Sorry to hear about your condition. When you say "severe", how severe are we talking about? What's your emptying time (vs. expected: everyone's test seem to be different)? Also, what test have you gotten done to rule out other conditions (MS, Parkinson's, scleroderma, Addison's, yeast overgrowth, etc.)? Have you had any abdominal surgeries? When was the onset and how did it occur?
As for what's out there: good news is that there's a fair amount, bad news is that the efficacy of each depends on who you talk to. I'll mention some items here and maybe others can add on.
First, as far as medications are concerned, there are a number available, but the two first line treatments are Reglan (in the US) and Domperidone (everywhere else). Domperidone has fewer side effects than Reglan, but it's not sold in the US. If your doc will give you a prescription for it you can order it from a number of Canadian pharmacies. (I see from your profile you're from Virginia, so I'll pretend you're in the US.) PharmacyChecker.com has a great list; they're also recommended by the AARP. In addition to those two there are other medications, but your doc will have to tell you about those. They're effective but have a lot more side effects than even Reglan.
As far as food allergies are concerned, have you checked out whether you might be gluten intolerant? Check out the tests from EnteroLab.com and see whether you're in the 1-in-7 that's gluten intolerant or in the 1-in-250 (or 133, depending on who you talk to) who's got Celiac Spruce. If you're gluten intolerant, then you may have found your cause. Additionally, you may want to see what happens should you eliminate all fluoride from your diet (drinking water, toothpastes, etc.) Fluoride has been shown to slow gastric motility and some people are sensitive to it, to the point where it shows up as gastroparesis. (Use fluoride-free dental care and distilled water for the time being. Avoid anything that can possibly have fluoride.)
On treatments, the one that has been studied the most with gastroparesis is acupuncture. However, the tests have been mostly with diabetic patients; due to the nature of idiopathic cases, results have come back mixed. Still, it may be worth a shot if you have a very good acupuncturist, one who is very, very well versed in herbs. There are some Chinese herbs I know of, but I don't think it's wise for me to recommend any, seeing as I (a) haven't seen you and (b) am not a doctor.
An herb which may be of help is Shatavari (an aryuvedic herb) which has been shown to work similarly to Domperidone (and which should NOT be used in conjunction with it). Additionally, depending on the severity of your condition, something called Iberogast might be of use (it's available via Amazon.com).
(Note: I recently received a message from someone in this forum which included a listing of herbs and instructions to try. I haven't yet, so I can't vouch for it, but if you wish I can send it to you.)
Yoga has been shown to help with the internal organs, although I can't cite any specific studies when it comes to gastroparesis. However, it may be worth a try. There are poses which can help with strengthening the stomach, so you may want to google those.
This is all stuff you can try at home, although you should do it under the supervision of a doctor, preferably (in this case) a naturopath, working in conjunction with your gastroenterologist. Depending on how severe your condition is, however (and I'm guessing that it might be bad but not all that horrible, seeing as you're still able to eat and don't yet have tubes attached to you), you might consider more drastic measures, should things not improve or get worse. Options include G and J tubes, gastric bypass, and gastric pacemakers. Of course, you want to do all you can to avoid these.
One last thing, something which worked for me was eating little meals throughout the day, 6 to 8. This should help (slowly) re-strengthen your stomach. In addition, you may want to take Alpha Lipoic Acid: if your issue stems from problems with the vagus nerve (as opposed to a smooth muscle condition) then ALA should help improve nervous function. (It's usually recommended for diabetic gastroparesis, but I've found it useful, and I don't have diabetes.) Resveratrol has also proven in my case somewhat useful, but I've been using it only shortly, so I can't say definitively if it's directly helping.
That's all I have for the moment. Good luck with your search for answers.
Gnorb, I too have gastroparesis, and would very much like some of that info your talking about. Please send me anything you can. Thanks
[=gnorb](Note: I recently received a message from someone in this forum which included a listing of herbs and instructions to try. I haven't yet, so I can't vouch for it, but if you wish I can send it to you.)]
gnorb, if you could shoot me a copy of this I would ever so appreciate it. I am in the process of trying different things and I am more than confused given I have been diagnosed with both slow and fast emptying so I think I can use all the extra help I can get as far as treatments. lol Thank you.
I just wanted to say it's a great idea to stay away from the Reglan. That was the first thing that I tried after my diagnosis and after only two doses I was constantly shaking, nervous and even became suicidal. I have found many people that have similar results.
TO everyone wondering about the email I received, here it is, unedited. Note that since I don't know anything about what's mention here, I cannot vouch for it's efficacy. IMPLEMENT AT YOUR OWN RISK.
HI,my name is Marcus.Let me start by saying a couple of things and telling you a little of my story.It is important to remember that all diseases/disorders unless you have a genetic disorder or have a serious trama are either bacterial,viral,parasitic,fungal,and sometimes chemical in nature.The key is finding out which it is and and taking care of that to allow your body to heal. what I have learned after two years is that it takes too much time and money waiting on these idiot docs to figure out exactly whats going on.When they tell you its idiopathic that just means one of two things.Either they are too incompetant to help you or dealing with you will take too much of thier time I.E. you cost them money so they send you down the road.Also gastroparesis doesnt mean your stomach isnt working it means something either is or has attacked your vagal nerve which controls your stomachs function.Nerves do repair themselves when allowed to so its not inconceivable that if you stop that process your stomach will work again.Now I would never say stop going to your docs along the way but what i did was go after everything while your waiting.I still have some serious issues going on they think is from lyme disease (bacterial) but at least i can eat now.I will now tell you the shortest version of my story that i can in order to let you know where this all comes from.Im 39 and Jan of 07 I was the healthiest i had ever been in my life.I had great job,family,was working out hard every day,had stopped smoking,great home,and was on top of the world.One night I got a weird headache and the next day had your typical stomach flu type symptoms.It continued to worsen and after 4 months neg. colonoscopy,neg stomach scope,they finally did the gastric emptying study and said i had gastroparesis.My stomach was working at about 4%.When i asked what caused this they said since your not diabetic its idiopathic take some reglan and you will be ok.As it turned out i was severely allergic to reglan,never take that **** it will kill you,so i had to stop it.At that point i was basically left to starve to death.I tried out of desperation to get the pacemaker but couldnt afford it.Now im glad i didnt as i have only heard bad things about it.As i was laying there starving and dropping 3-5 lbs a day and developing all sorts of weird symptoms like tremors,leg pain,and feeling like my brain was on fire I had resolved myself to the fact that i was going to die.I honestly think i did a couple of times and somehow came back.My sister in law came to see me and said she knew a naturapath that specialized in cancer and digestive disorders and that he could help.I never believed in natural medicine at that time and thought it was all a scam.But what the hell right.When he first saw me he said that i was so bad that it might really be too late for him to be able to help.He said if my body was still strong enough and i did exactly what he said that i WOULD EAT AGAIN. Since i was so bad off and had been living with the most horrible sensation of starving to death and being too nausious to eat i was game for anything.Here is what we did and by the way my stomach is now functioning at 86% which is normal.I dont eat as much as i used to which was alot but i can eat what i want when i want.1)go to the health food store and get pau d' arco,ginger,cinnimon,and honey.If you can only find some of this in capsule form thats ok just open them up and get it that way.You will make a tea out of this using distilled water.You can use your coffee maker to make it easy.Drink this and distilled water ONLY until you get to where you want to be.2)go on line and find raintree nutrition and order graviola max,intense,amazon bitters,and bowel support.You will take these all together follow instructions on bottles.Try the graviola first if its to strong then drop it completely and use the intense instead.Dont take both the graviola and intense just one or the other.3)you can also get some aloe vera juice,i didnt drink it alot but it is a good supportive.Take these pills and drops as directed and drink as much of the tea a day as you can.4)limit yourself to eating only soft food(i just had organic broths and potato soup)which your probably doing now.5)its also a good idea to get some B12 drops to help keep your energy up and strengthen your body.Do this for about a month and then if you feel up to it try to add to your diet.Dont push it you will know when your ready to try something knew.I started by adding eggs and worked my way up from there.In three months i was off everything and eating pretty much what i wanted.This may sound a little overwhelming but its really not.Its a hand full of pills,some drops,and this tea.As for the tea there is no real recipe just make it as strong as you can handle.The key is just to get it in you.Oh yeah if any of this upsets your stomach just take some ginger pills on top of what your doing its the best thing on the planet for nausea.The reason this works is because each one of these things work in tandem to kill or at least seriously beat down any bacteria,virus,parasite,and fungus as well as reestablishing proper gut and intestine function.It may take a couple weeks but you will feel an amazing difference.GOOD LUCK.Also feel free to forward this to anyone that you think it might help and if you would like i can get you in touch with the doc if your not having any success but i truely believe you will.
I have gastroparesis. Tried reglan and adverse reactions as in seizures. I am in Kentucky and My Dr in Louiseville Dr. Wo is a specialist treating Gastroparesis patients. He is also the only dr in my state that prescribes Domperidone. I never got a prescription in my hands it was faxed into a pharmacy and they contacted me for payment $60 or so for one month and I received it in the mail. So far I have had no ill side effects and now just today am up to 3 pills a day when the goal being 4. I took it slow because i was scared honestly. I was afraid of seizures stroke ect. My gastroparesis is severe to the point my stomach has blown up so largely that it actually burst my intestines lining from my stomach pouch. I am a gastric bypass patient which is my underlying cause for the gastroparesis. It was the most painful thing ever to have organs explode. I was home alone with my children in agonizing pain. I told my 18 yr old Mommee's dying baby get me to the ER now. We dont have time for the ambulance to come from the hospital to get me. She got me there. just in time. I was screaming in agony as I never thought i would to my kids 18 &12 that i loved them and im sorry. i couldnt stop screaming while they xrayed me and confirmed what i told them about the damage i felt. they medicated me waiting for the helicopter to take me to louisville 2hr drive from my home. only to get on the helicopter and they said they were gonna take care of me and help me with my pain and they gave me more meds that knocked me out. I was later told then that I coded from too much meds and I woke up after surgery on a ventilator and later the dr said repeatedly that he couldnt beleive i was alive. He said if my daughter had not taken me in herself i would have assuradly died. All this from the gastroparesis, all from the gastric bypass. My stomach could explode again at any moment of any day. I take mirilax everyday. I weekly take magnesium citrate flavored with cherry syrup from a liquire store lol. and if i even remotely get scared i do the enema too. all these things is what they do for me in the hospital from my drs. so thats the home treatment for prevention. along with avoiding raw veggies heavy foods meats things that get stuck and undigests and turns to gases in my stomach causeing bloating, nausea and vomiting)if luckily able to vomit it out) i keep myself from constipation. it helps. i eat very carefully it helps..I take anxiety meds and it helps. I control the pain with demerol it helps and the other meds control the side effects of that pain med so i dont have constipation to block my intestines.all of these are involved with gastroparesis. if the food doesnt move it causes a domino effect. so the domperidome helps move the food. so far so good. its been 3 weeks since ive been hospitilized for the bloated stomach and intestines. I fight everyday to stay alive. my health is in my own hands. the drs can only do so much.Surgically there is nothing more they can do for me. so this is my life. every minute of every day im thinking of what goes in and what comes out and make sure the tummy feels soft. I hope my experience can help some of you and prevent you from going to my extreme because i tell you i pray you dont it really was the most terrifying experience and pain i will ever feel in my life. If you have to go to Dr Wo to get in the program i will be more than happy to share his info because we are a family now. I am here if you need me. I wish you all wellness health and happiness. Peace. oh and I dont take my family for granted I kiss my husband with all the passion as if its my last kiss for him every moment of every day and I spend all my time watching the little things with my girls just in case Mommee ever has it again since it is so unreliable that I dont want to miss anything. Im sorry if ive spilled my heart and soul but please dont let anyone tell you this is not lifethreatening because I can tell you my friends it is. Im sorry to say that. all we can do is fight back!!! peace Tammie Sue aka Mercedes Baby Boo