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Old 08-14-2003, 05:37 AM   #1
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jhw123 HB User
Post gastroparesis

hi,
HAve been recently diagnosed with gastroparesis. I do not want to take the Reglan because i have heard it has terrible side effects. My dr. said i could try motilium, but we were told it would take up to 8 weeks to order from canada. i was wondering if anyone had tried domperidone which is the generic version of motilium and had good results. I was told i can purchase it at a compunding pharmacy with a dr's. prescription but would like information if anyone has done this and from where. Thanks.

 
Old 08-16-2003, 07:53 AM   #2
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I am on Domperidone and have been since March, but I also have to take the Max dose because my stomache is in such bad shape. It has helped, I can eat on some days, but I have a G and J tube and generally have to be connected to a feeding tube for 12 hours a day. My G tube is used when the acid is really bad or I try to eat and it won't digest,(i hook it up to a catheter bag and let the bile,acid or food drain, sometimes I have to use it for a whole day) this was the only way we could stop my vomiting. I vomited for six months w/o stopping. I also have severe pain (chronic Abd pain) but I also have pancreatitis, acid reflux, Gerd, Alkaline reflux, spastic colon, and IBS, and have had ulcers in my stomach and throat and have had H-pylori. If the Domperidone stops working for me they want to send me to Kansas to a motility clinic for a pacemaker. My pain is also so bad that I have been on Diladud since April, it makes my stomache worse even though all my meds go through my J tube (to my intestines) so they are talking about putting a pain pump in my spine. I hope that this Helps you
Andy
By the way I am a female and just turned 24 and do not have diabetic neuropathy so they have no clue how I got gastroperesis, how about you?

[This message has been edited by andylw_00 (edited 08-16-2003).]

[This message has been edited by andylw_00 (edited 08-16-2003).]

[This message has been edited by andylw_00 (edited 08-16-2003).]

 
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Old 08-16-2003, 02:04 PM   #3
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hi,
thanks for your response it did help. i am so sorry for what you are going through. I am scared the same might happen to me. I just have no appetite and if i do eat i take a few bites and my chest feels so full i cant even breathe or throw it all up. I have lost close to 20 pounds in a littel over a month. I also am female and in my thirties. I am not diabetic but had pancreatitis on and off for years. They have no idea how i got this. I just started the domperidone that i got from a compounding pharmacy. I hope it works but my dr. has said in most cases the gastroparesis gets worse. Let me know how you progress. This is all so new to me im really scared about the future. Any information i can get is helpful. Best of luck to you. Take care. J.W.

 
Old 08-16-2003, 02:39 PM   #4
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Hey,

My Doctor tells me it will just keep getting worse also, don't let your weight loss get to the point mine did where i became anemic and started to lose my hair and teeth were bleeding before they decided i needed Tpn's and then my liver enzymes went up and they said that being on TPN's can cause liver damage so we decided to put the J tube in and start tube feeding. Did your gall bladder every go wrong? My family and I have the idea that maybe my pancreatitis and gastrproesis was caused by my gall bladder not functioning correctly for two years before they removed it.

I also have a friend that has pancreatitis ver badly and is only 21 and they are going to put a feeding tube in her to give her pancreas a break. Have they ever mentioned this to you?

 
Old 09-29-2005, 07:45 PM   #5
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kcgclt HB User
Smile Re: gastroparesis

Quote:
Originally Posted by jhw123
hi,
thanks for your response it did help. i am so sorry for what you are going through. I am scared the same might happen to me. I just have no appetite and if i do eat i take a few bites and my chest feels so full i cant even breathe or throw it all up. I have lost close to 20 pounds in a littel over a month. I also am female and in my thirties. I am not diabetic but had pancreatitis on and off for years. They have no idea how i got this. I just started the domperidone that i got from a compounding pharmacy. I hope it works but my dr. has said in most cases the gastroparesis gets worse. Let me know how you progress. This is all so new to me im really scared about the future. Any information i can get is helpful. Best of luck to you. Take care. J.W.
I feel for all of you who have had gastroparesis and pancreatitis. I have had both and know not only the physical pain it causes but also the emotional wear and tear it can take on you.
I had pancreatitis twice and gastroparesis as well,(I am female, mid 30's,not diabetic, no family history, still trying to figure out why). I was on Domperidone and it did help me quite a bit. I was fed by TPN for a few months with pancreatitis the first time. The second time around I had bouts of only being able to eat a very limited diet and liquid nutrition shakes for a year on and off. Now I am symptom free and doing great. I can only chalk it up to good luck but the domperidone did help me while I was suffering. Please know that gastroparesis does not always get worse. One thing that I recently found out that has explained a bit of my panreatitis mystery is that I am a carrier of Cystic Fibrosis (I do not have CF but carry the CF gene). I wish you the best of luck and a speedy recovery.

 
Old 09-30-2005, 02:53 PM   #6
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Re: gastroparesis

I also suffer from gastroparesis but mine is quite mild compared to what has been mentioned here. What I found interesting is that I also am a carrier of cystic fibrosis.

 
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