In 1995 we made the decision to move to Vancouver Island where Jim's family lived. It was great to move to a new locale as we are the type of people that can't let moss grow around our feet and want to be on the move. We had a great Christmas with Jim's family that year, then in the new year..1996...all HELL broke loose as the Island was gripped with the worse storm that they had seen in over 60 years. At our home on the bench above the town of Duncan, we had around 3.5 to 4 feet of snow. All of that snow fell within a 48 hour period. Needless to say, there were a lot of buildings downed by the weight of the snow....our cars were almost litterally burried by the snow....most of the plants and trees in our yard were broken and in fact we lost a lot of the Rhoddies and Azalea's due to the weight of the snow breaking most if not all the branches off. A very nice welcome to the "mild Vancouver Island", and yes, I am saying that with as much sarcastic attitude that I can.......LOL.
We both worked, had a great life on the Island and sneaked as many trips back to the Okanagan that we could to visit my family there and life carried on......until about 2002, when once again I began to have health problems.
It started off quite slowly with generalized pain in my bladder.....which progressed very quickly to a full blown pain depending on what I ate and drank. I was first put on antibiotics as it was thought that I was having bladder infections. As the weeks turned into months, I saw many specialists. Because of my previous health problems with the Endometreosis, there was a question as to whether my adhesions from the scar tissue through my organs was causing the pain. I then went to a Gynecologist to rule that out.....after 2 minor surgeries, they decided that the scar tissue through my organs wasn't the cause of my current pain. I was then referred to an Internist whom really thought that I needed an Urologist as the Internist was certain that my pain was the result of a bladder problem. I went to a local Urologist in Duncan. He put me through some tests and decided that I had a Uracle Cyst and that I needed to have bladder surgery to correct the problem. The problem was though, I had to come to terms that I was going to loose half my bladder or more to correct this problem and if things didn't go well, I would end up on a bag that I would have to pee in for the rest of my life. The day of the surgery, we went to the hospital....I had finally come to terms of my possible fate......upon arriving at the hospital, I was told the surgery wouldn't happen. Upon further consideration of my test results that Urologist decided that what he thought was the problem, definately wasn't the problem now and instead of the planned surgery, he would do a minor surgery and have a look inside my bladder to see if there is an internal problem there that he couldn't find by using the previous tests. Through doing that surgery, the Urologist found that I had bleeding ulcers in my bladder and the size of my bladder shrunk to 1/3 to 1/2 of it's normal capacity....I was put on some more pain medication, more steroids to reduce inflammation and during the surgery, he put a rinsing fluid in my bladder with medication in it to try to heal the bleeding ulcers. About a month later, I went back in for another surgery to re-assess where my bladder stood at that time. It was decided that my bladder had continued to shrink and the ulcers were more severe than before. It was then decided that I might possibly have Intersticial Cystitis. This is a lifelong disease of the bladder with no known cure. Because I was still having an unbelievable amount of pain and was requiring about 12 Oxycocet tablets a day as well as being on an extremely bland diet to try to heal the ulcers in the bladder, I was referred to another specialist in Victoria. After several more tests and 2 other surgeries, this specialist confirmed the other Urologist's diagnosis of Intersticial Cystitis.
What happens with Intersticial Cystitis, is that the lining that protects the inside of your bladder is destroyed through the process of this disease. As there is no certain cure for this disease and bladder transplants just aren't done, the next course of action was to try several medications before considering having the bladder removed and a catherter bag installed. As the steroids weren't really doing much, I went through another surgery that would instill more medication directly into the bladder as well as numbing instillations that I went through on a weekly basis for one month. None of these treatments were working and now I was taking upwards of 14-16 oxycocet tablets a day to try to cope with the pain. At that time, my dr's were becoming concerned that I would develop a dependancy on the oxycocet as they are known for being very addictive. My diet at that time consisted of bland vegetables, no spices for cooking except salt and garlic, plain potatoes and plain rice. Still nothing was working. Finally they decided to take me off the steroids as my kidneys and liver were beginning to shut down. After the months turned into a year, and then 2 years, I was put onto a medication called Gabapentin or Neurontin as it is sometimes called. This medication is suppose to numb down the nerves going from the bladder or other nerve pain up the spinal cord to the brain....the concept is that if my brain doesn't know that there are pain signals being sent there, maybe I will be out of pain or at least reduce it to a very minimal amount that I can cope with. After being on the medication for 2 weeks, one day I found myself not taking an oxycocet at all for 1 day. At that time, I took myself off the pain pills as they weren't needed anymore. I never had withdrawl symptoms from stopping the Oxycocet's cold turkey, except for having trouble sleeping for a couple of nights. That was the only side effect from stopping a narcotic drug that I had been on for over 2 years on a daily basis. It was considered a miracle that I had no side effects from stopping that drug, but as one pain specialist told me, my body actually "needed that amount of pain medication and actually used up the medication on a daily basis. Since my body used it up, there was no way that I could actually get addicted to it". The moral of the story, if your body actually needs that amount of a narcotic to fight the ACTUAL pain in one's body, then there isn't enough of the drug left over in your system to actually get addicted to the drug. I am not saying that the Gabapentin actually cured the bladder disease.......far from it, and eventually one day, I may still have to have my bladder removed as the disease is still progressing on a daily basis. I do know that I still have about 1/2 to 1/3 of my bladder lining remaining intact. One day, I will eventually require a bladder removal as if you keep the bladder without a lining in it, you can have unlimited bleeding coming out of your bladder due to the fact that there is no lining remaining that protects the numerous blood vessels that is inside your bladder. That is a fate that I will more than likely face one day........but until then, I continue to take the Gabapentin, remain on a mild diet that is suited to my bladder situation, take the pain pills as needed, and try to live my life as normal as possible.
My moral of the story is that if you yourself or someone you know is diagnosed with the baldder disease Intersticial Cystitis, PLEASE check out all your options before you resort to a doctor telling you that you have to have your bladder removed. There may be other solutions. I was 33 when I was diagnosed with this horrible disease. It isn't a disease that only affects the old or the young and can affect anyone at anytime to any degree.
I am now 41 and continue to fight the good fight with this disease...........
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