Supra-pubic catheter experience

[Lyubov]

My 78-yo husband has suffered from radiation cystitis/urethretitis. Two years of off & on Foley & self cathing & still no full continence regained. Will likely go back to Foley but wants to consider supra-pubic catheter. Any comments, suggestions, recommendations from anyone with experience will be greatly appreciated.

[Hidden]

Our beloved member cujoe knows all about this? Others too will chime in I’m sure . There is nothing easy about any of this ! I self cathed awaiting a biopsy and went into k failure ..I then slunk out of the ICU with plastic tubes surgically implanted into each kidney. And a foley until internal stints another 9 months . I used bad antibiotics for UTIs the entire time . My joints then depleted greatly .. for me 8 weeks imrt ,Lupron and another adt drug shrank the pc tumors in my urology away . I understand the demeaning factor of a bad urology !I Pray that he escapes this mess soon to a better place . Once he gets his urology straitened out a bit the clouds will part . That will be a great day ..During My years in that hell my only prayer was to be able to pee semi normal without pain again . Thank God , I made it . Am I perfect ? Hec no ! Nobody is after APC hits! But I’m grateful to even be breathing today .. The sub thing could help him ? He will find out what is best for him . In the meantime it’s nothing but suffering . I tip my hat to you both in this struggle . My wife married me with the tubes and foley . Her love is the only reason that I’m still here now . Everyone else wrote me off . He has you . He needs you so . May God bless our wifes with the strength to endure ! I believe that he will get better . 🙏🙏🙏🙏💔Until he does I’ll keeping praying for him ! Scott

[Lyubov in reply to Hidden]

Thank you! You truly understand & are a hero to endure it all. So happy you have such a spectacular wife. I do my very best, too. So utterly terrible for you guys & we just love you all the more!

[Hidden in reply to Lyubov]

Without you there would be no us! We need you ! This APC tests our very fiber … Prop him up and love him much . That’s the best med! 💔

[Chask]

I have been living with an SPC for over 5 years now and can testify that it is not a problem at all. In fact most of the time I am not even aware that it is there. I should mention that my catheter is connected to a flip/flo valve rather than a leg bag, so my bladder operates completely normally. When it feels full, I just open the valve and that is just like have a normal pee except the urine comes out of the catheter rather than my willie.

Hygiene is very important to ensure no blockages - I have never had a blockage - and to avoid UTI’s - I have had a couple, quickly cleared up with anti-biotics. My catheter is changed by the community nurse every 5 or 6 weeks.

I have also had urethral catheters and to me they are a living hell, whereas the SPC is so easy and comfortable, especially if using a flip/flo valve rather than a leg bag.

Clearly not having any catheter is the ideal, but if you do need an external aid, then the SPC is the way to go.

Chas

[Lyubov in reply to Chask]

Thanks for this wonderfully strong recommendation! It will make my hubs happy to read, and we can share with uro without adding your name "Chask." Very happy it's working so well for you.

[tarhoosier]

My experience is with urethral catheter but I assume SPC is same in the manner of cleanliness. As Chask says think clean, clean, clean. Warm water and anti bacterial soap for me and carry alcohol wipes when away from home in case of locations where hygiene cannot be guaranteed.

[Lyubov]

Yes, hubs is very conscientious about cleanness with the Foley. I have lots of alcohol wipes on hand for him plus alcohol in spray bottle & he washes hands carefully before & after. It takes a long time, especially when he self-catheterizes, which is 3-4 times/day. Thus we're thinking of the supra-pubic. It would eliminate need for self-cathing. Just a horrible condition, nasty side-effect of radiation therapy (IMRT) 6 years ago.

[Hidden]

I did the supra-pubic catheter thing for a few weeks after HIFU surgery. Just be careful not to snag the hose on anything. That is a weird, visceral feeling tugging on your bladder like that. Otherwise not bad. I hope the underlying problem resolves so it doesn't have to be long term.

[Lyubov in reply to Hidden]

Thank you. Unfortunately in my husband's case it would be permanent. He has severe incontinence when standing following several stints with urethral blockages (damage from radiation therapy - IMRT). . .

[Hidden in reply to Lyubov]

That's a shame. I've heard too many stories like this of damage caused by radiation treatments.

[Lyubov]

It truly is horrible. None of the docs really even mentioned this as a possible side effect of radiation therapy! My understanding is that nowadays much lower radiation is used to avert such damage of healthy tissue...