Incontinence

Hi Jo, sorry, to see you on here, unfortunately I can't comment on your husband's problem as I have never experienced it, the reason I've answer is that I noticed you have not received a response, by responding your post will go back to the top, increasing the chance someone else will answer your question.

All the best Ulls 

Jo, I don't know if this is too soon to consider, but there's an implant your husband could get, this totally controls the bladder.

A couple of months ago I was on 'Living with Prostate Cancer ' course at my local Maggie's.  They told us about this implant, then at my monthly Support Group, again at Maggie's, one of the guys actually has one of these implants.  He was down to being virtually totally incontinent.  This implant has totally changed his life.  He has total control again.  It's called an "Artificial Urinary Sphincter".  Google it.

He would be like a new man.

Hello.

No tea,,coffee, cola chocolate alcohol.

Penis Clamp, You can get them on E.Bay or aliexpress.

Close fitting incontinence underwear and plastic pants to go over them.

Nappy rash cream to stop itching.

Expanding waist trousers in Black, Navy Blue or dark Brown.

makes it more comfortable with the extra underwear and pad

Key for invalid toilets, you can get them on E-Bay. for about five pounds, I have one but not used it yet

Small backpack when you are out, for spare pants, pads and small plastic incontinence container.

Go to your Docter and ask for."Mirabegron 25 or 50mg combined with Tadalafil 5mg and to break his lethargy ask for Modafinil 100 mg,

I would cut the tablet(Modafinil) in half, try it, if not a success take the other half about six hours later, your Docter will advise.

The modafinil is interesting it will structure your day and get regular sleep.

At night you can rig up an external kind of catheter and void into a container, you can get back to sleep quite easily.

I still void during the day and I am not aware I am doing it, but by doing the above, it is now not such a problem, I go through about five or six pads a day.

I have been on Mirabegron for about seven weeks, and less than a week combined with Tadalafil, still a bit soon to see if it is working

Get proper instruction on how to do "Kegel Exercise". It is a slow process.

Hope this information is of some help.

Your Husband is not alone

Regards

Hello Jo

As Stevcam said, there is a small kind of valve implant, also an implant sling, and Botox injections in the Bladder, the Botox can last about six months and it seems to be quite successful. These are in most cases for the future, and for the  minority who are not successful re the front line medication combined with Kegel etc

Like your husband, after RP i I was in a bit of a down side, then it started to get better , was down to one pad a day. The Surgery although a clinical success re the prostate, some cancer had spread and I had  33 RT which was Ok no problems. My incontinence got a bit worse, but as I explained in the other post, managed to function quite well.

As your husband is only three months post op, at this stage his condition is not that unusual. I have read hundreds of posts and all I can say is that the time thing varies tremendously, IF voiding was an Olympic sport I would have been a winner.. then it started to improve, and I was down to one pad a day. As I said in the other post, a fellow patient our conditions more or less identical he recovered very quickly with little or no problems.

With all the voiding, perhaps a little salt and iron tablet, vitamin C I think is a Diuretic but you need it and the body does not store Iron and Vitamin C.

If you can afford to buy a small light box, you can get a pre owned one on E-Bay, it is for S.A.D it gives you daylight at 10,000 lux, with the winter coming on and darkness, if you use it for perhaps half hour or so in the morning, for some people, me included it does lift your spirit and you can start the day feeling ok. It is in my opinion a better alternative in this situation than antidepressants

Although it might be tedious, and you might not see an immediate result, cut out all foods that are diuretic or irritate the bladder.

Just look up diuretic food or whatever, someone will have made up a list.

Unless you are a" Super Hero" no previous life experience prepares you for incontinence, the feeling of despair and impotence is outside your terms of reference, but as I said after about three/four months it did start to improve. prior to my RT

Part of my life is mild exercise; I am fortunate that I live in a village and a forest walk is about a hundred yards away. After the RP i was in a catheter for a month ( had a leak, just my luck) When I got mobile really got into walking was pushing myself, also got into fasting and brought my weight down. At first I would go out early in the dark , wearing all the incontinence gear and a head torch and gloves.

Now I feel guilty if miss my walk.

The Docter might think it a bit early for your husband to go on medication.

Please excuse - Spelling, Grammer, Punctuation, 

Regards, and all the best

I totally agree with your comment :

standfast said:

Unless you are a" Super Hero" no previous life experience prepares you for incontinence, the feeling of despair

I was relatively lucky, I used 3 pads a day, mainly for dribbling for a couple of months , then I always had one on for peace of mind, and a couple in bed to lie on.

10 months after my Radiation treatment finished, I still carry one to work every day, just in case.

Going to the loo now I still can't go if someone else is there.  I think it was February before I could stand up for a Pee.  I got home from work, all excited, "Guess what I did today?". She never guessed right.

Thanks for the reply.

Perhaps I've not looked hard enough, but there doesn't seem to be a site that describes in detail the way to live and climb out of incontinence related to the post operative situation. As you know, it is not gradual. the first walk after the operation and your world has changed and you are unprepared for it.

Can you explain the horror of the first full flow of uncontrollable urine! no words can explain it to the uninfected 

I feel like a "Survivalist or a Prepper" every day is a survival fight against the ever-present enemy, except my problem is actual and their problems are mostly paranoia.

Glad that your situation has improved.

The peeing I have got down to a fine art.

Incontinence plastic container in car, also when I am out walking if the pad fells heavy, I have a mid length outdoor lightweight nylon jacket which is below waist level, literally in about ten seconds or under, can have a pad out and another in, without being observed, have small plastic bag for pad and into pocket.

Incontinence is like a mortgage, "It works on nights and Sundays it works on holidays" no rest from it!

I am starting another couple of months of Mirabegron and tadalafil! Then I think it is Botox injection, will try that then it will be the sling or the pump.

The meds I am on at the moment if they work only contain, not cure. Although a few people have not relapsed, perhaps through constant bladder training and the unknown.

So far , no great success, perhaps the urgency has gone!, but still voiding during the day with no sensation.

It is certainly a life changing complaint we have. Thank goodness I am not a vain person; incontinence would finish you off.

Must feel like getting a second chance at life when you recover.

Glad for you.

All the Best

I have a different outlook on life now.  I can talk about anything (before I used to keep everything locked up).

I had counselling after my Radiation treatment ended.  That helped a lot.

Keeping a sense of humour gets you through it all, the good days and the bad days.

I'm back in counselling again, this time for everything else that is wrong with me.

I am a lot stronger mentally than ever.  I put it down to being able to talk about my problems.  This forum helped me immensely.

Hi Jo have you considered a catheter with a tap to enable the feeling of bloating and release? I had to measure volumes drunk and then start controlled measured releases ( into measuring jug) keep records and after 2 weeks took back control 

as per other posts avoid coffee, certain teas read up on bladders. I used lemon water to flush out bad bugs ( had retention) as urine sample tests where vital too

Hi Standfast, when I was at our local Maggie's cancer center, one of the other guys discribed his incontinence problem's he had a valve fitted in his penis, when he wants to go he gets it out points it and presses the valve, and flows like everyone else, and there is no leaking, have a word with the consultant.

All the best Ulls 

Ulls, it's called ant Artificial Urinary Sphincter.  I know if I was in that situation, I'd look into the possibility.