Night time continence

13 years 6 months ago #34060 by Cynthia
Replied by Cynthia on topic Night time continence
Rick,

I am glad you posted again I have thought of you often since you posted. I can sonewaht understand as I went through a profound depression for about six months following my Radical Cystectomy. This is not something I shared with many people as everyone seemed to think I should be happy to be alive and I didn’t want to upset the people that had supported me though so much. For me it was a combination of things I had gone though nine months of radiation and chemotherapy trying to save my bladder in a clinical trial. I was a grueling treatment regime and it failed, I also felt a great deal of anger as I found research that told me I should never have been allowed into the clinical trial that I was told I was a perfect candidate for. I buried my father eighteen hours prior to going into surgery and then experienced two years of chronic pain that did not abate until another surgery where I lost a kidney due to scar tissue caused by the radiation from the clinical trial. Added to this we were dealing with two elders with Alzheimer’s their daily care my responsibility at a time I couldn’t even take care of myself. At that time there was nothing like this site for support so I felt I was very alone in all of this. Writing had always been my outlet and I couldn’t even do that. Every day was just another day without joy and hope.

Time and healing has been my friend also a good therapist and medication helped me through it. Then I got mad at something besides my own situation and the American Bladder Cancer Society came of that anger I decided no one would ever feel that alone again if I could help it, that good information would be easy to find so informed decisions could be made. Today finds me happier than I have ever been my relationship with my husband deeper and dearer than I ever imagined possible. I guess the point I am trying to make is that as black as that time was I found a dawn at the end of it with help and healing.

Another reason I have thought of you is that I ran across this article on Post Traumatic Stress Disorder. I don’t know if any of this applies to you but it would not be unprecedented at all. I would strongly urge you to reach out for professional help if you have not already done so you have been through a lot but by reaching out to us it tells me you have not given up you want to find that spark again.

www.cancer.net/patient/All+About+Cancer/Cancer.Net+Feature+Articles/After+Treatment+and+Survivorship/Post-Traumatic+Stress+Disorder+and+Cancer

Keep talking to us that is what we are here for.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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13 years 6 months ago #34055 by Hox
Replied by Hox on topic Night time continence
I want to thank you all for your comments and support. A lot of you have commented on my statement that I feel this surgery was the biggest mistake of my life. It has taken me some time to formulate a response.
Firstly, the following is not a poor me story it is just an overview of my background.
I, like a lot of others, have survived a tremendous amount of tragic events. Mine included 45 years of recurring, crippling, clinical depression that turned out to be a side effect of another previously undiagnosed disorder. Throughout all of this a spark of life always remained. My desire to spend time doing joyous things was always resurrected. I loved life, even the process of rebuilding my life time and time again. I found my true love just under 5 years ago and shortly afterwards my mental health and now am in many ways living my dream life.
Then came my surgery. The first one went terribly wrong...everything leaked and a second surgery followed 2 days later. Then toxic shock and 2 weeks of insanity and drifting between death and life. Then another 2 weeks before I experienced my first couple of hours of well being.
In the end, 5 1/2 weeks in hospital... 3 months before the catheter was removed... etc Somewhere in there the spark went out...somewhere in there my joy died...somewhere in there I lost a key component of who I was... I carry on my life as I did but with an underlying silent and mostly secret emptiness that cannot be accurately described. It is most like the feeling described by those I know who have lost children including mother's of lost friends and my ex wife who lost her only son during our marriage. I don't dance. Music fails to move me. My motorcycle sits rotting on its wheels. So, for me, I truly would rather have lived a shortened full, joyful and spirited life than the dreadfully long and empty one that I fear I and my family are now faced with. Yes, my body lived but it feels as if my spirit died. Hox

Rick

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13 years 6 months ago #33879 by mikeg
Replied by mikeg on topic Night time continence
My pelvic floor muscles were so stressed out that the PT thought that kegels would be counter productive. you need to be careful about that. He gave me some gross anal exercises to loosen the muscles for 2 weeks before i could start kegels. MY urologist had a cool bio-feedback sensor as well. Basicly, it showed you when you were tensing properly and which muscles were being effected.

Getting a neo-bladder is the risky route, and there are countless messages here of people going through the same decision process and their fears and worries. I choose it after much consideration because it gave me the best chance for a return to my normal life. you pay your money and take your chances. There were no guarantees offered. I adjusted to a diaper and went on with life. Not worth my effort to worry about it or what anyone thought. It's like having to take drugs every day for high blood pressure or watching your diet. I don't use any pads or anything now, but if I had to, and we all probably will someday, it sucks but I'll deal with it.

I do not feel that my manhood was in any way changed from my experience, and in fact I feel like a survivor, as if I had returned from a war and have the feeling that no one else around me knows what I had been through except a few that had had similar experiences with cancer. otoh, Christopher Hitchens discribes his bout with cancer in this months Vanity Fair. He doesn't see it as a battle, more like a sad endurance contest. Having sat in a chemo room with poison running into my veins, I know what he means.

Mike

Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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13 years 6 months ago - 13 years 6 months ago #33875 by Cynthia
Replied by Cynthia on topic Night time continence
Rick,

Patience is hard but time is the key to a lot of this. I know the two hour thing just exhausts you been there done that. What we did was purchase three cheap small alarm clocks and there are alarm clocks you can put under your pillow that will vibrate so you don't wake up your partner. I would take a nap during that time as often as I could. after a while I got so good that I would hardly wake up when I got up and would fall back very easily. It may never be perfect but it can be a lot better perhaps. I would post another post under mens issues about your sexual situation they will be very helpful if you ask.

If you are feeling very angry, depressed or other strong emotions I would think that is normal. I do not know hardly any of us that have missed out on that joy one way of another. I had to go and talk to someone for a while and did an antidepressant.

My hope for you is that with time yes that nasty word again things will improve and I will one day read you posting to someone else in your position, about how tough it was and how you made it though with a little help from your friends.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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13 years 6 months ago - 13 years 6 months ago #33869 by mmc
Replied by mmc on topic Night time continence
Rick,

The 2 hours is usually just for the initial stretching time. You should have received a schedule for this when you got the catheter out. Your night time waking usually aligns with your day time schedule. Two hours at the beginning and then progressively longer (both day and night) over time a few weeks to a few months to stretch the neobladder.

Here is some information you may find helpful: Webcafe: Continence with Neobladder

If you are really suffering from lack of sleep, you might try a condom catheter for a night. As long as you aren't hypercontinent (which you're not if your leaking a lot) it should be OK to do one night and sleep through the whole night. I know it can be frustrating waking up so often. I used to wake up every hour to hour and a half before getting my surgery because of prostate problems so I'm pretty glad that problem is over.

You may also want to consider the condom catheter for other nights but still wake up according to your schedule to empty the neobladder. This way you aren't all wet. Any night time leakage will just go in the catheter bag. It is WAY better (IMHO) than waking up all wet and dealing with the whole diaper thing.

I've heard bad things with the ones that have the wrap around strip if people put them on too tight so I just got the ones with wide band adhesive.

Here is a link for your consideration: Condom Catheter

Just disconnect the catheter bag from it when you wake up to go and reconnect it when you get back in bed. Hold the hose up when you disconnect so that any urine in the hose can drain into the bag and the bag has a valve so it doesn't come back out into the hose. What I do is buy the 18" extension hose for the catheter bag so I can just toss the bag on the floor and it gives some extra length for moving around in bed.

I know you asked only for opinions from people who achieved full night time continence and I am not one but I thought I would at least put this out for your consideration.

Sorry you feel having surgery was a mistake. As for me, I'm glad I did and I always try to encourage people to get to the best surgeons with the most experience in the diversion of their choice. That way fewer people have the kind of problems that you and others have had.

Good luck with getting this all under control.
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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13 years 6 months ago #33863 by LeeH
Replied by LeeH on topic Night time continence
Just a quick comment for now, but I believe getting up every two hrs only keeps you a little dryer. I believe you want to get that neo filled to stretch it even if it leaks on you. that will ultimately pay off in a longer dry spells. The trick is to stay dry or "contained" when it leaks.

I am just over 2 yrs out and am about 99.5 good during the day (very ultralight pads only) and keep getting dryer at night. I would estimate probably about 90 + at night with very rare exterior leakage. Progress is slow but I am still making progress.

Hang in there, Rick, you're still at the beginning of this process.

Don't understand what you mean by the surgery was a mistake? Do you mean you prefer to be dead or pick another diversion? On the other diversion, I'd rather have the extended recovery time of the neo to the other diversions, but that's just me. If you prefer to be dead, I'd rather play with my grandchildren and chase squirels with my dog - but that's me - to each his own.

I'll get you a little more detail on how this very long journey progressed with me a bit later - and yeah, it is taken a damn sight longer than I was lead to believe. And thats the beauty of this site - now you know, it ain't as easy as you thought!

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