I was in the military and shortly after the birth of my daughter began having a lot of pain...pain so bad in my abdomen, but worse yet in my back...so bad that at times I could not walk. (It is only now after being in this group that I realize this all has been related) I had an ultrasound that showed something (hey...its been over 20 years and I don't remember ok!!! lol ) on my uterus. I was prepared by the doctor to have a hysterectomy. At the time I was only 22-23 years old and wanted more children. I was so angry...so mad....but I don't really remember at who...I just remember the anger. As it turned out...I did not have the hysterectomy. When they got in they found my uterus was covered with fibroids. So I was saved...or so I thought...and would be able to have more children. I went on to have 5 miscarriages and several operations for ruptured cysts. I was always getting this shooting pain when I sat down....straight up through the vaginal area. I remember driving down to Milwaukee to see a special gynecologist. He did a biopsy...you know that great big needle right up inside...and then I had to drive home over 3 hours away. I was by myself and had been told that I would not be able to have any more kids and that I needed a hysterectomy. That was performed in 1987 and until Bev and I went through my surgical reports I have often wondered if that hysterectomy was necessary...or if it was adhesions and something else could have been done. It did turn out that the hysterectomy was necessary...I had very bad polycystic ovaries.
I had been having trouble since I was in the military....they thought I had MS...in fact I was even diagnosed with MS. I had an MRI that showed the white areas in the brain...only in my case they were not in the area of the brain normally associated with MS. Since they did not know much about the brain they just called it MS...but today I highly doubt that is what I have or had. I have not seen a neurologist in years....the biggest reason being that I have so many other problems going on that the neurological problems I have pale in comparison.
In 1989 I became unable to urinate on my own....what they thought was a complication of the MS. I had to straight catherize myself every few hours. Then in 1990 it changed to where even though I had catherized myself I would lose urine...with no warning that it was going to happen...no feeling either. I would be out shopping and it would just come. I was also having the same problems with my bowels...not as often...and I would get the sensation that I had to go...but if I was not within 30 seconds of a bathroom I was in major trouble. I sought out the care of a urologist down in Milwaukee (actually I had been referred to him by a doctor at the VA) that after testing felt that I needed a bladder augmentation. So in October of 1991 I underwent the augmentation....meaning they went in and removed the bad sections of my bladder and replaced it and made it a little bigger with sections of bowel. That surgery proved to be unsuccessful so in May of 92 they made an entirely new bladder from my bowel. That surgery worked. Upon reviewing my surgical reports we have discovered that my bladder at both surgeries was covered with adhesions....basically saying that my problems could probably have been dealt with if they had taken care of the adhesions.
Each of these surgeries brought problems with major infections. The first one brought a major bout with c-difficile (continuous diahhrea) where I lost 75 pounds in one month. After the second surgery I learned that I had MRSA (methyl-resistant-staph-something or other). I had to undergo massive amounts of iv antibiotics each time...and carry the MRSA with me to this day. Shortly before Christmas of 1992 I began having intense abdominal pain and bloated to where I looked nine months pregnant. I was admitted to the hospital where they felt I had an obstruction. I spent Christmas in the local hospital, but was discharged shortly after (they said I didn't have an obstruction) and was told to follow-up in Milwaukee at my appointment which was scheduled for January 5th. I did wait until January 5th to see Dr. Berger...the GI specialist that I had been seeing because of my inability to control my bowels. When he saw me he immediately ordered a ct scan and within one hour I was in the operating room with a bowel obstruction. It turns out that I had one huge hernia and 14 smaller ones. Apparently the bowel had gotten strangulated in one of the hernias. The surgeon placed a prosthetic wall of gortex and marlex mesh in my abdomen. I again developed a major infection...but this time I had to undergo several more surgeries as they removed segments of infected mesh. It was during one of these infections that I developed a fistula from my bowel to my bladder. They did an exploratory laparotomy to try and repair the bowel but could not locate the fistula. They had repaired an area that looked suspicious, but when my bowels recovered from the anesthesia the fistula remained. Two weeks after the laparotomy they went in and removed my bladder leaving me with a urostomy (stoma that drains urine through my abdominal wall into a bag attached to my stomach). Since that time I have had surgery after surgery for hernias surrounding the urostomy site. I have had my urostomy site moved several times due to being compromised by the hernias. I have had multiple fistulas, several blood clots and have almost died several times. In 1995 they opened up both of my legs from the knee up to the hip and flipped the fascia lata tissue into my abdomen in an attempt at strengthening my abdomen and preventing hernias. Within 6 months I had another hernia. In fact, every year since then I have had to undergo 2 hernia repair surgeries a year. I have been told by my surgeon (it has been the same one each time...other than the first one or two) that my abdomen is just filled with adhesions....he said I was his worst nightmare. How many of you have heard the exact same thing....many I am sure.
In 1998 however, I decided that I felt good enough to go back to work. I began to work part-time at an insurance agency doing office work. In August of that same year I was given the job I had been waiting for my entire life. I was hired to run our newly opening VA clinic. To begin with I was hired to work just part-time...the clinic was only open two days a week....but I was putting in 12-13 hour days...and still not getting all the work done. Eventually my hours were increased to 32 hours a week (the clinic opened to 3 days a week) but all 32 hours had to be in the three days. Then the office manager from the clinic across the state quit without any warning. They asked me to run the clinic until they could hire someone else and since this clinic was open the two days that mine wasn't...I gladly agreed. That is when my real problems began. In January 1999 I became very acutely ill. My friends drove me to the local hospital only to discover that the emergency room was so busy it would have taken more than an hour just to get me triaged. I told them that I could not wait that long...that we needed to drive to Green Bay..which was an hour away. We only got as far as a little community hospital about 22 miles from here. I could not handle the drive and asked them to take me there. I was seen immediately and was placed in intensive care with urosepsis. I had infection throughout my entire urinary system and throughout my blood. The doctor there spoke with my urologist from Milwaukee, but he felt that since I had not had any real infection problems (urinary) that it was just a fluke and I didn't need to worry. I missed one month of work just recovering from the infection. A month later I had surgery in Milwaukee for yet another hernia. I was discharged three days later only to be admitted to our local hospital with yet another case of urosepsis. This time the urologist decided he had better look into things. In June they discovered that my ureters were not draining urine when I sat or stood....something I was doing a lot of in my long hours at the clinics. All the urine would back up into my kidneys and cause infection. He made arrangements to do surgery...but because of vacations and whatever they could not get me scheduled until the end of August. I was confined to bed for that length of time and continued to suffer with the infections...one on top of the other. I finally had the surgery on August 30th. They did an entire urinary revision...and placed more mesh inside my abdomen...since I already had another hernia. Two days later when the stoma nurse was working on my urostomy appliance she discovered that my urine still was not draining when I sat or stood. That meant that the surgery had been a total waste. To top it off...I was discharged only to come home and be hospitalized again....this time with kidney failure. I don't even know if the hernia repair ever worked...the swelling surrounding the urostomy site never went down....now I have a hernia the size of a football at the site. I cannot maintain a seal on my urostomy appliance...therefore I leak urine continuously. It was at that time that I decided that enough was enough....I had undergone 26 laparotomies since 1991. I had allowed one doctor 26 opportunities to correct the problem and it still wasn't right. There was no way that he was going to touch me again. My local physician had been trying to get me to go elsewhere almost since I began seeing him in February of that year....gosh, why hadn't I listened to him??? Actually, I had sought out another medical opinion a couple of years earlier when I went out to Boston to see a urostomy specialist. He had had all these wonderful ideas about what he could do to help me...but said that I needed to take phen/fen to lose weight before he could operate. Well, I went on the phen-fen...lost more than 75 pounds....developed the heart valve leakage...and then could not get a response out of the man. He never sent the slightest of reports to my doctors despite repeated phone calls, faxes, emails...you name it.
After doing a lot of research this time I decided that I would go to Johns Hopkins in Baltimore...the number one urological hospital in the country. While I was there I saw several doctors and was told all of these wonderful things that they were going to do for me. I came home....all psyched up with what they were going to do for me. About a week later I was again hospitalized with the beginnings of kidney failure and then when it occured about two weeks later my doctor got on the phone with the doctor in Baltimore only to be told that he was not going to help me. I was told that they had indicated that doing surgery was going to kill me....but not having it would kill me too. They felt that things could better be dealt with closer to home. HA!!!! There is not a doctor around here that would touch me with a ten foot pole.
Even Dr. Reich has tried to help me...but due to the opening of the new center and my need to have the surgery as soon as possible he recommended that we again check with the University of Wisconsin to see if they could form a team to help me....so my records were shipped off to Madison only to learn about a month later that they were unwilling to help. At some point I became so desperate that Bev and I made another trip down to Milwaukee to see my surgeon. He was more than willing to do surgery....but he dictated what he was going to do...not giving me a say in the matter at all. He also told me that while I had massive adhesions.....THEY WERE NOT A PROBLEM!!! Even more incredulously he told me that they did not cause pain. He went on to say that he could not guarantee that I would be pain free after my surgery....well gee whiz...didn't he just say that adhesions didn't cause pain????
Since that time life has become a sheer hell. In 1991 I had bladder augmentation surgery and a second one yet that year when the first was unsuccessful. That was the start of it all. Since that time I have had surgery after surgery for multiple hernia repairs, removal of my bladder, urostomy revisions, bowel resections...you name it. This all started at a hospital which was supposedly one of the best around. Since then I have gone to the University of Wisconsin, Marshfield Clinic, Mayo Clinic, Lahey Clinic in Boston, and my last ditch effort in October was to Johns Hopkins in Baltimore. Recently I have again sought the care of a recommended physician at the U.W. of Madison and have again been rejected. I have seen more doctors than I ever care to think about. I question why I have allowed one doctor to cut me open 26 times...and even consider allowing him to do it one more time.
I have been homebound for about a year now....more recently I have felt courageous enough to venture to Bev's house and even make some outings with her and Bernie. My urine leakage is so humiliating....I don't really want to be around anyone....it smells and I worry about others smelling it...so I don't want to subject myself to that. I spend a lot of my time lying down to facilitate the drainage of the urine....which I have since found out is obstructed because of ADHESIONS!!!!! I am in a no win situation....if I have surgery I have been told I will die....if I don't they say I will die. I am willing to take that chance so that I can return some sense of normalcy to my life and enjoy my 2 beautiful granddaughters....just to hold them is all that I ask!
I have been on this search to find a doctor not only capable but willing to do my surgery....it has not been easy. Then one night I remembered that my first two surgeries involved a different general surgeon...only he was no longer at the hospital in Milwaukee..he was in Chicago and better yet his secretary (who over the years had become a friend) had been secretary for the other surgeon in Milwaukee and had helped me out when I had problems dealing with him. She had sent me information on the move and told me that if I ever needed a surgeon she was sure that he would help me out. This had happened a few years ago...so I guess that is why I didn't think about it. Well first thing I did was get on the internet to hunt him down. I found a phone number and made numerous calls that day...not reaching anybody and getting no return phone calls. You know how you feel like you are being avoided?? That is how I felt that day....but something told me not to give up. I typed up a letter and had it faxed out that night. The next day Dr. Frantzides was on the phone with me....saying that he couldn't help me as he was leaving town for an extended period of time...and may be leaving the hospital for good. But, he did say that he would try and find someone that could help me. He called Bev a few days later and told her that while he didn't think he could find someone to help me....he had. Bev and I flew down to Chicago and the rest is history. Dr. Zachary (reconstructive plastic surgeon) has agreed to perform my surgery...with the help of Dr. Frantzides (general surgeon who indicated he wouldn't be able to help when I called him) and Dr. Bales (reconstructive urological surgeon).
It has been over a month since my visit to Dr. Zachary....and still no date. I am frustrated....agitated...and in pain and I want the surgery done 5 months ago!! My medicare was running out the end of June and knowing that I would need to be hospitalized for 2-3 weeks and then placed in some type of rehabilitative facility for up to a month following the surgery I was definetely worried. There was no way of my paying for the surgery if I lost my Medicare. On Friday I found out that I had again been found disabled and that I did not need to worry...my Medicare was not going to expire. I also spoke with the urologist on Friday and found out that he was willing to perform my surgery....there has just been a problem of communication between the three doctors....they are at two different facilities. He said that I should call Dr. Zachary's office on Monday and get a date....well you know me....it was not 5 o'clock yet..(but it was Friday) so I got on the phone and explained the situation to the secretary. The nurse that would do the scheduling was already gone and would be on vacation this week...but the secretary said she would speak with her substitute to get her to do the scheduling on Monday. You can bet I will be on the phone with them first thing in the morning. I am not going to tell them that I do not have to worry about the Medicare....this has drug on too long.
I have known that I had adhesions for a long time...never knowing that it was really a condition. I have actually had a CT that showed a huge mass of adhesions...yet no doctor has really said much about them...just hand out the pain meds and say deal with it. It wasn't until I was contacted by Bev this past year that I began to gain some insight into this disease and I thank God for the day that I first met her. Right now I am very scared...I go from wanting to just have God take me to be with him to wanting to fight...no matter what it takes. I hope that the fight in me wins! I know now that there is hope.....it is hard to maintain that optimism. I keep waiting for the phone call that says that they will not operate...I have even begun having nightmares where I see my old surgeon saying he just had to tell the new doctors that they couldn't operate. I also worry that this will just be another surgery that doesn't work.....I know I have no guarantees about it....I know that I could die....but I also know that the chance exists that I won't have to live this way anymore....and right now....I'll take that chance. Once these doctors have done their repairs and I recover sufficiently I will aim my sights at getting to the adhesion center and being able to "live" once again!!!
Karla