Catheters!!!!: Major rant 🤬🤬🤬. Is anyone... - PSP Association

PSP Association

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Catheters!!!!

•12 Replies

Major rant 🤬🤬🤬. Is anyone having any issues with catheter bags not staying attached to the Catheter itself? I am having to reattach the bag at least 3 times a day. This means that at least 3 times a day I have to change Brian’s clothes as they will be wet. Almost every night, the bag comes detached so Brian wakes up in a urine soaked bed and urine soaked clothes. This is despite the fact that I check the bag a few times between Brian going to bed and me going to bed, to make sure it is still attached. I was told to change the bag every 5-7 days but I’m changing it every 2/3 days in the hope I will find a bag that stays in place. Brian is developing raw skin around his groin due to the urine, which is obviously very painful. I have ordered barrier cream from the GP so will see if this helps with that problem but it won’t help with the mound of washing and drying of wet bedding and clothes which I have to do every day. Our electricity bill is a worry because of this but my mental and physical health is taking a real battering. During the day, I am now just constantly sat looking at Brian’s groin waiting for a wet patch to appear and I’m sleeping lightly, worrying if his bed is wet. Because of the PSP, if I disturb him in the night, he thinks it’s morning and wants to get up, so I know it’s a cruel thing to do but I’d rather he had the sleep and then I deal with any consequences in the morning than change him and his bed at 4/5/6 o’clock (which I have done). He has had the catheter in place since September last year and the issues with the bags has been ongoing. The catheter has been changed once in that time. I’ve had the district nurse out 3 times but they won’t change the catheter itself. All they say is “Oh lots of patients are having this use, it must be a bad batch of bags” and then proceed to tell me what I should be doing to keep the bag in place-as if I don’t know and haven’t tried everything they’ve already told me, none of which work! I am at the end of my tether with this and don’t know what to do to improve the situation. Has anyone in a similar situation? Rant over

12 Replies
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45purple profile image
45purple

Hi my husband had his bladder removed and now has a bag. I get little plastic connectors which attach his night and day bag. I would speak to your nurse and sask if she can advise you also is the end of the catheter faulty if it’s a new thing. Hope you get sorted soon as you can’t go on like that for both of your sakes.

• in reply to45purple

@45purple. Thank you for replying to my rant. The district nurse visited the night before last and said that the catheter was ok, but given we have tried 3 types of bag and all were as bad as each other, surely, as you have suggested, it must be the connection on the catheter itself must be faulty. I said this to the nurse but she insisted, as did the last district nurse who I called out for the same problem, that the catheter is ok. I know they hate changing the catheters because it exposes the patient to risk of infection but surely there must be circumstances where the patient and carer welfare outweighs that risk.

45purple profile image
45purple• in reply to

if you could private message me on messenger and just say tubes and your address I would send you some of mine to try they come in sealed bag but just sterile in hot water.

• in reply to45purple

will do. Thank you

LFG3 profile image
LFG3

Hi,

I'm in the USA but had similar problems with the Bard drainage bags. I've since switched to Bardia drainage bags and have not had any problems. You can ask for them from your supplier or order them from Amazon.

Bardia closed system urinary drainage bags. Best of luck to you. I know it is very frustrating.

• in reply toLFG3

Hi. Thanks for the reply. I’ll definitely have a look at these and see if they might be suitable

AnneandChris profile image
AnneandChris

Hello there

We had a similar problem with my husband's Conveen. As he was 6ft we started to use longer tubes than the standard and the problem went away. The longer length enabled him to move without it becoming disconnected.

Hope this helps, keep on keeping on.

Northstar1 profile image
Northstar1

We tried conveen catheters everything failed. We have Ultima tenna wrap around pads at night, I also place a slip in pad which lies across his penis. This has been working brilliantly and I can change the slip in if he wets before I go to bed.

• in reply toNorthstar1

Hi. We’ve tried to put disposable pads on Brian with the catheter and fixed the pads in place with pants but he still managed to remove the pad so still had a wet bed plus a wet pad🤦‍♀️

Northstar1 profile image
Northstar1• in reply to

We tried that it was the same wet all the time. It worked so much better with just the wrap around and the slip in. Hope you get it sorted x

Junky60 profile image
Junky60

my husband had issues like this as well, I finally started electrical taping all the fittings together. Hospice nurse and I decided there was something in his urine that was causing the silicone to deteriorate, so we switched to only old fashioned rubber fittings.

I understand your frustration.. I was pulling my hair out. But when I started taping and then switched the connectors things got much better.

Update: I tried Elastoplast as a tape to join the catheter bag valve and the catheter bag and it worked! Dry bed for 5 nights and dry days too. Also, I complained to the supplier of the bags on Friday and I had a call from them today. Apparently there does seem to be an issue with the catheters as the silicone connections are weakening after a few weeks so there is little grip between the silicone connector and the bag connector. They are chasing this with their supplier but in the meantime they have asked if Brian can trial a different type of bag, which they have sent out today. If the new bag fails, it will confirm that the catheter is the issue. Credit where credit is due-first class customer service from the supplier

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