I have had Gastroparesis that has gotten worse in the last 5 years. I have bouts of not being able to eat any solids and severe vomiting . Here in the states our options for treatment are limited because of the FDA. They give gastric pacemakers on a very limited basis and for what they call a "compassionate" basis and the medicine I took for it at one time caused tics and uncontrollable tremors , I eventually had a small stroke and my neurologist thought it was possible caused by that medicine . My question is if anyone out there has severe gastroparesis and if so what kind of treatment are you using ? How do you control your vomiting and what do you eat/drink ? Thanks .
Oh Anaelena, I want to cry for you. I also have DGP, very badly. I was visiting ER for awhile, 2 per week. We are on a first name basis with them, seriously. We know them so well, they allow me to keep my CGM and Pump and actually log based upon my electronics. Usually when I go in tho, the pain is so bad, I am incoherent.
When I go into full on DGP it terrifies my family. There is no relieving the pain as you know, we are not allowed to have anything to knock us out. I just want to sleep through it. When I go into ER they give me 2 bags of Dilaudid, 2 bags saline, inline reglan and they release me, in pain. I have noticed with mine, it grows stronger every day. Mine is also in the shape of an anchor. It goes straight across my ribcage, straight down to my bellybutton and kind of a smile on my hips. When I go into full on DGP, my husband can stop it every once in awhile with the following horribly dangerous mixture, which my doctors all say is perfectly safe and fine: 2 zzQuils, 2 Advil Pms, 2 Aleve, 2 GasX. That is not dangerous except he gives this to me every 2 hours as it only knocks me out for 1.
I went on a clinical trial here in San Diego in November 2015. I was testing Metoclopramide in nose spray form. This was great, it did not just sit on the top of the rotting food. It did not work either. As with the other forms of Meto, it gave me the shakes very badly. Since this is not on the market nor available, I was given a liquid form of Meto. I still have that bottle, almost full. I will not take any of the prescriptions they think I should take for this. Each and every one was for heartburn of some type and that is not my problem. My problem is nothing is moving, it is sitting there rotting, literally. It smells like landfill when it is finally purged. I have seriously tried everything a medical person has recommended. I give it up to 3 months and if nothing happens or I keep ending up in ER, I stop.
According to the GI and Therapists:
The main rule: At LEAST 5 small meals per day.
Keep a log of what you eat and note foods that cause the DGP symptoms. I cannot eat peanut butter, Baskin Robbins and a bunch of other things. I too went onto the liquid diet. I became so weak I could hardly move, I was not getting enough nutrients. Now, I am still pretty weak but I can do things again. I just do not absorb the nutrients as I should now.
Exorcise. This one cracks me up. There is no way on this planet I am going to exorcise, the motion of moving the stomach makes me black out from the pain.
Try soaking in warm water that covers your stomach. I have tried this and while it used to work, now the pressure of the water against my stomach makes me pass out from the pain.
Lay on your right side. For some reason it is easier for stuff to pass through when people lay on their right side. I was doing this instinctively.
And the last one that is going to get someone punched, breathe. I really would breathe, I am rather fond of it, but when my lungs move in and out filling with air, that makes the pain so bad I will happily suffocate myself.
Mine is like a migraine on steroids of the digestive system. It seems my whole Vagus nerve is asleep.
I had a gastric emptying test done as my medical group would not help me nor would they diagnose me, my husband diagnosed me. At Rainbow Hospital I could only eat 2 bites of a wonderful chicken salad sandwich that was shot with chemicals. They had me lay on the xray table for 90 mintues. At 60 minutes I had 85% of those two bites still in my system. At 60 minutes I still had 80%.
Here is what I am doing now and I have a life again. I still am nervous about trying to go out to dinner, but I can make my doctors appointments. I take: 1 fish oil pill, 2 GasX, 2Phazyme, 1 Aleve at bedtime. The one thing that I am trying to get another DGP person to try, Smooth Move Tea. I drink 1 cup of that in the morning as soon as I get up before I do anything at all, 1 before bedtime. I was in ER and a hospital stay for the last time for my DGP, March 11. This one was very bad, thus the hospital stay. I started drinking the smooth move tea and I have not been back to ER for that since. I figure it is able to leak into the rotting food and move it along, which it seems to do. I have not had that horrid pain since I began drinking this tea. I have not spoken with anyone else who has DGP. So nice to meet you!
I saw you are also here in the U.S. I buy mine at Vons. I see Amazon sells it in huge quantities, which I need.