Terrified of another leak following catheter removal - it's now 5 weeks

Hi Jane
My husband also had a problem with internal leakage and fluid collecting in his pelvic area post robotic prostatectomy (11th Jan). They left his catheter in for 6 weeks in total and he had to go back to hospital every 1-2 weeks for a cystogram. This showed the leak reducing every week and the catheter was finally removed on Tuesday, and so far so good. They did say that there was still a very small 'blind ended' sac of fluid but they thought there was no actual leakage and were confident that it was safe to remove the catheter. The hospital said that they had been over cautious leaving the catheter in for as long as they had but as my husband had also suffered a small rectal tear during surgery they really wanted to make sure the urethral join had healed to avoid any further complications. Hope this helps and hope your husband makes a good recovery. Sometimes a 'head in the sand approach' is not a bad idea - less stressful anyway - as long as he has someone like you to do the worrying for him !
Alice

I had my cath in for five weeks with a cystogram every week. Once the leaking healed and cath came out - all was one with the universe.

Actually, after my last cystogram, I still had a tiny/little/wee bit of leaking. "We" (uro and i) flipped a coin and took the cath out.... And he gave me his cell phone number and we planned to meet in the ER should I need the cath put back in.... I didn't need to do that.

So...it just depends on if there is still some leaking or not.

I'd like to reiterate Alicepalace's input about the protection with pads and Depends. The bladder sphincter has been disabled for 5 weeks, it is highly unlikly it will be working straight away when catheter is removed. He may flow big time. I was one of the ultra-lucky ones that had the catheter removed at 5 days (after cystogram showed leak free) and have been continent without pads 5 days after catheter removed. Even in these best of the world conditions, I flowed like a faucet those first few hours and filled a diaper. We walked around for a couple hours that afternoon and I had basically no control of the flow. The day after cath removal I was down to one pad for the day but it was quite full and even though I thought I had control, I clearly had far less than I thought.

Given the state of your hubby's unused muscle for 5 weeks and that it has not been able to begin learning its new role in urinary control, he likely to just flow urine. Although my situation has been very different than his, I mention to you to help him understand that even in the best of times this is how it likely starts. Don't get discouraged. Assuming no leakage and catheter out is stable, rejoice in this newfound freedom and comfort. Enjoy the freedom, go out for comfortable walks, and just let the uncergarment protection do its job without concern. Regaining continence is the next step in a multi-step journey. It too will talk a while.

You are a wonderful wife standing by him with support and research to help him out.

May all go well for you both with the cath removal

I am a bit confused as I can't see how they can remove the catheter when there is still a leak, As my consultant continually tells us, urine finds the path of least resistance and if there is even a tiny hole, that means your abdomen fills with urine ... this is what happened last time and it blew an even bigger hole.

Anyway, Monday is the day - we will find out then.

Thanks for all your kind advice.

Jane - I hope all goes well with your husband and he heals up well this time - it can be very stressful on him, as well as you , the caregiver.

There might have been some confusion in the postings using the word "leakage" - I have to read them twice to get into my head you were talking about an internal leak at the point of the sutures - not - your hubby leaking externally into his pants.

-as others have said, it may take a while for the nerves to start communicating with each other again, and could take up to 14-16 weeks before being able to gain bladder control -

-here's to a healed up, plumbing setup, less stress and a steady boring recovery from now on.
hugs,
Bronson

Yes sorry - I have been confused about this too. I DID mean INTERNAL leakage into his abdomen and not external leakage into pants (which we are very familiar with even with the catheter!).

It was hideous and I haven't read of anyone having this problem. It caused agonising pain following catheter removal and is the reason I am so scared about him having it removed this time.

Maybe I am just being a baby and worrying unnecessarily (that is what he tells me), but the pain was the worst I have ever seen in anyone and he was left like it for 21 hours!!!

I am so grateful for all your support and kind words.

Yes I DID trust the surgeon until this terrible internal leak my husband had. The surgeon advised him to drink a pint of water (which was crazy) and then left him in complete agony 9 hours after catheter removal for a further 14 hours following admission to hospital. It has made me very distrustful of his advice.

I am worried that he also took out the catheter too early because he was going on holiday!

In fact I will post a question about early catheter removal and see what other people's experiences are.

My faith in him is lost I'm afraid - hence my need to join this forum!

I want him to be rid of the cursed snake as much as my husband, but if it saves him 5 more weeks of catheterisation, I would rather wait a couple more days! Of course it is my husband's decision not mine!!

So am I right? My husband refuses to discuss it!

I guess nothing we can do (not interested in litigation) but I can't trust the surgeon now!

You had the same thing Phenom? You too were recatheterised for 5 more weeks. How did it go on second removal?

All sounds like very good news for you now??

Did they do cystogram before taking catheter out (presumably not from your signature)?

My husband is 55 years old and August 6, 2014 had a Radical Robotic Prostatectomy performed. The surgeon said the surgery had gone as well as a surgery could have gone. One week later, his catheter was removed. That day he didn't feel great after the removal. Thursday wasn't the best either. Each day I called to report symptoms, the office kept saying normal. By Saturday he was in agonizing pain. I called again and the response was basically the same. They did say if the pain was out of control go to the ER. Exactly what we had to do. The ER doctor said you might need to be irrigated, because on Friday my husband had bloody urine an at one point passed a blot clot. The ER didn't feel comfortable jumping to that irrigation because of the pain level my husband described. He at the height of pain was ten plus. So the Dr chose to do a scan of the bladder and it checked pretty good. So next he ordered a CT Scan. He then came back saying my husband had a 14 cm by 5 cm abscess of infection. That's what was putting so much pressure on the pelvic floor and at his scrotum. He was admitted and given Dilaudid every two hours for the next 24 hours. My husbands surgeon came in and said he didn't agree with infection, he believed it to be a pocket of urine. We were sent home on Monday with increased meds and the catheter was put back in. Tues and Wednesday ( which was two weeks after surgery) went pretty well. Not an over abundance of pain medicines needed. Then Thursday my husband kept saying he felt awful. He was hurting more again and taking more pain medicine. I called to report this. By today, Friday the 22nd, the pain was almost unbearable again in the am hours. So when the Dr.'s office opened I called. Again the answering service kept saying normal. I had a pretty long discussion saying this was the same thing they had told me one week earlier, when we ended up in the ER. Finally, they said my husband's surgeon was in surgery for the day at the same hospital so if we felt he needed to go, they suggested we go there. Well I didn't need the suggestion, I already knew we were heading there. On arrival they took us right back in the ER. The Dr came in within 30 minutes of being in a room. She examined him and said that he possibly needed another CT scan to see the pocket and if it was larger, smaller or what? Yet, since his Dr was in surgery she was going to page and make sure if this is what he wanted or not due to more radiation and such. He said he did not want a CT scan. He felt possibly bladder spasms and put him on valium and sent us home. Hoping this with his Hydrocodone would control his pain. Has anyone had any experiences like this? Is it the pocket of fluid that can cause so much pain in the scrotum and pelvic area? Can spasms last for a long time or do they come and go? His case sounds very familiar with this forum. Thanks so much for any help. Julie the concerned wife.

Thank you so much Jane for sharing. It does get a little over whelming. Others knowledge and experiences really help!

Jane, I am not for sure why they haven't. He goes tomorrow for his first cystogram and then has a office visit with his surgeon. Praying they make the right decision on what happens next.