Long term catheter - any tips on living with this - Being diagnosed with prostate cancer

User

Posted 10 Mar 2016 at 16:54

Hello - diagnosed 2 weeks ago - have had pain in right thigh for over a year - GP said was due to trapped nerve. Saw Orthopaedic Surgeon early this year privately - he too thought was trapped nerve but took X-rays before proposed steroid injection. X-ray showed lesions on right femur - subsequent blood test showed PSA level of 1632.5! Have had none of the symptoms us men are told to look out for re. prostate cancer. Day after GP gave diagnosis was admitted to hospital as an emergency as my bladder was enlarged and not emptying properly (picked up through ultrasound liver scan - ordered weeks ago for something completely different - borderline blood sugar levels - nothing to do with cancer diagnosis) - again, no symptoms. Catheterised and kept in for 5 days - prostate biopsy done while an in-patient, also started on Bicalutamide, first Zoladex injection next Monday, bone scan next Thursday. Have been told catheter will be for at least 3 months - possibly forever? Anyone else out there living with a long-term catheter - any tips welcome and also how are you getting on with it all?

Obviously cancer diagnosis wasn't great but the whole catheter thing has really made it all that much worse! Discharged from the hospital with a few bags and very little information, District Nurse came on Monday so some advice from her, but have found a lot of information and help on the internet generally. Also spoke to one of the Specialist Nurses on this site who was very helpful (and calming!).

How life can change in the space of 2 days.

Chris B

User

Posted 10 Mar 2016 at 20:21

Hi Chris sorry to hear all whats happened to you,

Flyboy has had a superpubic catheter fitted for a number of years if I had long term catheter fitted I would go for that rather than one up the penis,see Link below

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

All the best

Barry

If they have move the Link

Click on Members, type in flyboy and that should work.

Barry

Edited by member 10 Mar 2016 at 20:23 | Reason: Not specified

User

Posted 10 Mar 2016 at 22:31

Chris

As Barry has said flyboy has had SPCs for many years, in comparison at 90 days of continuous catheterisation I am a novice. My experience was fairly straight forward SP was fitted in the recovery room following an aborted dilatation, I soon got used to it at first I just had a flip flow tap, but had to convert to bags after a few days. I remember at about three weeks tell my consultant I was getting quite attached to it. The SP was changed during my next op and was a bit more troublesome, I had a stitch wrapped round the catheter and attached to my flesh at the exit point. I finished up on antibiotics for about three weeks and at the third attempt it took two nurses the wife and myself an hour to get the stitch out.

Keep the wound clean I was told do NOT use cleansing wipes or perfumed soaps to clean the area.

Be careful not to catch the catheter, it would take alot to pull it out but it is uncomfortable if you accidentally pull it.

So all in all not that bad.

If you go to the search box above and type in "well I never" without inverted commas you will see another members experience of a SPC, not as simple as my experience. Go forward through the posts to Jan 1st this year.

Make sure the catheter is fitted correctly to your leg strap. The fastener should sit in the v of the y joint, many pictures show the fastener only round the pipe, this does not stop the pipe being pulled down.

My morning routine was close leg bag tap remove night bag. Remove straps from leg bag and tuck the tap of the leg back under the thigh strap.

Have a shower and wash or wipe any mucus from the exit wound, a week in and you will get more confidence in feeling and washing the wound area.

Once I had dried myself I would fit a new/ dry strap to the other leg and transfer the catheter to the other leg refit the dry leg bag straps.Alternating legs is recommended and it means you can dry the leg where the strap was.

Use a bag stand,bucket or bowl for the night bag, a bowl or bucket will save the carpet in the case of accidents.

I did get some stick for this but if you OH is attaching and removing the night bags buy her some rubber gloves and some chocolates or flowers, one suggestion was that marigolds count as flowers.

I wore pyjama bottoms at night to stop any tangles and also straped the night bag pipe around my ankle area to stop the pipe getting pulled out of the leg bag. The pipe should not come out if it is attached correctly.

Any questions please feel free to ask.

Thanks Chris

Edited by member 11 Mar 2016 at 06:50 | Reason: Not specified

User

Posted 10 Mar 2016 at 23:16

Hi there

Speaking as a wife of a man with an Spc, who has also had the experience of a urethral catheter, I think we both agree that an SPC is much easier to manage. I am the author of "well I never" and my poor hubby has had a torrid time for the same reason as you. On the plus side, he is gradually being able to pass water through his penis but it is a dribble and each time he has measured the retained water (by using the valve, which is now working again) and he is still retaining 400 ml, so we are not out of the woods yet. In comparison to the retention and the damage to his kidneys I'd say the catheter is better, despite everything, Not being able to empty your bladder is horrible.

One thing did make us laugh in all this, our urologist said to us that one of the side effects of one of the operations (TURP) was possible impotence, well after five years on hormone therapy this came as a shock (as if).

I hope it works out for you, many people have lived for donkey's years with catheters and get used to the routine pretty quickly. Hygiene is hugely important, even so, infections are easily caught.

I also agree about the lack of information given in hospital, thank heavens for this forum and the generosity of the people here. We didn't even know that we needed a prescription for the bags or that we needed a spare catheter and only found out last week that we also need sterile water on prescription in case a bladder wash out is needed.

You have had a lot to take on board recently, I can well imagine the shock of it all. We will try to help with any other questions you might have, this place is great for support and information.

Good luck

Devonmaid.

User

Posted 12 Mar 2016 at 15:57

Thanks all of you - gradually getting used to the whole catheter thing - I guess it will all become routine in time.

Chris

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Long term catheter - any tips on living with this

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