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Pad Diary II

Trew
Posts: 891
Joined: Jan 2010

Guards, the Pad Dairy thread is getting too heavy for this server- it takes forever to post on it any more. I am now starting the 2nd volume.

I read your last post. You and I have so much in common. I hadn't gotten a stint yet- and that hasn't been discussed with me the Ileal Conduit bag has been discussed with me. I have actually come to the place I find it preferrable to leaking all the time.

We are running on the same schedule almost. I have been scoped more times than I can keep straight this summer. And right now, the point where the cath is about to enter the bladder is hurting me more and more every day. I hum, breath heavy, sing songs, etc, while I am trying to get past that one spot of resistence- and it has only been 29 days since my OR procedure at U of MI to open it up. I see another OR visit coming up in Nov when I see the doc again- if I can hold up to then.

Guards- I wish you the very best in all this.

All this from a little think like prostate cancer- bah humbug!!

Trew
Posts: 891
Joined: Jan 2010

If you are wondering about what an ileal conduit is, here is a simple lik I found that expalins it in very simple terms:

http://www.youtube.com/watch?v=cTes2_V4-n0

I have come to the place where i think this would be better than leaking.

I am still hoping the AUS solution will work out.

Quality of life issues are not addressed early enough in the treatment of PC. When the gleason is over a certain grade complications can be more generally expected than the average uro lets on. those guys on these boards who are actively prusuing quality of life are greatly respected by me. I would have given much more consideration to that route IF I had known about the complicaitons I would get into. But that is the crux of treatment- no one really knows.

If you see PC walking down the street- kick 'im for me. I will certainly do the favor for you when I meet up with him.

hightide
Posts: 26
Joined: Jul 2010

Hey Trew, I have been off the board for awhile, please tell me things are going well with the cath's. I am still pulling for you to get the AUS !! I had to get another computer so I could get back in touch. Regards, hightide

Trew
Posts: 891
Joined: Jan 2010

I wish those caths had a monitor in them so you could see inside. I do know that resistence is gradually increasing and I am getting concerned. I do not return to the U of MI until Nov. 1. then I get scoped again and then I will find out what comes next.
Dum-dee-dum-dum...

Yes, a little sound effects to highlight the drama of all this.

hightide
Posts: 26
Joined: Jul 2010

Thanks for the reply, do not like that the resistance is increasing. Was it ever discussed to have an indwelling catheter to stay in place and let the healing take place around the catheter ? I don't know if that is a possibility or not . Anyway, hope you get good news Nov. 1.

Trew
Posts: 891
Joined: Jan 2010

Hightide- ah feedback! I have not heard of an indwelling cath before, but when I get to UofM I'll ask about it. I'm open to just about anything anymore.

The good nes is I am still getting 2xs a day. Resistence is gradually increasing but its not so developed that it is keeping me out. It just takes longer and longer to get in.

And the pain spot! what a contest of wills this is becoming!!

guards
Posts: 72
Joined: Aug 2010

Trew ,the stent or stint not sure of the spelling is to replace the catheter and permently open the spincter muscle, its a wire frame kinda that opens up and then the tissue grows into it holding it in place and then you are incontinent forever and the AUS better work cause there is no going back. I like you cannot imagine having to stay like this forever as I have been TOTALLY incontinant for 9 months now. I use at least 12 pads a day. The indwelling catheter is the foley, you've had in before. They stretched my spincther leaving a foley in for 1 week each after the problem doing the scope first a 16,18,20,22 for 1 week at a time. When you get to a 20/22 they are a bit uncomfortable! but not unbearable. Then let it heal for a week before surgery to insert the stent. I've had the stent for a couple of weeks now and I'm getting used to it. I just hope it doesn't move as that or infection are the only things the doctor told me could go wrong at this stage. I like this doctor a lot more than my first one. I go back and see him next week just for a how ya feeling visit. I think those that haven't been in our shoes can't imagine the discomfort and humility we go through daily! I know the problems your having with catheters. Are you using a straight cath or one with the funny tip? I found that rochester medical 16fr #63316 a straight clear(think its silacon?}worked best for me. Has a bullet like tip with some holes in it. none are great thats for sure. Hope things improve for you my friend.

Trew
Posts: 891
Joined: Jan 2010

I'm using an 18 fr, clear with the blue guide line down the length, with a hard tip with a slip bend upward at the business end of it.

guards, how much blood did you get from your cath procedures? I get some blood in the urine often after the cath is done. There is an "ouch!" point that brings the whle cath procedure to a stop for a minute or two, but with very slow gradual pressure I am finally able to slip past that point and into the bladder. But I can sense the resistence is gradually increasing. Did you get that same kind of resistence and if so, did if clear up or get worse on you?

I can hardly wait for this part of my life to be over. 2Xs a day is getting way past the routine for me.

guards
Posts: 72
Joined: Aug 2010

Trew,mine was straight, no bend at all they just seemed to work better with out that little bend. I used a LOT of the lub and kind of spiraled the cath in. Yes I found that pressure place where I had to push a bit harder. At this time I was going into complete urine shutdown and 100 percent retention so I was cathing 2-5 times a day to relieve the pressure. Yes I had bleeding regulary probably 70 percent of the time as I withdrew the cath or when I passed the urine. What happened to me next was I quit shutting down and went totally incontinent, no idea why and my Doc didn't either just gave me a marine salute and said for about the 3rd time in a year "guess we have to wait and see what happens" AGAIN and did not have me continue cath's. After about 6 months my GP who has been my Doc for about 18 years told me it was time to see a different Doc and sent me to the one I am seeing now. I had not had to cath for over 9 months when he tried to go in with a scope--- no anesthesia --- and it would not go ---period. Now we got some pain coming on this one as it was in his office and nothing but the lidocane? to help. I knew he had to get the cath in because if I shut down again I was back in the hosp. So after about 40 minutes of trying the nurse got my attention about something and he literaly used a stiffened unit (think he stuck a knitting needle in the cath LOL) and hit it firmly with his palm --- got in and got my attention!!! He grabbed me for fear it would pop out so i would be still and not pull it out. Set the first foley catheter to stretch the spincter. Went in with the scope four weeks later and found scaring etc. from the radiation and the turp and we discussed my options. A week later he had me in surgery and inserted the stent. The first day I saw him he had commented the worst thing to do on someone with bracky is a turp. Hope spelling don't count I'm a terrible typist and a worse speller.

guards
Posts: 72
Joined: Aug 2010

Well now that I have researched and seen the ileal conduit on the videos I sure am praying that I can get an AUS. That seems like pretty major stuff for life but like you said It may be better than the leak and at least allow some form of normal life. I have a nephew in law ? that has had one for years and I never even knew it till recently. Very active young man.

Trew
Posts: 891
Joined: Jan 2010

I am praying for the same end result- a good old fashioned AUS like all the other guys on the block have!!

I want to say a word about my cath. Mine is actually tipped with a sand burr, and has barbed wire and broken glass imbedded up and down the length of the cath to distract from the sand burr. But fortunately, it only hurts while I"m inside. I keep telling myself, my wife had 3 babies about a 1000xs bigger than this cath-ITS GOING IN!! And then I get my new AUS to play with. Life is so simple at times. My I get the AUS for Xmas- that would be nice. when people start showing their gifts around......

Well, I've written enough. Reader, you can finish this story anyway you want.

Good nite. PS. I bet my dreams, guards dreams, are a bit different than the dreams the rest of you have. LOL I have my Life is Good T-shirt on. I always wear it after the night cath and sleep in it.

Trew
Posts: 891
Joined: Jan 2010

Rereading my post above I may have exaggerated the sand burr, barbed wire and glass just a bit. I don't want anyone to misunderatand my running discriptions.....

Also, I had a good talk with the U of MI accounts depart about my bill with them. Very nice department- set up a payment plan and I was told not to worry about future treatments. So life, as I know it, goes on.

I filed the sand burr down this morning and the cath procedure went pretty well. I tell you, those who have never tired this just don't know what they are missing. But without a nice seciton of scar tissue you just wouldn't get the same impact, anyway, so yo might as well just forget it. for all you guys who had your prostates out, and are back to full urinary control and sex- you just don't know what you have missed out on. Better luck next time around.

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

Trew, I have followed your ordeal and my heart truly goes out to you. You are a man of endurance. I can't say I know how you feel because I have not been there, but I do have a dear friend (female) who has an ileal ostomy. She suffered for many years with a bladder disease called interstitial cystitis. Finally she had the bladder removed and now wears the bag. I must tell you she is happy to not have the pain she had before. It has been over 20 years now and she has developed some other problems. But this has given her a much better life. I am looking forward to hearing from you that the doctors have found a way for you to live without this pain of self-cath. I know this is a guy thing but pain is pain. And I just wanted to let you know she has never been sorry she had this done.

Trew
Posts: 891
Joined: Jan 2010

HillBilly, just the kind of info I am interested in. Thanks for your interest. And Guards- you are a big help, too. I certainly have no idea how this is all going to turn out, but I am not surprised by any of it. I need to find out if one can be out backpacking for 8- 10 days straight with an ileal conduit in. If so, I will start relaxing a bit. I am always hopeing for the best outcome- I have all along the way. I'm sure I'll start getting a few breaks soon. I do not want to be the Detorit Lions of prostate cancer. Try thinking of that one for awhile! LOL!

HillBillyNana's picture
HillBillyNana
Posts: 106
Joined: Jun 2009

I thought about that last comment for about 30 seconds and then asked my husband "do you know who the Detroit Lions are". A football team!! So that is all the thinking I am going to do about that. But I do want to tell you that my friend who had her bladder removed has a very active life. It has been over 20 years and she has had some other problems. A couple of stints in her heart a few years ago. Before that she was walking 2 miles or more a day. She is still quite active. So I am thinking YES, you could go backpacking for 8 - 10 days. Of course there are certain supplies you would have to pack along with you!! Nobody would ever guess she has had this thing for 20 years unless she tells them.

Trew
Posts: 891
Joined: Jan 2010

Yes, they are a football team of sorts. sunday's loss at Green Bay was their 24th road loss in a row. And they don't do much better at home. No matter what the Lions are to do to win, they come up 1 score short, usually, in the end. With the Lions it sometimes even looks hopeful in th emiddle of the game, but in the end, they lose. they alwats lose.

So now you know.

marc1957
Posts: 79
Joined: Oct 2009

Trew

WHat do you call a Detroit Lion with a superbowl ring ?

Yep, A Thief ! :-)

Hang in there bud, you are an inspiration to all of us Michiganders !

-marc

Trew
Posts: 891
Joined: Jan 2010

Marc- that was funny- and one I never heard before. However, i just asked my wife the question and she responded without hesitation: "A thief." I asked her if she had heard that line before and she said, "No, but how else could a Lion's player get one?" And sh eis hardly a sports fans at all.

Like I told someone who is a Vikings' fan, Lions' fans are never disappointed- but from time to time they are mildly surprised. We have never been surprised by a road game for years now.

Now, why did I bring up the Detroit Lions for anyway, and what does it have to do with my problems?

guards
Posts: 72
Joined: Aug 2010

Wanna trade your Lions For my Cubbies!!!!!

Don't think I ever told you I used to live in Fenton and then moved to Saline before we moved back here to the Chicago area.

I'm having a great day only 9 pads so far, the bad part is I sometimes get my underwear damp and they have to go in the laundry then the wife makes me do the laundry! Glad I bought 20 pair. LOL

Trew
Posts: 891
Joined: Jan 2010

guards, you and I could support the industry.

I purchsed a postal scale so I could keep track of pad weight/oz. Here is my daily total from the real pad diary as of 9:45 p.m. ET:

8:10a.m. -- 2.1 oz
10:30 -- 8.1 oz- vigorous 3-4 mile walk
11:50 -- 2.7
1:35p.m. -- 2.7 oz
2:55 -- 2.0 oz
4:17 -- 1.7
6:30 -- 2.7
9:45 -- 3.5 oz
total- 26.7oz

Note- so far today, also 9 pads. Very typical day. I often have one really wet pad like the one above when Iam out exercising, but sometimes it just happens when I am out. Just not the kind of conditon that lends itself to a storng social self-confidence.

Some days I am almost overwhelmed. Must be something like how the Detorit Lions feel every Sunday night. I would trade places with any one of them.

Trew
Posts: 891
Joined: Jan 2010

Wed nite.

Cath done at 8: 30 pm.

Passed the biggest clot to date at 10: 15. I am hoping that clot would have been scar tissue but it is now in the toilet. Does it work that way? Quite a bit of resistence tonight but I did get in.

Wife says my bladder doens't hold any urine any more so it isprobably shrinking in size. Well, everything else in that area is, so why not the bladder, too? LOL!

I know I get into the bladder every time by the flow in the tube, but there is never enough to push the urine out the end. Just a few cc's at the most. Always.

griff 1
Posts: 114
Joined: Jun 2010

just reading your posts and i wish the best of luck you sound like a great guy that has been through too much crap. your attitude is good and i hope all goes well for you. griff

Trew
Posts: 891
Joined: Jan 2010

Griff, thanks for the support. some days I really sink low, then come back up.

today I had a creative thought. I think I will ask my Dr at U of MI if there is any creative ideas she would like to try out on someone- I would be a willing candidate.

I think once I am into this I might as well keep digging, but I must say, it is getting harder to toss the dirt out of the hole.

guards
Posts: 72
Joined: Aug 2010

Well trew it's monday and another weekend has come and gone. Had a really wet night last PM. Had a large coffe from starbucks and thats always a big mistake but sometimes ya have to treat yourself and I really miss my coffee! In my good ol days I would stop at starbucks after my morning ride and sit on the patio with a large cup and greet all the strangers as well as old friends. Go back to the doc's wednesday for an after surgery consult, guess he just wants to make sure I'm alive. It's amazing how your imagination runs as you anticipate this stuff. I have been thinking I feel the damn stent moving as I do anthing that puts even a minor strain on me, as that is the only danger I guess, so you just worry about it. I supose if this goes well I'll start to worry that every thing is going wrong with the AUS. Things just went so far south you just doubt that they will ever get correct again. I even went out and wiped down my bike this week end to get it ready for spring, so I guess I have some optimism left LOL.Hope ya had a good week.

Trew
Posts: 891
Joined: Jan 2010

I wish there was a little consistency with incntinency.

total Pad weight/oz last week thru today:
Wed- 17.4oz
Thurs- 21.9 oz
Fri- 19.1 oz
Sat 22.3
Sun- 13.1 oz (only 6 pads all day!!-cured!!)
Mon- as of right now at 1:45 I'm only on my 3rd pad. First two pads of the day weighed 1.1 and 3.5 oz. I was through a similar patter in early Sept but then lots of very wet days followed. I get my hopes up on good days and think, maybe this will correct itself. Well, maybe this will correect itself- why not? I can dry over all this tomorrow.

guards
Posts: 72
Joined: Aug 2010

Well trew now I have the long wait. Won't see the doctor for 3 months and then another cysyo to see if I'm ready for the 800. Seems everythings normal and now I just have to wait for the stent to grow in and seat itself permantly. Doc was very positive, sure helps when he has a good attitude. Was thinking about timing and really it works out pretty well. I have the holidays with my family before any decisions or operations are done and If I get to have the 800 it will be operational by golf season and biking time not bad. At least I have some hope at the end of the tunnel for a while. Hope your doing ok also.

Trew
Posts: 891
Joined: Jan 2010

Guards, that is good news. Why the 3 month wait before you can get the AUS installed?

I am just settling in trying to endure right now and get past all this waiting. The cath procedure continues 2x a day. there is resistence, I just push on through and if I bleed, I bleed. I somehow think this is the key to getting on to the next step. So I endure.

A good associate of mine died from cancer on Monday. He was a good man but can came in through his liver and invaded everything. He was a good Christian man and that gives us who knew him comfort, but he is still missed. Just a grim reminder what we here have faced.

a better day will come. Its just not here yet.

I will endure. The jaw is set, I will get through this- I see the doc in U Of MI Nov. 1.

That is what is happening with me.

hightide
Posts: 26
Joined: Jul 2010

Hey, Trew & Guards, Just had to jump in and say keep the jaw set and we will endure. That three month wait will go by in a hurry, and for Trew, Nov. 1 will be here before you know it. I am in Boston right now on the first vacation my wife and I have taken after all this got started in 2007. As you know I just got my AUS back in Aug. and now that I am DRY, I want to go and see and do everything, and a year ago I never thought I would want to do anything again. Hang in there guys !!!!! hightide

Trew
Posts: 891
Joined: Jan 2010

Hightide, that was thoughtful of you to think of Guards and me while you are out vacationing. And you are right, at least for me, it is just set the jaw and bear with this until the end.

It is just difficult enduring right now.

the wait goes on.

guards
Posts: 72
Joined: Aug 2010

Another couple of weeks are gone! Situation normal all wet lol. Just had my quarterly from my GP and looks ok , PSA still 0. zip , my h1ac is getting lower as I bring my diabeties back under control. and the rest was great so guess a lttle optmisum helps. Hope every thing is fine with you. Don't know why I'm typing in red another mystery in life lol. drop you a line in a couple,
Jim

Trew
Posts: 891
Joined: Jan 2010

guards, you may have typed in red- but it all came out black.
I had my PSA blood draw on MOnday- no word of results yet.
I see the uro in U of MI on this coming Monday- Nov. 1. I am scheduled for another scoping.

I am just settling in now to endure until this period of my life is over.
Confession time: I am happy to hear of other men who are dry in a month or so and everything is beginning to work again, but honestly, such testimonials depress me. I think, "Why couldn't that have happened to me?" I don't know if anyone else has had that reaction, but it is how I feel at times. Especially when I'm not paying attention and I wet through everything which happens once in awhile.

Cath time again. 2Xs a day, forever!

yes, there are still some good moments. This thingie hasn't totally gotten me yet. I will endure.

JR1949
Posts: 230
Joined: Jun 2009

I have not done a lot of posting last few weeks, but I am still thinking about you and you are in my prayers. This is November 1, so I hope everything went well for you today at U of MI.

Okay I read about some men who are are dry as soon as the cath is removed or a month or two later and I think "I wish that was me", but I realize that everybody is different, they had different surgey, different surgeon and their bodies heal differently. You also have to take into account that some men do not survive prostate cancer. I just take satisfaction in the fact that I AM A CANCER SURVIVOR even though I still have incontinence and ED. I trust in God to get me through this chapter in my life.

Just keep your sense of humor and don't let this "thingie" get you. As I saw on a bumper sticker, WAG MORE, BARK LESS.

JR

Trew
Posts: 891
Joined: Jan 2010

The cath procedure is going well- keep it up with daily variations- 1x one day 2xs the next for the next two months.

Tissue is not well yet. "See you again Jan 3" and go from there.

Dr Latini did tell me tht radiaiton goes on killing cells after treatment- for another 5- 10 yrs. She is determined to do what is best not what is expedient. she is looking at maybe 6- 9 months before she will consider an AUS and the ileal conduit is still on the table. She does one about every other week.

That is all I can report. Of course I am looking for a quicker fix, but then I have a closet full of packages of Tena pads- just my luck to have surgery and not get to use those things. so life goes on.

JR, thanks for thinking about me.

I see the uro in Kalamazoo tomorrow and get the report from last week's psa check. No phone call this time- probably nothing significant. I am going to suggest he try the ED shot tomorrow. Not even a stretct of any kind since surgery in March 09. That worries me too.

Life goes on.

Oh, the family doc wants me to lose weight, stop eating as much, diet, exercise, so even food is against me now. Celery, anyone?

Trew
Posts: 891
Joined: Jan 2010

In to see the local uro yesterday. time to start addressing some very personal after effects of treatment and cancer.

Says the doc, "You have been through a lot. Realisticly, normal function will probably never return." He ruled out viagra in my case. The pump and implant are usually ineffective. I am going to try injections.

Life goes on.

this whole cancer thing really really is the pits.

BTW, my PSA is still zero.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Congrats are due to you on the zero!

Larry

Trew
Posts: 891
Joined: Jan 2010

Larry, thanks, and zero is something my wife is interested in hearing. But I have lost interest in my PSA number- to me zero and dry are now synonymous.

On that front, it seems the overall trend for me right now is gradually getting drier. I am weighing and recording every pad- I want to see.

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