Suprapubic Catheter Option

User

Posted 14 Mar 2021 at 23:25

In June 2013 I was originally diagnosed with aggressive Prostate Cancer staged at T4.......In September 2013 had a Radical Prostatectomy, followed by Extensive Radiotherapy in January 2014. In January 2016 the cancer spread to the bone and had chemo.........Had SABR Radiotherapy on a new hip tumour in October 2019. I have just had more scans which have identified 4 new tumours, 3 in the hip again and one that has appeared on the prostate bed. I start SABR radiotherapy again in a couple of weeks on the 3 hip tumours.

In January 2020 I started developing a stricture and had my first urethral dilatation which worked well for about 4 months and then had a second urethral dilatation which was not so successful. At the present time I am now self-catheterising up to 4 times a day. My water works are now shot to pieces and I can only dribble and have a massive problem with retention and yes with urgency I have "p****d my Pants" on many occasions. I am very active physically and do a massive amount of cycling and will be taking part in Time Trials at the end of this month.............At the moment I am doing a lot of training on my turbo trainer and actually rode 600km in my "Pain Cave" in January alone......................

Up to now I have refused to have a urethral catheter fitted as could be a serious problem when cycling, also having had three fitted after various operations I hate them and find it takes a massive toll on my mental health.

I have been discussing the possible option of a Suprapubic Catheter being installed with my Urologist. I have researched on the internet and read some of the threads on the forum and still have a few questions:

1. Is there anybody on the forum who is active and had a Suprapubic Catheter fitted, if so what limitations have you experienced ?

2. If you remove the bag temporarily and have a flip valve do you still have problems with leakage. A possible intention is to remove the bag during a Time Trial which is approximately 30mins and then re-install the bag and drain. For longer 3 - 4 hour rides I have read where people have removed the bag and installed a tube attached to the bike and draining on the road all the time.......concern here would be infection.

3. Can you go Scuba Diving with a Suprapubic Catheter fitted ?

Any feedback would be really appreciated....................

Edited by member 15 Mar 2021 at 09:00 | Reason: Not specified

User

Posted 15 Mar 2021 at 02:36

For what it’s worth I had a supra-pubic catheter fitted for ten days after my prostatectomy, and apart from the general inconvenience of having a catheter at all, I found it very comfortable with no leakage at the pubis / tube joint.

I hope someone else can give you more insight about the long-term use of one.

Cheers, John.

User

Posted 15 Mar 2021 at 08:41

Due to having similar problems to you I have had a SPC for four years. I am Certainly not as active as you but , I have been working on a house renovation for the last couple of years and the SPC does not hinder me that much, lots of bending, stretching, crouching,etc.

Wether you will leak in 30 minutes with a flip flo will depend on your bladder capacity. I cannot hold more than twenty ml of urine. Bladder spasms are an issue but mine never seem to happen when active. If I walk the dog bladder drains and no issues, when I stop walking I will leak or get a spasm that causes a leak. A strong pelvic crunch will sometimes stop the leak and force the urine down the Catheter.

Not sure about the scuba diving, I shower rather than taking a bath, I belong to a FB site and there is a mixed opinion about bathing and swimming with the SPC. I will ask a question.

Getting the right fixation device for the Catheter is the number one priority the statlock device is great but it doesn't fit all Catheters. Leg sleeves and straps etc you learn what is best for you as go on. A tap lock for the bag or valve saves wet socks.

I can imagine cycling with a urtheral Catheter would be very comfortable.

I was going to have uretheral reconstruction surgery to sort the stricture but unfortunately the bladder shrinkage meant it was no longer viable. I would also imagine the reconstruction surgery would have an effect on serious cycling.

The SPC is not without its issues, infections can be more frequent, I don't get that many. Blocking of the Catheter is another issue but a quick flush a the right fluid intake helps that one, I have never had to have an emergency change of SPC.

Routine change frequency will vary depending on the build up of sediment in the Catheter.A Catheter should be changed after a maximum of 12/13 weeks. I normally get a change every 6-8 weeks ,if you can last 12 weeks you are doing well. Some people have horrendous experience when having their are catheter changed. I have a routine which makes mine pretty much pain free.

Positioning if the Catheter within the bladder can make a massive difference, I get a slapped wrist from the District nurses for some of the things I do.

My alternative would be bladder removal but the bladder surgeon is concerned that the SRT has damaged the bits they use to form the conduit.

Any more questions, just ask.

Thanks Chris

User

Posted 15 Mar 2021 at 09:39

Thanks Chris.........

At the moment I have done my exercises and got my Pelvic floor good again............most of the time. Due to the location of the stricture another urethral dilatation could mean that muscle damage could occur and then that would be a catheter fitted full time. Also due to the previous Radical Prostatectomy my Urologist has recommended that a minor operation is performed to install the catheter rather than the standard procedure to ensure no other damage is performed to possible slight changes in location of organs.

I have also been looking at alternative underware rather than just having bags strapped to the legs. I have found a company called Cathwear in America that produces special underpants that allow the bags to be installed in pockets rather rather being strapped to your leg. Couldn't find a supplier in the UK so have asked the question of supply directly from the US.

Have appointments with my Urologist and Oncologist in the next 2 weeks to discuss further....................

User

Posted 16 Mar 2021 at 07:59

My first SPC was done in the recovery room following an aborted dilatation. As you say the organs get moved during RP, I was in retention and had to wait quite a while for a radiologist to come and scan me so they didn't miss the bladder. I had a shot of morphine while they did the procedure.

I asked some of your questions on a Catheter FB site. There does not appear to be any scuba divers or serious cyclists with SPC on there. Swimming does not seem to be an issue. Use of hot tubs is not advised with the SPC.

Hope all goes well.

Thanks Chris

User

Posted 16 Mar 2021 at 10:57

Hi Chris

Thanks for asking the questions................can certainly understand the thoughts with a hot tub as I cringe at them.............human soup makers is a great explanation I was told and it has stuck with me ever since...............just think what is in the brooth.

I have an appointment with my Urologist next week and have also passed on the questions to his secretary so hopefully will be able to discuss then.

Thanks again..............

User

Posted 16 Mar 2021 at 18:27

This chap may be able to help you , He has had a SPC for a long time
Flyboy

https://community.prostatecanceruk.org/default.aspx?g=profile&u=3088

I hope I am allowed to show this link , if not remove it please

Regards Barry

Edited by member 16 Mar 2021 at 18:32 | Reason: Not specified

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