New User - 46yo Male

[njclifford]

Hey all,

Am a 46yo male with IC - probably for at least 10 years but cannot recall a specific incident....

Am in Brisbane, Australia - have seen a number of urologists - some have referred to others, and the most recent one have been seeing for 3 yrs, and we have worked our way down the tree to bladder removal - an ileal conduit...... but am hesitant..

History - have tried all medication under the sun, including Vesicare, Elmirol, Flomaxtra, pain relief including Betmiga, Tramadol etc.

Have had 9 cystoscopies, one of the first was a hydrodistention that ended up rupturing my bladder causing massive issues. Due to this I have psychological issues and CANNOT self-catheterize.

Have had a BNI (bladder neck incision) for flow improvement and also Botox. Also have a TENS machine I use on my spine for pain management (hit and miss).

Am going to the toilet around 30+ times a 24hr period. Sometimes 15 min apart or more..... am waking close to every hour for toilet also.

It runs my whole life - every thing I do I need to compensate for this and am lucky to have an understanding wife and 3 kids.

My main wish is to be able to sit through a movie with my kids, go to a event without needing a toilet all the time, play frisbee in the park with the kids... go for a drive without pulling over to pee!!!

Am keen to hear what people do to enable long car drives / movies / work meetings etc. I haven't tried nappies yet, but have them here.... also for males, any advice on long trips? Not sure if condoms with a bag are an option?

Any help welcome!!

Thanks

Nick.

[tormod]

Hi and welcome! Sorry to hear about how the disease has taken over your life.

I had neobladder surgery in December 2018 and I got my life back after years and years of pain and problems. As you describe, the need to empty the bladder at all times was a major problem for me, and the pain and cramps connected to this were intolerable. You can read my story here: https://forum.ic-network.com/forum/p...stoscopy-today (I had to change username after a forum upgrade). You can also find more info about my surgery in the bladder removal forum.

I don’t frequent these forums any more but they were a huge support for me when I was ill.

Condoms with bags were useless for me because eventually I could not urinate at all due to horrible pain. So I had to self-cath 25+ times per day.

I hope you find relief.