I have very severe gastroparesis. They have tried me on reglan, three different drs. No side effects for me but it just doesn't work for me. I tell them that they still give it to me in the hospital. My gi doc says there is no cure and I have been hospitalized for it many times which they have to give me iv nausea meds and pain meds. They had me taking nausea phenagren shots but The nurses cost money to send them out to give you shots each day. I had to put them in myself in the thigh and let me tell you OUCH! I could only do it once a day because of the pain and infection it causes but I am allowed to have it four times a day and now I have to have a port put in. Phenagran suppositories do not help neither does the pill when I can keep it down. I went to Ohio State they put me on marinol which really didn't do anything for me either. I lost a lot of weight but I was heavy set when I got sick about two years ago. I have lost about 80 pounds. they say they can't do anything but try to keep me out of the hospital by nausea meds. It is hard to keep my meds down and I have a long list of meds to take with many health problems. They said the g tube won't work. It will still make you have nausea 24 7 like I do and it is a very thin tube. So I throw up bile a lot. Have no energy even though I take glucerna. They told me the pacemaker or defibrillator in your stomach does not work. Many surgeons had severe gastroparesis patients get it done and it does not work even though some places still use it. A lot of times they just stop or they flip on the person inside them and other things. so surgery is out they said. I am hoping the port will help when I get it done. I also have chronic pain from fibromyalgia and bulging discs and arthritis in the back so it is hard to take my pain medications. If anyone has any suggestions I would very much appreciate it. :)
I am very sorry to hear how devastating your GP experience has been. Your post is over 6 months old, hopefully you are feeling much better, but I will still share some of my suggestions and support. Just to help you better understand where I am coming from, I was diagnosed with GP in the winter of 2001 when my digestion stopped completely and I could only eat a slice of toast after two weeks. Even liquids were a slow go. It took about 6 months before I slowly began to return to eating somewhat normal foods. Sadly the foods I could eat ( simple carbs) really put the pounds on me.
Like you, I suffer from chronic pain of multiple auto immune disorders including Lupus and spine problems. My multiple medical conditions have often reminded me of a very long and unpleasant roller coaster. These problems caused me to leave my career due to being so unpredictable. There were times I thought life looked pretty bleak but I soon learned that there is always someone much worse off and that snaps me out of it.
For several years after my GP diagnosis I was on a GP support message board. I can honestly say that having regular contact with others who have a similar medical condition can be very helpful. If nothing more than to not feel alone in this. Others are a good listening ear, sounding board, and often send the support of sympathy, good wishes and advice they have learned along the way. My GP episodes come and go, often with no known reason socking me pretty hard with tight muscles in my abdomen and rib age. This along with nausea and vomiting are all a real part of it, but I will honestly admit I have never had it to the point you have outlined, requiring the care you need. I have had numerous times where I have had phenagren and IV fluids because I have gotten so bad. Until reading your whole post, I was going to recommend that you try ginger, fresh,or tea, candy, or in capsules, but I think you are a bit beyond just ginger. It still might be a little helpful, but check with your doctor. I love the taste so it is easy for me to take.
I would suspect your doctors have had you work on your diet. Most people do not realize how much a food allergy or sensitivities can effect your stomach and digestion. Dairy is one of the worst. Many people told me to try going dairy free and I would probably see a big difference. It took me a long time to really stop since I love cheese. I had to learn the hard way and since quilting dairy I have far fewer episodes. Is it possible one or more of your medications you take for your FMS, and chronic pain, or even vitamins or supplements are causing a problem for you? Have you or your doctors checked that?
You mention that you are throwing up bile. Hummm, Come to think of it, this does sound familiar. Do you still have your gall bladder? I had mine out and since then I do get episodes where my body will over produce bile like crazy. This will in turn make me feel very ill. Not just nausea but like my stomach is a boiling cauldron. At that point if I can throw up it is a great relief, but otherwise it burns its way thru until I expel it out the other end. No one has offered any explanation or assistance with this. I think often times if we can get early intervention we can nip certain bad episodes from turning bad. But once this GP thing gets going it is a real nasty bugger.
In my case, I think I had a lot of little episodes of GP for as long (about 15 years.) Then I had a major one where I ate virtually nothing for 2 months and lost 55 pounds. My Gastro dr was a bit of a jerk. Among other things he gave me a diagnosis which concluded with little hope. I thankfully found a sweetheart of a much better Gastro Dr who was just the opposite. They had tried the Reglan, but like you it was not helpful for me. This new dr ordered a medication from Canada called Domperidone which has been used for years ( all over the world) with excellent success. It was just what I needed to get back on track. It was removed by the FDA about 10 years previous, because someone had used it on a patient in correctly in massive IV dose and they died. So now we are denied this medication.
While as yet there is no cure, most people learn ways to manage their GP and return to pretty much of a normal lifestyle. There is hope, in fact I think great hope. It is a process, one of learning what the problem are and what can bring you aid, relief, and / or just make you feel good ( like music, sun light, holding a little baby.)
A hot shower or soak in the tub, then a brisk toweling dry, stimulates the body and also aids digestion. Using some soothing essential oils like lavender with a carrier oil to gently massage you abdomen in a counter clock wise motion can help relieve abdominal tightness and, relieve pain, and encourage digestion. Doing deep breathing exercises and guided imagery or meditations are good too. When I feel bad the thing I want to do is go to bed, but if you can push yourself to get outside and take a nice walk you will find it to be a bit of a miracle worker. Considering your FMS and back issues, walking may be doctor recommended there too.
There are a number of other things I could add, but hope you will give me further direction on where you stand today. Hopefully you have already begun to enjoy happier and healthy life since your original post.
Make sure you have the BEST GI doctor... and one who is not only technically talented but has a very good bedside manner. It does matter. If all the Doctor is interested in is numbers you won't have a good outcome.
If your GI doctor can't get you stabalized then go to a major medical center like UCLA, NIH, Cleveland Clinic or Mayo. Those are just a few of the best. Take time to search and find the best center for GI diseases.
Also I don't know if you read my post but Trazadone is a powerful anti-emetic (keeps you from vomiting) and works very well with Gastroparesis. I take 300Mg but I'm a big boy... 250. Reglan should be given in a 10Mg dose 4 times a day or more for more severe cases.
I'm always nauseated in the AM and start to feel some better by noon or so. Due to that I try to sleep in until the worst symptoms are gone. Zofran is a very good anti-nausea drug but you have to get the right dose of anything before it will work. I take up to 8mg if that is what it takes to stop the vomiting.
Make sure you are getting higher doses of Reglan, Trazadone and Zofran since your symptoms are severe.
Get away from the oral pain medications. You can't take those on an empty stomach or they will really mess you up. You can try prayer, meditation, physical therapy, hot baths, get a Jacuzzi tub for the Fibro (I did and it is in my dining room where I use it frequently), Try E-stim for the disc pain, heat, or massage. If you don't have anyone to do the massage for you get a simple device called a "Thera-Cane". You can massage your own hard to reach trigger areas and it helps me.
If none of those measures alleviates your pain try getting onto a timed release pain patch. Try not to escalate your dose as that will only cause you more problems but you gotta get away from the harsh oral drugs in combination with your Gastroparesis.
I hope this might help in some small way. I've had disc problems and other severe spinal issues for many years. I also have had Gastroparesis for decades.
Dont give up. If you keep pushing to find the best doctors and impress upon them how severe your problems are and how they disrupt your normal life you will get help.
I was diagnosed with GP in 2011. At first it wasn't too bad, and the gastro dr rx'd domperidone (at compounding pharmacy). It didn't really work. The gastro dr was absolutely no help other than to tell me what I had after running motility tests. I traveled 150 miles to see a university gastro GP specialists whose only suggestion was to surgically implant a gastro-stimulator. No thanks. None of these drs said anything about diet. I had to find it myself on the internet. Any fried foods make me vomit. If I eat late in the day - just one slice of white bread (no fiber), I wake up with a stomach-ache 10-12 hrs later, nausea, and pass painful gas for the next l0 hours.
After some severe 'stomach attacks', I landed in the hospital for 3 days last Nov. These severe 'attacks' have ceased,thankfully - they found no cause-even did a cardiac catheterization as they said heart problems can be connected to the stomach - but that was fine. After that I went to a naturopath dr., who said stop taking all supplements, and put me on PaleoMeal DF, a pea protein based dietary supplement with vitamins/minerals, and told me I needed to give my stomach a rest, and that even a lot of 'natural' supplements from the health food store could irritate my stomach. I've lost 30 lbs since then, but thankfully can afford to lose the weight. I've been experimenting with diet/food. Never had a problem prior to 2011, and I'm 64. What I've learned is that I can eat scrambled eggs (organic), ripe bananas, pureed spinach, but only in very small quantities. And it seems that anything with yeast (like bread) brings on tons of gas. If you eat early in the day and let gravity push the food down (which your stomach can't), and try not to lay down (hard for me due to severe pain from failed spine surgery-and probably hard for you as well ), it will help.
I'm still experimenting with diet.
I haven't reached the point yet where you have, and I feel so badly for you. I've had to wait 2 months now to see another GP (he must be good to have such a long waiting list... and I can only hope).
I sip the PaleoMeal throughout the day (manufactured by Designs for Health-www.designsforhealth.com). It doesn't seem to upset my stomach and should give me the vitamins/minerals my body needs.
Internet sources say to avoid fiber (all the good fruits/veggies/whole grains, etc we're supposed to eat!.) so I just try to keep experimenting. Zofran and Phenergen don't work, but I'm on lower doses than you are.
Sometimes I get so frustrated by all this I get really upset, but that only aggravates the problem, so I'm working at practicing ACCEPTANCE of what is, to try and alleviate as much stress as possible -
So hope these suggestions might help you, and I hope this new GI dr I see in 3 weeks will be more helpful. Best of luck and I hope you start feeling better soon
Response to Pigletmama: I found your comments very helpful, and I am curious to know how are you doing. I was recently diagnosed in Mexico with slow-stomach emptying. I tried Domperidone but I found that I am allergic to it. I experienced chest and throat tightness. I am currently experimenting with diet and trying to see which food combinations work best for my stomach. I mainly suffer from stomach bloat, and occassional nausea.
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