28 days after surgery, catheter still around!

Hi All,
(Radical Prostatectomy January 12,2009, todays date, February 8th.)

Here's the back story -

Back in early 2006, this rare type of Carcinoid Neuroendocrine Tumor Cancer (NET) was reported to have affected only about one out of every 100,000 people. It was most often, and still in some cases today, misdiagnosed as a form of Irritable Bowel Syndrome, as it was in my case. This correct diagnose took about a year and a half!
Since I was "properly" diagnosed back in January of 2006, I underwent a General Surgery for a bowel obstruction, I had a Right Hemi-Colectomy, which they found three NET cancerous tumors out of the 23 Lymph nodes in a 18” section.

Last year, 2007, I underwent a Robotic Surgery to remove a NET tumor between my rectum and my seminal vesicles. This year, January 12, 2009, I underwent another robotic surgery, but this time is was for a low-grade prostate cancer, in which the doctor stated that at my age of 54 years, it’s best to have a radical prostatectomy now, than to wait 20 or 30 years when surgery will not be a viable option, and cancer would have spread..
I'm Still recuperating after surgery, After two cistograms, the leakage from the backside of the bladder is slowly healing, week to week, but I still have the JP (Jackson-Pratt) collection bulb on my left side, and I still have my catheter in. When having a BM, I also noticed a little pinkish, or small amount of blood come out from my catheter, the doctor said that was normal. He called yesterday to tell me that we should wait another two weeks to remove both tubes!!!! Yikes!! This is getting real old, but medically necessary. As long as they don’t have to remove and re-insert the catheter, I’ll be fine. I had a bad experience with an inexperienced nurse removing my catheter after my first general surgery...it lasted about 30 seconds of excruciating pain!!! I can’t think of them inserting when I’m conscience. Torture at its best. That’s why I ask to have them insert it when I’m under the anesthesia.

If I do have to have it in a for more time and it needs to be R and R, what pain / sensation can I expect?

The best part of this latest surgery was that on the way to the prostate removal, the surgeon came across a microscopic carcinoid cancerous tumor, which thankfully he removed.


Will these carcinoids ever stop? I guess I’m resigned to the fact that for the rest of my life, I will have future Surgeries. I had no idea that they would be found on the prostate, as some of you have said. You all are in my prayers indeed!

Dear Unhappy,

Sounds like you have had one rough time. I understand your fear of potential pain with all of this. I had 5 catheters inserted and removed over a period of 66 days after my open RP surgery in Novemeber. Just because you had one bad experience with a cath removal, doesn't mean any future one would be that way, please keep that in mind. I thought too, that I would never be able to handle having a cath installed while awake, but wasn't as bad as I thought, if they use plenty of lydacane jell, it can easily tolerable, even though it feels weird. Two of mine were installed while under from surgery, three were installed awake, it sounds worse than it was in reality for me. I hope you won't be too fearful on what lays ahead.

I wish you only the best, and some speedy recovery, and a rest from the fears and pain. We are here for you brother.

David in SC

Unhappy, another thought--that time you had a catheter removed before, do you remember why it was so painful? Was it a Foley, and the nurse forgot to deflate the bulb? (Ouch!)

Hello to all my brethren,
Thanks for the replies. Well, the one time I was awake when the so called nurse removed the FOLEY catheter,she did not say anything about not deflating the balloon, but it was very clear she was having a major problem with me after some time had passed. I was told it should take 3-6 seconds at the most. That was a very unnatural feeling to experience. I should have another cistogram next week and I am crossing fingers that it has healed enough to remove both tubes. ROGER G., What is placing Foley under traction mean, and just how long did you have the original JP and Foley in for?

The doc assured me that since I am 54, and that I had full erections prior to the RP,I should regain this function,however, he told me that he wants me to take .25 mgs Viagra each day after the foley comes out to help jump start the blood supply,and that I would also have more intense orgasms. (? I will have to ask him why this is possible) I am afraid that if he removed most of the nerve bundles and blood vessels on either side of the prostate to remove cancer, I will have a problem. I stocked up on adult diapers for the impending thought of bladder control problems. I don't know if this is a sure thing with everyone or not, since we are all different.

I don't want to sound like a WIMP pertaining to removing and re-inserting the foley if I'm going to have to have it in for more than two weeks,but I am. there, I said it. I've been through three surgeries in the last three years and countless CTs, nuclear and regular,and I don't want to think about someone shoving a tube up my ying-yang, if I can help it!

So the secret is tons of Lidocaine? Has any of your foleys have slipped right out? I'm real careful not to tug on it,and I use the Stat-Lok adhered to my right leg inner thigh to help keep that from happening.

Thanks again, lets just hope next week that these can come out...YAY! The Wimp

Post Edited (unhappycramper) : 2/10/2009 7:51:08 PM (GMT-7)

I had the my JB drain in for just under three weeks, and Catheter for four weeks.  For a while I had more urine coming out it than the Catheter.  Scared the crap out of me.  I ended up finding someone on the YANANOW web site who had the same issue.  The fellow called me from Texas to help me through it.  His advice... Leaks Heal.  He was right.

As the the traction..  My last week with the JB drain was spent back in the hospital in Hamilton.  They basically took the catheter, pull hard on it, and taped it to my leg.  Little Willy, and I do meen Little now, was not really happy about this.  The leak did stop however.  I also had issues with my catheter blocking

As for the ED, at 43 the doctor also told me I'd have no issues........ YEA!  I'm still waiting for things to start working.  Like the leaks... nerves heal slowly.  I'm still hopeful.

yeah, i stopped using the thing on your thigh after about a month on the cath, as the tape burns were eating a hole in my sking, and they really didn't help a lot if the tube was pulled. I learned to get by without that after starting my 2nd month with a tube.

unhappy,
when i was using the stat-lok's, i made sure there was a little slack between the end of the winky and where the Y in the tube attached, made a big difference.

Too bad they didnt tell you that lil tibit up front, geez. Also, on the spasms, didn't your dr. give you something for that? That's what the ditropan is good for, or its generic equiv. At first, since I was having the spasms constantly over 60 plus days, was taking the med 3 times a day, then they increased to 4 times. It always helped, but not always eliminated them.

Bladder Spasms. UMMMM..This past Friday afternoon, I started getting sharp pains from the tip of the peepee where the catheter comes out of,and it was a very constant, excruciating pain. I waited a few hours and it did not subside, but got worst, so I called the Dr. asking him if these could be signs of a UTI (urinary track Infection) and he told me for as long as the catheter has been inside since January 12th, he wouldn't be surprised if I didn't have one.

I luckily had 6 Cipro antibiotic pills on hand for the day they remove the catheter, and for two more additional days to prevent such a UTI. He told me to start the Cipro. When I'm always sitting trying to do a #2, that's when I really start having the bladder spasms that seem to be felt all over the bladder,penis,and I could just cringe everytime. The only pain meds are Motrin 400mg and vicodin 5/500 which a half when it really hurts seems to help. I do not take these everyday. I hope I'm not experiencing bladder spamas thinking they are a UTI instead. I really feel as though it is a urinary track infection.

Another reminder....As far as the kegal exercises, do you start while the catheter is still in, or do you wait til it's out. With this pain I'm having, it's painful to do them now anyway...does anyone know for sure? Thanks!

I would have to agree with Purgatory, Kegels with the cath in, I don't think so!

see if i can help calm some frayed nerves for you . I had the "scope" up me when I kept getting blockages. Despite what it looked like, it didn't really hurt. They used a generous amount of lidocaine jell all around the head of my penis, and in my case, foreskin area. They let it sit for a few minute. It was uncomfortable having the scope inserted, but can't honestly say it hurt. Didnt take them that long to get it into position, then the dr was busy looking all around. He took pics of where the blockage was, between the bladder neck and the urethra due to scarring from the PC operation. Before he removed the scope, they inserted some microscopic looking wire down the scope, and when the scope came out, they used the wire to guide in the new catheter. Again, weird, but didn't hurt.

Also, had 3 catheters inserted while awake, all with the jell, none hurt, all felt weird and uncomfortable.

Now when he went to remove the blockage, I was put under general anteth., and he went in and did his thing, 20 mins later, I was waking up in recovery, with a very large cath in place for the final healing time. None of this hurt of course.

When the final cath was removed, due to its size, the dr did have me stand up, and when he released the fluid in the balloon portion, the whole silly thing just fell to the floor like a slippery snake. Didn't hurt at all.

Thinking about the scope part and having it done are two different things. When my dr did the procedure where I was put under, I told him I didnt even want to know what he did or how he did it, made it easier.

Hope this makes you feel better, and trust me, I understand why you are a bit gun shy at this point, good luck brother.

David in SC

Thanks all for trying to calm my nerves,
So call me Wimp or baby..I don't care. This is all new to me. Sorry to double post Purgatory, but if I posted a subject line like "Cistogram to cystocopy", I am looking for a specific group of patience that have undergone this procedure with the camera and I guess I'm looking for reassurance that I will have nothing to worry about. So far the consensus is that it's not painful,but weird and uncomfortable. I'm wondering what the difference is. I am already fearing the pain beforehand, since our male members are a very sensitive part of us and just the thought of inserting something in it like a camera or any foreign object is a very mind-blowing thought.

Thanks again to all!

Ok..Thanks to all for trying to calm my needless concerns. It turned out that the Doctor the day before the cystocopy decided that he did not have to stick a camera up there in the penis,but after seven weeks, just to remove the catheter. The nurse used a syringe to insert about 120ml of saline into the bladder,then when I felt the urge to pee, she would pull the catheter out, then I stuck my pp into a urinal bottle and within a few minutes,was able to pee about 125ml. Now I am on man-diapers. I find myself wanting to pee anytime,even while doing daily stuff, usually every 1/2 hour or so. Then even after I think I'm finished while sitting on the toilet, I still keep dribbling. Now that the catheter is out, I am doing more kegal exercises. I'm afraid to sleep at night for fear that I will wet the bed. Pulling the catheter out is a very strange feeling. It's over now. I am Prostate free and hopefully, no chance of cancer, at least in this general area,now I have to work on the kegals,and (.25mg daily) viagra to help kick-start the blood. This might be an illusion for me,I just don't know if I'll ever be able to have a full erection like before. (This was a nerve-sparing robotic procedure) fingers crossed. Thanks again, and good luck to all!!!!!