New to this group

From: Karla (
Fri Jan 7 13:43:15 2000

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 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!

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