First, I would like to thank Bonnie for taking the time to put the information out there about gastroparesis. Yes, we may have been diagnosed, but the majority of us still have NO IDEA why we have Gastroparesis. We have other underlying medical problems that cannot be explained, but they are all believed to come from the same place. The majority of those with no known reason are believed to have either major autoimmune or autonomic nervous system disfunction.
Domperidone is one of the only treatments that GP patients have any good results since the FDA alert, it will be nearly impossible to obtain the medication. Once the medication supply is gone, many of those with GP that are still able to eat with Domperidone will be sentenced to alternative means of nutrition either by feeding tube or via a central access IV solution.
I know the fact that it's been stated there is no cure, I think it also should be known that GP has a mortality rate also. Gastroparesis kills.
Many with Gastroparesis also suffer with severe IBS. The IBS medications make the Gastroparesis even slow down the stomach even more causing even more problems.
Consider going to sleep one night healthy and happy only to wake the next day horribly sick. It can literally attack that quickly with no cause being identified knowing no age, gender or race.
I was a very active wife, mom and ER nurse. I woke up July 1, 2000 with severe nausea, vomiting and abdominal pain. It took 9 weeks to diagnose GP and I lost 65 pounds in that 9 weeks. Within 11 days of being diagnosed, I had my first set of feeding tubes implanted (one in my stomach to drain it's contents and one in the small intestine to feed bypassing the non functioning stomach).
With the treatment options being so limited, I have tried EVERYTHING (the whole 5 or 6 options with 3 of the options involving surgery). Now, I not only have the two feeding tubes, but I also have a central line access for IV therapy and IV medications. The medications are only an attempt to control some of the symptoms. Most days, the medication doesn't even take the edge off enough to be functional.
I have not even made mention of the other symptoms GP patients suffer with like the horrible bloating making one look 7 months pregnant, the fullness after only a bite or two of food, the life threatening electrolyte imbalances, sleep disturbances (it's kind of hard to sleep with unbearable pain and relentless nausea), horrible dental problems due to vomiting and acid reflux and situational depression. We have NO control over our bodies. Recent research by one of the top specialists treating GP patients finds a link between blood clots and gastroparesis also.
Imagine taking the other medications to try to control the horrible symptoms and you have NO idea when or if they are going to take effect since there is no way of telling how long it will take the stomach to empty in order for the medications to absorb.
Gastroparesis patients are very active politically, because no one else is going to take up our cause. We are too sick to go to Washington to lobby to get our medication back (I know IBS patients went to DC to fight for their medication). I personally organized a National Awareness Day for Motility Diseases (namely GP since it's symptoms are far worse than the IBS symptoms). Rather than going to Washington DC, our patients went to the local offices of their elected federal officials. Even with going to the local offices, many couldn't participate, so they wrote letters, sent faxes and emailed.
Currently, GP patients are calling a contact at the FDA to voice the fears of having to live without the medication that is needed so badly. GP patients are also writing letters to their members of Congress, and paying special attention to contact the members of Congress involved with the Digestive Diseases Caucus.
The FIRST International Task Force Meeting on Gastroparesis didn't even occur until May 17, 2003!!!
Whether I agree with the current administration in Washington DC doesn't matter one way or the other. I am not using our plight for a political agenda. All GP patients want is a right to take the medication that has helped some.
I was appalled to read that one respondent to the original Domperidone post accused the horribly ill young woman of trying to use this issue to bad mouth those in Washington DC.
I'm not trying to belittle anyone's medical problems. It's just the gastroparesis patients have a sense of urgency since we know the longer we are sick the more likely we will either die from the gastroparesis or complications of gastroparesis.
I lost 4 GP buddies last year alone. I am tired of burying my friends.
Domperidone does nothing for me, but I will help lead the fight to get the precious drug back.
I know I have rambled, but it's 2:30 AM EST, and I have a procedure scheduled in less than 11 hours due GP related problems. The pain is horrible and I'm still awake. I welcome the sedation tomorrow, because I am guaranteed a few hours of uninterupted sleep.
"Being sick is not a competition, if your illess alters your life in any way, YOU ARE SICK!!!"
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Re: DOMPERIDONE
