After RC surgery

Mrstenseman, welcome to the group. My OH has not needed RC so far so I cannot offer any direct help on that. But as I read your post I just wanted you to have a reply quickly as I happened to be here. My OH has had major orthopaedic work and a 'mental health' admission in the last 4 years. I put it in quotes because actually I have since come to understand it was an extreme Asperger's stress-induced meltdown, but no-one recognised this and they treated him [badly] for other things he does not have. The episode left us both with probable PTSD according to our GP and I really do feel for you on this, when you expected healing surroundings and got the reverse from staff it is truly devastating; you were vulnerable because of your medical need and in whatever way they abused you. I told the CQC about it and they have taken action, but we were too traumatised to even put in the formal complaint, so power to your elbow in pursuing it. He also did not get treated accurately on the orthopaedic leg issue as regards the Asperger's [some meds do not work the same for many people on the spectrum but they mostly refused to acknowledge this].

So I wish you the very very best, our local PALS were completely inaccessible due to covid, and I'm sure all the neobladder folk will be along presently with experiences and hopefully tips for you, 

Denby

Hello Denby,

Thanks for a quick reply,

My doctor eventually contacted PALS on my behalf because every time I tried to open the page to start a complaint I would have a breakdown, so thanks to my understanding doctor I have had help with this, but it has taken 11 months to get this far, expecting a call from them next week to proceed again, last time they called I was back in  different hospital having yet more treatment for another bout of illness, my doctor wouldn't send me back to the hospital I had my surgeries in, but I still had a meltdown and locked myself in the bathroom for more than an hour, fortunately the staff were fantastic in helping me, but it still shouldn't have happened in the first place

Poor poor you! It certainly should not have happened!

The only other thing I will suggest is that, always always check with a good pharmacist first for compatibility with any meds etc, a good quality multivitamin & mineral tablet is always a good idea especially after a roller coaster medical saga like yours. Good levels of zinc will also help your mood/resilience/healing. Check the actual ingredient list on the label with a magnifying glass-if the zinc is 'zinc oxide' in short it is not a good quality supplement, choose another one. You can have extra zinc especially if suffering from infections as long as pharmacist says ok. Don't take with a wheat-fibre meal for best absorption.  I also take 500mg of Vit C twice a day, but as a time-release one. If you can't get your hands on time release you would need to take less, more often, as the body cannot store it. Fish oils are also useful for helping make new cell walls and other good things.

If you can afford it you will get better nutrition from having as much of your diet organic as possible. A delivery box is an economic way of doing this and saves lugging veg from the shops.

And if you are not already doing the above kind of things, by doing any of them you will be taking back the control to some extent that has been wrongly snatched from you.

Regards, Denby

Thank you,

My husband has been looking after me really well, I am just getting back to cooking meals most days, 

I am eating ots of good food all fresh prepared and fruits too, along with all the tablets I have to take daily, we have control️

It's been one hel of a journey that's not over yet

Hi,We were in touch last year,I’ve sent you a private message.Love Jane

What a rotten time you have had. I have neo too & know how unpredictable they can be in the early years. I have heard of other people who have to start training again after a further op. Hopefully it won't take so long to get back to where you were. Best wishes for a smoother path ahead.