Why returning to #18 catheter?

[Lyubov]

After self-cath 1/day with #18 for a few months, hubby had clots that required 2 ER visits. Uro put him on 24/7 cath with #20 then up to #22, total 8 weeks. After removal of 24/7 #22 next week, uro wants hubby to go back to daily self cathing with #18 (however, straight tip rather than curved tip as previously). Anyway, we are confused & wonder if anyone here has experience to share / shed light.

[Tall_Allen]

Are they weaning him off catheterization?

[Lyubov in reply to Tall_Allen]

He had a cystoscopy (surgical with anesthesia) Sept 2019. O.k. until January 2020 & uro had him start the self-catheter once a day with Colonoplast curved-tip #18. It worked o.k. but then didn't & uro dilated stricture 16-24 French in office. Then self cath again until August 6, 2020, when he woke blocked up in middle of the night & I took him to ER where they put in the 24/7 (still #16), with bag. But blood clots / gunk got bigger & back to ER Aug 11 at which point they inserted #18. Two weeks later, he was irrigated thoroughly & uro's nurse inserted #20; then two more weeks & uro himself inserted the #22, which is to be removed 10/7. The plan then is for hubby to return to self-cathing once/day with #18, but straight rather than curved tip. We are just not understanding why the return to size 18 when that was not successful long-term. Does the straight tip make that big a difference?

[Lyubov in reply to Lyubov]

Forgive me for bothering you with all this, admittedly I poorly understand what I'm talking about. . .

[Tall_Allen in reply to Lyubov]

These are good questions for his urologist.

[Lyubov in reply to Tall_Allen]

Roger!

[Hidden in reply to Lyubov]

We don’t learn these things in school . unless you’re a doctor ? There are no stupid questions. TMI on line. But you’re in the best place for info . ❤️

[fluffyfur]

Hubby had to self cath and would use both straight and curved. He started with 16 and worked up to 18 but never anything larger.

[Lyubov in reply to fluffyfur]

Thanks, fluffyfur. Sorry for your hubby, but reassuring to know about the size cath. Really appreciate your response.

[fluffyfur in reply to Lyubov]

Hubby just said he would start with the smaller one, and kind of work it in and then use the 18. He also said he bought the pre lubricated caths which helped a lot. PS He developed penile strictures after his RP. That's why he was doing it. And at first he was doing it every day and then moved to 3 x a week to prevent blockages. He used SpeediCath Model 28418 and found them to be the best.

[Lyubov in reply to fluffyfur]

Kind of you to add this info. Happy your man has made such great progress. My guy seems to be the opposite -- things getting worse. He's already had several dilations as well as the surgical procedures, but the improvements didn't last. I hope & pray this time will prove successful. I will pursue the "SpeediCath Model 28418" you mention.

[depotdoug]

Well i can related big time. I’ve been self cathing since Aug 2005. Found out i had a Neurogenic bladder right before they started 42 IMRT radiation zaps.

Yes, i had PCa radiation 1st. But hear this my self cath need had nothing to do with Prostate gland at all. My S3 sacral nerve was damaged from a back fall or injury. No S3 nerve working to tell my bladder to empty relax and peee.

I started with an FR 614 coude tip catheter and have been using them since. (5) to (6) times cath/day yes thats a lot.

FFW: 2015-2016 i had blockages with my coude tip cath coukdnt insert it at all not fun. Multiple trips to ER and urologists office bleeding and urine blockage backlog. Ugly ugly ugly.

Had 2 DVIU internal urethrol cystoscopy’s under surgey . They only lasted about 3 months.

Yes. I had a major “stricture” thanks to IMRT Rad zaps in late 2005. Oh by the way radiation oncologists dont tell you rad causes strictures

March 2017 i had a 3.5 hr urethroplasty stricture repair major surgey. Successfull yes! Ive been self cathing with my COLOPLAST FR 614 14” cath freely ever since.

I’ll stick with my coude tip cath for the rest of my Adv Pca life. No problems with UTI’s or cathing since March 17th 2017. Happy St Patricks day ill never forget!

Lyubov? Did you have radiation treatments?

We can message if you like.

Depotdoug

[Lyubov in reply to depotdoug]

Thank you for this. Yes, my husband had IMRT (with ADT) 2-3/2016, following RALP 4/2014 because of recurrence (PSA went from <0.1 to 0.2). We were told that the problem was from scarring caused by the radiation treatments. Based on what you write, returning to the #18 seems reasonable. I'm so sorry for all the difficulties you've had/have. It's all the price of staying alive, isn't it!

[depotdoug in reply to Lyubov]

Yes. I gad no idea id have to self cath for rest of my life whatever that is.

I’ve had 2 Medtronic interstim neurostimulator implants. Both were good tries for my urinary retention but failed to solve problem. Oh forgot to say i had SCA May 12,2011. Spent 12 days in CICU and on my 2nd ICD/pacemaker device. Should i say more?

[Lyubov in reply to depotdoug]

Well, you've got a heck of a lot going on! My sympathies & support! I hope we'll stay in touch down the rode on this.

[Hidden in reply to Lyubov]

Please keep us up dated. ?😎✌️

[Hidden in reply to depotdoug]

Whoa Nelly ! I Commend you for what you’ve been through .

[abmicro]

I also have a bleeding bladder with clots caused by radiation damage years ago. Getting cath training by a nurse today. Getting a camera in the bladder this Friday at Stanford. Getting worse. Want problem fixed but urologist locally does not want to do anything. Asking Stanford urology for alternatives to stop the bleeding.

[Lyubov in reply to abmicro]

That's just it, we don't know where the blood & clots actually come from, nevermind why. Good luck to you with getting help.

[MBOY1]

I’ve had recurring strictures as result of TURP, then radiation. Scarring. Been going on for 2+ years. Self cath with French 14. I’m told the difference between curved (Coude) and straight is curved is usually easier if trying to dilate for strictures. Whatever works is the answer and not sure why a #18 as that sounds pretty big to me. Uros get tons of free samples in all sizes and you should get a bunch and see what works best. The goal is to dilate and prevent strictures from recurring but however you get there should be fine.

[Lyubov]

Yes, we're just gonna try to get hubby to where he can successfully self-cath without having emergency blockages. He's been in 24/7 cath for 8 weeks & one more week to go. Really sick of it. . .

[Hidden in reply to Lyubov]

I pray that he can escape this hell. I did. We just don’t know how important our urology is , until it’s blocked . I was self cathing for weeks waiting for my urologist to return from spring break with his kids to biopsy me ..waiting for dx. Didn’t make it . K failure , and Icu for a week then tubes out of kidneys for a year and a half . The imrt and double adt shrank it all away . I shed the tubes and have been clear four years .?I hope he too can clear his waterworks . The surgeon that put the tubes in my back said” We’re just plumbers “.. life will be good again once he doesn’t need to see a uro anymore . The Last time I saw mine was when he was pre op for my orchiectomy . He was happy as all get out to do me the service . ..My wife suffered alongside me 24/7 . Her love saved me .. Hang in there with him. He needs you so .❤️🙏

[Lyubov in reply to Hidden]

Oh, my, Whimpy! You've been to hell & back. What a great wife you have & I'll try my best to keep on loving & supporting my sweetie. He now has an appt with med onc in a couple of weeks. We are hopeful that will provide better overall attention & possibilities if further treatment is needed. Not one of the doctors (2 uros, 1 rad onc) gave hubby any hint of this coming down the line, less than 4 years after the IMRT. . .

Thanks for your encouragement & support & all best to you & your wife.

[Hidden in reply to Lyubov]

Hang in there you two! This is a truly a brutal test ..I was caught there myself .. but the drs helped me .. they can help him too. They have to improve the pluming. Many prayers for him to jump these hurdles . And to get into a better pasture . We always must protect our kidneys. 🙏🙏❤️

[j-o-h-n]

Poor guy..... maybe a new M O is the answer to his confusing ordeal.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 09/30/2020 5:30 PM DST

[Lyubov in reply to j-o-h-n]

Yup, he's scheduled to see one in Oct 19.

[j-o-h-n in reply to Lyubov]

That's good news.... let's hope he/she is better.........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 10/01/2020 5:56 PM DST

[Hidden in reply to Lyubov]

Very good news!

[Hidden]

My empathy goes out to hubby .. from one that has had a twisted urology to another.. there is something to be done ? He will improve ??