38 replies to this topic

[allister]

Hi Guys,

I'm in desperate need of advice here please.

I seem to be develpoing a pattern here of rejecting indwelling cath every two weeks.

It sarts with minor bladder spasms, then small clots. Followed by larger clots blocking up the cath. Bladder washes will clear it for an hour or so, then fresh clots block it again. The spasms get very bad and painfull, which can also cramps in the abdomen muscles, making it hard to take deep breaths.

I have been on Buscopan, but it seems not to be helping.
Had the district nurse out this morning and she called for the emergency doctor to give me a home visit. He gave a fresh prescription for "Detrusitol xl 4mg" prolonged release hard capsules - tolterodine tartrate. The dose for this is one a day, to start immediatly. Considering I'd already had 40mg of buscopan by 2pm today, then one of the new ones at 4pm, The spasms haven't eased off at all, and its now 11.15pm. I have spent the whole day on the bed, because movement makes the spasms worse. Any ideas please ? ? ?

Taking this rejection pattern into account, I've got to look at alternative ways to empty the bladder. Intermitant cathetering would be a none starter, so it looks like a supra pubic. Are these painfull to have changed, and has this got to be done in hospital?

Thanks Al

Edited by allister, 05 September 2009 - 10:25 PM.

[Trinity]

allister, on Sep 5 2009, 11:23 PM, said:

Taking this rejection pattern into account, I've got to look at alternative ways to empty the bladder. Intermitant cathetering would be a none starter, so it looks like a supra pubic.
Thanks Al

If your problem is with bladder spasms then there are a choice of drugs you can try including oxybutynin, there are others but I haven't tried them and can't think of them at the moment! If you are having so much problem with an indwelling cath, I can't see that switching to a supra pubic cath will make much difference as the catheter works the same and sit in the same place it's just how it exits the body that is changed.

Have you tried a different catheters, like a silicone one, or a different size balloon?

[shady]

I use Trospium as an antispasmodic for my bladder. Been taking it for 2 years without problems

[allister]

trinity, on Sep 6 2009, 02:50 PM, said:

allister, on Sep 5 2009, 11:23 PM, said:

Taking this rejection pattern into account, I've got to look at alternative ways to empty the bladder. Intermitant cathetering would be a none starter, so it looks like a supra pubic.
Thanks Al

If your problem is with bladder spasms then there are a choice of drugs you can try including oxybutynin, there are others but I haven't tried them and can't think of them at the moment! If you are having so much problem with an indwelling cath, I can't see that switching to a supra pubic cath will make much difference as the catheter works the same and sit in the same place it's just how it exits the body that is changed.

Have you tried a different catheters, like a silicone one, or a different size balloon?

Hi Trinity

Thanks for your reply

The spasms are driving me insane, cause there so often and painfull, so I'd love to be rid of them. buscopan didn't make a deal of difference over a two week period, whch is why i'm now trying the Tolterodine. I know 48 hrs isn't a long time to try a drug, but so far they've made no improvement either.I have seen Oxybutynin mentioned on here quite alot, so presume it must work quite well?

I was started of on a 14 cath, , and have had 3 of them in the past 8 weeks, but had a fair bit of bypassing, so now on a 16. Only had two bypasses in a fortnight on this size, so thats an improvement there, I've just got to the two week stage with this one and its back to clots - bad spasms, and discharge. For some reason at two weeks my body has had enough of the current catheter. In 8 weeks, i'm on my 4th foley. I am absolutley dreading having this one changed.

I was lead to believe that a supra pubic did't lay in the bladder, hence my belief that it would perhaps make things easier for me, s is that not correct?

All I know for sure is that I can carry on like this.
Cheers Al

[Trinity]

Supra pubic catheters lie in the bladder the same way as your cath does at the moment but the catheter exits through the abdomen leaving your 'equipment' free for other things!
I think it's worth trying different drugs, hopefully you will find one that suits you, also try a cath with less water in the balloon, it may irritate the bladder wall less. Have you considered intermittent cathing?

[allister]

trinity, on Sep 6 2009, 11:45 PM, said:

Supra pubic catheters lie in the bladder the same way as your cath does at the moment but the catheter exits through the abdomen leaving your 'equipment' free for other things!
I think it's worth trying different drugs, hopefully you will find one that suits you, also try a cath with less water in the balloon, it may irritate the bladder wall less. Have you considered intermittent cathing?

Ah, thanks for that, was obviously misslead by my GP. Typical !
Will willingly try other meds, cause i'm tired out from poor sleep caused by the spasms. The current cath has 8ml in the balloon, which the urologist felt was just enough to keep it in place . I received such naff help - advice - guidance from the hospital which is why I'm in this predicament.

With all the current issues I have with the cath, I don't think I could intermittents. Maybe I'm just chicken at present, but the thought of it makes my toes want to curl up !!
Is it as uncomfortable to do as it is to have an indwelling put in?

[graphic]

allister, on Sep 7 2009, 12:01 AM, said:

With all the current issues I have with the cath, I don't think I could intermittents. Maybe I'm just chicken at present, but the thought of it makes my toes want to curl up !!
Is it as uncomfortable to do as it is to have an indwelling put in?

I suppose it all depends on how much sensation you've got. If you find having a foley inserted painful then you might find intermittent painful. However, I have normal sensation and before recently switching to an indwelling I used intermittent 4 or 5 times a day for many years with no problems. The pre-lubricated ones tend to slip in easily. One advantage of intermittent is that you can use a much smaller size, providing you cure the clotting problem first, so maybe they won't irritate your urethra. Also, not having the balloon rubbing against your bladder might be of benefit. Considering all the problems you're getting with an indwelling I'd certainly give it a go.

[allister]

graphic, on Sep 7 2009, 12:22 AM, said:

allister, on Sep 7 2009, 12:01 AM, said:

With all the current issues I have with the cath, I don't think I could intermittents. Maybe I'm just chicken at present, but the thought of it makes my toes want to curl up !!
Is it as uncomfortable to do as it is to have an indwelling put in?

I suppose it all depends on how much sensation you've got. If you find having a foley inserted painful then you might find intermittent painful. However, I have normal sensation and before recently switching to an indwelling I used intermittent 4 or 5 times a day for many years with no problems. The pre-lubricated ones tend to slip in easily. One advantage of intermittent is that you can use a much smaller size, providing you cure the clotting problem first, so maybe they won't irritate your urethra. Also, not having the balloon rubbing against your bladder might be of benefit. Considering all the problems you're getting with an indwelling I'd certainly give it a go.

Got reduced sensation, but always had painfull experiences when caths have been changed. Its when it passes throug the prostate. despite 'coughing' to make it easier, thats where its painfull. Could be due to the fist cath being placed incorrectly, and thats made all others painfull. I know theres only one way to find out, but I've had such a rough time of late, and yes the thought of it scares me, knowing how my body has spasmed when cath changing. bladder - leg, and back spasms resulting in an ambulance trip to hospital!

I only start to clot when the same caths been in there for 12 - 13 days, Then I clot till its changed. Once changed, clots stop till cycle rests. So if I pluck up the courage to , clots shouldn't be an issue.

[qbounce]

Indwelling catheters make you more prone to bladder and kidney stones too. Have you been checked for any stones? Because your spasms are worstening, it couldn't hurt to make sure this isn't the cause.

[allister]

qbounce, on Sep 7 2009, 01:22 AM, said:

Indwelling catheters make you more prone to bladder and kidney stones too. Have you been checked for any stones? Because your spasms are worstening, it couldn't hurt to make sure this isn't the cause.

Yeh, they checked a load of stuff two weeks ago when I ended up in the emergency room, through spasms and cath changing, All was ok, apart from I can't pee without additional plumbing work !
But thanks for the sugestion qbounce.

[Jax]

Vesicare is another med to ask about. There's loads of others too. I can't remember the names of the 3 or 4 others I tried before finding the one that worked for me. Everyone responds differently to different ones. If you try ISC, use a bit smaller cath than what you use indwelling. You can always hold a grip round yourself to keep it sealed for the ISC. Just remove it slowly, and most of the trapped urine will drain as you do.

[allister]

Managed to get a home visit from my GP today. Tried to get him to bully the urologist for an earlier appointment than oct 11th, but he wouldn't.
Instead he managed to get a urology nurse to come out to me. She bought with her a 'silver tip' cath, supposed to help repelll antibodies/bacteria. Explained again the issues I have, and she assured me that she could change it for me - Pain Free!
Removal of the existing cath was pretty painfull, but credit due to the lass, I honestly never felt the new one go in. Its a 14 and she put in the full 10 mml in the ballloon.
That was at 12noon, and 13hrs later, I am still pain free!
I sincerely hope that this one proves moe sucsessfull. If so then she recommends that I do look at having a supra pubic, using these silver tipped caths and changing tham at 3wk intervals. She wants to find out if my "Bits" will function for pleasure. ( Acctually, so do I!)
Been told to carry on with the slow release pain killers for at least 14 days to give tham a chance. If these are unsucsessfull than they'll try the oxybutynin.

So thanks guys for your help - advice - support, Its appreciated

Al

[allister]

Bugger, here we go again. two weeks again, and woke up with spasms, and to wet bed, as I've by passed .
I am sooooo fed up with this. Urologist appt on the 12th oct, wish it was tomorrow.
Better ring the inco nurse in the morning, as I'm going to see friends at the weekend, so better to be re-cath'd i thinks.
Had no spasms inbetween, so pills must be working. Presume if I wasn't blocking cath, I wouldn't be having spasms either ?

[qbounce]

Last thing to consider, based on your pain for ICing. You could use a numbening gel called Lydocaine. Put it on the tip of your cath (I seem to recall some might even come with this aleady?), and it will deaden any feeling you have while cathing.

I'd look into ANYTHING and EVERYTHING possible before going to the surgical route (suprapubic).

Sorry you're deaing with this.

[allister]

Cheers Q, I must be really thick, I never thoght of that. They use two tubes of it when they re-cath me now!
Been alright again through the day, no leaks,just a couple of fairly minor spasms. See what tonight brings.....
I can't see that surgical route would make an difference as there would still be indwelling in the bladder.
I just got to pluck up the courage and try intermitent.
Al

[allister]

Although spasms and clots not too bad this time as he two week mark came, I insisted that the cath was changed. Inco nurse came out on 2nd oct and for the first time I FELT NO PAIN or discomfort whilst it was changed !!!! Either I'm loosing the last bit of sensation, body is used to it, or the nurse is getting better ? ! ? Not sure which, but could almost say it was a pleasure to have it changed. Had a few days away, a much needed change of 4 walls, and no bypassing or spasm issues. Went with a goodie bag of spare bits and bed protectors, but none were neded....hurray!
Urologist appy has eventually come round, 4 days to go. Will add notes when been and see what their ideas are.
Just grateful for all your coments. Its good to know I'm not alone and there's always someone only to willing to offer support. Thanks guys and gal's.

[allister]

Had my first Urology appointment today. Thats 3 months now after the onset of loss.
Don't know if I was expecing too much, but thought that there should have been some form of examination ?
Consultant had the notes from when I was first addmited in july, and also from mid august when I had the horrrific spasms.
He asked why wasn't IC and then explained the two forms of abdomon cathetering.
I explained all the issues I had had, and my concerns of being open to risks of UTI's with IC.
The upshot was, remain on the tolteradine anti spasmodics and to get the district inco nurse to teach me to IC. Thats starts of friday, and I'm really looking forward to it, (not). If I can't do it then he'll look at which abdomon way would suit me best.
So thats were I'm upto now. Really hope I can master IC,and that it doesnt cause me to have bladder smasms when doing it, as I know it will be better that having the indwelling and a bag. Might then be able to then find out if the other functions down there are operative or not.

Edited by allister, 12 October 2009 - 11:12 PM.

[Trinity]

allister, on Oct 13 2009, 12:09 AM, said:

.
my concerns of being open to risks of UTI's with IC.

Intermittent catheterisation is really your lowest risk of UTI. As you are in the UK you can have single use catheters with no issue, the only issue will be if you can tolerate regular cathing (depends where your sensation is, although you can get numbing gel to help) and how dry you can stay between cathing and whether this is acceptable to you.

All the research shows that IC, done correctly, has thelowest risk of UTI, bladder stones and bladder cancer. You should give it a good go, but ultimately if it doesn't work for you don't be afraid of exploring other options

[Tetracyclone]

I agree with Trinity. IC is a nice option, in part because it gives a sense of control. I have some ability to empty my bladder and I imagine I would be frustrated if i had to IC as often as I have the urge. I currently have a UTI (miserable) and suspect it was the result of arrogance that came from a year and more without problems. I thought it would bother me to IC but, despite mediocre hand function, I do fine.

I was so thrilled in the hospital when I learned to relax enough to wet my diaper. Who wooda thought? I hope it is going well with you.

[allister]

Hi Trinity and Pwuf
Thanks or your support.
Will probably have to use instillagel, as I have some very reduced sensation there. I have only ever had discomfort when it hits the prostate.
Will let you know how I get on on friday, figers crossed eh !

[allister]

Nurse cancelled appt.
IC to start tue 20th Oct.
Will let you know how I get on.
Al

[allister]

Well, tried IC and here was no way that the damm thing would go through the prostate.
Instead,it decided to try and makes its way through,by gauging some of the uretha out.

A replacement Foley went back in one easy go.

Will remain with the Foley, till I've been to the Spinal unit, and see what answers thy can give.

[allister]

Well, a few months down the line, and now had a SPC. Tried other anti - spasms drugs to no avil.
SPC been in for 10days now, and only 3 bladder spasms. Qusetion though; One spasm was very strong and long causing me to bypass a small amount through the penis. Is that normal.? Also; as I have sensation in the abdomen, I currently feel the spc everytime I move. Worst is chair to bed t'fer and its like I'm being stabbed - painfull. Please tell me that this should ease....please?
Apart from that, I'm pleased with it. Will take some time to see if I can go on a flipflow, so still on free drain 24/7, but used to the bags anyways.
Thanks guys.

Al

Edited by allister, 24 January 2010 - 01:10 AM.

[Tetracyclone]

aL, i'M HAPPY FOR YOU AND PRAYING IT GOES WELL.

[allister]

Tetracyclone, on Jan 23 2010, 02:05 AM, said:

aL, i'M HAPPY FOR YOU AND PRAYING IT GOES WELL.

Thanks Tetracyclone. Appreciated. Al

[slyd]

Geez Al . .
You've had a rough time with this !

I really wished for you that the IC would be ok. Although a "nuisance", after seven years' of self-cathing, I've only had 1 UTI ! And you have freedom to "hang out" a bit.
Starting off ISC was a total mind-f***, and I bled every time for weeks. This was probably due to the first cath I got from the hospital, which was as thick as a milkshake-straw! But spending some money on a superior cath made all the difference, and eventually you find it's just part of your routine.
I know we all have different issues, and I really hope you find some peace with your spc.
Dave

[slyd]

*

Edited by slyd, 24 January 2010 - 12:15 PM.

[dangerousdave]

Hi Allister
My experiance
I to had bladder problems. Drugs were of no use - constant blockages and infections of SP - Reapeat 5-7 day hospital inpatiant (became a regular)
The solution in my case was to have a CLAM operation in which the bladder is cut lengthways and a length of intestine material insurted into the bladder
This severing of the nerve and muscel leaves the bladder flacid and emptying is via SIC
The operation was by Mr Shah urology team at RNOH Stanmore

Good luck

[allister]

Thanks for your comments guys. Well its starting to settle down now with not much discomfort at all. Spasms aren't at bad in frequency, but shite are they killers when they strike! lasting upwards of 6 minutes! 3 times now I've bypassed out through the abdomen due to the spasms.
I hope that they too will settle down. There not daily, maybe every other or so. Thats a great imrpovement from 12 - 14 a day previously. Just be glad if I get none! Yeh, I guess I'm a wimp, but I'm really tired of this now.

I did try quite a few attempts at IC but there was no way it would pass through. Superstition is unlucky 13, well I was born on a 13th, so I now blame my parents for this grief . Its their fault !!!!!

Dave, that Clam op sounds a bit severe?

Al

[dangerousdave]

Dave, that Clam op sounds a bit severe?

All ops are severe - but what are the options
Pain and discomfort for a time of healing - or drug dependancy
In my case drugs were not working - SP was giving constant bladder infections (seriously) - absolutely no control of bladder function that was in danger of high pressures.
Didn't realy have a option

We all have to make personal decisions as we are all differant