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I first learned that I had adhesions somewhere around 1993. Even then I wasn't told that it was a problem. The way they explained it was that it was a major inconvenience to them as they attempted to perform each surgery. It wasn't until 1999 that I learned that adhesions were a disorder in and of themselves. Once I began to educate myself, I realized that I knew more than any of my doctors....or at least more than they ever cared to admit.
I learned from reviewing my records that I had adhesions at least as far back as 1987...when I had a hysterectomy. These had to have developed from my first real abdominal surgery in 1978. Once again, for female problems. Since 1991 I have undergone 28 surgical procedures. None of them were specifically for adhesiolysis, but I have learned that my original problems were caused by adhesions and could have been prevented if my surgeons had themselves been educated to this disorder. Adhesions were lysed during each procedure. I live now with no bladder and a urostomy because of problems that developed due to adhesions enveloping my bladder. Initial attempts were made at bladder reconstruction, but never did they simply attempt to remove the adhesions.
My problems multiplied with each surgery. Adhesions formed around my bowel tissue causing an obstruction and additional surgery for bowel resection and hernia repair. Hospital borne infections caused additional problems and I soon found myself having several episodes of different fistulaes with the worst being between my bowel and my bladder. Repairs could not be made so my bladder was subsequently removed.
Life has been hell since then. The urostomy presents a weakness in my abdominal wall allowing my abdomen to herniate repeatedly. I can actually feel hernias occurring as I sneeze. I have never had just one hernia when they have gone in for repair. I have had as many as 15 on a number of occasions. At this point in my life I have no abdominal muscle remaining. I have a hernia the size of a football surrounding my urostomy. The adhesions have surrounded the ureters and kink them off, causing me to suffer repeated episodes of urosepsis. The urine from my kidneys cannot drain properly and it refluxes back into my kidneys causing infection throughout my urinary system as well as my blood. This is now an ongoing problem in my life. In April of 2001, I suffered with renal failure for the first time. My family was told that I might not make it, but if I did it would be only a matter of time before it happened again. They were told that eventually my kidneys will not recover and I will die. I have been told that I am not a candidate for transplant or dialysis. I had been scheduled to have surgery to repair my urinary diversion as well as build a new abdominal wall but after I suffered respiratory arrest and eventual cardiac arrest plans changed. Now they were going to attempt to do a multiple surgery attempt at repairing everything. I underwent surgery to place tissue expanders in July, but they were removed in emergency surgery when my body rejected them due to the continued presence of the hospital-borne bacteria in my body. I was told that I would never be able to have any foreign materials used in my abdomen. It was at a follow-up appointment that I was told by my surgeon that the reconstructive urologist was unwilling to perform any surgery on me. He felt that he could do nothing to improve my situation. It did not matter to him that I leak urine constantly and am forced to be homebound because of my humiliation.
It is important for me to tell you that of the 29 surgeries performed since 1991, all but the last two were performed by the same doctors. I placed my total trust in these doctors. I believed that they were working in my best interest. It wasn't until after my 27th procedure when there was no success achieved at all, not even temporary, that I began to question why I allowed them to do this to me. They never told me that adhesions were a problem....they were always mentioned as an aside. In fact, after being questioned about my adhesions being a problem, I was told that even though I had massive adhesions...the worst this doctor had ever seen....they were not a problem. They did not cause the pain that I always had. They never attempted to place or even offered to place any adhesion barriers. When the doctor learned that I needed additional surgery and was questioned further regarding this he stated that this surgery would not end my pain. He quickly realized that he had been caught up in a lie. The hernias did cause pain, but it was not that debilitating pain that I suffer with from adhesions. This doctor took the materials which we had presented to him regarding adhesions and threw them in the garbage. He had no interest in learning. He only wanted to subject me to more surgery. I knew then that I could never have him operating on me again. It is with disgust that I tell you that I did contact these doctors again. While my surgeon is retired now, the reconstructive urologist who did my initial surgeries along with the surgeon is still available. After the rejection by the doctors in Chicago, my only hope lied with my initial urologist. I made a quick appointment to see him, only to be told that he does not perform that type surgery anymore and that he doubted whether the physician now performing this type procedure would be willing to touch me. He did request copies of my records, but after two months I have heard nothing. I can only assume, after repeated unreturned phone calls, that he was correct.
Throughout all of this time I was never offered any type of pain management. I was always told that I could live with it. There was no reason for my pain. It wasn't until I educated myself that I learned of my rights and began to obtain pain management. Even then, it has been a struggle as doctors are unwilling to prescribe the medications that allow you to live in minor comfort.
I sit here now...ready to die. I have no hope. I cannot travel around the country anymore trying to find a doctor willing to help me. I am not physically able to do so. Nor can I emotionally handle them telling me that they won't touch me again. I do not understand why a doctor would not make every attempt at repairing my urinary system if there was even the slightest chance of improvement. It also baffles me that these doctors are so insensitive to how inhumane my life has become that they refuse to consider a repair.
I was on disability for 10 years. When I felt up to it I returned to work. I wanted to contribute to society. I had previously used my trial work period, so I lost all entitlement to Social Security. When I became too sick to work a year later, I had to refile for benefits. Because I am a federal civil servant I suffer an offset of benefits. My civil service pay is minimal and at the time that I lost my benefits I was receiving a total of $100 in Social Security pay. That was after 10 years on the program. I was fortunate to be found disabled right away. But, I learned that I would start back at square one with Social Security. To date I receive under $700 in Civil Service and nothing in Social Security. I am entitled to the cost of living increases, but that is withheld to go towards payment of Medicare. I do not even receive enough to cover that monthly charge. My debt with the federal government increases as I cannot afford to repay the Medicare. I cannot afford to purchase my monthly medications...intensifying my problems.
Please find some way of helping people who suffer from adhesions....it may be too late for me, but we must prevent this happening to others.
Somewhere up in the stars...My angel and me!