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Urine problems alongside treatment.

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User

Posted 15 May 2020 at 17:19

I've been diagnosed with prostate cancer for 4 years and alongside treatment, I have experienced increasing PSA levels as well as urinary problems.

My PSA levels have consistently been above 260, and I've had chemotherapy as well as radiotherapy.

One thing that is quite difficult to cope with is my urinary problems. After numerous UTIs, I now have a urinary bag which is very uncomfortable and whenever I try to urinate, I experience a lot of pain and discomfort, mainly due to a build-up of pressure. Sometimes, I am unable to urinate and only experience small drops /leakage.

This is having quite an emotional impact on me and I feel quite isolated and lonely in dealing with this: sometimes I feel quite depressed. I'm fearful of the fact that after the urinary bag is removed, I will go back to square one with dealing with the immense pain as before.

I would like to ask for any advice from the community, as well as any precautions I should be taking and ways for me to deal with this situation, both physically and emotionally. Sometimes I feel as though I do not receive adequate advice from my Doctor.

User

Posted 15 May 2020 at 18:46

Danny

I have had a suprapubic catheter for the last three and a half years and will have a bag of one description or another for life.

I did sufer with 30/40 bladder spasms a day but now seem to have got that under control. I can still urinate if I close the flip flo valve, but SRT and other treatments have reduced my urine capacity to less than 50ml.

What sort of catheter do you have, what size and what was your flow like before the catheter was fitted. My problems started not long after surgery due to a Urethral stricture. I am guessing you still have your prostate.

Knowing that I will have a bag for life does get me down some days but I can't change what I have, so I just get on with it. The daily routine can be a pain but, I don't have to get up in the night.

Any questions just ask.

Thanks Chris

User

Posted 16 May 2020 at 12:14

I was not peeing Right . I was dipping so little pee but at end I was experiencing pain. Sometime I thought I was peeing ok. This went for. Long time as I was avoiding to have an bag. Now as you know its very uncomfortable. So much. Urine come out. My. Night bag was so full in one of night. My belly shinked size. Recently I had radiation on my pelvic bone as it spread to the bone. It made my prostate inflammation as well my bladder. Having leeks the nurse said I will have the bag for 10weeks.but I dot. Understand. Why when. I had 10 circle of chemotherapy. This should have some effect of recovery. I think we men are. Treated like experience as which drug jworks. When I have feel to pee more. My browls opens up at some time with pain. How can I have relief to control this. My back hurts. Do you have some trouble. I also have lot of blood clots coming out

User

Posted 16 May 2020 at 14:21

Danny

The blood clots are not a good sign and may be caused by radiation.

Are you in the UK.

Thanks Chris

Edited by member 16 May 2020 at 14:22 | Reason: Not specified

User

Posted 16 May 2020 at 19:05

Yes I am in UK. Sometimes I feel to urine hard. It is then I see small dots of blood and when it goes though the tube. Blood flows into my bag. Not all the time as most time its clear. It's only when I need to pee but I only drops along side the tube from the penis. Sometime debis are notice in the tubes. 2019 I had 8m size kidney stones struck in my kidney tubes. It took 8 weeks before there removed. Maybe this something to do with this. My Dr. Says to let this settle down and get an blood test to see my psa level as to my next treatment. What should I be asking? All I want to have no bag. No pads and be control of my pee. Level.

User

Posted 16 May 2020 at 21:11

Danny

Small blood clots and debris are quite common in the catheter bag. Urine coming past the side of the catheter and out the end of the penis is again quite common, this is called by passing and can be uncomfortable. A small amount of blood coming down the side of the catheter is also quite common. Large clots in the tube and bag or fresh red blood coming out the end of the penis needs looking at. Urine in the bag should not be dark red.

You may also get bladder spasms, this is when the bladder contracts and again can be very frequent and painful, you can get anti spasm medication that may help. If the end of the penis is getting sore you could try some instilagel or hydrocaine, you can get that from a chemist without prescription for about £2-3. Instilagel or hydrocaine are lubricant anesthetic and antiseptic.

As your doctor says it probably needs time to settle down and heal before they check for the cause.

Hope this helps.

Thanks Chris

User

Posted 17 May 2020 at 07:43

While blood clots and debris are common, I should warn you about a possibility - because it happened to me. Several times slightly larger clots blocked the nozzle leading into the bag with me; this can be dealt with by changing the bag, or I found by gentle pressure to break the clot up. But they can also block the other end of the tube. I ended up in A&E one Friday evening after my biopsy (unfortunately I get bladder difficulties after general anaesthetic) because of this. If urine stops passing, take action quickly.

User

Posted 19 May 2020 at 15:39

Hi,

You wrote:

.............................................................................................

'This is having quite an emotional impact on me and I feel quite isolated and lonely in dealing with this: sometimes I feel quite depressed. I'm fearful of the fact that after the urinary bag is removed, I will go back to square one with dealing with the immense pain as before.

...............................................................................

Do you have a named Macmillan Nurse or Specialist Nurse from the hospital. They can be very helpful if you feel isolated and need advice. Perhaps your hospital has a Macmillan suite and you could ring them or look on their website and ring them for advice.

https://www.macmillan.org.uk/

The Prostate Cancer UK also have nurses able to provide advice. The number is on the website.

https://prostatecanceruk.org/get-support/our-specialist-nurses

Give them a call. Regards Peter

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