Gastroparesis Online Support Group

Hello, i'm a 26 year old male out of South Jersey..with severe gastroparesis (egg don't leave the stomach after 6-7 hours (24% at 4 and a half hours)

I been in and out of hospitals all year. Been admitted 3 times. Have severe nerve burning in my left arm. I cannot eat anything, I been living on potatoes and now they are no longer agreeing with me. I been switching from one anti-acid to the next and been on nexium for 3 days and was on a double dose of protonix all year.

I cannot walk around much due to severe weakness and severe nerve burning in my legs mainly left and left elbow with severe stomach burning right through the back. Even typing this message is hard for me because its been messing with my CNS as the symptoms progressively gotten worse.

I cannot tolerate anything with sugar/sodium...

Cannot do:

Any meat

Any dairy

Any grains

Any Greens

Pretty much the only thing I can tolerate is potatoes, and having a real acid problem on top of this I went from 187 to 115.

The pain is ungodly, I gave up on doctors because I been to Cooper, University of Penn, and two other hospitals. All they told me is a antidepressant which did not help, I tried reglan last year no help, and well I feel doomed.

Its like severe gastroparesis with severe ungodly gastritis pain, what can I do???

I take nexium in the morning for the last 3 days and its been killing me everytime I take it its so excruiating, and I was on 2x protonix for a year before this, so now I have a major acid problem with gastroparesis/gastritis and most likely ulcers.

Someone please help, I cannot leave my house because the pain and acid is so bad!!!

Help,

Greg

Post edited by: greg85, at: 10/12/2011 11:03 AM

Hi Greg. Quick question. Have you tried Domperidone instead of Reglan? It may not be avail where you are but it's worth looking into. Also look into Prevacid for the acid. I love that pill. It has helped me so much with my acid reflux. I still get pain attacks every now and then from food but it's a lot better since the domperidone. I used to be in the hospital like ever 2-3 days before I was finally diagnosed. I really hope that you can find something that helps. If not, you can look into bottox injections into the stomach (this needs to be done by a gastroenterologist and not a plastic surgeon) or the implant. They are obviously pretty radical choices compared to taking a pill but if the pills are not working for you and you're in that much constant pain, I'm sure that you're willing to go the radical route if you have to. I know what pain is and I would do anything to get rid of mine so I'm sure you feel the same exact way!

Patrick

I am in a similar situation. I lost 1/3 of my body weight in about 6 months. Most of that time the doctors didn't know what was wrong with me, they tested me for everything from heavy metal poisoning to ciliacs to various cancer. I was sure I was going to starve to death. Eating was so painful I was going up to a week without any food (any calories at all) which would cause my potassium to drop to critically low levels. I spent time in Stanford's ICU, but that didn't help much, they just loaded me up with potassium, electrolytes, monitored my heart. They let me try some experimental nausea medicines, but none of them worked. I lost 5 pounds in the hospital. Since them I've managed to maintain at around 107. I have taken every drug for gastroparesis and none of them have helped, some made the nausea worse. I found Klonopin (clonazopam) was the only thing that helped with the nausea (it is an old drug, it just happens to work for me). I force myself to eat everyday, there are no foods that don't make me sick, though, I've just accepted that it's get sick from food or die. I try to pick foods that I at least enjoy, it's easier to convince myself to eat them. The one drug that has actually helped is Nuvigal. It is primarily used for sleep disorders, but has started to be given to people with severe fatigue from medical conditions. It's called a "wakefulness drug." It doesn't help the gastroparesis but it does allow me to be a lot more functional than I had been when I could barely get out of bed. This probably isn't too helpful. I'm still sick all the time. I'm still terrified of the idea that this is my life forever.

Hello & Welcome aboard!!!

You are not alone! (not that it helps!) but at least you know that there are others who you can share storys/experiances with! That's what this place is all about...People helping people! Please feel free to contact me nite or day 24/7 365! If I can help[ I will & if nothing else you will ALWAYS have a shoulder to cry on if you need it!Try & make the most of your weekend, all my best...

Ronny

Greg, did you get a diagnosis? Sounds like you need a good pain doc. Has anyone ever suggested you have CRPS , Complex Regional Pain Syndrome? Is the the newer term for RSD. Did anything happen to kick off your gastroparesis? Have you sought out a good motility doctor? If not, you need one ASAP.

We have several more patients who need to undergo Gastric Emptying Studies and we will submit our enormously successful results for publication.

We are developing a website to immediately inform everyone...patients and doctors alike...that pyloroplasty should be the new definitive treatment for refractory/severe gastroparesis.

Please keep reminding everyone that it is okay to message me privately. I will be happy to call or email your doctors. I will be happy to see you here in Pittsburgh.

Hello Everyone. Just checking in again. This week, three more reports came back with normal gastric emptying studies after pyloroplasty. We continue to update our data before submitting our 3 year long study for publication. We will immediately let you know when it has been accepted for publication. In the meantime, message me anytime. I do get back to you within a few days. Pyloroplasty is going to be the new standard for refractory gastroparesis (not "stretching", not "botox"...it is a surgical pyloroplasty. I stongly recommend that you message me before considering pacemaker insertion. Pyloroplasty is far superior.

Hello,

I post on (another) "GP-Forum" & told them about this (new-procedure) & was pretty much met with hostility about how this does NOT work! As the old saying goes you can lead a horse to water but you cannot make them drink it!

Hope you have a FANTASTIC weekend! All my best...

Ronny

My daughter was finally diagnosed with this disease at the end of May after a year of telling Dr. something was wrong with her stomach and they kept blaming it on her Diabetes. She lost down to 88 lbs.

We have found a mixture of glucerna and a high protein powder at 460 4x a day that at least keeps her from losing any more weight. He stomach hurts for about 15 minutes after but it stays down and she does have clearer thinking because it meets nutritional needs. Her blood sugars are also under control also. She cannot eat anything else or it comes up. If your not diabetic Boost has a drink that has 360 calories with vitamins.

The severe pain you describe she has the same and we are trying to figure out the best way to deal but it is constant. The more nutrition she gets the less intense they seem to be.

The heating pad after she eats does help relax the pain a bit from her stomach.

Granted we have been working on this for a week as she was in hospital for 3x since beginning of May and spent a week there two weeks ago we just decided we have to take this in our hands because the Dr seem to not know exactly what to do and seem to think the pain is in her head

Hello & Welcome!

The "Pain is in her head!" OMG! It really disgusts me to no end when I hear these (Pompus) people tell you that you're imagining this! We have a (Great!) Doctor here her name here on the forum is "Dr.Pittsburgh" She's here for nothing more than to help us! I was just aproved (2 days ago!) for a "Pyloroplasty" & I can honestly say that without her input I do NOT think my surgeon would have approved the procedure! I strogly urge you send her a (P.M.) it may take a couple of days but she WILL get back to you! I hope you find some relief for your little girl very soon!

Again Welcome to our community & All the best of luck to you & your little-princeess!

Ronny