Catheter confusion, apologies in advance

[Mustafa128h]

Hi Everyone, hope you are all coping fine

I know there was must be so many posts about catheters but I just had some more specific questions that I am hoping some catheter genius with 30 years experience can answer lol

So quick history lesson, dad used to have a sheath/conveen, then in march 2020 he wasn't well got admitted into hospital, turns out he had bladder retention, they put in a catheter and like a good 2 litres drained out. it was the first time his bladder retained like that. So when they discharged him they did with the catheter still in place. For the 1st 3 months the catheter was really awesome it never blocked, or bypassed, zero issues, I wasnt even trained on how to maintain it or anything even. So they need changing after 3 months so I called the district nurses, they came and put in a new one and then ever since that day we have just had problems. Now we are using an open end 14Fr urethral catheter, apparently they are less prone to blocking.

We use the optiflo G washouts which containts citric acid, which are meant to keep the sedament/crystalizations stuff at bay, we use 2 of those each week

also been given optiflo S which are just normal washouts.

My questions are

1)why did they first catheter work so well? and now hes had almost a new catheter fitting in every other week, the open end catheter has been going unblocked longer than the other generic ones, but still has issues, maybe its just that 3 months down and dad has deteriorated more? making his urine stream weaker meaning more blockages? or maybe i introduced something new into his diet or meds or supplements and that is producing more sediment? but i cant pin point what that might have been now

2)is there anyway to reduced the amount of sediment present in the urine? maybe we should introduce a supplement into his diet? at the moment we try to give as much water as we can, he gets 1.5Litres of feed and about 1.7 litres of water per day, but his urine still has that fishy smell, even though tested to not have an infection, and trying best to keep him hydrated

3) what is exactly going on with the actual catheter, why does it sometimes bypass for a few hours then all of a sudden not bypass and resume draining into the bag, but then later on it might bypass again and then drain again? what is going on in those situations, what is making it bypass?? if its not actually blocked? because it will start draining later on?

4) dad used to have bladder spasms, i think, he cant talk anymore so this is my guess from his facial expressions, and his body language, it must have been bladder spasms, because they would happen then go, he is on Oxybutynin for the spasm, since being on oxybutynin his spasms have pretty much stopped, but does oxybutynin work instantly?, because initially the GP said to me it takes a few weeks before it started to have an effect on the body, but the other day I forgot to give the 2nd dose of the day of oxybutynin, after dad being on it for a good 2 months that is, and then later on that evening he had a bladder spasm, and the catheter start bypassing after that, even though i had just given a washout to flush out the catheter an hour or 2 before he ended up having the spasm, he was stiff as a log, and was groaning for ages, it went on for about 20 minutes, just wouldnt stop, i quickly gave him the dose i had missed to give him with some oramorph then i thought who knows if i turn him on his side it might help, and i think that did, but question is, does oxybutynin actually work like that? that if you haven't had it your gonna more or less end up having a bladder spasm?

5) would it be better to remove the catheter all together?, take dad for a TWOC (trial without catheter) if he can pass urine by himself then revert back to sheaths? i think he can right because he bypasses the catheter, that's him passing urine by himself right? and then always keep an eye on the urine levels, if it ever seems like hes retaining, call the district nurses and get them to put in a catheter? i asked a few nurses they told me to stick to the catheter since he once had bladder retention, but i goes isnt it putting him at risk more because they keep having to change the catheter when the issues are not fixable by washouts? and even giving the washouts break the seal causing risk of infections, although we have got infusion kits now that dont need us to disconnect the catheter from the drainage bag, but if the catheter is blocked you really need to connect the washout direct rather than via the infusion kit. Sheaths will be alot more hard work, because they used to leak every other day, it was inevitable to leak because dad has a hernia, and his penis retracts all the way in sometimes, but I'm willing to put the work in if it means less complications for my dad to go through

omg i wrote way too much, i know im asking for too much, expecting you all to read all of this, sorry!

but i just need help and the GP and co just dont know themselves

Mustafa

[Helen119]

Hi. My husband had a catheter put in by the hospice, it wa .brilliant for the 3 months, the like you district nurses came and changed it, they made him bleed , it became blocked had wash through , and then he expelled it because of a spasm. He had 5 out in over 3 weeks, until I said no in the end and started using sheaths coveens again.

I wondered why it lasted perfectly for the first 3 months aswell, then didn’t, it was so much more convenient for me not have to change

Daily.

Love and hugs. I hope you find your answers sorry couldn’t help xxx

[Jdjdjd]

Mustafa

Omg, you must be tearing your hair out, and my heart goes out to you and your dad, you can only use the Afex system if you can pass urine naturally, and the penis doesn’t retract, which happens unfortunately, my husband had this system for about 5 years, but he went into retention and was catheterised, they removed it after 3 months and it happened again some weeks later, was readmitted to hospital to be drained and the catheter put back in, the consultant explained that this was the safest option, as going into retention is painful and once it happens it’s likely to continue, I was reluctant to go down this road, but it is what it is, we have not had blockages, but do have problems with the DN being able to refit them , maybe you need a different size, if your dad’s urine is smelly, especially fishy as you say, and cloudy it sounds like an infection, Ian gets them quite frequently and it is worth getting a sample to the GP to check, try to get it when you have fitted a new bag. Antibiotics will clear it up, but sometimes one course is not enough, and you need a second course. It’s worth asking your GP to refer you to the continence nurse, they are the experts and I have found them amazing.

It’s also worth investing in a good thermometer and taking it daily, a higher temperature is a sign of infection, it’s part of our daily routine now .

I wish you good luck with all this, especially as Covid is making appointments difficult, but I send my GP photos from my phone and it works well, I sent a picture of his urine bag last week and he rang me back to say an infection was certain

Let me know how you get on 🥰

Janet

[bikershel]

Im so sorry your are having problems.

My dad had the same issues you are describing.

The oxybutynin works at reducing the spasms, so keep going with them.

His catherter would bypass for a week or two after each catherter change.

We had much more success when the urology nurse changed his catherter, rather than the district nurse. Although this meant a trip to the hospital.

My father was unable to speak and if he was in pain he would pull on his catherter, causing trauma etc. The palliative nurse prescribed daily paracetamol, which reduce him pulling the catherter.

We had many trips to A&e due to uti or trauma following a new catherter.

Keep the catherter strapped up as much as possible to limit damage from pulling. We also found trunks underpants with some lycra were much more supportive than pants.

Keep an eye on the colour of the urine. Any blood or a darker colour call the urology nurse.

Use incontinence pads for a few days after the catherter is changed.

Next time you have a urology appointment discuss all your concerns and what you should do. Also ensure you have a supply of the correct size catherter as a&e and district nurses seem not to always be able to get the correct size.

Buy a water bottle that has the daily water requirements on it, so you can ensure enough fluids are being taken per day in tea, coffee, squash etc.

Take care and look after yourself as well.

Best wishes Michelle

[kenh1]

The common answer is 'push fluids. I used too complain about this but eventually this solved our problems. By giving the same amount of water as feed.

[Mustafa128h in reply to kenh1]

Hi kenh1

Thank you for your reply, was your late wife on a peg feed? My question is how can you get all this volume through the peg, do you know what's the highest speed you can run the pump at whilst still minimising reflux and risk of aspiration?

Would you have the water on during the night and feed through the day or would you need to keep swapping between the two?

Lastly just want to say how kind it is of you to remain on this website and offer your advice to everyone

[kenh1]

We were on an ng feed. Food was fed throughout the day. I basically gave water between feeds as though she was having cups of tea throughout the day. The water was given at the same speed as the feed.

[kenh1]

The feed amounts and speed rates were as set by the dietician.

For medication and fluids .

I would always keep to the advice from the specialists.