Mitrofanoff catheter.

[ikeakia]

Does anyone have a child with one?

My son had one created 6 weeks ago and we’re now at the point of intermittent catheterisation. He’s is majorly struggling to cope with this and I wondered if anyone had any advice from a personal perspective? We’re having to restrain him just to drain him off. He’s had an awful recovery anyway and I just want to help him.

Little bump for traffic.

Is it painful or not happy with catheterising? It may be worth getting some gel on prescription if it’s sore.

We’ve got everything needed. Medical lubricant is used. It causes a spasm when the catheter is pushed in through the bladder wall and he actively resists being touched, let alone allowing the catheterisation.

How old is he? May be worth a trip to the doctors to see about some antispasmodic medication. Bladder spasms can be incredibly painful. Are you on Facebook? There’s quite a few mitro groups who may be able to give some advice.

He’s had it before, but not at the moment. Our GP’s are useless as they’d never heard of a mitro before. We see the surgeon in two weeks, but DS won’t even come in the bathroom to attempt catheterising. We’ve had to restrain him in order to do so to prevent urine retention. It’s the mental aspect he’s struggling with mainly, once we’ve catheterised him he’s calmed down. He’s just really scared of the whole thing now after a bad recovery.

He’s 10 btw.

Has he had any help from the hospital play service before or after? They can help talk through his anxiety, coping strategies, relaxation techniques etc. Or a specialist nurse from clinic?

We’ve spent four days this week with both his Play Specialist and the specialist nurse. We’ve tried everything.

My DD who is now 15 had a Mitrofanoff done when she was 9 years old, she flinched when she does it too as she occasionally hits her bladder wall and has on occasion made it bleed by doing so.

Does your on have any other medical conditions at all, my daughter has Spina Bifida so cannot feel it although still has the spasms.

Could you possibly try distraction techniques (tv or games, ipad etc and maybe catheterising him elsewhere like in his room and cath him into an old jug.

My daughter does this as her catheters aren't long enough to reach the toilet.

He also has Down Syndrome. He understands the process and why we need to do very well which is why we went down this road. He just can’t overcome the fear of catheterisation as he can feel it go through quite badly which we didn’t know until this week when we started draining using catheters. I’m hoping he will grow more accustomed but having to restrain him isn’t helping. He refuses all distraction/bribery/promise of fun things, he has no interest in them at all.

Could you ask for a different size catheter as maybe its a bit too big ?

My daughter uses Optismooth Mitro which has 4 holes at the end of the catheter to drain the urine quicker, maybe something like this could help.

Have you contacted your suppliers of the catheters (Charter, Bullen etc) to see if they could send you any different samples of other types to use ?

We use the one with four holes already. It doesn’t take long to catheterise and drain it all off, less than a minute but the whole of that minute he’s fighting like crazy. Width wise it’s already small, I don’t think they go any thinner, we’ve had three different types. It’s just so hard for him.

Does anyone think I’d have much luck asking my doctors to refer him for therapy if this continues? It’s been another bad day and I know restraining him won’t be helping him overcome his issues but we’ve got no other option to drain him off. He goes back to school Tuesday and I can’t see for the life of me how he’ll cope.

Its definitely worth a try, how was he initially after having it done when it was healed ? did he have any issues then or is it just recently ?

He’s only 6 weeks post op so it’s all new. It’s only been this week after his clamp and release that he’s really struggled, but his recovery was quite tough needing multiple hospital trips for extra care. He has mostly been fine after the op, just fed up of all the intervention.