6 replies to this topic

[steviek]

Best thing that I have had done, the operation wasn't nice but not having to wear convenes is heaven, I advise anyone to have a cystoplasty operation, all I do now is catheterise 3-4 times a day. The best part is going to bed without a bag and no danger of wet beds.

[brython2]

You mean clamshell cystoplasty using a section of bowel?
Had it done 4 months ago. 13 yrs of convenes + 1 yr of cathing had left my bladder wall too thick, hence high pressures.
I really didn’t want to go through the whole thing, cutting bowels? Cutting the bladder down the middle? Two different tissues stitched together, arrgh! It was either that or a sphincterotomy, and I didn’t fancy that either! “You’ll risk renal problems if you don’t do something” said the Urologist!

So after chickening out once, I bit the bullet and reluctantly went for it. The op. was ok, although I left this plain of existence for 8 hrs; not much pain, they give you enough drugs and epidural and stuff for that.

BUT that bloody Picolax! Jeezus! I’m still not right after it. I guess it clears all the good bacteria out of your system.
I spent 3 weeks post op. in a general hospital ward (as the main source of entertainment for the able bodders who weren't used to seeing a wheelchair whizz about to and fro), most of the time afraid to move for fear of crapping myself after the Picolax. Destroyed 3 pairs of tracksuit bottoms and 1 trainer (you don’t want to know how, thought I'd forseen everything, but!), used up my supply of Jay cushion covers in a week!
Had to share a toilet seat with 30 or so other able-bodied ward users (Shocking how dirty some people are hygiene wise when it comes to toilet seats, I felt like staying on as a toilet cleaner after all the cleaning up experience I had, not nice!)

Well 4 months on and I hope it’s all worth it, got to watch the fluid intakes now, especially before bed. The mucous can be a bugger, cathed twice this morning and hardly got a drop out, even though I knew there was more in there. Just did one an hour ago and got 700mls which is stretching it a bit. I have to admit the mucous isn’t so bad as in the first two months, got to get the fluid intake just right to counter it. I cath every 3-4 hrs now.
Still early days, but as things stand, even though “I didn’t want the bloody thing” (my favorite line) I’m glad I chose this option in preference to a sphincterotomy (Neither option was great!).
I’ll have to endure a yearly scope up the you know what to check all’s ok from now on.

I hope things are going to be ok now and I can stay away from Hospitals and Doctors for a good few years! I wish you the same!

[steviek]

Plenty of bladder washouts to begin with, I have had my cystoplasty done in 2002, it is the best thing that I have ever done, it has brought some normality back, what can possibly be normal about a convene and urine bag and what can be more unslightly than a bag full of pee-no regrets whatsoever.

[agentwalker]

i'm getting pushed in this direction at the moment.

Previously I was on an indwelling urethra catheter with a flip flow valve which was fine for me, no leaks spasms etc and could change it myself every 3 weeks.

Then after my yearly trip to the hospital it was recommended that long term a superpubic would be the best option as people over time are known to develop urethra problems with the catheter wearing it out. So I went along with things and had that done. Had the Superpubic in now for nearly a year and no probs apart from bad spasms if I fully empty the bladder, this means I can't leave it on free drainage over night but this insent bad as my body is good in the sense that it wakes me up when the bladders full so I can release.

Now their suggesting this Cystoplasty not because I'm having any problems or anything just that in the long term this is supposed to be better.

So at the moment i've got a super-pubic which I'm managing fine apart from nipping back to the hospital every 6 weeks to get it changed. No Bowl problems etc.
From what I've read this Cystoplasty can result in a whole load of complications including increases in infections, diarrhoea, increase chances of bladder cancer etc. All this on the chance that it MIGHT improve my standard of living in the future.

So any suggestions people? my feelings at the moment are to stay well clear until there comes a time when if problems develop this is an option to sort things.

[Tetracyclone]

That is what I would/will do- wait until problems manifest.. I could well be dead before then.

[brython2]

agentwalker, on Jan 7 2010, 08:38 PM, said:

Now their suggesting this Cystoplasty not because I'm having any problems or anything just that in the long term this is supposed to be better.

Hard to know what to say.
Explore ALL other choices first. If you're happy and your pressures are safe, bide your time. Not long from now* they'll be able to grow bladder tissue and the whole bowel graft can be avoided.
I only went for this as a last resort.

Good luck!

[agentwalker]

Thanks people of the info, got a meeting about this the urology sister in a months time to go through the pros and cons of this procedure but i think i'll leave this well alone until something forces me to go this way