Bruce went to his doctor today for a check up on the new catheter. Prior to this catheter, the doctor had ordered an intermittent or what I hear the nurses call, ""straight cath" It is not left in and the doctor feels that bacteria has less of a chance to colonize....I just read a paper that states that 80%-100% of those with permanent caths will become infected within two weeks of placement. My question is:
Those of you who have, or have mates who have permanent catheterizations; what has been your experience with UTI's ? and what sort of preventative measures do you use?
I feel very guilty that B still has the permanent cath. I asked him which one he wanted and he said , "Not this one" Well with all my happiness I told him that was a good idea then I'm not poking and prodding...and plus we'll boht get some sleep! etc...Then I asked, "wait did you say "not this one" or "this one"?" He said not this one stay in, but when we got to Dr.x he told him to leave it in....thats when dr. told us of the horrors........!!! I fear that B changed his mind for me....and though most of him is met with apathy, there are moments when he considers me....I fear these are one of those moments!
He has been so healthy I want to keep him this way!
Tell me what ya'll do to keep it clean!
thanks,
avb
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abirke
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A, we change my husband's once a month. A visiting nurse does it so we don't have to go to Urologist every time. He has UTI's even before he began using a catheter. One went into his bloodstream and he had to be hospitalized. When his bladder became distended and his bowels became impacted from the pressure a , catheter was put in. He was sent home from the hospital with it (as is common policy.). We saw his Urologist to remove it but unfortunately he good no longer go on his own and has had it ever since. The urologist offered him the option of having a sub pubic one put in which Is inserted directly into the bladder and drained manually several times daily instead of dripping into a bag. Plus is that supposedly you get fewer or no UTIs and you can use it for other things. Negative is that you cannot see the urine and have to be diligent about remembering to drain it. The sensitive issue is the " other thing" I.e. Intimacy. Early on we were still intimate but once he became doubly incontinent it went out the window so to speak. The diaper changing killed any romantic notion for me but about the same time fortunately or unfortunately (depending on how you look at it) he became dysfunctional. I know this is all TMI and I apologize in advance to anyone that I have offended. I would be curios to hear others take on this subject. As for keeping it clean wipe around where the tube goes it frequently and make sure the catheters you use have Valves that keep the urine from backing up when catheter is full. And drain bag often. The leg bags are much smaller. I use disposable leg bags when we go out and soak the regular one when not in use. The nurse gives us a fresh bag when she changes his catheter. Hope this was a little bit helpful.
your post was very helpful, gp, thank you. You know we don't talk about intimacy issues much on this site. I think because we don't...I mean I think it's because those issues have been lost to PSP .So have you found the sub pubic cath to be less wrought with UTI's as they said? I would be willing to go with that . I first am going to have to google what it is...
Again Thank you for your write...You know, before B was ever diagnosed, he stopped...he said that he was too scared to....It was a rough patch in our marriage and we just stopped....I took it as a personal afront to how he felt about me...but now I think it was PSP attacking his weakest emotion.
AVB, I appreciate your candid reply. He does not have a sub pubic, said it was too invasive back when he could speak and was having bladder/ prostate problems and the urologist suggested it. The doctor asked him again after he was hospitalized and he did an immediate thumbs down. He also has been vehement about not wanting a PEG as well. Luckily he still has a good appetite and manages to eat just about everything if it is chopped up well. All of his liquids are thickened. Found a great site that sells bottles of pre-thickened water and juices. They even have cranberry! You can get nectar or honey thickness. I think they they taste better to him.
I found your intimacy comment interesting. It must have been rough for you and of course your feelings were hurt. We went through the opposite. He had what is known as hypersexuality. There was a very knowledgeable man on this site (with a science background) who thought my husband might have an additional neurological disorder, Pick's disease. As F was also very violent for awhile as well. Two major symptoms not usually associated with PSP. He had one indiscretion that I found out about (which almost broke up our relationship) and several more I found out about after he was diagnosed with PSP. Talk about learning how to love someone unconditionally. I had a hard time dealing with it all at first. I was not so nice for awhile. I would say things like," I bet if you knew you were going to get this disease and I would be taking care of you you would have resisted your impulses"...and yes I have edited the language I really used for this post. But you get the gist of it!.Every once in awhile when I feel really exhausted or have had a rough day, I climb over the support rail and cuddle him the way I used to and he will stroke my arm (suprisedly gentle) and I tell him I forgive him and it really all is ok now, and that the past is not important anymore. I have grown a lot with all of this. I am much stronger and more forgiving than I ever thought I could be. But honestly, it is all getting to me. I don't know how much I have left inside. Sometimes I just want someone to take care of me...
I read your post with great admiration. Thankfully you came out of everything strong but I can imagine what a devastating time it must have been for you. Its easy to say its a disease but very hurtful even so. I don't know how I would cope. Again PSP is testing us in ways we never thought possible and having the strength to overcome everything with our love for our mates can sometimes be sorely tested. If we had any inkling of what we will be called upon to do I don't think we would comprehend it all. That's the only " good" thing about PSP - at least the progression is slow usually so we are able to learn to cope with one situation before the next calamity hits. Sending warm thoughts and good wishes to you. Love Pauline xx
I am glad it's slow progression for you showaddy...frankly I don't know how fast Bruce's progression is going ...I am afraid that B's is right on course to the longevity after diagnosis....But hey that is not what we should think about, right? it'is the here and now...what to do with a cath, and the sort of awkward subject of intimacy, and maybe a joke or two thrown in for comic relief. ...In fact here's a funny ...
PeterJones was on a train trip somewhere in Aussie land when the fairly smooth ride hit a bump right as he was passing a nice (i'm sure) ladies cabin. Well that bump sent himn right into the lap of that nice lady....I can't remember what transpired after that but one can only imagine .....hahaha...
We had a good laugh about that one....."Nice dropping in...." "So have you had a mammogram lately ....Just a concerned citizen, mam"
Thanks for the laugh - after the day I have had I needed that! When I say slow progress its been 5 years now that Steve has had PSP - diagnosed 2013 but was falling way before that but as some men do refused to see a doctor. Left it so long that it was an easy diagnosis. In a way easier as so many people as misdiagnosed. He is now in a nursing home (6 months) as I couldn't cope. I think he is year 5 or 6 down the line. I feel so useless but now he cannot eat, toilet or see for himself I had no choice and its rough going. I feel so sorry for him as I think he is ready for giving up. The problem is that just because he wants that it may still get worse. His heart is strong (tested) and weakness is his problem and swallowing as his lungs are getting congested even with thickened drinks. Anyway onwards and upwards as they say. Love Pauline x
We are right behind you. I'm 55, and Bruce 56....diagnosed 3/13...symptoms since 2011(?). 2012 we (me and the kids) INSISTED he go to the dr for maybe ministrokes....doc gives him the once over "Nah, you're just getting old" ....we found a new dr....and the journey began!!
Had to smile - so similar. Our daughter said she wouldn't speak to him again if he didn't see a doctor. She really meant it as she was so worried. So yes, that's when our journey began ......
Thank YOU JG for such a candid post. What a struggle you and yours went through / are going through. I just Googled Picks Disease . It sure has a whole lot of similarities to PSP, doesn't it? Infact , If I had seen this, I would have asked the Dr. to check for it. I may have seen it come to think about it...B never violent.
Noone ever understands the term unconditional until it is extracted from them one cell at a time, till there's seemingly nothing left..... And when the patient moves on, you/we are left standing there to gather what few cells remain to carry on. It's been done, though. People do gather up themselves and carry on...Many of them lead happy lives when they have gathered enough of themselves...I do hope that for you and me and everyone else here, JG....well moving on from this thought...
Might I ask how long he has had all of these conditions? How old is your mate, how long have you been married...Does he take special drugs for the Picks and the other neurological disorder...can you see that other drugs have affected PSP ( do not know how you could tell...so don't worry about that Q) If he does not have the sub pubic, does he have a permanent , inserted in the urethra, or a temporary, one that is inserted several times a day?
Well JG, Isn't it wonderful to talk to be able to discuss the most intimate gory (for lack of a better word parts of our lives to a seeming stranger and have that seeming stranger know exactly what you are going through and not be shocked or taken so aback you never hear from them again? I love this site....I went to a meeting last night and my dear sweet friends asked me the same question over and over..."He has what?" and the thing is that we have been to that question and answered that question already...and still they do not understand the answer....(at least they care) .It's such a relief to have ya'll here....I could go on so I'll go off instead
M has had permanent fitted catheter for six months she is happy with it. She had a UTI in first month none since, but I do ensure she has plenty of fluids which helps flush the nasties out according to the district nurse.
The anatomy differences mean our experience may be different to yours suggest you and B need help from other ladies who look after their loved ones.
Thanks AVB, just realised that there are 2 basic types of catheter and I think I may have confused them.
M has a manual inserted catheter which can be changed if blocked or she gets infection, it has been in place 6 months. But it is considered temporary as it can be removed easily(?).
The other type is a permanent surgically inserted catheter usually referred as sub pubic, M does not have this type which is more permanent and is inserted directly into bladder from outside.
I just read about this....that is a little too invasive though less compromising to the health of the bladder....ie less UTI's.....I feel like B is not quite ready for this permanent cath....I think he could have done the temporary cath....my heart is so confused....
We have had only one uti and Brian has had a catheter since mid June. Plenty to drink including at least one glass of cranberry juice a day (it stops the bugs sticking to the bladder). Keep the area clean wiping away from the entry point.
I bought cranberry juice, read up on it and have given b one cup throught the day. This stuff is 100% cranberry. papers say 2 cups (480?ML) of 25% is good so I will give him a 1/4c (120ml) everytime I give him fluid...wish it would work on his sleep...he can't seem to do that since cath been in. No pain he says he cannot remember how to sleep.....think of all the things they seem to forget how to do...I wonder if he could forget how to sleep....
No peg. He was all for the peg till we saw the surgeon and then he changed his mind.
We just get the normal cranberry juice and i have to thicken it for him. There is some enzyme in cranberry that stops the bugs sticking to the bladder wall. And don't forget if he has to have antibiotics the catheter needs to be changed half way through the course.
half way through, huh? I wonder if our insurance will pay for that....I think they only pay for 12 changes a year....maybe by the time he needs a two week change, I'll be confident to changing myself....I wonder if one can transition back and forth; you know to permanent and then temporary during a UTI... give the Urethra a rest....
B''s doctor described the permanent cath as setting up colonies, no, neighborhoods, no bigger than that... subdivisions of bacteria.....his description reminded me of new subdivisions that we humans are invading the poor little wild animals with. Bears and cougars and alligators all trying to find their place that is now inhabited by some new and deadly growth called "humans"...No biologic is free from some form of invasion...ugh Us or them...
jz, I did not know that if on antibiotics the catheter has to be changed halfway through the course! Why don't they tell you these things?! He cannot drink cranberry juice because he is on blood thinners.
rog has had a catheter in for some months now, wonderful things! no uti yet but he drinks at least two litres of fluid daily . bags are changed every week and a sterile new night bag every night. the day bag contains a bacterial filter and recatheterisation takes place at home every twelve weeks. we now both sleep well and can go out with less stress.
i am so glad you brought up about sex and relationships with this illness, it is not discussed no one and i mean no one talks about the dreadful consequences.
we cuddle and kiss but the dribble puts you off a bit!!!! anyway we have some amazing memories even now i will say do you remember when and he has a little sparkle in his eye!!!
Yes, we kiss but I don't know if it's him or because i am menopausal but I could as easily kiss him on the forehead as the lips...and the bad breath and drool is a little off putting.....I won't give up on that much intimacy ,...I like most to hear his breathing at night....I know when he is having a good nights rest by his 'sleep breathing " as opposed to a silent breathing pattern... and if he wants a kiss , well dear my breath aint so sweet either!
Oh and it was Goldcap who had the guts to bring up intimacy! but now that it's open lets not shut our feelings and questions etc. on a very important part of our lives.
So you change the bag out your own self? I thought you had to have that bag for a month! I don't mind buying extra bags or even change it out to a night bag and day bag with one soaking in a solution til it's needed. I don't want to mess with it too much . Is it the bag that produces the bacteria, or the tubing itself that goes up the urethra? Probably both, eh
Hey AVB ... your buddy Ketchupman! I went back and forth on Kim with Foley catheters (ie. permanent catheters ... for up to a month, although I never left one in over 2 weeks), and straight caths. I would usually switch back to the straight catheter in order to give her urethra a break. The Foley was nice for when we were out and about or when others were here at home watching her. Even my dad could easily take her to the bathroom and roll up her pants leg to drain the leg bag, without invading her privacy, although still a little awkward. But as Kim progressed, she cared less about those types of things. And I could rarely trust her to make any decisions for herself. If I asked her something one time, I could ask her an hour later and get a totally different answer.
When Kim was able to swallow some, I would give her a prescription that was supposed to minimize getting a UTI. It was a low-dose antibiotic called Nitrofurantoin, also known as Microbid. I think it did help minimize them. Assuming it works for men too.
We did consider a Super Pubic Catheter, but one doctor told me it was just as likely for her to get a UTI with it, as she could get one with a Foley. And since she already had one tube dangling from her stomach area (ie. the PEG), I felt having two of them was one too many.
Hi AVB, S has the Catether through his penis. Has had it since March. He has had two UTI's which involved hospitalisation. The first though, I am sure he had, before the Catether was fitted and not completely convinced that they ever got rid of that one. Since his last infection, his urine is a lot better and the horrible smell as gone. Thank Goodness!!! Despite this, I wouldn't/couldn't go back to not having one. I did bully him in to having it out in, but oh the difference, I think it's worth every second of Agro, but as S can't communicate, I don't know what he thinks.
The district nurse has to change it every 11 weeks, or after having an infection. The one thing I know S doesn't like, is having to wear trousers, he was a shorts man. Heating bills have come down!!!
As to the "other" problem, it is a subject I have wanted to bring up in the past. GC, read your post, well done! We did have a few problems before diagnosis, he blamed it on booze or old age, which ever suited him at the time. I took it personally, especially as the temper tantrums were getting worse. (I wonder how many divorces PSP has caused?) After diagnosis, I read that Sinemet could cause hyper sexuality, waited with bated breath, but no! Why is it he could only get the bad side effects???? Now? well incontenance is not very romantic, did once attempt to fight the pads, but felt that I was abusing him. So that side of life is well and truly put into our past life. Miss it dreadfully, but it wouldn't be S that I was making love to anymore and it's him I want, not his body, that's left.
Never spoken about this before, not even to my counsellor, feels good to actually put it out into the open. I don't feel old enough to put my sex life out with the trash, but it was probably one of the first victims, without me knowing about it. How much more can you hate this £&@£&@@ disease????
So true/// However if there was anything that made me feel 80 ( I apologize to those full , thriving octogenarians) outside of PSP, it was my own hormonal change!
But there are others out there who, like you, feel those needs and again, who feel that without the companionship , might as well be changing a tire...or something like that! Long sentence! Long wait
"When B told me he was scared I never pursued it ...I often wonder if I wasn't a little codependent....If HE didn't like it, no matter how much I wanted something, I dropped it!!! Wow tha'ts the first time I verbalized that feeling....moving on...
Dan, I just hope it's the right thing for Bruce...I feel like I am pressing him to the inevitable end too soon....
I hear you about all the tubes. I feel rather guilty about the PEG....I think I freaked out and went right from choking to never swallowing again.....I don't know how much I considered mushing it up and thickening it....I feel the same with the Cath! I feel like I jumped right to the Foley without full consideration of his needs....It's like some kind of reverse denial and I embracing the worst of the sickness as where he is at....and not taking it a little more slower ....You know I can talk the talk, but maybe I am allowing PSP to win.....Am I somehow cheating it to the finish line
i tried to finish my post to you and my letters stopped lettering....but my mouse was still working so I sent it....I'm telling you waht...computers an d me are not in sync lately!
So anyway I will finish up last post. Actually I think that WAS a good stopping point!
There are sometimes, that you have to give in, accept that PSP has won that battle and move on. We all hold on, to what WE think is important, like not having a Catether, when actually, being able to still go out into the real world, without worrying about "peeing your pants" is far more important!
We all know, infection of some sort will carry most of our loved ones off, so we fight tooth and nail to stop that, yet in all of our cases, we are shortening their lives, by making this the most important thing. Being out there enjoying life, should be the priority! I suppose it's because, we have the responsibility of keeping our loved ones alive, we all forget that life is for living, not hiding behind the door, in case the Bogeyman gets us. HE ALREADY HAS!!!!
How we do this, I don't know. I suppose it's that bloody magic wand again!!! Can I "pretty" please have one for Christmas.
You made me smile Heady. I know but he was not incontinent he could not go....and he did not void all the way I knwo this hurt him though he did not express pain. I feel like I am super guessing or over thinking what he needs.... you are right Heady. we will be toothless and nailless and we will still lose them....wasn't it just a few days ago I was not going to allow PSP to take control/...I just don't want to force the issue of death...it will come in due time... I need to breathe; do a few yoga moves; and be ok with what's happening....and enjoy our life together
Any urine left in the bladder could lead to infection. S, although going every five minutes, was still retaining urine. I so wish I had given in earlier to a Catether, while we were able to enjoy the full benefits of it! I don't see, in this case, that PSP has won other battle. Completely the opposite, we have found something that helps deal with one of the more intrusive symptoms, given us a bit more breathing space, to look after the rest. That's got to be good!
You're a godsend , Heady. I want to believe I did the right thing or maybe II want to believe Idid the wrong thing....
Now here's another crick in the the...I can't think of a good metaphor....
B hasn't been able to sleep well since he's had that thing in....his consultant (Its hard for me to call the man a Dr since he hasn't once examined B) said well there's a strange object in him....could be...but I asked B and he says he does not feel it.Knowing his diminished sense of pain or feeling I don't think thats it. We talked about it this morning...says he forgot how to sleep.....that's mind blowing.....He forgets how to take the next step, he forgets how to release his grip, he forgets to bend his torso when sitting or standing.....could it be that he can forget how to sleep? I gave him an extra half dose of Ambien.....to no benefit.....he and I were both just laying there....
I can't sleep when B can't sleep...Even w the benefit of not having to get up 2x a night for half hour stints of 100ccs peepee...who knew how much that man had in him when he went back to bed!
Well today is a new day....It's like afternoon over there Eh?
It's gonna be a hot and humid one today...and loopy @_@!
Dear all as my wise old gran would say choose your fights carefully. As much as we really don't want them to have a catheter (fear of infections etc) if you look at it from another way..... no wet pads/trousers.... dry bed so less washing...... safty because there is less trips to the toilet.
Brian lost interest in a sex life about 10 years ago (in his 60's) and the excuses were his tablets or to tired loads of reasons why not to indulge. Could it be one of the early symptoms of psp lack of sex drive.
I just read an arduous paper about cranberries as prevention to UTIs.....Cranberries have a protein which prevents the adhesion of bacteria to mucosal walls such as are on the Urethra . I liken it to the cranberry having a pointy surface and the smooth E. Coli and other bad things cannot stick to the walls of the one ingesting the fruit. There were also some disclaimers due to the studies volunteers becoming uninvolved in the study. Taste, nausea, sickness from something else prevented a good amount of volunteers to continue in many studies....What researchers did find was rather inconclusive...However I will go with what most have found to be true, including the American Indian, That Cranberries are a good method to prevent UTIs....
Give me another shot of the red stuff , Sam...make it a double
AVB
I jsut got back from buying cranberry juice and reading WebMD's explanation of the tart elixer. It said almost verbatim what I read in that paper...so if you want a better , more accurate description of cranberry juice's benefits...read WebMD.....
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Catheter help please
George 
Palliative/Hospice Care
