Aa
Advice Opinion
Hi,
For the last three years now, I have lived with a fistula between my urethra and rectum. The first urologist tried to see if spontanuous healing would take place with an indwelling catheter in the urethra. This did not work and I was referred to urologist # 2.
At first a Fibrin glue was tried but this came out the day after the procedure. It was than suggested to reroute the flow of urine away from the fistula by placing a temporarily suprapubic catheter. Now 3 years later things have not healed at all. Originally the second urologist had mentioned a complicated and extensive surgery to repair the fistula. Now after my last cystoscopy he is not willing to persue this surgical procedure and actually got upset with me when I insisted to get it done since I have lived with the problem for 3 years now.
The surgery that he is suggesting now consists of building up the bladder using a piece of my bowel and then rerouting the urinary outlet to some place on my body from which I can than self catheterize from.
This idea sounds better than the suprapubic catheter which I have lived with for the last 2 years now, but it also scares me. In order to do this modification, the outlet at the bladderneck will be closed off and the actual fistula between the urethra (penis) and rectum will remain. This surgery is life changing and penrmanent. There is no way of reversing it should I come to regret my decission in the case that there are complications. Currently I experience a lot of pain at times between the rectum and scrotum. I don't know if this will end following the surgery. I also have cramping of the bladder as well spasms.
I would like to get a third opinion, the first urologist referred me to #2 since #2 specializes in these type of problems. Some how I must have offended # 2 as he seemed to be unwilling to have a consultation with my wife and I and finally agreed to do so. I don't want to risk my chances with urologist # 2 as he has a record of being a very good surgeon.
I'm hoping that another urologist is willing to perform the originally planned surgery since this surgery would leave me with things being as natural as possible. Going ahead with the other surgery proposed by #2, is life altering and requires me to constantly carry catheters on hand.
When I first came down with this problem, I was still able at times to enter my bladder with a catheter. Now the catheter seems to allways end up in the rectum or ends up in a place in the urethra that prevents it from goig into the bladder. This might be the reason as to why #2 is unwilling to perform the original surgery.
I'm aware of the comlications and risks of the original surgery and still would prefer it over anything else.
I'm hoping to get a doctor's opinion on this matter. I'm really unsure as to what I should do. When I had my appointment for the cystoscopy and consultation, I had thought that a date for the original surgery would be given. I did not expect the urologist to get upset and walk out on me. After 3 years of this I had hoped that the problem would be corrected. As a result I have been depressed and discouraged. I'm not looking forward to spending the rest of my life with either a suprapubic catheter in or with another loction on my body to self cath from. I'm more than aware that the fistula repair can result in life altering consequences, but at least I have had a chance at getting things repaired as closely to it's natural state as possible. Should it fail I could allways get the suggested surgery to have the flow of urine rerouted.
Please give me your opinion. I have been depresse prior to January fearing that surgery would not be performed. As much as this urologist is not wanting to risk doing me physical harm, he does not realize that psychological and emotional harm has allready taken place. To me it is greater harm than the physical harm of not having the problem repaired after 3 years of waiting. Each time that I went in for follow ups, the original surgery was mentioned as an option, with the exeption of the last 2 consultations.
I would like to have as much of the original function of the urinary system restored.
PLEASE HELP!!
For the last three years now, I have lived with a fistula between my urethra and rectum. The first urologist tried to see if spontanuous healing would take place with an indwelling catheter in the urethra. This did not work and I was referred to urologist # 2.
At first a Fibrin glue was tried but this came out the day after the procedure. It was than suggested to reroute the flow of urine away from the fistula by placing a temporarily suprapubic catheter. Now 3 years later things have not healed at all. Originally the second urologist had mentioned a complicated and extensive surgery to repair the fistula. Now after my last cystoscopy he is not willing to persue this surgical procedure and actually got upset with me when I insisted to get it done since I have lived with the problem for 3 years now.
The surgery that he is suggesting now consists of building up the bladder using a piece of my bowel and then rerouting the urinary outlet to some place on my body from which I can than self catheterize from.
This idea sounds better than the suprapubic catheter which I have lived with for the last 2 years now, but it also scares me. In order to do this modification, the outlet at the bladderneck will be closed off and the actual fistula between the urethra (penis) and rectum will remain. This surgery is life changing and penrmanent. There is no way of reversing it should I come to regret my decission in the case that there are complications. Currently I experience a lot of pain at times between the rectum and scrotum. I don't know if this will end following the surgery. I also have cramping of the bladder as well spasms.
I would like to get a third opinion, the first urologist referred me to #2 since #2 specializes in these type of problems. Some how I must have offended # 2 as he seemed to be unwilling to have a consultation with my wife and I and finally agreed to do so. I don't want to risk my chances with urologist # 2 as he has a record of being a very good surgeon.
I'm hoping that another urologist is willing to perform the originally planned surgery since this surgery would leave me with things being as natural as possible. Going ahead with the other surgery proposed by #2, is life altering and requires me to constantly carry catheters on hand.
When I first came down with this problem, I was still able at times to enter my bladder with a catheter. Now the catheter seems to allways end up in the rectum or ends up in a place in the urethra that prevents it from goig into the bladder. This might be the reason as to why #2 is unwilling to perform the original surgery.
I'm aware of the comlications and risks of the original surgery and still would prefer it over anything else.
I'm hoping to get a doctor's opinion on this matter. I'm really unsure as to what I should do. When I had my appointment for the cystoscopy and consultation, I had thought that a date for the original surgery would be given. I did not expect the urologist to get upset and walk out on me. After 3 years of this I had hoped that the problem would be corrected. As a result I have been depressed and discouraged. I'm not looking forward to spending the rest of my life with either a suprapubic catheter in or with another loction on my body to self cath from. I'm more than aware that the fistula repair can result in life altering consequences, but at least I have had a chance at getting things repaired as closely to it's natural state as possible. Should it fail I could allways get the suggested surgery to have the flow of urine rerouted.
Please give me your opinion. I have been depresse prior to January fearing that surgery would not be performed. As much as this urologist is not wanting to risk doing me physical harm, he does not realize that psychological and emotional harm has allready taken place. To me it is greater harm than the physical harm of not having the problem repaired after 3 years of waiting. Each time that I went in for follow ups, the original surgery was mentioned as an option, with the exeption of the last 2 consultations.
I would like to have as much of the original function of the urinary system restored.
PLEASE HELP!!
Hi,
Thank you for your reply. I'm sorry to hear that you have problems with the suprapubic as well.
Just over the last few days I have had quite a bit of discomfort from the suprapubic. What happens in that I end up with bladder spams and pain in the penis. I can twist the catheter and things will feel better for a bit, but no real relief. I have had this catheter for two years now and just recently am experiencing these problems. I have had them before but they were only short term.
I was hoping to keep functions as close to natural as possible. Therefore I had thought that the repair of the fistula be it extensive would have been the most reasonable solution. The urologist however does no longer seem to think so. When he did the last cystoscopy he noticed other false passages resulted from self cathing. This is why he now refuses to perform the original planned surgery. I however believe that once the fistula has been repaired, an indwelling penile catheter should be left in place for a year to give the urethra a chance to heal.
The new proposed surgery involves building the bladder up with a piece of the bowel and then creating a stoma that can be catheterized about 4 times a day. The iidea gives me some concern since I allready have a neurogenic bladder. The other thing is that I have almost every day problems with pain near the prostate. Since the surgery will close of the urethra towards the prostate and penis it does not really deal with the fistula directly. I therefore fear that the pain will not be relieved. Previously I have had problems with fecal matter at times (while having diarhea) going into the fistula and penis. It than sits there and I am able to get it out while straining to urinate through the penis. Once the flow of urine is no longer being passed through the penis, how will I clear the penile urethra from the fecal matter. On ocasions when I have had a situation like that, I have been in severe discomfort untill I was able to get the fecal matter out. With the urethra in the penis and prostate being closed, I no longer have any means of clearing it.
To me it seems to make the most sense to repair the fistula even if I was to remain with the suprapubic catheter for some time. Removal of the prostate is not an option as it will result in being incontinent.
The other problem is that this urologist is the only one in the province who deals with this type of urological problem. I would love to get a second opinion, but am afraid that this will not be possible since he is the only one. The other problem is that the urologist who looked after me felt that he did not know how to deal with this and sent me to the current urologist. Another problem is that most of the urologists in this province work out of the same clinic. Finding another urologist will give a problem.
For now I will keep my appointment, but will have a long discussion with my GP once he is back from vacation.
I really apreciate your reply and I have one question if you don't mind.
I'm classified as being disabled and one form of exercise that I did really enjoyed was swimming. Since I have had the suprapubic catheter, I have not been swimming as I am afraid that there is a risk of infection from the pool water.
When I had the urethral (penile) catheter, I just used to plug the end and was able to hide the catheter in my shorts. Do you know if swimming is not recommended with a suprapubic in? I have asked, but did not get a reply.
I feel that to stay as close to nature or the way that God made me is how I should remain. Therefore I think that remaining with the suprapubic would be the best solution, however the pain the last few days has made me feel that I'm willing to risk things if there is a chance that the pain can be relieved.
Thank you
Thank you for your reply. I'm sorry to hear that you have problems with the suprapubic as well.
Just over the last few days I have had quite a bit of discomfort from the suprapubic. What happens in that I end up with bladder spams and pain in the penis. I can twist the catheter and things will feel better for a bit, but no real relief. I have had this catheter for two years now and just recently am experiencing these problems. I have had them before but they were only short term.
I was hoping to keep functions as close to natural as possible. Therefore I had thought that the repair of the fistula be it extensive would have been the most reasonable solution. The urologist however does no longer seem to think so. When he did the last cystoscopy he noticed other false passages resulted from self cathing. This is why he now refuses to perform the original planned surgery. I however believe that once the fistula has been repaired, an indwelling penile catheter should be left in place for a year to give the urethra a chance to heal.
The new proposed surgery involves building the bladder up with a piece of the bowel and then creating a stoma that can be catheterized about 4 times a day. The iidea gives me some concern since I allready have a neurogenic bladder. The other thing is that I have almost every day problems with pain near the prostate. Since the surgery will close of the urethra towards the prostate and penis it does not really deal with the fistula directly. I therefore fear that the pain will not be relieved. Previously I have had problems with fecal matter at times (while having diarhea) going into the fistula and penis. It than sits there and I am able to get it out while straining to urinate through the penis. Once the flow of urine is no longer being passed through the penis, how will I clear the penile urethra from the fecal matter. On ocasions when I have had a situation like that, I have been in severe discomfort untill I was able to get the fecal matter out. With the urethra in the penis and prostate being closed, I no longer have any means of clearing it.
To me it seems to make the most sense to repair the fistula even if I was to remain with the suprapubic catheter for some time. Removal of the prostate is not an option as it will result in being incontinent.
The other problem is that this urologist is the only one in the province who deals with this type of urological problem. I would love to get a second opinion, but am afraid that this will not be possible since he is the only one. The other problem is that the urologist who looked after me felt that he did not know how to deal with this and sent me to the current urologist. Another problem is that most of the urologists in this province work out of the same clinic. Finding another urologist will give a problem.
For now I will keep my appointment, but will have a long discussion with my GP once he is back from vacation.
I really apreciate your reply and I have one question if you don't mind.
I'm classified as being disabled and one form of exercise that I did really enjoyed was swimming. Since I have had the suprapubic catheter, I have not been swimming as I am afraid that there is a risk of infection from the pool water.
When I had the urethral (penile) catheter, I just used to plug the end and was able to hide the catheter in my shorts. Do you know if swimming is not recommended with a suprapubic in? I have asked, but did not get a reply.
I feel that to stay as close to nature or the way that God made me is how I should remain. Therefore I think that remaining with the suprapubic would be the best solution, however the pain the last few days has made me feel that I'm willing to risk things if there is a chance that the pain can be relieved.
Thank you
It sounds urgent. I was suspected of having the same problem and due to huge risk of infection, the repair would have been fast. That wasn't my problem and now I have a suprapubic catheter which broke and I am going back in in two days for another surgery. But, back to you, I am only a med student, patient and human, so all I can say is that if you want to stay reasonably normal anatomically, keep fighting and stand up to doctors and surgeons untill you are heard because there will be options. Otherwise, the intermittent daily self-catheterization isn't too bad. I have been doing this until recently, and they have equiptment and options that are relatively user-friendly. Good luck, and stay strong xx
Please share your experience, knowledge and advice.
I woulld like ot get a doctor's opinion?
Thanks
I woulld like ot get a doctor's opinion?
Thanks
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