12 replies to this topic

[Diane W]

Hi,
I am 45 and have been c5/6 for 29 years. I have always used an indwelling catheter with no problems but my bladder is now not so good. I have been advised by my specialist to have a urostomy but warned that as i am c5/6 it will be a major operation.
I would very much like to hear from other tetraplegics that has had a urostomy please.
Diane.

[Millard]

Diane W, on 26 February 2011 - 02:46 PM, said:

Hi,
I am 45 and have been c5/6 for 29 years. I have always used an indwelling catheter with no problems but my bladder is now not so good. I have been advised by my specialist to have a urostomy but warned that as i am c5/6 it will be a major operation.
I would very much like to hear from other tetraplegics that has had a urostomy please.
Diane.

Hello Diane,


I haven't had a urostomy but I am a member of a forum where someone asked a very similar question. The reply was he wished he had done it long ago and had not procrastinated about it so much. He had had bladder cancer and finally it was no longer an option.


Good luck with your choice.

[Diane W]

Millard, on 26 February 2011 - 09:49 PM, said:

Diane W, on 26 February 2011 - 02:46 PM, said:

Hi,
I am 45 and have been c5/6 for 29 years. I have always used an indwelling catheter with no problems but my bladder is now not so good. I have been advised by my specialist to have a urostomy but warned that as i am c5/6 it will be a major operation.
I would very much like to hear from other tetraplegics that has had a urostomy please.
Diane.

Hello Diane,


I haven't had a urostomy but I am a member of a forum where someone asked a very similar question. The reply was he wished he had done it long ago and had not procrastinated about it so much. He had had bladder cancer and finally it was no longer an option.


Good luck with your choice.

[Diane W]

Thank you Millard for your reply. I would very much like to be in contact with that person you mentioned, i am quite desperate to know more about this before i return to the spinal injuries unit.
Many thanks again
Best wishes
Diane.

[Millard]

Diane W, on 27 February 2011 - 10:30 AM, said:

Thank you Millard for your reply. I would very much like to be in contact with that person you mentioned, i am quite desperate to know more about this before i return to the spinal injuries unit.
Many thanks again
Best wishes
Diane.

Hello Diane,


Check out this thread: http://sci.rutgers.e...hlight=urostomy There are several posts on here about the urostomy. The one at the bottom, SCIfor55 (?) has had this surgery. He is a good guy and would be very happy to communicate with you. You can run a search there and find many more threads covering this topic.


All the best.

[Diane W]

Millard, on 27 February 2011 - 04:02 PM, said:

Diane W, on 27 February 2011 - 10:30 AM, said:

Thank you Millard for your reply. I would very much like to be in contact with that person you mentioned, i am quite desperate to know more about this before i return to the spinal injuries unit.
Many thanks again
Best wishes
Diane.

Hello Diane,


Check out this thread: http://sci.rutgers.e...hlight=urostomy There are several posts on here about the urostomy. The one at the bottom, SCIfor55 (?) has had this surgery. He is a good guy and would be very happy to communicate with you. You can run a search there and find many more threads covering this topic.


All the best.

Many thanks Millard, i very much appreciate your help. i am now going to look at the thread.
Best wishes
Diane.

[ghoster123]

hi diane, i am a c5-6 who has had a urostomy about 16 years ago, was the best think i ever done.
yes the op is long but no different than any other. i find it much easier to deal with than catheters or condom and legbags, i have had less infections and feel generally better.
the pad and bag i use (convatec) are very easy to manage and take about 1 min to change (about every 4-5 days)(use an inco sheet to stop the drips) , emptying the bags during the day simply means attaching the tube to the end of the tap then opening the tap simples. if you are worried about this procedure or have any questions please ask me.
ghoster

[Diane W]

ghoster123, on 28 February 2011 - 11:28 AM, said:

hi diane, i am a c5-6 who has had a urostomy about 16 years ago, was the best think i ever done.
yes the op is long but no different than any other. i find it much easier to deal with than catheters or condom and legbags, i have had less infections and feel generally better.
the pad and bag i use (convatec) are very easy to manage and take about 1 min to change (about every 4-5 days)(use an inco sheet to stop the drips) , emptying the bags during the day simply means attaching the tube to the end of the tap then opening the tap simples. if you are worried about this procedure or have any questions please ask me.
ghoster

[Diane W]

Thankyou Ghoster, l really appreciate your reply.
I have so many questions that l am going to send you a PM.
Thanks again.
Diane

[charly]

Diane W, on 26 February 2011 - 02:46 PM, said:

Hi,
I am 45 and have been c5/6 for 29 years. I have always used an indwelling catheter with no problems but my bladder is now not so good. I have been advised by my specialist to have a urostomy but warned that as i am c5/6 it will be a major operation.
I would very much like to hear from other tetraplegics that has had a urostomy please.
Diane.

Hi Diane,
I am also a c5-c6 complete quadriplegic, since 1962. I used idwelling catheters for about 10 years, then switched to the external condom (aka "gizmo"),until my bladder was taken out and an ileal conduit was installed. It is considered "major surgery", so all of the specialists, before allowing your surgery, will discuss and in one way or another e.g. current medical records and/or other means/tests, will want to be confident that you can handle the operation. This may add up to several doctor appointments, but it was somewhat reassuring to me that they would not perform any surgery if they have serious reservations. My surgery was on March 7, 2011--almost 4 months ago. The surgery went fine, no problems--10 days in the hospital. Only complication--6 weeks post-surgery, got an abscess that got infected, then drained and constant antibiotics. In hospital about 16 days. My doctors may have been more vigilant, due to breathing difficulties that began some 3 years ago. They needed to trust that I could handle the anesthesia. All went quite well--even better than they expected. My urologist, after removing a small, but recurring tumor yearly, with the last one actually going into the bladder wall/muscle, recommended I have my bladder removed. Even though I am not quite up 100%, I am physically much more comfortable. The stoma/bag etc. is much easier, faster, cleaner, simpler than catheters. I am quite pleased with the changes already. You being quadriplegic, having much experience in problem-solving, is to your advantage. Good luck, Chuck

[Diane W]

Thanks Chuck, that it very helpful.
Can l ask where you wear your bag? I like my jeans to fit tight to my tummy so was wondering about how successfull it would be to pipe it to a leg bag? I have not been back to talk to my consultant about the operation yet so l am reasearching as much as possible.
Many thanks,
Diane.

[Maharishi]

Diane W, on 26 February 2011 - 02:46 PM, said:

Hi,
I am 45 and have been c5/6 for 29 years. I have always used an indwelling catheter with no problems but my bladder is now not so good. I have been advised by my specialist to have a urostomy but warned that as i am c5/6 it will be a major operation.
I would very much like to hear from other tetraplegics that has had a urostomy please.
Diane.

Diane

I don't know if you will see this but I am due a urostomy soon due to bladder cancer and would like to know how you got on. Hopefully well.

I have been c4/5 tetra for 25 years.

Darren.

[Diane W]

Hi Darren,
I am no further on .... still waiting for my next appointment.
Please let me know how you are getting on, l am very interested as we are very similar in age and injury levels.
Best wishes,
Diane

Maharishi, on 05 October 2011 - 07:41 AM, said:

Diane W, on 26 February 2011 - 02:46 PM, said:

Hi,
I am 45 and have been c5/6 for 29 years. I have always used an indwelling catheter with no problems but my bladder is now not so good. I have been advised by my specialist to have a urostomy but warned that as i am c5/6 it will be a major operation.
I would very much like to hear from other tetraplegics that has had a urostomy please.
Diane.

Diane

I don't know if you will see this but I am due a urostomy soon due to bladder cancer and would like to know how you got on. Hopefully well.

I have been c4/5 tetra for 25 years.

Darren.