neo-bladder issues

Hello fellow neo's.
Had the R/C at age 52 in March 09. The neo leaked post surgery and I got a horrible staph infection. I lost almost 40 lbs. and the neo would only void(a small amount) during a spasm. Had a procedure in June and was told I'd have to self-cath. I was told I'd have to do this for a couple months and that hopefully the neo-bladder would figure out how to work. It has not... I was mortified. Although it's something I've yet to get used to, I'm adjusting. I have yet to figure out how to comfortably void anywhere, other than at home. Mucous is a problem and sometimes clogs the cath. I'm am extremely compulsive about hygeine and fear cathing 'out and about.' I find this horribly limiting. I am incontinent at night. I miss going to pro football games, fearing the option to have to cath at a stadium, or any event that would require me to cath anywhere else but at home. So, I've really limited my 'social calendar.' My insurance is about to expire re: paying for cath's. I have been carefully washing and reusing them...I am grateful to be alive and thankful for every day. I wish that I'd not have to self-cath and have been thinking about the possibility of acupuncture. My doc has suggested pelvic floor muscle rehab, but there isn't any rehab for such, nearby. Any suggestions? Thanks in advance! Good luck to you all.
Marty

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By Tagmike
Posted October 13, 2009 at 5:18 pm
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I somehow let my neo get distended. I have been cathing since coming home from the hosp. I've been fortunate that my ins. is paying for caths. Try having your uro write a script for them. As you become more accustomed to cathing you may get over some of that uncomfortability doing it outside the home. Its been just over a year for me and I am actually getting some good daytime and nightime control. I stop drinking anything after about 7 pm and avoid anything but water and cranberry juice the rest of the day. If you go back through the posts you will see that this subject comes up (incontinence) frequently among the neo's. 6 months ago I thought I was going to have wear depends the rest of my life. Now I've got some hope that this will be under control eventually. Good Luck
Mike

By lsh
Posted October 13, 2009 at 5:43 pm
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Marty,

I haven't had RC surgery yet, but have done tons of research on it as it may be in my future. Usually docs who do prostate surgeries can recommend a physical therapist who specializes in pelvic floor dysfunction. I met a lady at MDA who has a neo. She said she went to one of the physical therapist after her surgery and it helped alot. If you can't find one, maybe you can look up online for exercises that strenghten the pelvic floor muscles. We actually have a member who is a physical therapist, but she just had surgery for some complications after her neo surgery. Anna would be a good person for you to ask about this...when she gets better.

Lynda

By martyofmass
Posted October 13, 2009 at 6:08 pm
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Thank you so much Lynda. Best of luck to you in your research. I wish that I had been able to do more prior to my surgery. Unfortunately, I was misdiagnosed by a PA and treated for a bladder infection. By the time I was diagnosed, the cancer was invasive and I just wanted the cancer out of me. I am presently searching for some rehab in my area. If I'm not able to find any, I'll go to the hospital that did my surgery(150 miles away, so rehab there would be too far) and get their program.
Thanks again,
Marty

By Keith1
Posted October 13, 2009 at 7:07 pm
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Hi Marty,
Are you drinking enough water? That will usually help to get the mucus out.
Also if you are a veteran, you can get the caths from them. I see you are from North Adams, I've been there many times.
Where did you have your surgery? Mine was done at the VA in White River Jct. Vt.
Dx with BC in '95 and got a neo in '03. I only had to cath a couple of times to see if the neo was emptying.
Keith

By Cheyenne
Posted October 13, 2009 at 7:10 pm
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I do not have a neo, so I am not in a good postioon to make recommendations. I can understand your concerns about having to self cath and about missing out on your social life, especially football games. I can only tell how I think I would deal with this myself, not knowing for sure exactly how I would do it. But I think I would do a couple of things, and it would not be fun for me either. But one would be to takes my caths when I go somewhere. And I would also wear whatever depends I needed. The there are external catheters which are like condoms and drain into a little pouch or optional leg bad (do a search for external catheters). I would also find, or try to, a good PT who knows how to deal with the muscles. Then I would go out and try real hard to feel normal again (because after all, you are normal). Relaxation therapy would help. I think once you can get out and feel better and work on the muscles, and relax, things will go better for you. Once you can relax a bit things will be easier. I sure would not give up on this. But keep in mind, going out to a game with depends or catheters is far better than going to a game with cancer in your bladder. Keep the faith, my best wishes and prayers to you. Please keep us informed.

By HighlandGuy
Posted October 13, 2009 at 9:56 pm
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Marty,

It is embarrassing, but we shouldn't let it get to us. We have had bladder cancer. It is no shame for me to tell anyone, frankly an honestly. I don't oftren sleep more than three hours at a stretch, but when I do, I am sure to fill my diaper, so what?

Shrtly after my surgery I had a severe metabolic acidosis leading to acute renal failure, when the bladder failed evidently to completely evacuate. It resulted in a near death experience. One of the long term solutions is to cath every nite before going to bed. That completely empties the bladder reducing incontenance, and avoiding further serious kidny consequences. It is not inconvenient and takes but a few minutes.

Incidentally, Medicare pays for fresh catheters daily..

We learn to live by the clock to drain out our bladders. It is also no shame to wear a male diaper if you know you may leak. At 85, come late afternoon, I tend to fall off to sleep before dinner. Sitting up and falling off to sleep is almost a sure invitation to leakage if my bladder isn't near empty. I take precautions to drain my bladder before watching the evening news.

When I am in affairs or meetings, I often slip in a male pad (I call them diagpers) to absorb any leakage I may experience. I sometimes fill three pads in a night, not frequently, but once every several months. So what?

For years I would forget until my bladder filled in the late afternoon, leading to rather intense pain and the need to drain it. When you have a full bladder, it really seems like forever, to complete drain it (besides, it cancer be pretty apinful), I take steps not to have a full bladder.

There was a time when I felt slightly embarrassed at how long it took to drain a relatively full bladder. Now I just announce it to whoever is around and that I would be gone for some times, telling them frankly, it was my surgery.

I don't have frequent experiences, they often run in streaks, but these are some of the ways I have adapted to them. Just don't let it embarrass you.

People understand. I have learned to be quite frank, even joke about my cancers and surgeries, their consequences. It is a unique experience and I have found people understand! I am different from them!

I am sure your incidences of incontenance and leakage will become less common as time goes on. At any case it is better than the alternative.

HighlandGuy

By martyofmass
Posted October 13, 2009 at 10:26 pm
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Hey Daveyo,
My surgeon is Dr. David Canes, a wonderful and caring and ongoing(ly) supportive gentleman. I had the surgery at the Lahey Clinic in Burlington, MA.

By martyofmass
Posted October 13, 2009 at 10:30 pm
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Thanks HighlandGuy,
Your words are kind and appreciated. I have gotten to become quite frank. I'm getting better and more acclimated every day. The words of encouragement I've received from you folks are very helpful.
Thank you!

By RickB
Posted October 14, 2009 at 6:28 am
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Marty,

Sorry you are having problems. My advice is not a substitute for professional advice, which may be needed.

I, too, leaked after surgery. I had no control. Zero. Today, I am dry during the day and have a 1% defect rate at night. So it is possible to move from one extreme to the other. I hope that will be true for you.

When the catheter was removed, the nurse asked me to urinate. I looked at her and asked how (it no longer being intuitive). "Well," she said, "some people push. And others relax." I tried relaxing. No luck. I tried pushing. No luck. I was probably empty at the time, but my point is that I had to figure out how to do it. Potty training at 48!

For me, I do both. Relax and push. The best explanation I have had is that it is like you are trying to pee very fast when you had a bladder. That is the goal. You may have to do this over a couple of sessions.

I have to do the Valsalva manuever when I urinate, holding my breath, relaxing, and pushing. Here is a link explaining that (there are others you can find via Google):

http://en.wikipedia.org/wiki/Valsalva_maneuver

The position you urinate in can make a difference. In some positions, your urethra may be a little kinked. Standing up may or may not work. Sitting down may or may not work. Some people press on their bellies.

I followed the timed voiding protocol from the University of Michigan after the catheter was removed. For the first week, I urinated every two hours around the clock. During the second week, every three hours. Third week, every three hours during the day, and four hours at night. Fourth week and beyond, every four hours. This is done to SLOWLY stretch your neobladder from its initial 100 ml capacity to 400 ml capacity. If not slowly stretched, there can be problems. Some people cannot go the full two hours (or three . . . or four). Here is a link you might find helpful:

http://blcwebcafe.org/content/view/676/222/lang,english/

Mucus becomes less of an issue over time as the neobladder stretches. Essentially, it gets more diluted as you go from 100 ml capacity to 400 ml.

I hope this will either help you directly or lead to questions that will. Best of luck to you.

Rick

By daveyo
Posted October 14, 2009 at 2:07 pm
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hi marty, you might want to speak to dr. graeme steele at brigham and womens.
he might offer you some information, and help you solve the problem.
he's done right by me

By martyofmass
Posted October 14, 2009 at 9:51 pm
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RickB, Thank you so much for sharing your story and your advice. I really appreciate that. I will check out the links you sent. Very encouraging! I think that when I got my staph infection, that I somehow damaged the neo, resulting in this situation I have. I am ever eager and hopeful that some normalcy will result, yet cautiously realistic. It's all so new to me and I'm a tad on the depressed side, but I will get through this. Your words, along with the many kind and helpful things folks have been posting makes me feel less alone, and I am grateful.
Best to you,
Marty

By NCSteve
Posted October 15, 2009 at 7:14 am
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Marty,
I have no answers but wanted to share my story with you.
I've had my neo since Sept. '08 and it has been an ever changing ride since. I had three uti's by Thanksgiving '08, one of which landed me in the hospital for 6 days with sepsis. I think that my neo was affected during that time. After that I was able to void some with retention volumes of 50 to 300 cc's which I measured by cathing and tracked for six months. It gradually became more difficult to void and I depended more on cathing. During that period I was incontinent at night unless I set an alarm for every 4 hours to awaken and void.
I am now 13 months post neo and have been exclusively cathing every 4 or 5 hours for the past 4 months. I am fortunate in insurance paying for caths but I still wash, boil and reuse them. I feel that I might be going overboard in keeping cathing clean but after those UTI's I can't help myself. I have now found that I can even use a bathroom in a fast food joint where I simply lock the door and let others wait 8 minutes for me. I find one that has one of those baby changing tables where I can layout my supplies; antibacterial hand soap, ky jelly, cotton balls, betadine, alcohol hand cleaner, caths and baggies. I carry all of my stuff in a canvas bag and have been able to get my procedure down to less that 8 minutes. I live in the country, am very comfortable in the woods and have even cathed along a rural interstate exit while travelling alone somewhere in the middle of Georgia after parking the car "just right" and opening both doors to stand between.
I was very uncomfortable cathing anywhere except home but have forced myself to get over that fear as I decided I was not going to let that keep me from visiting family and friends (so far in florida and new york).
My urologist or surgeons have been unable to help resolve my inablity to void or tell me why.
I feel that I am blessed to be cancer free and cathing every four hours is a small price to pay. I recall a book by Dr. Seuss, that we used to read to the kids, entitled "Did I ever tell you how lucky you are?"
I know.
Good luck,
Steve

By martyofmass
Posted October 15, 2009 at 11:23 am
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Steve,
Thanks so much for sharing your story. Because I got a staph infection post surgery, I never want to be that sick again. One of my major fears is getting a UTI from cathing and have exercised enormous caution in doing so. It's only been once that I had to cath in a public restroom and I was totally freaked out by my germ phobia and the horrific nature and nastiness of the restroom. In my attempt to become more comfortable with cathing other than at home, I have wondered about some sort of 'briefcase' to carry my supplies. So far it's been a Walmart bag...A nice canvas bag sounds much better! In terms of washing the cath's, I've simply just used hot h2o and anti-bacterial soap and put them back into their original sleeve. Doesn't boiling melt the plastic? How do you store them to keep them sterile after washing?
I've been using a prescription sterile bacteriostatic lube, but KY is ok? I usually cath every 3 hours, but sometimes I can go longer, sometimes less. I, too, am grateful to be cancer free and thankful for each day. Thanks you for your support and kind words.
Marty

By NCSteve
Posted October 15, 2009 at 1:33 pm
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Marty,
I don't use plastic catheters but rather silicon and they seem to last forever. I boil for 20 minutes after washing and used to store them, like you, in the original sleeves. I now store them, after boiling and air drying, in gallon size zip lock storage bags which seems to work great for me. I know that I truly can not do anything sterile but my docs say that cathing is not a sterile but "clean" procedure for me. I get the KY in little, foil, single use sterile envelopes.
I think my biggest threat of infection is from not emptying totally and cathing certainly helps with that.
Again, I know only what is working for me. I hope that by diet, exercise and weight loss I will someday be able to cease my 5+ caths a day.
Steve

By martyofmass
Posted October 15, 2009 at 3:46 pm
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Thanks Steve!
Would you mind giving me the name of the silicon cath's you use? And, where can I purchase something similar to your canvas supplies' 'carrying case.'
Thanks again for your help.
Marty

By kck
Posted October 15, 2009 at 4:17 pm
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I had neobladder surgery 2/09. I lost 20 lbs & had a few compications that are resolved. I started physical therapy - pelvic floor strengthening- in May. I have seen improvement (ie some bladder control) and I highly encourage PT. I feel better overall - and that helps with the pelvic floor training and determination for control. I also use an electrical stimulation device every day to get those muscles going. Check at your local large hospital for therapists who specialize in pelvic floor. I am going on my first airplane trip to visit my daughter tomorrow. World - here I come!

By martyofmass
Posted October 15, 2009 at 4:41 pm
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KCK,
Thanks! Your words are very encouraging! I'm in the process of looking for Pelvic floor muscle rehab. I'm hopeful I'll find something fairly close. I'm kinda out in the boonies... Have a wonderful trip! Good for you!!!
Marty

By RickB
Posted October 15, 2009 at 9:11 pm
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Marty,

We've all been a little down on this wild ride. Just know that there are people here who have been there and can help you.

I'm curious about your statement about the rehab. Some pelvic floor muscle rehab does not require visiting a doctor. If you Google, things like this from the U of M come up:

http://www.umich.edu/~umperl/Kegel%20Exercises.htm

Have you tried Kegels and do they help in any way? And are there other exercises that your doctor suggests that don't involve a medical professional or medical monitoring (I know that some rehab requires that)>

Rick

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