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Hello, Jim!
I have less than 1.5 feet of small intestine, and a good portion of that
probably doesn't work--I have
struggled all my adult life (since the age of 19) due to a doctor's
mistake--I went in for an appendectomy...
Anyway, I am 35 now, even though my parents have been told many times to
"make arrangements" since I would not live through the night. They
still say that I have less than 2 weeks to live! :-)
There were some accompanying complications, due to kidney stones--I have
nephrolithiasis--"kidney stones due to short-bowel syndrome"-and there
was a time when I was turned away from the emergency room because "kidney
stones are not a reason to hospitalize you". My kidneys had completely
shut down, and I nearly lost them both. When I was finally dragged back
into the E.R., they were shocked at the state I was in--and they demanded
to know why my mother hadn't brought me in before this! When she raised
the roof at them, screaming to all about the medical incompetence, and
how she was going to call the lawyers, they shut up real fast!
It has been this way all through my illness; for the longest time I never
knew that there was anyone else in my condition--my parents were told
that no one in my condition lived more than five years--ever! And that I
would never live to see my 30th birthday. My parents never told me this
until recently.
They said I would never make it without dialysis, and TPN--and yet, I am
still appliance-free (I used to have a raging fistula, and had to use a
colostomy bag because of that. They said it would never be able to be
operated on, until I met Dr. Moussa of UCSD Medical Center).
Since I continually refused to take their life-limiting apparatus, and
refused to live on a machine; many doctors have refused to treat me--and
this is why my health got worse and worse, since I was left without
greatly-needed medication. It has taken me years to learn how to live
with my problems; and yet I have learned how to eat real food (in
moderation, of course!) food such as hamburgers, and greasy stuff (lots of
calcium, and "rocalcitrol"). However, I don't crave these things as much,
and will eat them only when I must--when I am away from my principal
diet.
Which brings me to why I am writing: you are still drinking ENSURE??? I
have never been able to TOLERATE that stuff--it is mostly non-digestible
for a short-bowel patient! What I have found much better, is Perative,
from the same people who make Ensure.
One time, when I had had a seizure because of being turned away from the
E.R. (again!) I woke up after a couple of weeks of hallucinations (I
thought I had been kidnapped and was being held hostage in a footlocker
in a Las Vegas airport--no kidding! ;-) instead, I had had the seizure
due to lack of oxygen (AARDS), and they had put me on a coma-inducing
drug, TO KEEP ME STILL--and kept me doped up on a substance that I am
horribly allergic to--HALDOL!
Anyway, they didn't know, and I couldn't talk--it was one of the
all-time worst memories of my life! When I finally came around, and
actually lived (all the doctors had my parents sign my funeral
arrangements, it was going to be a big funeral, I almost feel sorry I
"blew" it by waking up! LOL!) When I was in the ICU room, and they
started me on liquids, they gave me a Perative--and for the first time
since my illness had began, I actually warmed up! You see, I was
constantly cold, since I was never able to get enough nutrition, AND my
kidneys were always having what my grandmother called "rigors"--I would
shake, and wear heavy jackets in the summer, etc. In the hospital I kept
under huge piles of blankets, perpetually shivering, all the time. But
when I drank that Perative, I knew my life had changed: for I got hot,
and removed the blankets, and then they gave me another Perative, and
wow! It was amazing!
I fought very hard, but I finally got my Medi-Cal (I live in San Diego,
California), to pay for my Perative--EIGHT CANS A DAY! And this has
literally changed my life! I still have problems; but I am able to get
around, and drive, and not worry about losing my bowels in public (I
constantly had this problem before), and I am still underweight, but I
am stable! Perative is for "Metabolically Stressed Patients" and it is
wonderful! There are other things that are similar; but Perative tastes
the best. You might want to consider getting it, but be forewarned: it
is very expensive (something like $14 dollars a can!) but there is no
comparison to Ensure or Ensure Plus, or even Isocal.
Another one that I can use, if there is no Perative available (when I go
into the hospital, not every place carries Perative, and I cannot get
Perative for when I am in the hospital, Medi-Cal won't pay for it),
Lipisorb works too--it is very similar, and is supposed to be for
short-bowel syndrome patients. But check the labels; you'll see that
Perative can free you from having to grind up vitamin tablets, it is very
high in the ones that you need. I do still take calcium and folic acid,
and sometimes an iron shot, and B-12 injections once a month.
Recently, I found something that may be even better than Perative:
"Crucial", from Nestle laboratories. It tastes horrible (unlike the
bland-tasting Perative), but it is higher in calories and vitamins and MCT
oil, and Omega-3 fatty acids; it seems to be a better choice for
unusually good assimilation of these fats that are required by
short-bowel syndrome patients. I am testing it out now (it took me about
a month to get Medi-Cal to switch from Perative to Crucial), and so far,
I believe I can get more nutrition from drinking less at a time; which is
essential for when I am away from home! I hate to stay at home; why
live for so long, only to be a perpetual patient? I cannot stand it,
and I fight for everything, every step, every inch of the way!
well, I hope this hasn't been too much for you to read...I sometimes am a
bit long-winded when it comes to all of this--usually, I don't even find
someone that can understand what it is like to be in this condition. You
keep fighting; and don't worry about what the doctors say about your
longevity or lack of it--this is something we just don't know enough
about yet! Try the Perative, or the Crucial (if you can take that taste!
;-) and see what happens?
Best to you!
--Mark Seven Smith |
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