The Ups and Downs of My Life with a Urostomy
After many years of living in constant pain and struggling with a neurogenic bladder, my daughter, Taylor, underwent a major procedure a few months ago called a urostomy.
What Exactly is a Urostomy, You Ask?
A urostomy is quite a complicated procedure where they remove the bladder, along with a portion of the small intestine. The intestine is then sewn back together, with thepiece that was removed being attached to the ureters that run down from the kidney. The rest of the small intestine is then used to form what we call a stoma on the outside of the belly.
The urine then flows from the kidneys, through the ureters, and out of the body through the stoma opening and into a urostomy bag system that is worn at all times to collect the waste.
Once the urostomy is done, the patient has no control over the release of the urine and it constantly flows into the bag. Most people are not familiar with this procedure, but it is estimated that there are over a million people in the U.S. that are ostomates!
The Huge Decision and Why We Made It
Now, I can imagine you are wondering why on Earth anyone would go through with something like this, but until you have lived with the pain from a neurogenic bladder and alternative treatments, it’s really going to be hard to understand.
You see, there wasn’t a day that went by that Taylor wasn’t in pain. Some days the pain was so bad, she didn’t want to be here anymore. Without this unusual, cute, little stoma, she would still be in constant pain. The decision was the hardest, yet best decision we made for her.
The Surgery Itself
The big day came, and the decision we had grappled with for months, that decision that would be irreversible, was now more than just a decision. It was happening to my poor little girl.
What was expected to be an eight hour surgery, turned into a 13 hour surgery, which is typical for Taylor as she is a very complex case due to her orthopedic impairments brought on by cerebral palsy.
The recovery period with our urostomy has been a tough one.
Waking up and realizing you have no bladder makes you feel a little less like yourself and maybe even a little less human. Getting up the strength to look at your stomach for the first time is also hard, although soon enough, you will think your stoma is pretty cute!
One of the worst things following the surgery for Taylor was the swelling. I have honestly never seen anyone as swollen as she was following this procedure.
Eating was also hard due to the fact that the stomach had shut down and everything had to start working again.
She spent the first few days very sick and on a lot of pain medications.
After about two weeks, she had started to recover, but got ill with a kidney infection, which led to a terrible round of sepsis.
Now that we have fully recovered from the surgery, Taylor absolutely loves her stoma and has given him the name Oscar the Pouch!
Life After the Urostomy
Life with a urostomy has actually turned out better than we could have anticipated. Hopefully the worst is in the past and we can now move on to bigger, better things for Taylor.
Yes, it does seem weird to Taylor now that she will never sit on a toilet and pee like you and me again, but the good far outweigh the bad.
Pro’s and Con’s-Told by Taylor Herself…
- I no longer have to sit and pee! Have you ever wondered who has been sitting on the toilet seat in the public restroom? I mean, I’m sure that thing is covered in germs. I know longer have to worry because I just go in and empty my bag!
- Since I am in a wheelchair and can not transfer or walk on my own, being in an airplane is hard because I can not get to the bathroom. We are frequent flyers and on 12 hour flights, it’s hard to hold it. Now, my mom just has to drain my bag into a catheter right there and take it into the bathroom to empty it!
- I’m no longer in pain, which is the number one reason!
- I live in comfortable clothing due to the fact that my clothes can no longer be tight around the belly. That’s right, I can get away with breaking a dress code!
- I no longer worry about bladder spasms or getting bladder cancer, although I wish the surgeon would have let me keep that bladder for display!
- I no longer have to wait in lines in most places with long lines. All I have to do is let them know that my bag will need to be emptied every hour or so, and they will let me go right in front, because honestly, nobody wants this thing to start leaking!
- My stoma is my new friend, Oscar. He is great and even talks from time to time.
- My mom saves money on toilet paper!
- I always have an excuse to get out of anything I don’t want to go to. I just blame it on a bad bag day!
- I can sleep through an entire night without having to go to the potty!
- From time to time you will experience a leak. Like everything else in life, this will happen at the worst times and in the most inconvenient places. You will learn to always carry extra supplies and a change of clothes.
- Having no bladder may make you feel different.
- You now have a bag attached to your stomach that will have to be changed every few days to prevent infections or bag leakage.
- You probably don’t want to wear tight clothing, although some people go to extreme measures to accomplish such a task, but to me it’s not worth it!
For us, this surgery, although life-changing, has turned out to be a blessing and I hope we continue to have success.
Do you have an ostomy?
Share your story with us in the comments below!