In 1994, I was diagnosed with bladder cancer and underwent a radical cystoprostatectomy with ileal conduit—I lost my bladder. During most of my 28 ½ years as an ostomate, I have had only minuscule and temporary stoma bleeding, or spotting, and only at the time I change my 2-piece urostomy wafer/pouch. However, beginning in 2019, the bleeding became more frequent and my urologist suggested the permanent remedy of using a Silver Nitrate stick to cauterize the stoma. Earlier this year, this same urologist said that with my history of stroke and regular use of a blood thinner, a stoma “revision” or repeat of my 1994 surgery could prove fatal.
Today, I have a new urologist who did perform a stoma revision. However, as a result of this procedure this past October, I am still bleeding and urine now exits from the stoma like a waterfall! Whereas I used to change my wafer/pouch every 5-6 days, it is now every 1-1 ½ days.
My surgeon said he can try the revision again fairly soon or wait until early 2023 to redo the original 1994 surgery, which would give me a new stoma. Of course, until a successful procedure is performed, I risk bleeding and possible clotting that has sent me to an emergency room 10 times in 2022.
I am desperately looking for advice, referrals, etc. Thank you.
