Introduction from Kathy
From: International Adhesions Society (tracy.joslin@adhesions.org)
Sun Nov 13 23:05:57 2005
From: adhesions@adhesions.org [mailto:adhesions@adhesions.org] On Behalf Of
Kath
Sent: Saturday, November 12, 2005 1:35 PM
Subject: Re: ADHESIONS digest 400
I just wanted to introduce myself to the list.
My name is Kathy and I have adhesions that were
initially caused by a ruptured appendix. As with
most of you on the list, I went through the usual
poor treatment by doctors, the suspicion that it
was all in my head, being treated like a dishonest
drug seeker, etc.
I'm 33 now. Starting when I was twenty, I've had
many many surgeries--all were laparotomies because
I had dense scarring with the abdomen and no free
space inside. I lost my left ovary at 20. Six months
later they had to go back in and take my right ovary,
putting me into menopause at 21, three weeks before I
got married. During that surgery I suffered injury to
my small intestines, which caused more scarring.
Shortly after that, I started having right ureter
obstructions and small bowel obstructions. I've had a
million cystoscopies to place stents in my right ureter
to alleviate the kidney obstructions. I've lost most
of the function of my right kidney and live with chronic
obstructions, which keeps me from being able to drink
enough fluids to stay hydrated.
I've also lost 30cm of my ileum, the last part of the
small intestine that is responsible for reabsorbing bile.
Because of that, I have diarrhea 10-30 times a day, every
day of my life. I can't eat any high residue foods,
including almost all fresh fruits and vegetables.
I've also lost a part of my bladder, because I developed
a fistula between my small bowel and bladder, and was
having bowel movements through my bladder. I've also
had a hysterectomy. In total, I've had ten laparotomies.
I'll never have another laparotomy, even if the doctors
tell me I'll die without it. After those laparotomies,
my small intestines basically fall apart and can't heal,
and I get fistulas all over the place. I've had them
from bowel to bowel, bowel to skin, and bowel to bladder.
I've had massive bacterial and fungal infections. I
don't think I'd survive another laparotomy, and keep my
fingers crossed that I won't have a bowel obstruction
that requires surgery. However, I'd much rather die of
a bowel obstruction (yes, I know what they feel like),
than from the surgical complications that I've
experienced after every laparotomy.
Anyway, I was wondering if any of you have heard
of the Medtronic morphine pump? I was on a LOT
of pain medicine, which wasn't helping much, until
I got the pump. I don't want you to think that I'm
somehow advertising for this pump, because I'm not.
But it was the one thing that really made a difference
for me and gave me back my life. It's not without
its risks and it's not for everybody, but I think you
should at least be told about it. It's about the size
of a hockey puck and it's implanted under the skin of
my abdomen (but not IN the abdomen). A catheter leads
from the pump into the spinal cord, where it continually
infuses a small amount of pain medicine. In my case,
it's morphine, but everyone is different. I still have
to take Oxycontin from time to time, but not often at
all. When I first heard of the pump, I didn't get my
hopes up because nothing else in the past had worked
for me. I didn't much expect this to help, either.
But it has helped a great deal, enough for me to live
a sort of normal life. The pump has to be surgically
implanted and is all internal. They refill it once
every four months, using a needle through the skin on
my abdomen and into the pump.
One other thing: has anyone heard of the term
"abdominal cripple?" The other day, my doctor told
me I was an abdominal cripple. Quite shocking!
I don't think of myself that way.
Kathy
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