Should I Have My Stoma Refashioned?
Last updated: February 2023
I am 4 and a half years after the surgery that changed and saved my life. This operation was for stage 4 bladder cancer and included removing my bladder and part of my bowel and resulting in the creation of 2 ostomies – a urostomy and a colostomy.
Now life is back to normal for the most part. I work full-time, and I am a patient advocate. I enjoy vacations with my husband and eating good food with friends and family.
Mostly, I rule my ostomies and not the other way around.
Before surgery, would I rule my ostomies?
Before surgery, it was the colostomy I feared more. After all pre-ostomy surgery, I was stuck in the "poo taboo" camp. Imagine poo coming out of your stomach as I thought of it. I had never even changed a baby's diaper at this point – I imagined all sorts. I imagined awful, unbearable smells and visually something which I would not be able to cope with.
Post-surgery and as time went on, I managed my colostomy well. It was predictable, and I could largely control output as needed with my diet.
My retracted stoma
My urostomy, on the other hand, has been retracted since day 3 post-op. It sits below the surface of the skin. Most people may have a few issues, but once they get used to their urostomy and have a bag that suits them - issues will generally subside.
This retraction has caused me many issues. My stoma is very retracted. The main one is frequent, unpredictable leaks, and the second is sore skin, where the urine collects at times instead of emptying into the bag.
Over time, I have found various ostomy accessories to help with this: ostomy paste, flange extenders, rings and powder.
The struggles of a retracted stoma
The issue is I go through a reasonable period, and things seem to work with the latest tweaked solution. At this point, the thought of any more "unnecessary" surgery seems absurd. Why would I put myself through this?
During a bad period, I can have leaks several times a day and night. At these times, I see things differently. It is impacting my day-to-day life, and I worry about leaving the house and having a leak happen with no warning.
At times, I think I might have to consider surgery to have it "refashioned," as it is often called, or "resitting," as sometimes they move the stoma to a new position. Other times, they try to pull it out further in its current position.
Should I get my stoma refashioned?
My doctor is happy to proceed with the surgery. The only issue is it comes with no guarantees.
In fact, he tells me there is about a 33 percent chance it improves my position, a 33 percent chance it stays the same, and a 33 percent chance it is worse.
I have read many personal experiences. Of course, every case is different. Every ostomy is different, and everyone's experience with this kind of medical procedure can be different.
Stuck between a rock and a hard place
So there lies my dilemma. Do I leave it until, if the time comes, it is taking over my life, and I can't leave the house to get it done? Or do I take my chances, get it done now, and hope for the best? Get it done before I am older when the surgery would be harder to recover from?
There is no easy answer for sure. However, the way I am looking at it currently is that 75 percent of the time it's manageable, so why risk a 66 percent chance it stays the same or gets worse? For 25 percent of the time, it currently doesn't work for me.
I was never good at math, so I am not sure it is a good basis for me to make decisions. However, I see it a bit like the odds on the Lotto or at a casino. The odds of a "win" in surgery seem low for the possible returns. Right now, I am not ready for a roulette spin to see if things will get better. For now, I will continue to manage things as I am.
Is getting your stoma refashioned something you have been considering? Do you have a retracted stoma? How do you manage issues when they arise? Add your knowledge to the forums!
How long did it take for you to receive a bladder cancer diagnosis?