Myth Busting and Living with a Bag: Life after RC/IC
Last updated: January 2023
Do you remember the date you were diagnosed with bladder cancer? Most hands will go up with that one! Who would ever think a doctor would recommend bladder removal as a treatment for cancer? People can't live without a bladder! What? And have any type of life at all after?
I am here to dispel the rumors and misinformation regarding bladder removal - commonly known as radical cystectomy (or RC) and life with a bag and ostomy.
Life after a radical cystectomy
There are 3 types of diversion options after bladder removal. Not everyone is "eligible" for every option and some are only interested in one. I had RC/IC, known as ileal conduit, on September 30, 2014. On that day I became a "bag lady" and cancer-free.
If having your bladder removed has been discussed, how long was it before someone who has their bladder told you your life will be over? You will not have any quality of life, certainly not the quality of life before your RC? Will everyone know that you are bladderless?
Many of us have heard the endless negatives of bladder removal and also of wearing a bag. September 30, 2021, was the 7th anniversary of my RC/IC surgery and I have not regretted it for one second.
Deciding on a cystectomy and ileal conduit
While BCG was an option for me, I researched the cystectomy, spoke to those who had this surgery, and asked every question my family and I could think of before deciding on on the procedure.
The main reasons for this decision were:
- I wanted my life back.
- I wanted to be cancer-free.
- I always told my children that I wanted to live long enough to become a pain in the posterior to them. I have not reached that goal - yet.
Cystectomy and ileal conduit myths
There are many rumors that swirl around cystectomies and living with a stoma but you can thrive even as an ostomate.
Rumor 1: Everyone will know
"Everyone will know that you have a bag."
Fact - I am not a nudist so very few people know I have a bag. My medical team, family members, and a few others who I chose to tell know I have a bag. It is not much larger than a sandwich bag so people do not know I wear a bag.
There is a possibility that you have interacted with someone who has an ostomy but you would never know it! Over 500 thousand people in the US have ostomies.
Rumor 2: Quality of life
"You will not have any quality of life or it will be greatly reduced following a radical cystectomy/ileal conduit."
Fact - speaking as someone who chose not to continue through grueling treatments and tests that taxed my body, mind, and spirit, I can tell you honestly that I would not have done things any differently. I do more now that there is not the constant stress of cancer hanging over my head.
I never ever get up at night to use the bathroom. I empty standing facing a toilet, so that takes away getting close to public toilets. I also started a new job 27 days after my RC/IC surgery and no one there ever knew I wore a bag. I wear the same clothes and participate in the same activities.
Rumor 3: Smells
"Your bag will smell."
Fact - this is not true. I have never had any odor issue and trust me someone, anyone, in my family or close circle of friends would mention that to me if that was the case. There are drops that can be put in the bag before attaching it if you have that fear. Any unusual odors should be investigated as a possible infection.
Rumor 4: No more of this or that
"There are so many activities you can't do anymore."
Fact - I do it all and then some. I work 2 part-time jobs, head the local police volunteer program, co-chair an annual bladder cancer retreat and in my time off, I travel the US and internationally.
Since RC I have been in over 25 5K races and placed in the top 3 in 4 of them. I finished the Mackinaw trio race - 20 miles total in 2017. I have ziplined, toured Europe, placed first in a local triathlon, the list goes on!
You get the idea I am sure. Did I mention that I will be 71 this year?
Rumor 5: Leaks
"You will leak all the time and never be able to leave your home."
Fact - every diversion has a learning curve and IC is no different. Will you have leaks in the beginning? Yes. But with the help of a stoma nurse and a variety of choices between wafers and bags, you will find the one that works for you. During your recovery, there will be leaks until you are healed. I change once a week and honestly never have leaks
The power of a positive attitude
If you go into this with a positive attitude and winning spirit, you may just surprise yourself at how well you do with a bag. It is not for everyone but it works for me and being cancer-free is a great reward.
There are over 500 thousand people with ostomies in the US and I am proud to be alive and living with mine!
Connect with other ostomates and urinary diversion members!
Has cancer impacted your mood during the holidays?