Supra-pubic Catheter Anyone?

[foggyrose]

After living with MS, now SPMS, alone for thirty-five years, my quality of life has greatly deteriorated. Besides using a powerchair full time for the past five years when my legs stopped working normally and dealing with excrutiating nerve pain 24/7, I now have developed "bladder issues". I'm unable to tell when I have to urinate until it's too late. If I stay seated, it's usually okay, but soon as I stand to transfer to the toilet, the dam breaks -- even if I'm standing right in front of the "commode". There's no way I can hold it anymore. Been using the latest fashion in protective underwear, but it's soooo difficult changing everything.

My legs feel like they weigh one hundred pounds each because they're always swollen from feet to just below the knees with lymphedema from immobility. By the time I'm ready once again, I'm completely frustrated and exhausted. I can't tell you how many tears have been shed from the frustration of trying to get my legs into the proper openings of my pants. With this problem basically controlling my life, it seems like the time has come to do something different.

I've done some research on the supra-pubic catheters on-line and they look promising. However, there's nothing like personal experience to tell what it's REALLY like living with one of these inserted all the time. Right now it looks like it would provide more freedom, do away with the problems associated with incontinence, like skin issues, having to wear Depend, etc. and getting dressed just once a day would eliminate alot of frustration.

Can anyone shed some light on this? I'd really appreciate any thoughts you may have. Life is sure getting tough to deal with and anything to make it easier would be welcome. Sorry this has become so long.

Take care.......

[hunterd]

i`ve been seriously considering it. when i asked my urologist, he said that it leaves an open hole for bacteria and such to enter the body. i`ve spoken with others who have one, and with meticilus(sp?) cleaning of the site, they have never had an infection. i`ll be interested in the replys too. good luck.

dave

[Des]

You can do a search here, by just clicking on the word search above here in the colored line. Then just use your post heading for what you're searching for.

[foggyrose]

Thanks!

Hey there Dave......Looks like we're on opposite sides of the state. Right now, it's all cold and snowy. Sorry you're in the same boat with this "wonderful" disease. If you make any progress, I too will be interested in learning about your experience.

One article I read said that the hole the catheter makes will close very quickly if the decision is made to not use it anymore. I certainly wouldn't want to walk around with an open hole like that!! YIKES!! GROSS!! Have to check this out some more. Good luck to you!

Hi Des! I did the search here, but nothing was found. Am I missing something? Thank you anyway!

[foggyrose]

It's me again Des......Scratch what I posted previously. I did the Search from a different place and found 17 pages of information about the SP caths. Sorry about the confusion!

[kebsa]

i have had an SP for around 2 yrs. My situation was as you described, no sense that i needed to go until the last minute only to flood as soon as i stood to transfer (so frustrating). I had a standard cath to begin with and that was certainly better than no catheter. Just about all specimens of urine from a catheter will grow bacteria after they have been in for around 3 weeks but it is not active infection but colonization- the only negative thing about this is some of us produce sediment in response to that colonization and for me that meant the standard cath would block fairly easily even though i drink heaps. switching to an SP meant it was possible to use a much bigger catheter so that it did not block off between changes.

for me the only down side is that IF i do have a proper infection, then i get very painful bladder spasms but even then it tends to start happening before the fevers etc so is a good early warning that something is wrong. I also get really really intense bladder spasms on catheter changes but this is not common and we have worked out how to manage it. my continence nurse using lignocaine jelly and i take a dose of valium to relax the muscles- together it works well- without doing this and they were peeling me from the ceiling

as for the hole, yes it does start to close very quickly - in fact as soon as the catheter is out- the main significance of this is that if the catheter falls out (not common, usually if the balloon bursts and this is really uncommon) you need to get to someone to have a new one placed within the first one to two hours. make sure you always have a spare catheter on hand for just this use- i have also learnt that if i go into hospital and need the catheter changed, i need to take a spare with me "just in case" as they often do not have the brand or size i need


all in all, having normal bladder function would be the best thing but other than that, at least using a catheter gives confidence that there will be no accidents out in public. and of the 2 options (speaking from a female point of view) for me the SP is better than the standard urethral catheter

[foggyrose]

Thank you kebsa!

I really appreciate you sharing your experience of living with a SP catheter with me. This is such a great way of "talking" with others who are living with the same situation.....who understand so we don't have to be embarrassed.

It sounds like you're glad you have it, even if there are some bumps in the road. Seems like just about everything has it's good and bad points. Those painful bladder spasms concern me since I do have pretty bad spasticity all ready. Also being diagnosed with fibromyalgia, any pain at all feels worse than it normally would, but I'll definitely discuss this with my neurologist the next time I see him.

Don't think I'd do so well with a regular catheter that I'd have to insert myself since my balance is so bad -- even sitting down. Wouldn't want to end up on the floor!

Which doctor did your actual operation of having the SP implanted.....neuro, urologist, regular surgeon, or ??? You mentioned having a nurse change it when necessary, do they come to your house to do this? That would work for me since transportation is always a problem.

Thank you so much again for all the info. You've given me lots to think about.......foggy

[1595213528@facebook]

suprapubic cath and my health.

after years of self cathing, i was given a suprapubic catheter, it was hell at first, clged a few times meaning trips / to the e.r. now it is much better, don't wet all i own anymoremy husband has to flush it 2times day, and change tube every 4weeej=ks or so, it is not comfy but the shame of being wet made this the, way to go.not comfy but much better than before.wish i could have the practice of intimacy again. think hubby ca.nnot see me as a wife anymore, just a patient needing a procedure. hope this changes some day..i misss being his lover not his patient,i will work on this soon.

[Razgo]

her is a good thread to read through. http://www.msworld.org/forum/showthread.php?t=91738

i think it comes down to whats best for your situation, IDC or supra.

russ

After living with MS, now SPMS, alone for thirty-five years, my quality of life has greatly deteriorated. Besides using a powerchair full time for the past five years when my legs stopped working normally and dealing with excrutiating nerve pain 24/7, I now have developed "bladder issues". I'm unable to tell when I have to urinate until it's too late. If I stay seated, it's usually okay, but soon as I stand to transfer to the toilet, the dam breaks -- even if I'm standing right in front of the "commode". There's no way I can hold it anymore. Been using the latest fashion in protective underwear, but it's soooo difficult changing everything.

My legs feel like they weigh one hundred pounds each because they're always swollen from feet to just below the knees with lymphedema from immobility. By the time I'm ready once again, I'm completely frustrated and exhausted. I can't tell you how many tears have been shed from the frustration of trying to get my legs into the proper openings of my pants. With this problem basically controlling my life, it seems like the time has come to do something different.

I've done some research on the supra-pubic catheters on-line and they look promising. However, there's nothing like personal experience to tell what it's REALLY like living with one of these inserted all the time. Right now it looks like it would provide more freedom, do away with the problems associated with incontinence, like skin issues, having to wear Depend, etc. and getting dressed just once a day would eliminate alot of frustration.

Can anyone shed some light on this? I'd really appreciate any thoughts you may have. Life is sure getting tough to deal with and anything to make it easier would be welcome. Sorry this has become so long.

Take care.......

[Razgo]

As i change all my wifes catheters sice 1993 I can safely say your Husband just needs to seperate in his mind when your a "patient" and when your his "wife". Not everyone can get their head around this and takes some seriouse adjustments on his part not to mention your own.

My wife has NGT and IDC tubes and i take care of her bowels. we have no intimacy issues it wont happen overnight but it will happen.

after years of self cathing, i was given a suprapubic catheter, it was hell at first, clged a few times meaning trips / to the e.r. now it is much better, don't wet all i own anymoremy husband has to flush it 2times day, and change tube every 4weeej=ks or so, it is not comfy but the shame of being wet made this the, way to go.not comfy but much better than before.wish i could have the practice of intimacy again. think hubby ca.nnot see me as a wife anymore, just a patient needing a procedure. hope this changes some day..i misss being his lover not his patient,i will work on this soon.

[kebsa]

foggyrose

sorry i have not answered sooner, i have not checked in here recently. it was my urologist who inserted the SP, it is a simple procedure that was done under a light anesthetic as a day patient. IF it turns out to be something that you cannot adjust to or you think is worse than before, once the catheter is removed, the hole starts to close almost stright away- so you are not stuck with it if you change your mind.
as for the bladder spasms, they have been unpleasant but with a bit of trial and error, i am now on medication that is helping- so much so that if i get spasms now it is an indication that something is wrong such as the catheter bag tube is kinked off or even that i may be a bit constipated. I still do get spasms when they are due to change the catheter but once again we have worked out a better way to manage it, i take oral diazepam before the nurse comes and she uses xylocaine gel around the catheter both as she is removing the old one and when the new one goes in. they tend not to use the xylocaine jelly for sp's if they can avoid it as there is a very small chance it may affect you BP but it has not been an issue for me. I do feel some discomfort for a very brief moment during the change but it settles quickly afterwards- i would say though that the nurse who comes to my home to do my changes is a continence nurse and i would not be happy to have a non specialist nurse deal with the changes simply because it has taken a but of problem solving to work out a managment regieme that works well. I am an a trained RN and had once thought that this would be something i could self manage but considering the spasms etc i am glad to have the experise.

would be interested to know how you decide and how things work out for you

[Susie99]

SP CATH

I HAVE MINE FOR 4 YEARS AND MOST OF TIME I GLAD FOR IT BUT THEN I HATE IT AND WANT IT OUT. I SAD ALL TIME THERE IS NOTHING TO BE HAPPY FOR. I HAVE TON PILLS CAUSE I AM IN PAIN.

[Susie99]

YES I HAVE SP CATH FOR LAST 7 YEARS

I HATE IT AND HAVE NO OTHER CHOICE.

[foggyrose]

Hi Susie,

Thank you for posting about your experience with the SP catheter. From what you and others have said, it sounds like a good thing for the incontinence, but just something else to hate about this miserable disease. I haven't made the decision yet, but am sure tired of changing clothes so often and having my life controlled by "potty issues".

Take care...............

[socrmom]

I HATE IT AND HAVE NO OTHER CHOICE.

Why do you hate? I know a person who thinks it is the greatest, but she lives in a Nursing Home.