41 replies to this topic

[DJ1]

Hi everyone

I am new to this site but I am at the end of my tether with regards to bladder problems.
I have a complete injury at T10 and have had a supra pubic catheter for years. I have been plagued with UTI’s which has driven me mad having to have anti biotic’s pretty much all the time.
I have just been in for a systoscopy (not sure about spelling) but it was a look inside my bladder. The outcome is that my bladder is now tiny (thimble size) due to the constant drainage and the consultant hasn’t suggested anything else yet. The nurses on the ward suggested a urostomy or something along those lines but to be honest I don’t want to do that.
Is there any alternatives?
Can they do bladder transplants?
Can they use a bladder from a pig? This might seem bizarre but I have heard someone speak about this.
Any information appreciated as I am going mad right now.
I should add that I have a urethral catheter in at the moment but I am bypassing this and constant wet or I have tried pads to dry it up but it leaves the inside of my thighs very read and they now have a rash on them.
I know I am asking a lot but can anyone shed some light on this subject?

I have searched the forum but not found anything that I feel can help, hence this post
Thanks in advance



DJ1

[JohnD]

Hi DJ1

I was in exactly the same situation a few years back and ended up having a clam enterocystoplasty (I think that is what it is called) where they take part of you own bowel to enlarge you bladder.

Now it has all settled down I still get some infections, but my bladder will now hold 500 ml on a good day.

I now use intermittent catheters.

John

Edited by JohnD, 15 September 2008 - 12:50 PM.

[DJ1]

Hi John

Thanks very much for this information, it really is good to know that there is light at the end of the tunnel so to speak.
I will do a search for this operation and see what comes from that.

Thanks again

DJ1

[JohnD]

DJ1

No problem, if you need to know any more let me know.

John

[DJ1]

Hi John

I had a quick look through some websites regarding this operation and the biggest thing that seems to be brought up is the possibility of mucus in the urine. Does this pose as a problem?

I really do appreciate the information

DJ1

[JohnD]

DJ1


Might have had a bit of mucus at first, can't really remember, but it has never been a problem with me.

Where abouts in the uk are you?



John

[DJ1]

Hi John

I am in bonny Scotland so nowhere near you unfortunately.

I have looked at numerous websites now and there does seem to be a mention about the possibility of mucus but I guess everyone is different.
Thanks for getting back to me as it does make a difference.

DJ1

[JohnD]

DJ1

No problem, any time.

John

[graphic]

I've had a clam enterocystoplasty as well, but be aware it's quite a major operation as I'm sure John will agree, and you will probably have quite a big scar on your stomach. My bladder now hold 600ml but because of a sphincterotomy I still constantly leak. Before my sphincter was cut I used to self cath and stayed dry nearly 24/7. The clam is well worth considering if you don't mind surgery.
Clive

[Yong]

The bladder augmentation done with your own bowel is actually an outdated method.

I just recently had a bladder aug three weeks ago using tissue from my own bladder. They had biopsied it two months prior, grew it in a lab, and then implanted it right onto my existing bladder.

It's done to reduce infections you may get using your own bowels.

[eleanorigby]

Yong, on Sep 17 2008, 07:23 AM, said:

The bladder augmentation done with your own bowel is actually an outdated method.

I just recently had a bladder aug three weeks ago using tissue from my own bladder. They had biopsied it two months prior, grew it in a lab, and then implanted it right onto my existing bladder.

It's done to reduce infections you may get using your own bowels.

That is amazing. No other comment, I just think it's amazing.

[nomis]

I had an augmentation using a section of bowel 17 years ago. Has worked fantastically. I do intermittent catheters - previously had a sphincterotomy but it healed over and is never leaks. The op was fairly major.

The technique mentioned by Yong using lab-grown bladder tissue sounds fantastic and maybe the way to go if available.

[DJ1]

Thanks to everyone for their coments, certainly food for thought.

I am amazed that they can grow tissue from your own bladder and use this but rest assured that I will be speaking to my consultant about this.

I have heard that the clam enterocystoplasty is a lengthy and major operation but if I get a resolution to the problems I am having as I am really fed up with the problems I am having.

I have not had a sphincterotomy so hopefully I will be able to stay dry if this is an option.

Can they use the bowel to hold more than 5 or 600ml as I know people who use ISC and can hold a lot more than that.

I do apprecaite al the answers as it is all good to hear and does give me something to go on.

many thanks

DJ1

[Yong]

Have you had urodynamics done on your bladder? Do you know the current size of it and the pressure when it gets full?

[DJ1]

Hi Yong

I had urodynamics done a year or so past and my bladder at that time would only hold 30ml and 10ml of that was with a catheter balloon so it was really small.
I was recently in for a systoscopy to check my bladder and the consultant said it was the size of a thimble so it seems to be getting smaller all the time.
I did have a supra pubic catheter in up until a few months ago, but when I went to change it one night I could not get the new one in and this is why I now have a urethral catheter in and I am looking for alternatives to supra pubic and urethral catheters.
I am still trying to get an appointment with my consultant for the results of the systoscopy as he did take a biopsy as there was inflammation in the bladder at the time of the check so I am really angry with his lack of urgency and the fact that I am by-passing the urethral catheter as well.
I am fed up with the whole scenario.
Sorry to rant on but I am just plain fed up.
DJ1

[ronz8674]

Hi DJ1 also in Sunny [!!!] Scotland have you tried condom caths been using them for years maybe a short term solution for you. Good luck with whatever and know all about frustration in fact depressing some times. fel free to email anytime

[DJ1]

Hi ronz8674

I have tried condom, sheaths numerous times but I suffer penile retraction which leads to leakage, wet trousers and lots of anger, swear words and more frustration.
Thanks for the suggestion though as everything is worth looking into.
DJ1

[DJ1]

Hi folks

Just a general question about the clam enterocystoplasty. I have not spoken to my urologist yet but have had a quick chat with a nurse who works with people who have suffered an SCI and she said there was a possibility of bowel problems after such an operation.

Has this been a problem for any of you who have had this procedure carried out?

She mentioned that because you are using part of the bowel there is a chance of having accidents from the bowel.
Now I a more confused that I was before as I thought they would have sectioned a piece of bladder and designated this for use with the bladder.

Can anyone shed any light on this part of the operation?

Any information gratefully appreciated.
DJ1

[JohnD]

DJ1

I know it would be different for each person, but I have had no bowel problems in the time (at least 10 years) I have had my clam.

John

[SCOTIE]

there is a drug called lyneral that is meant to increase the size of the bladder, my son has been on it for couple of years now. he is getting uti's at the moment but he has had 2 years of not getting them.
might be worth mentioning to your doctor

[graphic]

Never had any bowel problems as a result of the clam and wasn't advised that there there might be. With regards to penile retraction, have you tried Manfred Sauer extra thin latex sheaths? I use these with medical adhesive and they're very secure. I don't have a problem with retraction but they're supposed to be good in that situation. here's a link:
http://www.manfredsa....uk/sheaths.asp
The rep is a chair user and is most helpful and easy to chat to. Might be worth your while giving him a ring.

[Yong]

DJ1, i think my situation was probably identical to yours. Penile retraction so the condom doesn't stay on...then you pee all over yourself.

As with the clam, some people have reported saying that they did have bowel issues. It's a hit or miss...you never know how you'll react. My research coordinator told me that some people have severe diarrhea for months after the surgery. But the biggest issue is that the bowel is a mucus secreting organ and that once it's attached to your bladder, it will secrete mucus that may end up in your urine and cause some blockage.

The surgery I had done isn't widely known or done yet...as I was the 5th person in the country to have it done. But it's a starting point and hopefully it'll replace the bladder aug with using bowels.

As for the medicine suggestions, if DJ1 is anything like how I was...nothing can solve leakage. I've tried enablex...ditropan...both of them together...and not even a wink of difference. Surgery was the way for me.

[Izziwhizzi]

SCOTIE, on Oct 1 2008, 01:29 PM, said:

there is a drug called lyneral that is meant to increase the size of the bladder, my son has been on it for couple of years now. he is getting uti's at the moment but he has had 2 years of not getting them.
might be worth mentioning to your doctor

I've just googled it and there doesn't seem to be a drug called that. There is a lynoral, but thats for menopause (hot flushes, brittle bones) so I guess its not that. Would be interested if anything could stretch my bladder without surgery!!

I xx

[DJ1]

Hi Scotie

I am sure the drug you refer to is Lyrinel which I have used. My urologist put me on Ditropan and both are used to stop muscle spasm. I don't know if you are talking about something else. I take 30Mg Lyrinel a day and this was reduced from 40Mg which is twice the recommended dose. This is what the urologist put me on to stop bladder spasms as this was another problem I was experiencing. I don't know about enlarging the bladder but I don't know hence my initial post.

With regards to sheaths as suggested by graphic, I have tried numerous sheaths and ended up having sores on my penis due to using different adhesives so this was not good. Stephen Burns is the guy you are referring to and he no longer works for Manfred Sauer but thanks for the suggestion anyway.

Yong, I suggested the operation you had to the nurse I spoke to and it is still in very early clinical trials here in the UK as far as the nurse told me so this really isn't an option although I wish it was.

I do know the bowel creates mucus and this is possibly an irritant in the bladder and the cause of infection but to be honest I am utterly fed up with the whole scenario as I feel the urologist is not being very good at suggesting things, well I have not even been able to see him yet since my systoscopy so this is pi**ing me off just now in both physical and mental state but my hands are tied until he gets the proverbial finger out so to speak.

Thanks again for all suggestions, I do appreciate the time you guys have taken to reply

DJ1

[Izziwhizzi]

Thanks for that drug info DJ1

I like you, and thousands other catheter users have a really small bladder which gives me trouble from time to time. It seems strange that there is nothing to allow it to keep some size.

I am female though with an indwelling urethral catheter, and sometimes my bladder will reject my catheter (balloon and all). I was getting a bit freaky with it when it was doing it when I sat up with no outside stimulus. Its setteled back down now, but you never know.

That bladder growing stuff that Yong mentioned sounds really interesting so I hope that happens quickly over here.

Good luck with seeing you urologist & hope he is a good one when you do get to see him!

I xx

[DJ1]

Hi Izzi

I would love to see the bladder regeneration that Yong has spoken about over here too but when I was in the spinal unit recently they said it was in very early stages and there was no clinical tests carried out in the UK yet so it would not be available for some time. They basically said to me that I shouldn't hold my breath waiting on it so unfortunately I am not holding out any hope of it happening to me.
I would love to see it happen here but I need to get something done sooner rather than later as the problems are driving me nuts.
Fingers crossed I get something sorted in the near future and if so I will be sure to post how I get on.

Cheers

DJ1

[JohnD]

DJ1

Good luck mate, I know how problems like this can really get you down.

John

[ryan Kruse]

DJ1, on Sep 15 2008, 08:11 AM, said:

I have just been in for a systoscopy (not sure about spelling) but it was a look inside my bladder. The outcome is that my bladder is now tiny (thimble size) due to the constant drainage and the consultant hasn’t suggested anything else yet.

Same problem. I'm wondering if we can block the catheter long enough to become full but once it is about leak we release and drain. Continuing this to stretch the bladder to hold more over time. I get slight sweats when I'm about to void if my bag is full and my bladder becomes full too. So I can tell when I need to go. Has anyone else tried this?

[dolly]

ryan Kruse, on Oct 3 2008, 06:42 PM, said:

DJ1, on Sep 15 2008, 08:11 AM, said:

I have just been in for a systoscopy (not sure about spelling) but it was a look inside my bladder. The outcome is that my bladder is now tiny (thimble size) due to the constant drainage and the consultant hasn’t suggested anything else yet.

Same problem. I'm wondering if we can block the catheter long enough to become full but once it is about leak we release and drain. Continuing this to stretch the bladder to hold more over time. I get slight sweats when I'm about to void if my bag is full and my bladder becomes full too. So I can tell when I need to go. Has anyone else tried this?

hey
ive had a sp catheter for two years now, never had a problem because i have a flipflow on it and only empty it every five hrs or so and its normally 500mls. im not allowed passed 600. but wen i went to the drs they filled it to 1200 to check the pressure and it was fine. no leaking for 10 months. works for me

[Izziwhizzi]

ryan Kruse, on Oct 3 2008, 06:42 PM, said:

DJ1, on Sep 15 2008, 08:11 AM, said:

I have just been in for a systoscopy (not sure about spelling) but it was a look inside my bladder. The outcome is that my bladder is now tiny (thimble size) due to the constant drainage and the consultant hasn’t suggested anything else yet.

Same problem. I'm wondering if we can block the catheter long enough to become full but once it is about leak we release and drain. Continuing this to stretch the bladder to hold more over time. I get slight sweats when I'm about to void if my bag is full and my bladder becomes full too. So I can tell when I need to go. Has anyone else tried this?

That may be OK, but I get AD when I push myself to the voiding level.

I