Scar tissue in my ureters post cystectomy

After chemotherapy, then cystectomy and ileal conduit, I wasn’t quite prepared for what I had read as a possible side effect of the cystectomy- scar tissue in the ureters where they connect to the ileal conduit. It was diagnosed after a CT scan, that my kidneys were not emptying properly.

How it began...

This happened one month after I had lost my husband of almost 55 years, and gotten the shingles, all during Covid, and 4 months postop. I was told that I would initially have stents from the kidneys, out my back to 2 drainage pouches, but could possibly have the stents placed internally, from the kidneys, through the ureters, into the urostomy pouch, later. Talk about a bag lady! I would have 3 drainage bags! The insertion of the stents through my back, done under local anesthesia, was quite painful. If anyone reading this is told they must have them, insist on a general anesthetic! It was difficult later changing the bandaids over each site, and having them in place was quite uncomfortable.

Advocate for yourself, always

I was scheduled for a interventional radiation to have them replaced. I insisted they call my oncologist and surgeon to see if I could have them placed internally. Yes was the answer. This time, I was given mild sedation, and it was much more tolerable. I have had them in place for 21 months, and they are working well. I do have to have them changed every 3 months, and I don’t need any sedation. It is a bit uncomfortable, like a bellyache, but I can drive myself to and from the procedure without needing a driver.

Life is now pretty normal

When in place, the stents do not bother me. They now drain into the urostomy pouch, and I can turn over freely in bed. They do produce a strong odor in the urine, though. Urine also drains around the stents at times, into the pouch. But life is as normal as it is for any other urostomy patient. If told you must have stents, it is nothing to fear. Just expect some stinky pee!

This is my story.

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