Post by Penny on Oct 8, 2009 6:56:12 GMT -5
Well, what can I really say?
I have been having symptoms of Gastroparesis since my early 20's... I was lucky to have a haitus from about the age of 26 until I was about 31.... then it returned.
I did not know what gastroparesis was and had no clue that it was behind my mysterious troubles, I just know that I would go from Dr to Dr telling them what was happening and having them ignore me for the most part.
I would tell them that I rarely ate... that I never experienced 'hunger' and that I would have savage bouts of nausea and diarrhea and they would look at me, see that I was gaining weight, and decide that I was simply seeking attention. They would not believe that a person could be eating as little as I said I was and be gaining weight.
In a decade's time I went from 140 pounds to 268! This while eating maybe once a day and maybe 800 calories in all!
Then, last year, something changed.... I started losing weight quickly. In a years time I have gone from 268 pounds to 210 pounds... I have even tried to (now get this) stop my weight loss just to see if I could.... and failed. I became unable to keep down oral medications as well and developed an allergy to all narcotic pain relievers. All of a sudden my Dr's started to get interested and started testing me. I had 2 colonoscopies, MRI's and an EGD that showed peptic ulcers and a stricture in my esophagus but they were still scratching their collective heads.
Then I saw a Dr who said "I think you have a mobility problem, I am going to give you a gastric emptying test". Great, I thought... yet another test.
This test showed a marked delay in gastric emptying, and along with my weight loss things added up quickly.
My big problem now is that I cannot try to take any of the oral medications that are out there and the surgery would be risky (I had a bad reaction to general anesthesia in 1999 and they can't risk it again unless it is life or death) and pain management would be impossible post-op (I went to the Pain Management Clinic at UVA, but they ran out of things to try on me).
My weight loss has sped up a bit... and by my best estimate I will be 'okay' with weight loss for about another 6 months before I enter a dangerous stage where I will probably have to have a feeding tube inserted... feeling every moment of it. (Did I mention that I am also allergic to all adhesieves... as in tape? Think of the fun that will bring)
Had this been caught a decade ago I might have a fighting chance in trying some of the treatments out there... even a few years ago I might have been able to try the oral medications and chances are I would not be where I am now.
The only thing I can take is TUMS ULTRA 1000 mg, and I chew anywhere from 15 to 40 of them a day trying to keep the burning, bloating and nausea in tollerable ranges.
I cannot stand any pressure at all on my abdomen... not a waistband (even underwear) or a seatbelt. My pants are all way too big (the weight loss has helped there) and I have to constantly pull them up. I use a wheelchair (due to a major leg injury) and often pull my waistbad up to my ribs under my oversized shirt so no one can see it to be comfortable.
I am very restricted in what I can eat... any fat at all will send me into a major flair of nausea, diarrhea, abdominal cramping, tachycardia, shortness of breath, drenching sweating and dizziness. Fiber will often have me writhing in pain for days. Dairy products will cause tormenting constipation with bloating and pain. Acidic juices will cause stabbing pains.
Like many I have talked to... when at my worst, if I can eat at all, it is mashed potatoes (plain) and when I am adventurous rice (instant only with every molecule of fiber stripped away).
I avoid eating much of the time because 1- I am just not hungry and 2- it is not worth the pain.
I also am rarely ever thirsty... a drink (average bottle of water at 20 ounces) will last me all day because I am full and just can't drink any more.
I have been having symptoms of Gastroparesis since my early 20's... I was lucky to have a haitus from about the age of 26 until I was about 31.... then it returned.
I did not know what gastroparesis was and had no clue that it was behind my mysterious troubles, I just know that I would go from Dr to Dr telling them what was happening and having them ignore me for the most part.
I would tell them that I rarely ate... that I never experienced 'hunger' and that I would have savage bouts of nausea and diarrhea and they would look at me, see that I was gaining weight, and decide that I was simply seeking attention. They would not believe that a person could be eating as little as I said I was and be gaining weight.
In a decade's time I went from 140 pounds to 268! This while eating maybe once a day and maybe 800 calories in all!
Then, last year, something changed.... I started losing weight quickly. In a years time I have gone from 268 pounds to 210 pounds... I have even tried to (now get this) stop my weight loss just to see if I could.... and failed. I became unable to keep down oral medications as well and developed an allergy to all narcotic pain relievers. All of a sudden my Dr's started to get interested and started testing me. I had 2 colonoscopies, MRI's and an EGD that showed peptic ulcers and a stricture in my esophagus but they were still scratching their collective heads.
Then I saw a Dr who said "I think you have a mobility problem, I am going to give you a gastric emptying test". Great, I thought... yet another test.
This test showed a marked delay in gastric emptying, and along with my weight loss things added up quickly.
My big problem now is that I cannot try to take any of the oral medications that are out there and the surgery would be risky (I had a bad reaction to general anesthesia in 1999 and they can't risk it again unless it is life or death) and pain management would be impossible post-op (I went to the Pain Management Clinic at UVA, but they ran out of things to try on me).
My weight loss has sped up a bit... and by my best estimate I will be 'okay' with weight loss for about another 6 months before I enter a dangerous stage where I will probably have to have a feeding tube inserted... feeling every moment of it. (Did I mention that I am also allergic to all adhesieves... as in tape? Think of the fun that will bring)
Had this been caught a decade ago I might have a fighting chance in trying some of the treatments out there... even a few years ago I might have been able to try the oral medications and chances are I would not be where I am now.
The only thing I can take is TUMS ULTRA 1000 mg, and I chew anywhere from 15 to 40 of them a day trying to keep the burning, bloating and nausea in tollerable ranges.
I cannot stand any pressure at all on my abdomen... not a waistband (even underwear) or a seatbelt. My pants are all way too big (the weight loss has helped there) and I have to constantly pull them up. I use a wheelchair (due to a major leg injury) and often pull my waistbad up to my ribs under my oversized shirt so no one can see it to be comfortable.
I am very restricted in what I can eat... any fat at all will send me into a major flair of nausea, diarrhea, abdominal cramping, tachycardia, shortness of breath, drenching sweating and dizziness. Fiber will often have me writhing in pain for days. Dairy products will cause tormenting constipation with bloating and pain. Acidic juices will cause stabbing pains.
Like many I have talked to... when at my worst, if I can eat at all, it is mashed potatoes (plain) and when I am adventurous rice (instant only with every molecule of fiber stripped away).
I avoid eating much of the time because 1- I am just not hungry and 2- it is not worth the pain.
I also am rarely ever thirsty... a drink (average bottle of water at 20 ounces) will last me all day because I am full and just can't drink any more.