My husband's now got a catheter - since July - due to an enlarged prostate. He's been told that prostate surgery will be pretty pointless as due to PD, he will be highly likely to be incontinent after it. So a 'suprapubic' catheter is recommended. which would mean an end to the soreness, discomfort, restricted mobility and recurrent infections with the more conventional kind. Staring a lifetime of catheter bags in the face. And lonely. And frankly, sick to death of discussing leg straps and catheter bags and soreness and the total, total lack of life we have at the mo. He had been going to the gym regularly, doing the shopping, gardening, occasional (albeit short) walks, just enjoying life. Now he's not enjoying anything because he's constantly uncomfortable and frequently sore. It's his birthday next week and I don't think he even wants to celebrate it.
Rant nearly done; just feeling rather rubbish and because of PD he forgets about how I feel. I don't blame him, it must be awful.
I'm really sorry to hear about what you've both been going through, it does sound really difficult. Have you been able to talk to any friends or family about how you're both feeling? It sounds like the new catheter might solve a few of the problems your husband has been having, so I hope that things start to improve for you both really soon. Keep us updated.
We do have a booklet that offers advice on looking after your bladder and bowels, you can download it here - you may find it useful.
Hi Benji - he was prescribed medication but it hasn't worked sufficiently well for the catheter to be removed permanently. So now we wait some more. Have always found the NHS to be wonderful but we can't put up with this much longer. Theoretically, it will have been this way for nearly 12 months by the time the NHS get to his turn. And no, can't talk to friends and family about it - they have their own problems and who wants to talk about catheters and bags and urine....
Dear Giffy,
My Husband is the one diagnoised with PD and is a new member to this "club"...when I read the things that this disease can bring it really scares me as he is only 59.It is such an alwful and unpredictable disease and every day seems to be different.I hope your Husband gets the care and help he deserves...
I understand your comment about friends being helpful..when I told my friends what was going on,they all said dont forget if you need anything just ask.....how can I ask for anything when they tell me constantly how busy they are etc...if they need someone to off load their problems they are on the phone to me straight away, or if we meet for coffee I probably listen to them for most of our time together...then just as we are leaving I am asked how things are! After listening to their problems how can I posssibly tell them how I am? I always say oh were ok thankyou........people just seem to forget the big P is with us now! Is it ignorance on their part as they dont know really what PD is? I dont know? But I do know that you certainly learn who your true friends are......good luck to you both and hope things get sorted soon. Take care x
I only just came across your post which I see dates from à while back. My husband is in the same situation. Three weeks ago he went into hospital with a kidney infection. He has Parkinson’s and a very enlarged prostate for which he had been taking medication for years (to no effect). He came home yesterday with a suprapubic catheter, à stack of urine bags and I feel just like you did in your post. Can you tell me where you guys are now? What should I expect for the future. I admit it looks and feels totally bleak at the moment.
My brother-in-law had an enlarged prostate and has a cather he uses just to empty his bladder periodically during the day I believe it’s self insertion type which has a tap .
He carries on as normal riding daily activities etc . I believe he had the self insertion cather 15 years ago , he doesn’t have PD but is 89 .
I have PD and may have to have a self applied cather ? The decision depends on what happens at the next appointment, given my brother-in-laws experience I am ok with that .
Dear Rain,
My husband has Parkinsons and in September 2022 was diagnosed with an enlarged prostate and fitted with a catheter. He had so many problems, it coming out 2 to 3 times a week and having to phone the District Nurses. But after many phone calls and pushing 16 months later he had a TURPS operation and YES it worked.
He also has prostate cancer.
Do hope this helps.
Dear Rain, if they have not been intouch already phone your surgery they should organise the District Nurses who for us were brilliant. They give you their day and out of hours telephone number for any of your problems. Also GP surgery for organising catheter bags etc.
Dear Rain, I should have also mentioned in those 16 months my husband had 4 or 5 (Trial without catheter). He went as a day case to the hospital and drank lots of water with the catheter out to see if it would work. In my husband case it didn’t. But thankfully the TURP op did.
I thought I was alone struggling with this! My husband was put on a catheter in the hospital 3 years ago when he broke his hip and has been on one since. Constant leakage, interminable laundry, some district nurses very kind, and others who allege it is our own fault. He won’t leave the house for fear of leaking in public so we are both prisoners of that damned catheter! Now he is practically immobile anyway and can’t get to the loo in time anyway and needs help to get out of bed so its a combination of catheter and pads. Thankfully, we have wonderful carers who take it all in their stride.
I was so sorry to hear what you have been going though it’s not much fun. We were the same my husband was very reluctant to go out, visit anyone or even go to watch football with our son, he has been a season ticket holder for 50 years. I did buy some Tena men’s pants(dark blue)which gave him a bit more confident.
It’s easy to say but try and get some me time.