8 replies to this topic

[Dani C]

Hi!

My name's Dani, I'm a T8/9 para and have been in a chair since I was 18 months old (I'm now 24 years old).

The last few years I have been having terrible issues with my bladder and no doctor has been able to give me advice that I feel confident about.

At first I thought I was getting infection after infection, but with MSU tests it's come back (the majority of the time) clear.

Before all this started, I was catheterising every four to five hours and being dry. (And I could sleep for ten hours and not have to change the sheets in the morning!) Now, I'm lucky to go three hours and not be wet. My urologist has suggested the botox treatment, but I don't want to be spending that amount of money on something that doesn't seem to have a great rep from what I have read. I'm taking two Ditropan tablets, three times daily too, so I'm on my max with that.

I'm tired of changing the sheets in the morning, I hate not being able to go out for long periods of time (and if I do I have to take spare clothes). I really am at the end of my rope.

I was curious if anyone else has had any issues like this? What has been done to stop the leaking? There's gotta be more options out there.

Thanks for any help you guys can give me!

[millsonwheels]

Hi Dani, I am a T11 complete para with a supa-pubic catheta and I had to have a hysterectomy last year and a bowel repair. Afterwards I was incontinent...what a bugger!! Not fun as you well know, anyway went to my psycologist and he suggested a new anti-depressant for me (I wasn't on any but the condition was getting me really down) and it was new on the market called Cymbalta it helps with incontinence and neuropathic pain as well as depression. I have been dry since. I am 61 years old and only been in a chair for 6 years after falling from a ladder. A huge life change for me but my family has helped me keep it together. I have 6 dasughters and 14 grandchildren. I also live in Australia. I am in Coffs Harbour, Northern NSW. Hope this helps you...cheers Jeanie

[julibugs]

Hi Dani,

I have just had a long spell in hospital partly to get to the bottom of my repeated bladder infections, I was cathing 5 times a day and dry before my problems started. I had an indwelling cath put in for 6 weeks and then a flip/flow for a further 4 weeks, part of the issue with me was the huge quantities of urine I was producing.I could pass as much as 6.5L a day with an average of 5L.

After lots of investigation it was discovered that deterioration at S1 had damaged the nerve to the kidneys and made them overactive. after lots of debate I have settled for a routine of cathing ever 2-3 hours during the day and wearing a pad at night. If my husband has to turn me or give me meds during the night he will cath me at the same time. I have a super absorbant pad for the bed which I wash everyday and it saves the sheets, not sure where I got it but I will have a look and PM you.

My problem is very specific to my injury but worth mentioning to your urologist. It has affected other parts of my life - I have to use artificial tears, I'm always thirsty and have to moisturise my whole body twice a day to stop my skin peeling.

[Dani C]

Thanks a lot guys for your replies! It's nice to know that I'm not alone in this bladder issue! I'll definitely mention some of this to my doctor next time I see him.
I wear a pad 24/7 as I'm too scared not to. I go through so much money with them, but it's better than having to wash all the time! haha

Thanks again for your help! It'll be interesting to see if anyone else replies with anything else they may have tried.

=)

[qbounce]

Did you get an ultrasound on the bladder for possible stones? You could have bladder or kidney stones that block your catheter flow on the times you aren't getting anything. And they do cause spasms as well.

Or maybe your bladder went flaccid and no longer retains liquids? I've heard of this happening, anyway. But I'm not sure how you'd check for it.

[tyvin]

Well whatever is wrong with your bladder there is no reason to wake up with wet sheets. Prepare and wear a diaper (Depends etc...) at night until the concern is solved. I mean if you know the sheets are going to be wet why not prepare? As for the Botox Tx I've heard only good things about it but that's how it goes; everyone hears all kinds of differing opinions. It also sounds like you may need another opinion about your bladder.

Good luck

[Dani C]

Yeah I have had all the tests done and the doctor reckons it's all okay. I do wear pads to bed. I wear them all the time, but my sheets still end up wet no matter how well I prepare! haha (well, the sheet protector I have on it anyway...thankfully not all the sheets.)

I am going to get more opinions until I find a doctor that actually listens to me. The ones I see don't listen when I try to explain things to them.

All your opinions and suggestions have been very helpful though, so thanks once again!

[MrBump]

i have a spc.
can you leave an indwelling into a bag/bottle overnight similar to a spc ?

[airart1]

mike has a gizmo they put in his ball sack that closes the bladder off and he has to compress it to get the cath to go thru, but it works and he dont leak.....