Urostomy Surgery – Donna’s Story
Donna has suffered from Cauda Equina Syndrome, a rare disorder which causes loss of bowel & bladder control, since 1985. After dealing with countless UTIs, urostomy surgery was the ultimate solution. In this edition, she shares her experience with prep, surgery & recovery.
Urostomy Surgery – The Waiting Game
My wait for urostomy surgery was complicated due to Covid restrictions on surgeries. Fifteen months went by, and I won’t say easily, but they did pass.
Getting Prepped For Urostomy Surgery
Urostomy Surgery Prep was relatively simple: load up on carbs for what had initially been planned to be 8-10 hrs on the table. It included a meal specified by the pre-op clinic 8 hours before and 1 litre of sweetened apple or cranberry juice 3 hours before surgery. Prep at the hospital involved collecting info and getting an IV started, which failed, and the anesthesiologist had to start it herself.
Unique Health Needs
The team included my surgeon Dr. Richard Baverstock, his fellow, a visiting doctor from Melbourne, Australia, and two of the surgical residents. The original plan was an epidural, but due to Cauda Equina Syndrome and the damage at L5/S1 on my spine, there was no guarantee I’d be numb or walk again.
Arriving On The Other Side of Urostomy Surgery
I was astonished to wake up in my room to bright sunlight when I had expected darkness (January surgery). It seems with the team and even the delay getting the bladder free from the bowels, they finished in 4.5 hours. I have to say I had so much energy, and I was so wide awake from the carb loading I could have walked all over the hospital. The only problem was I was too dizzy and kept forgetting to breathe, which set off alarms.
Complexities of Urostomy Surgery
The surgeon removed my bladder, the entire urethra (as it can be an area to get bladder cancer even with the bladder gone), and some repair work to the bits and pieces from all the infections and scarring, as well as the ileal conduit being formed. My left ureter had to be trimmed back to find good tissue suitable for the connection, the right not so much. I’ll talk about the ureters and the treatments for the blockages later (in another edition of the newsletter). Who knew that radiation treatment for cancer in 2007 would still have an effect 14 yrs later. Stents were used to drain my kidneys so that my ureters could heal (below, pic 1.) I first used a transparent bag, which is pictured with a nephrostomy tube (below, pic 2).
Adjusting To A Urostomy
I ordered a hernia belt, but unfortunately, the hernia arrived first and just from a sneeze. My stoma healed (above, pic 3), and I was able to try a Hollister system with a viewing window (above, pic 4). There seems to be little difference between travel and working, as sometimes, the bag is in the way and always needs emptying; at times, every 30 minutes. Fluid intake also needs to be increased as it moves through me quickly.
Overall, I have found that life has actually been very easy to adjust to through my urostomy journey.
(For more info, see part 1 of Donna’s ostomy story in the Spring Edition of Simply Ostomy.)
