Life with a Stoma is Still a Great Life
Here at BladderCancer.net, we strive to share as many perspectives as possible with our community about life with bladder cancer. We sat down with Alan, a bladder cancer survivor and a pillar of support in the bladder cancer online community, to ask him about his cancer treatments and his life with an ostomy. Read more to learn about his journey!
Deciding to have your bladder removed
What were the factors that led to you making the decision to have your bladder removed to treat your bladder cancer?
I went to a doctor for over 4 years trying to save my life & bladder. I tried everything the doctor talked about, including BCG solutions and even chemotherapy. Nothing worked. It got to a time when the cancer was growing into the wall of the bladder. My doctor sent me to another doctor for a second opinion. The second doctor said that all my choices were gone. If I didn't have my bladder removed, I would die. It was hard to hear, but I soon realized he was right. They even showed me my cancer cells in a dish under a microscope. It was the right choice for me.
Naming your stoma
Why did you choose to name your stoma and how did you come up with the name?
I read someplace early after my surgery to get to understand your stoma. Name it! In the beginning, I called him "Mr. Stoma". I feared him but respected him. As time went on, I got comfortable with Mr. Stoma. So, now that we were old friends, I started calling him "Old Stomy". That was many years ago. He's my best friend. We go everywhere together.
Life with an ostomy
What would you say to someone who is afraid of life with an ostomy?
Life with a stoma is good after an adjustment period. I always had the best doctors and nurses. I learned real fast how to take care of myself. Now, almost 13 years later, I'm doing great. Old Stomy and I do great together. I change my pouches always at the right time - almost never have a leak. Life with a stoma is almost a normal life. I don't have to get up in the middle of the night to go to the restroom. How many people could say that?
I'm never alone except when I want to be. Some people know about Old Stomy, but most don't. It is my choice who to tell. Sometimes, I forget I have a stoma. My life is a good one for a 72-year-old kid.
Finding online support
How do you think a community like BladderCancer.net can help those in a similar position to yours?
Support groups are great. The first time I went to a group meeting, I was welcomed by all. I couldn't believe I was in a room full of people with the same issues. I felt very comfortable. I learned a lot from many people. Now, when I speak to a newbie, I tell them I speak with 100 years of experience - from all the ones before me. I still learn from others. BladderCancer.net is a great way to learn from others. We are all in this lifestyle together. If we could get the information out there, it's great for all of us. That's where BladderCancer.net comes in. I learn from others, and I hope I help others. Remember, we are all family. Help each other. It's a great feeling. I'm proud of Old Stomy, and BladderCancer.net helps me get the word out. Thank you for listening to my story. It was a long journey meeting many people. Life with a stoma is a great life. It's still LIFE.
Have your views towards bladder removal changed since you were diagnosed?