Has anyone on here experienced a recto-urethral fistula?
Following radiation, a salvage prostatectomy, and a failed artificial urinary sphincter, I developed a recto-urethral fistula. Because I do not want to have a colostomy, I am living with the fistula. Does anyone have experience with such a fistula? Are there any support groups for those suffering from a recto-urethral fistula.
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Unfortunately, we are not medical doctors so we cannot really tell you how to fix something like this for your particular case.
Here is some info from AI, There was a lot more info if you do a search in one of the AI tools like Claude or ChatGPT
Yes, there are several effective treatments for a recto-urethral fistula (RUF), with surgery being the primary, most successful option. Common approaches include repairing the fistula via a perineal incision, often using muscle flaps (e.g., gracilis) to separate the rectum and urethra.
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1 ReactionWouldn’t the colostomy be temporary? Not saying it’s something to look forward to, but it’s probably necessary to allow the corrective surgery to heal. Afterwards it can be reversed.
It probably wouldn’t be necessary if you did not have radiation, as this is a common occurrence in women in underdeveloped countries during prolonged childbirth…
Those fistulae can usually be repaired without a colostomy in most cases.
But radiation severely compromises the ability of tissue to heal, usually due to capillary destruction, so you need to give it every opportunity to repair itself after surgery. Bacteria from the rectum is also a very big issue so rerouting fecal material away from the surgical repair further enhances healing.
Your surgeon may also recommend hyperbaric oxygen afterwards but that would be up to him/her.
Best of Luck,
Phil
I developed a recto urethral fistula after IMRT and brachytherapy for pc. I was told by doctors at the time that leaving it untreated could lead to kidney problems. I was also told that the repair of an RUF after radiation didn’t work well.
I have had an ileostomy since 2009. It’s a lifestyle adjustment but not a difficult one. I haven’t had any kidney problems at all.
I would get second and third opinions. Preferably from a first class cancer center.
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2 Reactions@bwjb, I hope you saw the helpful reply from @fbt217 and can connect. You might also appreciate the discussion in this support group:
- Ostomy & J-Pouch support group https://connect.mayoclinic.org/group/ostomy/
@bwjb, have you discussed the pros and cons of an ostomy with you doctors?
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1 Reaction@colleenyoung
Hi Colleen, Thanks for your reply. My recto-urethral fistula followed prostate cancer radiation (that seriously damaged the surrounding urinary tract) and a salvage prostatectomy not due to a recurrence of the prostate cancer but to repair a prior fistula that occurred after a prostate procedure to remove scar tissue. I consulted a reconstructive urologist and a colorectal surgeon. They indicated the first step in a surgical repair of the fistula would be a diverting colostomy. A permanent urostomy would be performed. The colostomy would be necessary for a year and would only "possibly" be reversible. For that reason I chose against surgery and am living with the fistula. I was hoping to hear from others that are living with a fistula in terms of what they have learned in their time with the problem. I appreciate your posting my question. Thanks, BWJB
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1 Reaction@bwjb The “possibly” means that it all depends on how the rectal healing progresses.
I know the wording is scary but the surgeon has no control over how your body will heal from the radiation.
But the longer the fistula remains, the greater the chance of infection and the less the chance that the fistula can be repaired.
I totally empathize with your situation and I know the idea of walking around with not one, but TWO, ostomies is awful and not something you could have ever anticipated - none of us could.
But you don’t want to make matters worse by having an emergency with sepsis. Because then it is not a controlled procedure with the idea of future reversal, but an all hands on deck life saving one where there is no concern for anything other than keeping you above the dirt.
Maybe get another opinion from a different surgeon - just as all prostate surgeons have varying levels of skill, so too, do colorectal ones. Please try to stay positive…Best
Phil
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