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Big Set Back - Day 33 - New Catheter Back In

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Posted 12/17/2008 10:23 AM (GMT -5)
DJ,

Your story is incredible, almost a twin to the letter of mine, so I empathize with you all the way. My dr. says no driving with a cath in, so even though I cheated one time with the old one in, I am planning on being compliant this time. Right now, to me, even though I am on my 34th day with a cath, minus one day of freedom, the pain I went through yesterday when I clogged up is too fresh in my memory, so I wont complain much. Mostly waiting to hear from my dr. to see what the new plan is, just hoping perhaps it will be just a few days or a week at the most with the new one in place. I was so ready to get on to the next phase of my recovery, and to be able to help my poor overworked wife with errands and such. Most of the guilt I feel is related to that I am not much help to her, except with the lightest weight tasks I can do around the house for her. I hope you feel better now too.

David in SC
Posted 12/17/2008 10:30 AM (GMT -5)
Dave,

Yes, I was also hoping to help out my poor wife too. Well, even though the catheter is back in, the rest of me is feeling better, so I'm hoping to do more around the house.

DJ
Posted 12/17/2008 10:41 AM (GMT -5)
DJ, sorry you had the catheter back in.  The microscopic margin deal is common.  Tha'ts what my path report said.  The doc explained that it really didn't mean anything, sorta like the PNI reports that so many of us get when cance ris found in the nerve sheaths inside the prostate.  In my cast, the doc said the microscopic deal was probably 5 cells or less on the outside of the path sample, and likely the results of the surgery, sorta like a spill over of removing the prostate.  In a way, like the much discussed 'needle tracking'.  I would monitor (you will be anyway for the first 2 years or so) but not worry...

Posted 12/17/2008 10:41 AM (GMT -5)
Yes, since my surgery was on 11/14, the rest of me, mind and body, are feeling much better and wanting to do much more. Things I have been able to keep up with are like the trash, dishes/dishwasher, and believe it or not, all the laundry, picking up around the house, feeding dog/cat, and making her coffee of course (I don't do caffine myself), and sometimes cook dinner though that is not my forte. Can't vacuum, though, as the vacuum cleaner is very heavy to lift, move, and push around. Least it's a few things that I can do stuck at home for now.

David
Posted 12/17/2008 1:24 PM (GMT -5)
James,

Thanks for the info about microscopic margins. I wasn't familiar with needle tracking, but I looked it up and it makes sense.

I keep forgetting to ask someone--but I assume that while the catheter is in, the bladder gradually shrinks? That would explain why I had to pee so often the day the catheter was removed. Also might explain why 400-500ml is so painful for Dave and me, when this would seem like a normal amount to a healthy guy. The other noticeable phenomena is that the stream is rather weak, probably because the urethra got traumatized/weakened. I had a similar thing happen the day of my biopsy, but eventually peed out a blood clot, with some pain.

Dave, you're doing more than I am, I'd better get my act in gear, especially since my wife reads this forum.

DJ
Posted 12/17/2008 1:26 PM (GMT -5)
One more thing--my wife, who is an occupational therapist, wonders why men aren't allowed to self-catheterize in these situations? Other men, like those with spina bifida, self cath on a regular basis. Or so she says, anyway.
Posted 12/17/2008 1:31 PM (GMT -5)
self cath - no thanks.... In theory, since the surgeon is standing right there, he ain't got nuttin else to do... I'm curious about cystograms....I assumed everyone got one prior to the cath removal to verify no internal leakage? Is this not the case?
Posted 12/17/2008 1:51 PM (GMT -5)
Nope, no cistogram. All they did was look at the urine. It was a bit pink, but the nurse said it was fine.

You had a cistogram?

I would have done a lot of things, let alone self-cath, to relieve or avoid that pain. Still, you're probably right, most guys wouldn't do it.
Posted 12/17/2008 1:52 PM (GMT -5)
DjBear, the catheter will irritate (and stimulate the pee urge) the bladder and the inside of what remains of the bladder neck, not to mention all the stitches irritating the same area.  I think that is why so many have those just removed urges and such.  I know I did have them for a week or so after, until things settled down, etc.  I don't know what 400 or 500 ml is anymore, been a while since I was around any beakers, but my holding capacity was reduced for some time afterwards.  I eventually did get back pretty close to my 'natural, before surgery capacity' by delaying peeing as long as I could, hence stretching, so maybe the bladder does shrink in some guys.  I thought it might have been the fact that surgery had taken out the bladder floor and the bladder neck with the prostate and that reduced the capacity.  Interesting question, though..

Posted 12/17/2008 1:58 PM (GMT -5)
I did cystogram to see if it was safe to remove the cath...Found leakage - repeated the process four times and got the cath out on the fifth week. When you leak urine internally after the cath is removed, you get to go to the ER due to the pain...That's why I thought everyone did the cystogram.  
Posted 12/17/2008 3:00 PM (GMT -5)
I was told after cath removal NOT to allow the bladder to extend by holding back the urine like I would normally do before the surgery. The reason was not to put any additional pressure than necessary on the new connection between the bladder and urethra. As a result I would go to the bathroom every hour whether I felt like I needed to or not just to play it safe. Did that for several weeks...but I am lucky in that I didn't have the problems others report with blockage right after cath removal...Ouch...man I feel for you guys
Posted 12/17/2008 3:32 PM (GMT -5)

Once my catheter was removed, I had to get up 2-3 times to pee during the night. This gradually diminished to 0 now ( 4 months post surgery). It's possible that it takes time for the bladder to reshape itslef to be able to carry the full amount comfortably.

Another thing... The 2nd time my catheter was removed I made sure to drink a lot while I was still in the Dr's office and asked the nurse to check that I was able to fully empty my bladder. They have a scanner (ultrasound?) to be able to check this. I didn't want to take a risk of going through all the pain of not being able to empty again.

Posted 12/17/2008 3:38 PM (GMT -5)
LV-TX: Les, I didn't state as I should have that the stretching I did was 8 to 10 months down the road, not immediately after removal.  Sorry, I went braindead for a moment there.

Posted 12/17/2008 4:07 PM (GMT -5)
The nurse that assisted dr. that put in the new cat. yesterday, said on the average, a full bladder holds between 400 and 500 ml of liquid. When the cath. was inserted, it quickly withdraw 550 ml, so they said it was obvious why I was in level 10 pain all that time. I have never had the cystogram scan done as described here, they did a simple scan just to see the contents of the bladder before the dr. inserted the new cath., so this is news to me about that other procedure.

My doctor's office called a little while ago, they are suppose to let me know tommorow when they want me to come in to have this new cat removed, I will assume this coming Monday, when my dr. is in my local office area. I can handle that delay, though not happy after all these weeks, least not in pain. I want some assurance though, from the dr., before they remove this cat., that I won't go home and end up in emgency situation in severe pain like what just happened. Don't think I could handle that 2x in a weeks period or so, a little gun shy.

David in SC
Posted 12/17/2008 4:25 PM (GMT -5)

To be on the safe side, have them show you how to self - cath. I went thru a similar problem as you, but not as long. The Self- cath gave me the confidence not to have to worry about going to emergency in the middle of the night.

It is very simple. The hardest part is having the nurse watch you while she teaches you how to do it.

(But I think we've all lost our modesty with this disease)

Ed

Posted 12/17/2008 4:31 PM (GMT -5)
Ed,

Your last comment made me laugh out loud, for real. THrough this process, i have lost all modesty, having dropped my drawers so many times, and had strange men/women look and touch me in private parts. The nurse that was assisting the dr. putting in the new cat yesterday said to my wife "good thing he's small down there there's less to push through" * blushing red" geez, guess my days of being a stud muffin are long gone, lol. At this point, I'm just happy to be alive.

David
Posted 12/17/2008 8:45 PM (GMT -5)
Hey Ed, that's exactly what I want to do--self cath if necessary! Then I can catch it when the pain level is only 4 or 5, and not have it get up to ten. I will definitely ask for it.

Regarding the modesty--the nurse who took out my catheter was a hilarious older Chinese woman. She told me to take off everything below the waist. "Don't mind me" she said. So then I was lying on the table, and she said "say a prayer for your little friend". I thought to myself, yes, he's been through a lot. Then she said "and get ready to say goodbye to him". What? Then I realized she was referring to the bag.

She had me take a deep breath, then expel it hard, and right then she pulled out the catheter. "It's a boy!" she exclaimed.

DJ
Posted 12/17/2008 9:07 PM (GMT -5)
I have one big warning for you guys that have a little problem with catheter constrictions...especially if you have had radiation....If you have a constriction, and you have to rush to the hospital, and there is some person (?) who is not familiar with prostate cancer side effects....like if you have had salvage surgery after radiation, or have a sling or an AUS.....If that person is not knowledgeable, they can do damage....Such as what happened to Pete, He rushed to the hospital ER with a constriction and lots of pain (.this after salvage surgery after the radiation and seeds failed.)...the assistant on duty took out the cath and recatherized him and caused a fistula....(a connection between the urethra and rectum..) This caused another operation, and a catheter in for ONE YEAR......Be sure to ask for the UROLOGIST on duty...not just a regular person that does these with anybody... Di......
Posted 12/17/2008 10:01 PM (GMT -5)

To join in with those who thought the cath would stay out.  I waited the week or so and had no problems outisde of taking the bag everywhere I went.  When the time came, I got my exray and the evil cath was pulled out.  about mid day after removal I was starting to bloat.  I could urinate a little.  I was out during the wee hours off the night dancing around trying to shake out pee.

Went to the doctors the day and they showed me how to self cath.  That lasted two more days until I was back at Dr to be re-catheded.  My hopes high for a good weekend crashed and burned when the new cath did not work correctly,  about 1 AM that evening I was in the ER getting a cath installed.

It was all an education.  The good news today I pee just like I want to.  Not as good as some but not blocked,

Posted 12/18/2008 9:30 AM (GMT -5)
SebringR,

Thanks for your note. Can you say a bit more about the self cathing, why it didn't work out after two days?

Glad to hear you're doing well today.

DJ
Posted 12/18/2008 10:28 AM (GMT -5)
Thanks kw and ralph,

Puts a new definition on the word pain, that's for sure, as it keeps building and building with no relief. Hope not to go through that again anytime soon.

My dr. is suppose to call today and tell me when they want me in to take this thing out.

David
Posted 12/25/2008 10:50 PM (GMT -5)
I can feel for you.  After the first week, I thouhgt the cath was gone for good.  How little did I ever expect that it would be back on two days letter.  I was on and off again for several weeks.  I am very glad I am Cath free now.  Dont let the little setbacks slow you down, the reward is just around the corner

Posted 12/26/2008 8:42 AM (GMT -5)
Sebring, Today means I have had a cath. in now for 41 out of the last 42 days. The past two days, Christmas eve and Christmas day, have suffered with moderate bladder spasms, some severe, that hit about every 60-90 minutes. I have the ditropan that would stop them, but my dr. doesnt want me back on it this close to hopefully taking out cath. #2 next Monday morning. I just have to work through this for 3 more days, and perhaps I will get some relief, and only pray, that I don't end up with a cath. #3 in my future.

David
Posted 12/26/2008 6:30 PM (GMT -5)
David,

Hope you're doing better today. By Monday you'll have had over 40 days for your insides to heal, so that must be worth something.
Posted 12/26/2008 7:04 PM (GMT -5)
DJ, when it rains, it pours, just came out of ER for 2 hours with my wife and mother, and younger brother and his wife. It seems my 81 year old mother may have had a light stroke today. She lives alone about 7 miles from here. It was a miracle she reached me by phone, she sounded all slurred, speech all messed up. My wife made it there in about 10 minutes, I was soon on my way. So I turned around and led them to the hospital that is like 2 mins. from my house. As of 7 PM, still don't know whats going on, I was in so much spasm pain, that I had to go home, change cath bags to the big one and take some advil. I am waiting for a phone update on my mother's situation. Yes, I have had 6 full weeks to heal inside, even with the dr's difficult surgical problems, so I am hoping and praying this time will be the charm. I am ready to move forward in my recovery to the next stage instead of being in a holding pattern. Hope you are still doing well yourself.

David
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