, if your case is truly idiopathic, then it may not matter.
One thing you should remember throughout all this is that treatments are advancing all the time. According to something I read recently (information from the University of Florida's Shand's hospital, which has an excellent gastroenterology department), gastric pacers, which would stimulate your stomach muscles much the same way a pacemaker would stimulate a heart, are about 5 years out from becoming mainline therapy for the condition. I know that at times it feels like you won't make it five years, that it might as well be an eternity, but you must know that the time will come and that you will be able to take advantage of all the best opportunities available.
Good luck.
My son was wrongly diagnosed with Crohn's disease when he was 14 years old. At the time the doctor put him on a medication called asacol (aa-sa-caul). He remained on the medication for ten years (mainly because the doctor didn't care to check him again and just kept refilling the perscription). In the meantime, the Crohn's mysteriously disappeared. The asacol did help his inflammation and diareaha. He still has the constant nausea and no diagnosis for over a year and a half . All tests, and I mean, all
tests came back normal. Even the one for gall stones. He had the gall bladder removed to find it diseased and containing ten stones. Tests don't tell the whole story.
tests came back normal. Even the one for gall stones. He had the gall bladder removed to find it diseased and containing ten stones. Tests don't tell the whole story.
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