Urethra and Mitrofanoff

Primary progressive MS
1

Hi All

So, a couple of weeks ago I posted about a Mitrofanoff procedure. This is where a urology surgeon creates a new conduit into your bladder using the appendix and through which you ISC.

I saw the surgeon today and she has agreed to give it a go, but with a caveat: ie. that it may not resolve the issue I have which is a constant feeling of needing to urinate. She said because it could be a nerve problem and therefore not actually curable by going into the bladder by a different route.

My feeling has been is that the problem is essentially due to damaging the urethra by ISCing all the time and was thinking that by not using the urethra the feeling would just go. But she has said it may not work like that. So I could end up with having had the surgery and still having the constant urge to wee.

Ultimately, if that happened, I would be back at the point I’m at now. Since I would be able to just revert to urethral ISC.

So what have I got to lose? It’s just a bit of surgery. And some time of recovery.

Has anyone got any thoughts they could help me with? Either anyone who’s had similar problems with feeling like urethral catheters are causing trauma to the urethra. And if so, have you managed to do anything about it? Or anyone who’s just had to learn to live with a constant feeling of needing to wee (and if you have, how?) Or of course anyone who’s either had a Mitrofanoff or considered and decided against it.

I’ve said that I’ll go ahead with the surgery, taking on board the risk that it may not work, but obviously I still have a couple or so months during which time I could still change my mind, so any thoughts, from anyone, are welcome.

Btw, I don’t have bladder or urethral spasms, so that’s not the issue, urodynamic testing didn’t show anything up at all. And I don’t feel like it is spasm related.

Thanks for reading and if you can help me by thinking of questions, thoughts, solutions (if there are any?), I’d be most grateful.

Sue

(I’m posting this on both PP and EL because some people tend to stick to mostly one or the other.)

2

Hi Sue, I am afraid that I know very little about urological problems. UCL have a fantastic reputation for urology so would it be worth having a second opinion from one of the big teaching hospitals? Personally I would not want to take the risk of anaesthesia with no guarantees of success but then it is not me who has to put up with such a horrible sensation. Whatever you decide I wish you well. Sue

3

Oh Sue, I’m sorry your hope of Mitrofanoff is slightly dashed by the potential doubt from your Urologist.

Interestingly, my G.Ps nurse said nerve damage can confuse the messages from my brain to my bladder/urethra. She explained a Urologist or continence service wouldn’t necessarily completely understand the intricacies of PPMS which can prevent a clear instruction from our brain to part of our body & our MS nerve damage can give a completely different outcome than physical. She’s learned so much because her own Dad has PPMS. Thankfully your Urologist does know.

Of course you already know this & more. Weighing up the risks v rewards, can you ask your Neuro before booking surgery? Wish I could offer help. I think the Urologist could have a valid point, particularly as the SPC didn’t work out for you & MS damage is the sphincters.

Good luck hon, Chrissie x

4

Thank you both Sue and Chrissie.

Bladders are a bloody nuisance. And I know I am not alone in that, so many of us live at the mercy of our badly behaved urological systems.

I’m seeing my MS nurse in a couple of days (she was my bowel and bladder nurse for a few years so is an excellent sounding board) and will be discussing it with her. Also the surgeon did say she’d arrange for an appointment with a urology nurse who’d be supporting me with the Mitrofanoff.

So at the present time, I’m discussing with all and sundry, keep debating the issue with my OH and am keeping options open for a few weeks at least before making a final decision.

I will let you know what the outcome of the discussions are.

Sue x