I am a 43 year old woman who has gone through 26 operations since 1991
and have been told that another one is on the horizon....soon. I feel
that it all began back in 1978 at the age of 22 when I had surgery while
I was in the army. I was told that tests showed that I had growths on
my uterus and that I may have to have a hysterectomy. Fortunately, that
was not necessary. I was told that my uterus was covered with
adhesions. However, 9 years later in 1987 I underwent a hysterectomy
because my uterus was supposedly double the normal size. With all that
I know now...I really wonder if that was true and if I would have been
able to have another child. I remember that extreme pain that I was
having and have begun to think that it was due to the adhesions on my
uterus. In 1991 I had to have a bladder augmentation surgery. That was
not successful so they made a new bladder out of bowel that same year.
It was at that point that everything went to hell. I developed problems
with infections that required surgeries...and shortly after I recovered
from them suffered with an obstruction of my bowels. Each and every
time I have developed infection. Soon after doctors found that I had a
huge hernia and went in to repair it...only to find one huge hernia and
15 small ones. They put in mesh..that was only to become infected and
had to be removed. I was doing pretty well...if you can call 6 months
without surgery well....until I developed a fistula from my bowels to my
bladder. I had exploratory surgery where they tried to find the fistula
and repaired any areas that looked bad...only to come out of surgery
still having stool in my urine. Two weeks later my bladder was removed
and I was given a urostomy. I have continued over the years to have a
minimum of 2 surgeries per year for hernia repair. However, having been
on disability for almost 10 years I finally began to feel like I could
contribute to society by going back to work. I worked as a clinic
coordinator for the VA and spent half of my week in a city across the
state and half here (I was temporarily replacing someone who quit
without giving notice). In January of 99 I developed urosepsis for the
first time. I had a temp of 105 when I arrived at the emergency room of
a hospital in a town near by (the emergency room here was "too busy" to
see me right away). When I informed my urologist of this diagnosis he
said that it was just a fluke...but to let him know should it develop
again. In March I had yet another hernia repair only to be discharged
and end up back in the hospital here in my hometown a day later...the
diagnosis again was urosepsis. For the next four months I don't think I
was ever free of that infection. In May the doctors discovered that my
ureters were not draining when I sat or stood and it was backing up into
my kidneys. All that sitting while at work and during the long drives
was ruining my kidneys...yet the doctors could not find a date where
they could get together for surgery until the end of August. I was told
to stay in bed as much as possible. The day after my surgery the
urostomy nurse noted that the surgery had not helped...and I am back to
square one. I question why I have allowed one surgeon to operate on me
26 times and am considering allowing him to do so again. It is not that
I haven't sought other opinions...I already go to a teaching hospital in
Milwaukee for everything (but I swore that I would not go
back.....well...that is until now.
I have seen more doctors than I ever care to acknowledge. I have been
to the University of Wisconsin, Marshfield Clinic, Mayo Clinic, Lahey
Clinic in Boston and my last ditch effort was to Johns Hopkins in
Baltimore in the month of October. While I was there I noticed that I
had developed another hernia in the area of my urostomy and pointed it
out to my doctor. They were very encouraging as to what they could do
while I was there..but when I returned home and ended up back in the
hospital twice my doctor spoke with them and was told they would not
perform surgery. They told him that another surgery would kill me...but
I am in a no win situation because I have also been told that if I do
not have this surgery it will kill me too. My primary care provider
here in town has been baffled by what is going on and spoke with a local
surgeon whom absolutely refused to touch me. After days of much pain he
finally convinced the doctor to reevaluate me and a ct was ordered. It
showed that the hernia was absolutely huge...hmmm...I think I knew that
since I look 9 months pregnant on one side. This surgeon said that he
would contact some specialists across the world to see if they could do
something or at least give him some advice as to what he could possibly
do if he were to do the surgery. I spoke with him on Tuesday to see
what he had found out and was told that no one wanted to touch me....but
that if I wanted he would research some more. He told me that I could
live with my life the way it is (I forgot to mention that because of the
size of my newest hernia my urostomy appliances do not seal and I leak
all the time and am housebound.....a lifestyle that I am not willing to
have) or I could have surgery and die. This is the same surgeon that
performed Christine's operations and it was also the same day that
Christine passed away. I know now that I never wish to hear from the
man again. I know that I need to take care of this hernia...he even
told me that eventually all of my intestines will come through
it...therefore I have recontacted my doctor in Milwaukee to see what he
has to say. I have 2 beautiful granddaughters that I want to be around
to enjoy....but I know that I cannot enjoy them the way my life is now.
I also suffer from very high uncontrolled blood pressure but it is the
feeling of the doctors that this is due to all the pain which I have. At
one point I had a ct scan that showed a mass of adhesions in my
abdomen...but I was never really told that this was a condition or a
disease that could be dealt with. I know now that with each operation
more adhesions will appear...everytime they have operated my bowels have
been strung up to my abdomen by the adhesions. It has only been since
Bev contacted me....we have known each other for a long while and some
little birdie (I want to know who that was) told her I had
adhesions....that I have become aware of just how devastating these
adhesions can be and what they can do. At our first support group
meeting I was witness to the thrill that Christine had knowing that
there was a reason behind all of her pain and believe me she was just so
excited! It really pains me that she has come to this end and to be
honest....I am so scared now...it could have been me! Each day I have
asked God to end all of this for me, but ultimately I know that I am
serving some purpose. I will not let Christine's death be in vain...I
will fight even harder to find a solution so that Chris may have another
victory! God Bless you Christine!