My B’s Catheter is a constant cause for worry for me, so I’m almost OC in inspecting Ts catheter (placement, hygiene etc) even with the carers around.
We are seeing the urologist next Tuesday and discuss other options, sub pubic have been suggested several times as less traumatic and less prone to infection (?).
Any opinions or advise on experience on sub-pubic vs catheter will be highly appreciated.
Thanks.
Not sure what you mean by sub pubic. However I can't praise Convenes enough. They are like a sheath which is put on the penis. They are brilliant. The urine goes into a bag like a cathether bag but must be supplied with the convenes. Try them. I found they were safe and cut back on the washing. You can get something to put under sheets too called a Kylie sheet here. It protects the mattress of your bed if he is still in it?
Marie x
George has a catheter it has worked well for him, at the beginning he had a size 14 but quite a few infections, doctor suggested an 18 which touch wood no infection for nearly a year before he had an infection, he drink pure cranberry juice in carbonated water. He didn’t want a sub-cubic catheter, I think there are pros and cons about them, but we are happy, forgot to say we flush the catheter 3 times a week. Yvonne xxxx
Thanks for your reply.
My B is on cranberry juice and Berrocca vitamin C to ward off infections too, but he is so fiddly at night and gets up at night dragging his night bag and all along with him, that it’s getting too challenging to manage along with sleepless nights. 😩
George can’t walk but we have a leg bag holder/urine bag holder, keeps it in place xxxx
We have the leg bag holder too, it’s great with day bag, BUT doesn’t help at night with the night bag when my B goes on his nocturnal wanderings!😩
Oh one problem after the other xxxx
Yvonne that explains why you haven't mentioned him having an infection for a while now! Glad it is working for you. Oh and by the way the photo of the cakes was yummy enough to eat!! Hope your daughter was happy?
Marie x
She was very happy so were the people at the party . Xxxx
I bet they were delighted. How you managed to do that and look after George I don't know. Take care of yourself Yvonne.
Marie x
It relaxes me but I am so tired Marie I can explain how much, went to get out of bed and the room is spinning xxxxx
Yvonne glad it relaxes you but you are obviously really tired. Take it easy and take it slow when getting out of bed. If it continues go to your doctor.
Marie x
Marie feeling really rough today, going to see how I feel tomorrow. Yvonne xxxxx
Hope you feeling better Yvonne!
Still feeling a bit dizzy but much better thank you xxxxx
Marie, this sounds like a good alternative. It’s what is called a condom catheter in the US I think? Do you ever have a problem with it coming off or leaking? Wondering if that is why you need something to protect the mattress? We’re currently using a portable urinal that empties into a catheter bag. It’s been great up until the past few weeks when my husband has been waking multiple times at night asking to use it, but then he can’t actually urinate.
Thanks
Megabrew,
Sadly my husband died last year. However I only had a couple of problems and think that was lack of experience with one of the carers! Hence the use of the Kylie sheet just in case! When it was needed it was great but thankfully only needed it twice. I learnt what to do myself with the convenes and had no problems! I have to say I think they must rate as the greatest things ever invented! I had never heard of them until a nurse mentioned them. It was a passing comment too!
My husband was only cathterised when he suffered a really bad bout of aspiration pneumonia and ended up in hospital. As he was unconscious I guess they thought that was the best way to go? He wasn't expected to last the day but fooled us all by regaining consciousness and lasting 3 weeks before sadly he died.
Like lots of others who have lost loved ones I still stay on the site and hope I can sometimes help others who are going through this nightmare.
Good luck to you on Thursday. I can see if your brother is retaining urine a convene might not be an option. My husband did that a couple if times so I told him he would get a bad infection if he didn't pass urine and he would need a cathather. That was enough...he started to pass urine!
Marie x
Thanks Marie❤️
And we are so grateful that you do stay here with us Marie!!!
Always appreciate your experience and wisdom 
Anne G..... XXX
Thanks Marie for still continuing to post, it's very much appreciated. Hope you are well. Lots of love Nanny857xx
Nanny, I actually think it helps me to help others. I hope it helps those going through the hell of this condition too.
Marie x
And your (and other past carers) words of wisdom is very much appreciated.
Thank you for hanging around to help us, who are still going through the PSP journey!
Mx
Heidi-Ann having one of those days!! Read the answer to Megabrew because I answered you in her post as well as her!! Need to lie down I think! 😊
Marie x
Thank you, Marie! That was really helpful. It’s so kind of you to continue to stay connected on the site and offer things that have worked for you.
Blessings, Heidi 💕
First of all, I’m so sorry you’re going through this. I don’t have any advice for you unfortunately, but just wanted to say that I’m right now in the process of considering a catheter for my husband. I’ll be interested to hear what others say about the Foley catheter vs. a Supra pubic. Blessings to you as you care for your brother.
Thanks ❤️
Hi Marie
Sorry I meant supra pubic catheter.
Unfortunately convene is NOT an option given to us at the hospital as my B is retaining urine, so they said convene will not work.
I will certainly ask the Urologist about it again on Tuesday.
Thanks
Mx
One thing I should mention is it really is not a good idea for anyone with PSP to have a general anaesthetic. Not sure about a local or epidural. I think I would be wary of an epidural as it might damage the myelin sheath that covers the spine? A local have no idea about either. Just my thoughts and thinking what would I do in your situation.
You need to get your Neurologist to talk you through this as other doctors usually have no knowledge of PSP. They take chances and patients and carers suffer. Essentially because of their ignorance of PSP more damage can be done. Talk to the Neurologist!
Marie x
Thanks Marie, it was our neurologist that suggested supra pubic,
I have noted the risk of anaesthetic though.
Mx
I would contact your local urology nurse, have a chat with her before yout consultation, she will give you more time.
Rog had a urinary catheter for over two years, he had severe infections the first two times it was changed, but after that he had antibiotic cover when changed and no probs.
Supra pubic is invasive would require hospital admission if blocked etc DN's would not touch it, why not leave as it is as it is if no problems?
Julie
Oh thanks for your advise Julie, unfortunately we don’t have a urologist nurse yet and it’s a bank holiday today and our Appointment with the Urologist is tomorrow morning.
We will however consider all the pros and cons, and will definitely speak to a Urologist nurse before we make a decision.
Mx
My husband, TJ, has had a SPC for two years now. This was done originally because of his spinal cord injury. He hasn't had many problems other than a couple of UTI's, one of which he acquired due to his lack of care in respite. He has it changed every four weeks. I don't know how often the others need changing but other than having to have a nurse change it, it is not a problem. Hope this helps.
Caz49
Thanks for your input Caz.
Hiya
Nigel has had a supra-pubic catheter for a couple of years. Our District Nurse tells us that is classified as 'the gold standard' in the UK. He finds it far more comfortable than the urethral one and changing it is more comfortable too. He does still get infections but not as frequently.
I would suggest you and B, if he is able to do so, discuss it with the urologist and take note of their reasons for suggesting it. It is yours and B's decision in the end but we have not regretted it.
Good luck
Ali B
Thanks Ali B, we will certainly weight all the odds before making a decision. It’s a big decision to make so we need to consider it carefully. Mx
Catheter care
Catheter???
