Bladder distention?

[goldcap]

My husband was hospitalized for a distended bladder. They released him with a catheter. Do not know if it is going to be permanent or not. Have to see his urologist. Is this considered a normal progression of PSP? He is not tugging at it or anything but seems discouraged. I once told him to tell me when he has had enough. In the wee hours of the morning he started moaning and when I asked him if he was ok expecting a thumbs up or down he mumbled,' I've had enough". I don't know what shocked me more the statement or that he actually put a sentence together that was audible. 

[jillannf6]

NO IVE  NTOT  HAD  TTHIS RPROBLEM YET  =  AND DONT WANT AA  CATHETERR  IFF [POSSIBLE    

SORYI  I  CANT HELP  YOU

L OL IJILL

LXXXX

[goldcap in reply to jillannf6]

Glad you havent't had this problem Jill and thanks for the concern.

Best Jayne

[easterncedar]

it took a couple of weeks for my guy to get used to the catheter, although it didn't pain him particularly.  It is emasculating, though, and discouraging, for sure, so when it became dislodged after 2.5 months (It had been replaced twice, of course, as usual) I removed it, and he is happier. (I'm managing.)   I wonder if you mightn't be able to use a straight catheter for his problem, which seems to be retention rather than incontinence.  With that you would drain his bladder at intervals and he wouldn't have the constant presence of the equipment.  (My guy's prostate made the straight catheter impossible for us, which I was very sorry about!)

[Heady]

S has had a Catether for just over the month now.  I know he is not happy, but suffering it as it is a lot easier for me.  The main problem he has, is when it pulls, I.e. Bag full, or the straps not in the right place.  He is in a respite at the moment, twice now I have found the bag just hanging and he says he is in pain, (thumbs up, when I ask about pain!). Perhaps that might be an issue!  

I know this may sound wrong and very selfish of me, but it's the best thing anybody as done for us!  Life as improved enormously. No constant visits to the loo, soaking wet pads, clothes, best of all, no sleeping in a urinal!!!!

Lots of love

Heady

[easterncedar in reply to Heady]

NOT wrong or selfish, Heady! Those are not inconsiderable factors. And think of the environmental savings in laundry and trash!

 I was glad for the catheter, and will be glad when he gets it again, too, for all those reasons.  I did promise him at the beginning that he could have time off from it, that it needn't be permanent.  I am coping a bit better at preventing leakage in general now (doubling up on the panties).  He also doesn't really bother any more trying to get up to go, which I think having the catheter got him used to, and that's to the good, since he really has no control over it, and there used to be so many troublesome, effortful, wasted trips to the loo, which in the middle of the night were maddening.

I have decided that he will have the catheter again when we  go on vacation this summer, since dealing with rest stops was such a nightmare last year that I decided we couldn't do the visits we had hoped to. I'm glad to have that option and to know how to manage it.  

On we go!  (And I used to get so bored listening to folks talking about potty training their children. Karma!)

[Heady in reply to easterncedar]

Never thought of myself as Green!!!  

We do occasionally sound like a group from Mother and a Toddler groups.  When you think about it, we are discussing the most important part of our existence, getting food in and out of the body!  Probably, if we all actually TALKED about this subject correctly, the likes of us would not suffer quite so much.  The dread of S wetting himself when out in public has unquestionably ruined both our lives over the past few years.  The few times it happened, nothing horrible happened, we were not turned into stone, or cast out of the town! Yet both our confidence got seriously knocked. So sad and such a waste of   Our precious time.

Lots of love

Heady

[goldcap in reply to easterncedar]

Heady, I found the protective pants (diapers the best). I use a booster pad and double up at night. Also a cloth permanent pad with a very absorbent pad topped with a light one. The urine( if it makes it out of the double diapers) rarely gets past the first disposable. It is almost impossible to wear diapers with a catheter and he no longer uses the loo so now I have to deal with bed messes-not fun. For me catheter not better. And until we see doctor and get something more discreet we really cannot go out with a bag of urine trailing from his body. I know they have those bags that tape to the leg but the whole thing is such a hassle and he now is depressed and won't get out of bed. He was doing so well since his last hospitalization and was taking an interest in things around him and enjoying our outings. The OT even had him up and walking with support a bit! I feel like he is giving up now. He has not lost his appetite thank God as he has made it known from the beginning no PEG. And since we started the thickened liquids he rarely coughs or chokes anymore. EC I am glad he has gotten over trying to get up in the wee hours (no pun intended). Really helps with avoid falls and getting a proper night's sleep. And we are like a mommy & me group discussing toileting and feeding. I thought this part of my life were over years ago-oh well. And Heady he has never had an accident with the diapers except when he does a stinky in the middle of dinner in the restaurant. Can't run him to the ladies room to change him like we did without children now can we? I think this disease hits everyone so differently within a general framework if that makes any sense. F seems so advanced in some areas and not so (compared to others on here). But I am so glad we have an open forum to discuss these things here.  Wish we could have a PJ party like we did as teenagers. Stay up all night and drink wine and eat comfort foods and do our own nails for a change lol

XXX all of you out there!

[easterncedar in reply to goldcap]

The leg bag is really very easy to manage and perfectly discreet. I was emptying it for him at noon and in the evening, so the aides never had to deal with it, and he had outings with friends without me and no problems at all.  I hope your urologist can help you sort something that returns some quality of life for your husband, Jayne.  This needn't be the last straw.

Good luck, peace and strength. Ec

[mthteach in reply to easterncedar]

esterncedar, 

How do you keep the catheter from leaking. We have a wearable kind, and it leaks bad. What am I doing wrong?

[goldcap in reply to mthteach]

I don't think the wearable kind works very well. F hated it when we tried it for nightime over 2 years ago. What he has now was inserted at the hospital. I think pull ups with booster pads work very well. His urologist feels he needs to keep the catheter in. So there you have it

[easterncedar in reply to mthteach]

Keeping the penis in place is key to no leaking with the molded plastic external catheter, and we had such mixed success with that I gave it up. Can't use convenes due to retraction, though some folks have had good luck with those.

[mthteach in reply to easterncedar]

This is a crazy subject. How can you tell if it has retracted. I tried the catheter again last night. The molded plastic was completely off him the next morning. I do not think he would pull it off. My niece is a surgical nurse (RN), I might call and get advice from her. Thank you for help.

[abirke]

Enough of what? The catheter....or something more?

[goldcap]

Wanting to try and fight. Life I guess. That's why it upset me so much.

[Amilazy]

Loss of urine and bowel controls seems to happen slowly usual seems to be a middle stage of PSP.  M became incontinent slowly over about a year, initially a few accidents weekly, slowly coming up to daily and then all the time from 2 pads a day (day and night) to over 10 with constant clothing issues.  The urinary catheter means back to 2 pads a day, no accidents (except occaisional blockage or removal of leg bag) M happier in social places.  Bowel accidents becoming more common but if I spot the signs no issues but as no vocal cues have to watch for fidgeting.  Problem with PEG feeding bowel movements very loose so accidents are major clean ups.

So yes incontinence is an issue for PSP (along with many other nuerological conditions) that needs to be thought about.

Best wishes Tim