5 replies to this topic

[katmosis]

Hello

My girlfriend and I had been in a car accident 5 years ago, she is complete C5.
She used to have indwelling catheter, but lately she can't stand them anymore. She didn't / doesn't have any serious infection, she feels ok when wearing diapers. But as soon as the nurse / doctor inserts the catheter she will be freezing, sweating and the catheter will leak. We tried latex, silicon cover and silicon catheter, it doesn't seem to matter.
This happens after the monthly change of catheter, she has this reaction to the new one. Then she would wear diapers for a while, till for no apparent reason a catheter works again.
She tried medication for possible bladder spasms (there were many, I don't remember the names), didn't work and dried her eyes and mouth so much she had to quit them.
I can't watch the nurse coming over day after day and all that she goes through. She has terrible headaches lasting for hours after every try.

Does anyone have an idea what could be causing it or a something that would stop her suffering?

[pinkcloud]

[quote name='katmosis' timestamp='1307899870' post='234774']

Hi there

I'm not complete nor need a permanent catheter - I do however have no feeling of bladder, bowel, or gynaecology internal organ. So i dont feel a full bladder/bowel/wind or period pains.

How do i know when to go, well me legs go into spasm, the bottom of me feet feel like they are being stabbed and I get pain in me left groin, like sciatica which shoots nerve pain down to me toes and

I go freeing cold, grey colour and feel really ill - if i cant empty the contents after this warning sign I go boiling hot above injury level, sweat, stuffy nose....I descibe it like this - me body either tries to 'freeze' things ot of me - or it tries to 'burn' things out of me, not a medical explanation by any means. OOOhhh the headaches, felt like me head would explode from pressure, especially in the left eye and tingling at the top of me head.

The doctors say its me autonomic system thats gone wrong that causes this, change cold = unknown, hot = AD. Its horrifying, i got tablets to lower BP called Nifedipine. Best thing to do is to get rid of whats causing the problem below injury - well if its the catheter i guess you cant. Just try to be calm to get things level again,ok its an unconcious progress thats happening yet thinking calm can help it getting worse sometimes, if the body allows.

I hope this helps in some small way.

Edited by pinkcloud, 12 June 2011 - 07:18 PM.

[mellowgator]

dear kat,

your girlfriend is probably having ad from her cathater. has she tried taking Nifedipine? if her ad can't be controled by medication there is a procedure called a superpubic which will allow her to cath or have a leg bag hooked up through her belly button.

hope she starts to feel better. i'm a c 6 quad and am able to self cath but there are times like when i travel that i wear a foley. i'm not sure why after 5 years she is having so much problem. i wonder if the foley has damaged her uretha? is there any blood involved when she caths?

hope some of this helps. i'm just brainstorming.


mellowgator

[katmosis]

No blood and no urethra damage, we had that checked. Supra pubic isn't an option, somebody freaked her out with a story about supra pubic going wrong, she refuses to discuss it any further.

I will suggest Nifedipine, hope it helps. Thank you.

[switney]

I had that feeling before when i was still using a foley Catheta. I had to remove it. Now i selfcatheterize and was beta till i got AD. I think you shld try and check if she has AD and treat it fast.

[darryl]

katmosis, on 12 June 2011 - 05:31 PM, said:

Hello

My girlfriend and I had been in a car accident 5 years ago, she is complete C5.
She used to have indwelling catheter, but lately she can't stand them anymore. She didn't / doesn't have any serious infection, she feels ok when wearing diapers. But as soon as the nurse / doctor inserts the catheter she will be freezing, sweating and the catheter will leak. We tried latex, silicon cover and silicon catheter, it doesn't seem to matter.
This happens after the monthly change of catheter, she has this reaction to the new one. Then she would wear diapers for a while, till for no apparent reason a catheter works again.
She tried medication for possible bladder spasms (there were many, I don't remember the names), didn't work and dried her eyes and mouth so much she had to quit them.
I can't watch the nurse coming over day after day and all that she goes through. She has terrible headaches lasting for hours after every try.

Does anyone have an idea what could be causing it or a something that would stop her suffering?

If the docs' have not yet mentioned Autonomic Dysreflexia get a new doctor. AD is a life threatening occurrence usually occuring from T-6 and above and brought on by any 'noxious' stimulus such as bladder distention, catheters, any physical injury (once had to go to emerg after tearing a toe nail off BP went to 220/201...not a good thing )
Bladder stones or even a spastic sphincter muscle irritated by the cath could easily cause this.

Hope this helps and you get the real answer soon.
dk

Edited by darryl, 27 January 2012 - 08:27 AM.