My Bladder Cancer Fight

I had stage II bladder cancer. This means that the cancer cells had spread to the inside lining of the muscles lining the bladder. There was no evidence that the cancer had spread through the muscles of the bladder.

Due to the fact that I had cancer cells very closed to the mouth of the bladder, the Urologist felt that I should have a Radical Cystectomy. In this procedure, the bladder is completely removed along with, in Women, the uterus, ovaries, fallopian tubes, part of the vagina and the urethra. In men, the prostrate, glands that produce fluid that is part of the semen and the urethra may be removed as well. The lymph nodes in the pelvis may also be removed.

In my case, I had the works. All of the above were removed.

With the removal of the bladder, it was necessary to provide a way for the urine to pass from the kidneys to the outside of the body.

In my case, a section of the small bowel was used to construct a ‘stoma‘. Pictures of a stoma. One end of this section of bowel was attached to the kidneys. The other end was brought through the stomach muscles to the outside. The stoma cannot be brought to the outside between the stomach muscle layers. Doing this would keep pinching the stoma and interfering with the flow of urine. The stoma must be brought to the outside through an incision in one of the muscles. This prevents pinching of the stoma when you flex your six pack.

By bringing the stoma out through the middle of a muscle, the chances are increased, for a percentage of patients, for the development of a hernia, a parastomal hernia. This is a large bulge somewhere around the stoma.

I was one of the unlucky ones. I developed a parastomal hernia within two months of surgery. Mine is located across the top and down the right side of the stoma. Generally, these hernias are not painful, just very inconvenient.

My hernia has grown in size since it first developed and has caused the stoma opening to point down rather than straight out. It is now on the lower side of the hernia. This makes the positioning and wearing the Urostomy pouch difficult at times.

NOTE: This is my personal opinion.
1. After you have surgery for the removal of the bladder and the construction of a stoma, ask your Urologist ‘if you can wear an abdominal surgical belt until you have at least healed inside. I developed a cold after surgery and I now feel that the bouts of coughing helped contribute to the formation of my hernia. Open heart surgery patients are encouraged to have a pillow handy to hold over their chest when they cough or sneeze. Why not stoma patients?

2. Even today, eight years later, I WILL not do ANY physical work at all without first putting on an abdominal surgical belt. When I strain, I can feel the stomach muscles press against the belt. It is not going to help my hernia go away, but I feel that it does help in not letting it get any larger.

Once the operation is over, the surgeon will glue an Ostomy pouch, over the stoma, to the stomach. The stoma protrudes into the pouch. This style of pouch is probably not the style that you will be wearing later on. Healing has to take place and any swelling receded before it can be determined what is the best style of pouch for you.

When the swelling is gone and healing is well on it way, a Urostomy Nurse will visit and determine what is the best style of pouch for you. Normally, the stoma protrudes between 1/4 to 1/2 inch from your stomach. This length is excellent. Even if a parastomal hernia develops, unless the hernia is very large, there should be enough length to make a good fit with the pouch. I was unfortunate as the surgeon left me with a short stoma protruding. As my hernia got bigger and bigger, the stoma began to recede. It became concave. This makes the wearing of a pouch more difficult as the pouch is prone to leakage around the stoma. The skin under the pouch is constantly wet from urine and skin break down becomes a problem. I had to go to a concave pouch which did work well for a long time. The concave pouch has a much stiffer backing and has a tendency to dig into the stomach. I took a twelve week driving trip through the eastern provinces of Canada and across Labrador. Towards the end of the trip, I had developed pressure sores from the stiff backing of the pouch digging into my stomach. This was a big problem. I eventually was able to solve the problem.

The type of pouch and manufacturers brand that you leave the hospital with is not necessarily the one that is best for you. After a month or two, you will know if this brand is really good for you. I developed a sensitivity to the glue that was being used on the pouch given to me at the hospital within two months. With the help of the Urostomy Nurse and experimenting, we finally found a pouch that I did not react to. This pouch worked fine until the hernia got large and the stoma started to recede. When this happened, leakage became a problem. Back to the drawing board with the help of the Urostomy Nurse.

What I am trying to say here is that as you change and time goes on, problems with the pouch you are wearing may occur. The Medical community, other than the Urostomy Nurses, have no idea how to help you solve such problems. You are on your own. All the manufacturers of pouches want to do is to sell you their product.

Urostomy forums are a great place to find out what type of problems other pouch wearers are having. No doubt, you will pick up some very good hints to try about your problem. The people in these forums are in the same boat that you are in. They cannot find much information about their particular problem from the Medical community.

In my opinion having to wear a Urostomy pouch is no big deal. Yes, I have had problems over the years but so far, I have been able to solve the problems that have occurred. I will NOT allow this disease put me into a rocking chair, on the front porch, before it is time. Since 2000, I have traveled thousands of miles, camping, by car. I have gone to China, Hong Kong and Thailand. In 2008, if my health allows, I plan to follow Route 66 from Chicago to California, camping. I have been invited to go to Africa. Cost may prohibit this one.

Years ago, I heard Lynn Redgrave who also suffers from cancer make a statement that has stayed in my mind all these years. It went something like this: ’I am willing to accept death from old age, accident ….. But I absolutely refuse to allow this disease to do me in’. Her positive attitude has been an inspiration for me.

I recently put up a post on how I solved my skin problem. Take a READ.

Good Reference Links:

http://www.ostomates.org/index.html

http://www.cancer-info.com/bladder.html

http://www.cancer.gov/cancertopics/types/bladder

Posted on December 29th, 2007 by Neil
Filed under: My Cancer, My Problems, Problem - Skin Peeling