>----- Original Message -----
From: Karla <ifirgit@up.net>
To: Multiple recipients of list ADHESIONS <adhesions@forum.obgyn.net>
Sent: Friday, January 07, 2000 2:43 PM
Subject: New to this group
> 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!
>