Life Expectancy with GP?

Has anyone read what is the possible life expectancy with GP? How long can the body go on with this disease?

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Hi LizAA I have motility disorders, there is no time limit to any of these disease. It depends on each case and the compilications with it. Try and go to this website by Marie-Angela who has been a great support to all of us, and you will feel much better http://gimotility-blog.blogspot.com/2009/02/thirty-years-living-with-digest ive.html. As for me I never think how long I'm going to live I try to llive and enjoy some of the good days and not think of my diseases. Hope this will boost your moral. Dalalf

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GP does not, in & of itself, shorten life expectancy AT ALL. there are many with GP who live long and, in many ways, quite "healthy" lives thanks to successful treatment/ management, lifestyle/ dietary adjustments, etc. many illnesses/ diseases bring with them an automatic prognosis of shorter life expectancy but GP is not one of them, something that will hopefully ease your mind at least a bit!

that said, there are some individuals with GP who DO have shortened life expectancies due to complications that are related to either the severity of their GP (&/or other motility disorders such as CIP) &/or due to an underlying disease/ diagnosis that is the cause behind GP & which, independent from GP itself, might shorten life expectancy. i happen to be an example of both of these instances as my GP/ CIP is in the most severe category such that i have had complications that have brought me VERY close to losing my life on more than one occasion, a reality that is now part of my "normal" rather than anything out of the ordinary but NOT at all "normal" for folks with GP in general. my complications have largely been related to sepsis/ septic shock caused by overgrowth of GI bacteria getting into my bloodstream (due to the degree of dysmotility in my intestines). additionally (though not unrelated) my underlying diagnosis of autonomic failure (aka progressive autonomic neuropathy) which is the "cause" behind/ for my GP/CIP is, for me (again a rare instance rather than the norm) a diagnosis that shortens my life expectancy (due to its progressive nature of multi-system deterioration/ break-down throughout my body including, but not limited to, my GI tract).

so...hope this helps clarify. all in all i suppose the best answer is that there is no one uniform answer...something you'll find to be the case for many if not most aspects of GP/ dysmotility. b/c while there are certainly things shared by many there are just as many aspects - if not more - that are unique to each of us as individuals. as such, while many (if not most) of those with GP would be considered to have entirely normal life expectancies, there are others who do fall at the other extreme - me included - wherein life expectancy is considered to be considerably reduced. while there is still a large range of prognoses amongst those on IV nutrition/ hydration, as a general rule it is probably fair to say that it is from within the population of GPers who - due to comorbid CIP &/or other health-issues - are permanently dependent on central line access, IV hydration/ nutrition, etc that the sickest individuals would be found.

ultimately, though, NONE of us knows how long we have ...GP or no GP. at the risk of sounding trite, the healthiest person in the world could be hit by a car tomorrow despite having expected a long life; on the opposite side of the spectrum other people surpass the prognosis handed down by professionals all the time. i was in fact offered admission to hospice two years ago now this spring - an admission that is contingent on a prognosis of 6 months or less - and have been told more than once by more than one of my doctors that "no one" expected me to still be here. yet obviously here i am:-). i am by no means "cured" nor has my underlying diagnosis changed nor has the expectation/ reality that i will not likely be someone who dies of old age & will instead likely die before my parents & others in the generation(s) "ahead" of me. BUT whether i have days or months or years remaining i am one of the many people who are living proof of the fallibility of human prognostication!

that said, the bottom line is still that most of those with GP have entirely normal life expectancies, aka life expectancies that are no different from the rest of the population. those who frequent this & other support groups, discussion boards/ forums, etc tend to present a somewhat distorted view of the GP population b/c participants tend to be mainly those who are newly diagnosed (and thus have more questions/ concerns for a period of time) and those with more uncontrolled/ severe signs/ symptoms &/or who, regardless of illness severity, are having a harder time coping/ adjusting over a longer period of time. in short those who are doing the best don't tend to need the support utilities past a period of initial diagnosis/ adjustment. as such those who ARE more actively involved tend to present a picture of a sicker-than-average GP patient population. the same could be said for many support forums/ groups - online or otherwise - for many if not most illnesses/ diseases.

so...while you will & likely already have seen/ heard a number of "horror stories", in reality the percentage of GP patients who experience life-threatening complications, who are permanently unable to eat or drink at all from a young age, who are permanently dependent on IV nutrition/ hydration (aka TPN &/or hyperal), etc is quite small.

for most GP has an effect on the the QUALITY of one's life - ideally as minimal of an effect as possible of course - but no effect on the QUANTITY. in medical/ public health lingo it would be said to effect one's MORBIDITY (aka quality) but not one's MORTALITY (aka quantity/ life expectancy).

hope this helps,
:-)melissa in ohio

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I agree with Melissa. It's not the GP that would kill someone, it's the complications from it that could. I, too, have escaped death a few times. But that's from massive infections and cardiac complications (from my autonomic neuropathy). People can also die from malnutrition or dehydration, so it's very important to be sure you are receiving adequate nutrition and hydration, which are big issues with GP.

Mimi

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Wow Melissa,
I am blown away by your knowledge, your insight, your view and how powerful your message is. I am so glad that you posted.
Nancy

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I have also heard that managed GP does not alter life expectancy, although the disease may progress. I have a fifty percent chance of inheriting a disease that could cause rapid death in the next few years. For a while, all of this was an issue for me.
But you could also be hit by a truck tomorrow.
So, since no one knows, perhaps we should all take the attitude of "Sunfish" and try one day at a time.
Focus on management. Leave the big picture to God.

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I read a journal article about gastropareis recently that said it pretty well. The sentence that struck me went something like this: "While gastroparesis is not fatal in most cases, these are truly miserable patients."

At first, I wasn't sure if the author meant we FEEL miserable or were unfulfilling to have as patients. Reading futher, it became clear that the author meant we suffer a great deal with nausea, pain, and/or vomiting, often every single day of our lives. He was advocating the FDA take a less stringent approach with GP medications and therapies, perhaps clearing them for use without quite so lengthy a review period and taking a more lax approach to rare side effects, like heart arrhythmias. The idea is to let us choose what risks we are willing to accept in order to to get some measure of relief. I am taking domperidone from Canada and am getting ready for the not-yet-fully-approved Enterra gastric pacemaker, so I apparently agree. Still, I had to laugh at the wording and suspect it was a bit of a freudian slip on the author's part. I'm sure both interpretations are true.

Also, points to know when you have GP:
1. Fiber is to be avoided. It can cause a bezoar.
2. The more liquid a food is, the better it will be tolerated. If you are having problems, try all liquids for a while.

nolagirl

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nolagirl,

Is Domperidone over the counter in Canada? And what if any are the side effects of this med? Thanks.

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Hi Hillcrest,
Domperidone is not an over the counter med in Canada..... you need a doctor's prescription for it. I have not had any side effects thus far from it, thank goodness.
Shelby

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I agree with most all that has been (well) said here....some people don't know that Johnny Cash had GP and died of COMPLICATIONS related to GP, but again, it's the severity and complications related to GP that causes the problems. But I am also a true believer that it doesn't matter what you have or not.....we have to live today for today and when it's our time, it's our time.
We manage this disease and it's side effects to the best of our ability and try to live well in the interim...
i used to be VERY scared about the mortality rate of this disease...even though mine has progressed rapidly and has caused problems more numerous than I have time to say, I am still here and living my life...one day at a time. Seems to be the best way to have a life without regret.

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I had no idea that Johnny Cash had the disease! We need someone famous who is alive who has the disease to help get the word out!

Mimi

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There is someone...a woman....but I can't think of who at the moment, but it will come to me...Payton Manning's father, (Archie) also died from the same thing....the thing is, we need to get money for research but it continually goes to IBS...not that I wish it wouldn't, but we DO need SOME money to research ours! i was told it's because they know so little STILL about the Central Nervous System that attacking the autonomic is still on the back burner....
Dr. Abell is trying to do reearch...one thing he said he found is that Dyslexia may be a key....how exactly that fits, I don't know...I didn't think it was true until i told my Dad, and after 48 years, I learned my Dad is slightly dyslexic!

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