www.incontinentsupport.org

Thanks again. Interesting to hear it might be more painful with my anatomy. I thought it would hurt more if you have a penis!

More problems today. No flow but then suddenly a massive bladder spasm and lots of wetting/bypassing and suddenly it started flowing - very slowly at first. It took a few hours to improve to point where bladder was continually empty. Nurse wants me to talk to doctor about increasing baclofen because they think the problem might be in part because my bladder is spasming and obstructing the catheter from emptying. Doc may be reluxtant to do so as previously though because of fears of more weakness (they're big on the idea of deconditioning from 7 months and counting of not sittinf up or leaving bed) but if it helps...have also been told to talk to Dr about potential cream for soreness.


Continence nurse didn't change catheter as it was a phone call. District didn't today as it had resolved partially and they dint want to tamper with it and risk more infection. they are talking about always having me left for an hour before doing anything when this happens.

Suprapubic was discussed again but involves hospital and hospital again if it blocks. Hoping to might convince urology to take me on via phone consultations.

Yeah, a few guys here on the forum use Foleys, one of whom had a problem with infection (which appears to have resolved), and another a problem with irritation, but no one seems to have experienced the pain that you (and I) have had. I would have thought that an indwelling catheter inserted into a penis would hurt more as well.

Wetters

I know what you mean you would think that sticking a tube up your penis would hurt but I have never had pain while having it done. It is a strange sensation but not un pleasant. They obviously use lube and that's probably the key. I was self cathing for a few months before I had the Foly and that was very easy to do.
I have never experienced a bladder spasm that I have read some people get but the end of my penis some times aches when I need to go and open the valve to empty.

Thankfully It does look like I have got on top of the infections by doing the same as others do that's having three days of antibiotics before the catheter is changed. I don't like doing this and wish I did not have to. It's the only down thing for me having a catheter.

I am on holiday at the moment with friends and family in Lanzarotity ( the Canary Islands ) and had been experiencing the valve coming out of the end of the catheter a few days before we came which means wet pants so I wore a diaper for the four hour flight just in case but need not have. I was worried about security my hand luggage was full of catheter bags and a couple of diapers just in case plus all my electrical stuff caharger and remote control for my spinal implant but it went through the scanner fine. I was in my chair and was frisced in it and he must have felt my leg bag which was half full but made no comment it was all fine.
While here I have been helped into the pool and the sea which is cristal clear and the catheter and valve have been great and totally discreet tucked in my shorts.
I have had a leg bag in my beach bag and when I need to go I just plug into the bag and empty my bladder all this done under a towl.

I hate to think what I would have done on this holiday without the catheter it would have been much more difficult with diapers but we would have managed. I was still using diapers when we planned this holiday back in January so I know we would have coped.

Thanks for reading all this. Catheters are not for everyone I know but if you can get it right they are a very good way of obtaining bladder control.

4wheeldave.

Glad it's working so well for you Dave.

Quick update that we are now trying upping my baclofen (muscle relevant) as district nurse thinks the problem could be my bladder spasming and occluding the catheter. Fingers crossed! Although it is frustrating that the same think that made me need the catheter could be what's stopping it working.

Now off to fiddle with it again since my bladder is filling up as well as the bag. It does this every day now.

Tangerine

I was wondering how you were doing?

It very well could be bladder spasms causing your problem.

I did have spasms once and it was bad. I had a procedure done in the hospital and they took my catheter out. After I was done the nurse inserted a new catheter that caused severe bladder pain. Later that night I went to the ER for pain and what they found was the nurse put in a 18f but with a 30cc balloon and only filled it with 5cc water.
This underinflating of the balloon let the catheter slip down into the urethra. The ER doctor pushed the catheter back in and filled it with full 30cc water this helped.

I do hope your problem gets taken care of a catheter should not be uncomfortable mine sure feels OK.

Please keep us informed.

Lyle

I used to but now I mostly have retention.

My problems have been more frequent but less severe. Sleep tonight was disturbed by pain and catheter. The pain feels like stinging nettles inside my urethra and the neck of the bladder only stronger. I'm a bit fed up of it all. Catheter not really flowing properly either eight now. It does usually but there is a definite link between this type of pain and it stopping working. I need to bring it up with my doctor but am nervous and its complicated by the fact I can't use the phone without getting more ill. The nurses said something about maybe needing some cream but that would only explain the pain at the first but of the urethra, not all the way up and in to the bladder? My gp thinks he is supportive but really is not. I need to talk to him because social services have cut my care drastically. Despite being completely bedbojnd (haven't gotten out of bed even for toilet since January 6th) my care has been cut to 2 hours 15 minutes per day. I'm having to pay extra just to survive and because the care agency won't even do visits that short I am having to top those up and look for a new agency- so I have that to sort and worry about too. I don't really fancy talking to my doctor amongst all this. He makes me feel uncomfortable and although I'd like a new one, he has attached himself so firmly to my case that I feel I can't get rid of him...but he's all talk. He has snapped at me to hurry up on the phone before. I checked and I'd be on for less than 5.minutes and discussed 4 things. It's all too much to deal with when I am still very sick.

Hi, tangerine. I'm very sorry that you are having multi-facet difficulty. If you don't mind my asking, what has caused you to be bedbound for over 7 months? What is your prognosis? If you prefer to converse via PM, please let me know.

My honest opinion is that you should seriously consider giving up the catheter in favor of pull-ups or pull-on diapers. Do you have arm strength and motor skill to pull a pull-up off and on in bed?

I know that my opinion of catheters is tainted by my distain for them, however, it appears that they are causing you an enormous amount of pain and difficulty on top of other problems that you're having.

Wetters

I have very severe ME. I suddenly relapsed due to multiple factors but tipping point was a uti. I was suddenly unable to sit up. It's very difficult to explain.

I used slip style pads aka diapers (I call them pads) along witht bedpan but was unable to Lee lying down. First it was difficult, then impossible, then incontinence whilst lying stopped too. Only way I could pee was with feet flat on bed and legs bent which was so exhausting I was only well enough to do it 3 times a day and making myself sick. add in dehydration from fluid restriction and something had to be done. I cannot sort pads myself and pre retention would have flooded a pull up anyway

Catheter was the best of a bunch of bad options. I fought for it for 8 weeks including getting an advocate involved.

Just tried to call gp and got a out of hours answerohone except its not out of hours!
Right now my urethra feels like it has stinging nettles in it. Sorry for the image! For some reason this shooting pain and atabbing is also spreading to the rectum and bones in between urethra and rectum :s

I wonder if the material could be the problem . It's latex. I'm allergic to silicone but the severity varies. I can hold my phone which has silicone on it with minimal affects but a cheaper iipad case affects me. I discovered allergy through irritation from nose pads on glasses as a kid. I don't want that irritation in my urethra!...but something is happening. I've had two brands now but both latex

I really hope your feeling better soon.

4wheeldave.