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The Pad Diaries

Trew
Posts: 892
Joined: Jan 2010

Exciting topic, I'm sure. For me, I have started a daily pad diary noting time of change, activity, and saturation level. I have been at it now for a full 24 hrs.

Hey, you!! Stay out of my Diary!! as a totally different kind of meaning now.

I hope this will help in the evaluation process as I get more serious about getting a AUS installed.

I hate PC! I do, I do, I do!

Overall I am trying to stay very positive. :)

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

Good luck with that.. as for me, slow improvementafter surgery almost 3 weeks ago.. 1-2 pads a day.

griff 1
Posts: 114
Joined: Jun 2010

i am not lokking forward to the pads, do we start off with adult diapers or just pads. man that will be the hardest thing for me. see ya griff

Trew
Posts: 892
Joined: Jan 2010

Start with pads. And then see how conditions are. When the cath is pulled be sure you have some extra with you. Many uros think they are perfect surgeons and honestly seem surprised when you are leaking that first day. My cath was pulled by a nurse and then Dr. Masnhi- my uro back then, looks at me running like a facet, and says- do your kegels. I said, "I AM, I AM." Then he says to me, "You must not be doing them right." it was one of many insensitive things said to me along the way by that doctor or his PA. Now there is a sure sign you have the wrong doctor.

griff 1
Posts: 114
Joined: Jun 2010

not to bad today, i am on my 4th one so that is good. yesterday i thought i would be using 20 or more. anyway good luck. griff

hochbob
Posts: 10
Joined: Jun 2010

Fathersson,

We have two things in common....PC and the 5-string. Both get better with time. By now I hope you are pad and pain free. All the best.

Trew
Posts: 892
Joined: Jan 2010

Diary for 5/21/2010

I see I woke up with a pad on- exercised in it and then made 6 pad changes during the day.
Most of my activity was very lite and the pad was generally more than 50% saturated.

Typical day since the scoping and removal of scare tissue 2 weeks ago, close to that before I had that done.

So it is seen there are two roads after surgery, one is dry, and the other goes into the lowlands or swamp.

Everyone, enjoy the day the Lord has given.

(Note: I posted this because there are so many dry stories posted I did not want anyone feeling they were the only ones wet. Being wet can be so discouraging, so overwhelming. One of the potential side effects of any PC surgery is incontinence. That's just how it is for some of us.)

JR1949
Posts: 230
Joined: Jun 2009

Hi Trew,
I had my (cystoscopy, urethal dilation, transurethal neck contracture), in our terms scoping and removal of scar tissue last Friday 5/21. Of course because of the scar tissue removal by laser, I had the "pleasure" of a catheter until this morning. Well when the nurse removed the catheter, whoosh came a minor flood of urine. This took place around 9:30 am. It is now 3:50 pm and I have not had the urge to urinate, yet I have a drip going on constantly and cannot even force a good pee. Just called uro's office and they told me, "we usually tell our patients to drink 8 oz. glass every 2 hours". Gee thanks, did not tell me. So am hoping that things down there will return to normal sometime this evening or later. I have hope that my situation will be better soon. Before Friday doc confirmed that I was not emptying my bladder which would explain the drips in the pad/diaper. Uro told my wife after the procedure that it should makes things better, just not sure how much better.
Did you have any problems after removal of the catheter?

I'll let you know how it goes for me during the next few days. I hope my incontinence will be better or gone, whatever.

Trew
Posts: 892
Joined: Jan 2010

My doc didn't use the laser- he had another method perfected, I was told by another poster here, behind the Iron Curtain- I think his words were "in some Eastern European countyr."

And I have been dripping a LOT more since the procedure which was two weeks ago.

so it goes. I wonder what "they" will do to me next?

JR1949
Posts: 230
Joined: Jun 2009

So far today I have had to change pads on the average every 2 hours and sometimes the diaper too due to leakage on the sides. I even set the alarm so I would wake up last night and not leak on the bed. I am sleeping with a pee pad from my grandchildrens days sleeping here. Only good thing is that I am now able to pee sometimes when I go to bathroom. Before the scope and procedure I was averaging 3-4 pads per day and usually one diaper per day. My Uro suggested scoping and removal of any scar tissue because I was not emptying my bladder. Like you said what will "they" do to me next?

Of course doc told my wife after procedure that he thought this might help, did not know how much. Perhaps after the area of my uretha he lasered heals I will have some control of my bladder. Plan to call uro's office and ask what I should do, what I should expect.

Trew
Posts: 892
Joined: Jan 2010

JR, It is a very challenging condition to live with. I went down to Wall Mart and picked up 3 pads- something like 3 x 5 or something like that I always have under my sheet. Most nights I do not leak but once in awhile I'm happy to have had the protection.

When the hormone shots were in full bore the combination of the emotional side effects of the shot combined with the dribbling were almost too much for me at times. I confess- I broke down and cried many times when I was alone. I'm just in a state of surrender right now- resigned this is my fate- I picked the wrong doctor of something.

I see the uro in the morning for a pee volumne test but I don't think the stream is much better since the first roto router job he did on me.

You do have my sympathies, JR. This is no easy affliction to bear.

JR1949
Posts: 230
Joined: Jun 2009

Trew, yes agreed, this is a very challenging condition to live with and you have my sympathy too.
Have you asked your urologist about Physical Therapy? I just read in subject REHAB posting today that two guys had PT and it helped. Now they did this preop and postop.
I recently asked my uro about PT and the said it did not help. Well obviously it does. I intend to ask my uro again and/or ask for a second opinion.

Trew
Posts: 892
Joined: Jan 2010

I was in to see the uro this morning. The Urine flow looks fine. He took my diary away from me for his records. this is what he said:

We can try PT and bladder control therapy but it probably will not do much good.

That I am to do a self cath 1x a day for a month, the 3x a week for a month and then 1x a week for month to keep scar tissue from reforming. (Why does this have to be done to me?)

He has done over 200 AMS 800 surgeries and he showed me the device. so very nice.

After radiation he likes to wait at least 6 months before installing one to let tissue settle down. I am looking at having the AUS done the end of October, early November.

His observations from watching patients is that the more nerve bundles are spared, the less drip afterwards. That those important male nerves do more than just provide erections but no one really understands the relationship there yet between those nerves and bladder control. I lost all the nerves on one side.

At the time of the roto router procedure my uretha was a 7 and he opened it to a 21 in french units. He wants to keep it open- thus the self cath for awhile. The bladder looked good.

The greatest risk of tissue failure after installation is to those patients who have had radiation. That is me.

I know I am rather upset about the self cath procedure. In fact I just took a xanax to let things settle down for the day. I am upset that the need for the AUS is now finalized and in the works for this year- one of those good/bad things in life.

Notice that my uro agreed with yours about the effectiveness of PT. He will have me try it anyway. Maybe between now and the end of October a miracle will happen.

I see him again in 6 weeks.

I do hate PC.

JR, I know pretty much what you are going through. What a fellowship to share.

JR1949
Posts: 230
Joined: Jun 2009

We do have a fellowship to share.

Thanks for the information, a lot of great valuable stuff.

Here's my history:
PSA preop 22, PSA postop 0.008 (not even measurable :-)
radical prostatectomy March 1, 2009
cath approx 14 days following surgery
pads per day 5-8 first five months
pads per day 3-4 up to 5/21/10
scope & roto rooter May 21, 2010, left w/cath
cath out May 24, 2010
pads per day 10 5/24-25/10
pads per day 5 as of 5:30 pm 5/26/10 :-)

I think I hate catheters more than I hate incontinence.

Looking promising now maybe and I am now able to pee a strong stream for the first time since prior to my surgery. Uro told me to drink 8 oz. of water every 2 hours. WON'T drink anything after 7:00 pm.....almost had bad accident early am today. I plan to give this procedure some time before I do anything else. I need to do more kegels per day. It's hard for me to remember.

I am not going to have any slings or artificial sphincter at least for another six or more months. But I still want to get second opinion about physical therapy. Let me know how the PT works for you. Maybe a miracle will happen for you between now and end of October. You never know, miracles do happen. We just have to have faith and believe.

Trew
Posts: 892
Joined: Jan 2010

You are very hopeful- thank-you. I was not expecting the self cath stuff- just another emotional slam/dunk for me. I took the xanax and slept this afternoon 2- 3 hours. I"m more relaxed right now than before the xanax. Your pad count looks like its turning in the right direction- I do hope it continues.

And here is to No More Surprises!

for both of us.

JR1949
Posts: 230
Joined: Jun 2009

I was out of town yesterday for funeral of my wife's relatives.

Yes I agree, drink a toast to no more surprises. PC was one of most awful surprises I have experienced in my 61 years. Of course I beat it, PSA now 0.008, can't get much better than that.

When are you scheduled for the self cath? You will be in my thoughts.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

This self-cath stuff sounds familiar. It's the same road I traveled. Did the doctor give you advice as to what gel to use and caths to use? They gave shaped weird on the end. I ordered some off the Internet and was much more successful. The self-cath thing is no picnic, but it's do-able. The decision to get an AUS is agonizing, but the end of your incontinent hell is in sight.

Trew
Posts: 892
Joined: Jan 2010

The Uro's office is in a hospital complex and very close to the Continence Center. There I will receive personalized hands on instruction and a self cath kit. So I am not the only one that has had to do this? It all seems a little bit de-humanizing to me. Well, if others have done this and gotten past it- so can I.

Certainly nothing to look forward to, but I will be able to do it. "I think I can."

The doctor was so kind to me today. I was touched by his compassion.

I am so glad I changed doctor's. Looking back, what a difference in approach between the two offices and doctors.

BRONX52
Posts: 156
Joined: Apr 2010

HAVING A DOCTOR THAT TREATS YOU LIKE A HUMAN BEING RATHER THAN A STATISTIC MAKES A WORLD OF DIFFERENCE. GOOD LUCK TREW AND I HOPE THINGS GET BETTER FOR YOU--DAN

Trew
Posts: 892
Joined: Jan 2010

Dan, thanks. And compassion may not make a doctor more skillful at his trade, but he does make me feel more comfortable about the doctor.

Xanax is powerful stuff. That helps, too.

JR1949
Posts: 230
Joined: Jun 2009

I agree, compassion goes a long way in your relation with a doctor. I've been fortunate that my uro cares. He even asked my wife how she was doing after the recurrent metatastic melonoma cancer. I had told him in June 09 when she was diagnosed and he told her he would pray for her.

To update about my wife, she was diagnosed June 09 after 18 years, had four rounds of IL2 chemotherapy which consist of as many as 14 treatments, every 8 hours. She underwent the treatments starting in August and completed day before Thanksgiving. PET and CT scans March 5, results were all 3 tumors gone, in remission. Praise God! She went back to work December 14 and you never know she had the cancer by looking at her. Her energy level is back up. See my story by clicking on the blue box with JR1949.

My wife and I have truly been blessed to have found out about our cancers early enough to be cured. To God be the glory.

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Maybe this will make you feel better. I've told people, if you're going to have surgery at Johns Hopkins, you'd better be a "real man". Immediately after my dilation procedure (for scar tissue) -- the procedure where I was awake and under no medication (other than Lidacane which they squirted up my pee pee) -- they took me into an examination room where I was given instructions on how to self-cath. To make sure I had it down, I had to perform the procedure in front of them. Remember, I had just had an ungodly painful procedure 5 minutes beforehand. I managed to do it once. And then they said, "We'd like to see you do it again just to make sure." I told them "No way" - hell, I was about ready to pass out. Then, my wife drive me 450 miles back home.

Trew
Posts: 892
Joined: Jan 2010

That is one painful memory! At least my doc is giving me 4 weeks between procedures. I guess I now have something to be thankful for today.

OUCH!!!

You talk about every man's nightmare- OUCH!

Trew
Posts: 892
Joined: Jan 2010

Today is the day I begin the self, er, well, see above. I can hardly wait. Training is at 2 this afternoon.

And after reading the new post about being dry, I could almost cry. Sounds like the stuff 60s rock n roll songs are made of.

Well, I will count this as day 1, that leaves only 29 left for this month.

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Trew,
Perhaps you could start a new career writing country songs. This sounds like a real painful song and dance routine that you are starting down! Number 1 country song out of Nashville, Tn. The Pad Diaries. I remember back in 1973 the first trip down from Indiana to Tennessee the big hit on the radio was Dead Skunk in the middle of the road!

Larry

Trew
Posts: 892
Joined: Jan 2010

Dead skunk song- now there was a song!!

I'll give song writing a try- only the lyrics though- I have no musical ability other than playing Cds, etc.

I do remember a song titled, "Poor Poor Pitiful Me!" I do feel that way at times. Like I will be feeling around 2:10 this afternoon. :(

Trew
Posts: 892
Joined: Jan 2010

Skid, when you did the self cath procedure, did you have any difficulty doing it?

I can get up to the "door" but since the visit Wed and one time Friday evening, I just can't get through the "door." I tried moving the time to early morning after a nice hot bath, still no success. Just wondering if you had similar problems. I really don't like the though of having to go back to the continence center and getting another evaluation.

Seems like there is a lot of pressure, too. Just not comfortable at all.

And remember: today is National Cancer Survivors Day

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I'm not sure what you mean by "the door". When I first did it, I could hardly make myself walk through the bathroom door. That said, a few questions. What size is the catheter and what does the end look like? The ones they gave me were reusable, 16 French (in diameter), and looked like it had a BB-sized ball or bubble on the end. I ordered some disposable ones off the Internet -- 14 French (but if I had to order them again I might get 12 French) and they were tapered on the end. The narrower diameter and tapered end made for easier insertion. Make sure you goop on the lube, at least 6 to 8 inches worth. I used over-the-counter SurgiLube. Put the catheter in and apply slight pressure. It's uncomfortable, but it will slide in. It will then stop (the other "door"). As I remember, this is a muscle or tissue of some sort that worked with your prostate to keep you from peeing yourself. The prostate is gone, but the "muscle" remains. Just maintain constant pressure or perhaps a bit more. I found it helped at that point to push -- like you were trying hard to pee. The catheter should then slide past this "obstruction" about an inch or two more. You'll know you struck gold when urine runs out of the other end of the catheter. After there's no more urine (a few seconds), gently slide the catheter out. Throw the catheter on the floor, do your end zone dance, and taunt it by yelling "Who's your daddy?"

Trew
Posts: 892
Joined: Jan 2010

I'm using the 16 french but can't geet it past the sphincter muscles. Just behind the sphincters is the bladder- not much after that. the inch or two that used to run thrugh the prostate was removed and I understand the bladder is pulled down and attached to what is left of the urethra. But I just ca't get past that one point. It is an amazing thing, that sphincter of mine. It can't keep anything from running out, but won't let anything from outside come in.

I contacted the continency center that is overseeing all this but my 'supervisor" is away on vacation this week. The other one in charge of this interesting process is suppose to call me back with new instructions.

So I keep trying to do the best I can. Kocking on that inner door should be worth something? Maybe?

may I do hate this whole thingie!

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

I've used up a life time of dirty words dealing with prostate-related stuff. Yes, that surviving sphincter is quite a little creature. It does seem to have a one-way door. I do remember that every time I encountered it, I had to hold the catheter in place with a constant pressure for maybe 5 seconds before it gave out.

Trew
Posts: 892
Joined: Jan 2010

If some of the guys who only had their prostate out, were dry in a few weeks, and have sexual function ever feel cheated when they see all the extra stuff/treatment some of us get?

I mean only a select few make it to the self cath stage....

I am so sorry for the rest of you who miss all this. :)

Trew
Posts: 892
Joined: Jan 2010

Mine isn't opening for any kind of coaxing. Stupid indeed!

this is some kind of internal self abuse I can't put a name on yet.

Oh well, tomorrow is another day.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

It's amazing the attitude you have for the issues you've been dealt...just like Lion1...you both have had a rough go at it and still keep your humor and wits...it's truely inspirational!! I pray you guys find resolution and peace with the beast at some point in the near future!

Randy In Indy

JR1949
Posts: 230
Joined: Jun 2009

I agree, Trew, you are dealing with all the issues you've been dealt and still keeping a sense of humor, this is good! I am not sure I could do as well. Bravo to you my friend.

I am now able to pee a strong stream more than I have in over a year. That's the good news, now the so-so news, I am still using an average of 3-5 pads per day. It could be what my wife said, now that I am emptying my bladder the "incontinence" leaks are more too.
I am resolved to try to do more kegels every day. I am taking Vesicare on advice of my uro thinking it might help...I am not sure yet. Have you heard of anyone with PC and using something like Vesicare after surgery to control incontinence?

I will see my uro next Tuesday for followup visit after scope and roto rooter procedure . I plan to discuss my options then.

Hope your cath problems get better. I will keep you in my thoughts and prayers.

JR

Trew
Posts: 892
Joined: Jan 2010

I have not heard of anyone using Vesicare after surgery. I know if can cause the bladder to shut down in some cases- if you find it hard to pee- quit using it. I had a similar reaction on flomax- which the old PA told me couldn't happen.

I have added urine output to my diary. average output is much less than 100cc. usually around 25cc. Pad is usually 40- 80% wet. This whole thing has me a little perplexed.

Seems like it was easier to win at Monoply than figure out this stage I am in.

and some of you guys are missing all this!!

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

It sounds like the doctor suspects "overactive bladder". My regular GP prescribed something (can't remember specifically what it was) for overactive bladder when I was dealing with incontinence, but it did no good. He/she may be testing this hypothesis before "Plan B". A urodynamics test may be next.

tpelle
Posts: 151
Joined: Aug 2003

JR: Four months after Radical Prostatectomy in 2003 and still leaking, my urologist prescribed IMIPRAMINE. It's an anti-depressant drug, but when used at 1/2 normal dosage he said, it would "calm the bladder and tone the sphincter." It reduced pad usage somewhat but caused side effects -- dry mouth and constipation. I used it for a couple of years then quit. tpelle

lion1
Posts: 240
Joined: May 2007

9 months after surgery my URO gave me Detrol LA--NO HELP----------------Then Vesicare----no Help---then my Doctor at Walter Reed gave me Ditropan---NO Help----That's why I am up to Botox Injections--1st Injection no help----2nd injection probably in Aug???

Go figure????

Lion1

Tpelle--what's new in the incontinence treatment world?

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

Before I started injections (it wasn't Botox, but some type of expandable stuff), my urologist told me (and I saw this on the Internet) that it would take as many as 5 injections to see any type of results. I had one injection and looked for ANY change. There was nothing. When I found out what the procedure cost (about $15,000 per injection), I couldn't justify running up a bill of up to $75,000 when the procedures had no "guarantee" of success, even thou I had decent insurance. I stopped after one injection, rejected the sling because most of the research and success had been with women, and got an AUS.

tpelle
Posts: 151
Joined: Aug 2003

lion1: Nothing new that I know of. I'm waiting to hear how Botox works for you. I hope it's eventually successful. If you decide to go the next step (AdVance) and it's successful, I'll have to follow. It seems like AdVance offers a balance of least torture and reasonable success. Good luck. We'll be watching for your reports. tpelle

griff 1
Posts: 114
Joined: Jun 2010

i go to get the cath out tommorrow and then to pads only i hope for me, i don,t like the idea od diapers. oh well what is is. griff

142
Posts: 169
Joined: Dec 2009

You can get the latest variety of Depends now in packs of 6 - if you are optimistic.

I used the pant, with a pad inside. Change the pad as needed dring the day. The pant gives you a backup if you flow instead of leak. I was 1 pant + 7/8 pads a day for the first couple of months. Down to 2-3 pads a day now (8 months out).

muttsrule
Posts: 52
Joined: Sep 2009

I so hope this is a double-entendre, and, after reading your subsequent posts, suspect it is. John in Seattle.

Trew
Posts: 892
Joined: Jan 2010

No peeking.....

8:am up and void 150cc (this was the 5th time up for the night- just stayed up after this)
8:20 am void 100 cc (during the day 25cc- 50cc is common)
8:20 nite pad was almost dry- fresh change after shower and another failed attempt at self cath.

3:30 void 50 cc. (first time since 8: 20)
3;30 lite activity/car pad change, near 100%

Sometime in the afternoon: phone call/consult with the Continency Center.
Essence of the call is "sounds like you still have a stricture and need to be seen by the uro again, and maybe rescoped...." She was going to make the appointment.

So maybe I get scoped twice- TWICE!!! My cup runnth over!

I tell you, I am getting every bang for my buck I can out of this.

There are no entries after 3:30.

So, did you peek at my diary? Hummm?

I wonder how Tom Sawyer would have handled all this?

Skid Row Tom's picture
Skid Row Tom
Posts: 118
Joined: Apr 2010

You said "scoped twice." Did you mean "scooped". Ha ha -- a little uro humor there. If you get dilated a second time, that means I have to go in and have it done again to keep up! On second thought, I think I'll just let you win.

Trew
Posts: 892
Joined: Jan 2010

This just feels like a good o' xanax day!

the last time we were in the doctor's my wife listened as I was told about the self cath procedure.

As we were walking out to the car she said to me, "I can't believe you luck!" No doubt a very high compliment. I amazed her again today. And another similar compliment.

However, I may yet avoid another 'scooping' and escape out the back door.

Trew
Posts: 892
Joined: Jan 2010

There are no entries after 3:30.

because it is only 4:11 and I am waiting to see what happens next.

patience, everyone.....

something else will happen, soon. I am becoming sure of it.

muttsrule
Posts: 52
Joined: Sep 2009

Trew, the sense of humor you and Skid Row Tom show is the strongest medicine in your cabinet. Still, I'll pray for your miseries to cease, even though that means less reading pleasure for me. John in Seattle, whose arsenal of smart remarks and wisecracks made 5 weeks on the catheter bearable.

Trew
Posts: 892
Joined: Jan 2010

tomorrow is another visit with the uro/surgeon. the self cath is impossible, no way I can get that 16 french in. I leak all the lime and urinate very little. I have my diary all ready to give him and then I will see what humorus thought comes to mind as the exam develops......

Pardon me, I do get excitable when I'm off Xanax.

Trew
Posts: 892
Joined: Jan 2010

Back to see Dr. Bour this morning. The stricture has grown back. Common with radiation patients. No problem, just lie back on the table and we'll widen the stricture for you! he does smile nicely. laughs at me weak jokes and no, he does not pay dividends to "share" holders- that would be me.

So, that is over with. Back to the self cath. I could end up having surgery if the stricture comes back. And then the AUS.

Anyone remember the song, "You know it don't come easy?"

So much for this day. I think the pipe is a bit swollen- this afternoon I can hardly get anything out.

JR1949
Posts: 230
Joined: Jun 2009

Hang in there my friend, I believe it will get better. You've got the positive attitude and you are keeping your sense of humor. You are in my thoughts and prayers.
Remember, Doctors treat, GOD HEALS

JR

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