Urinary incontinence

[Steve-N]

Hello, I'm on palliative care only for Liver Disease and as the time has gone on I have now become 24/7 bladder incontinence and to get them to work for example a convene sheath. The day and night time bags which are mostly the same no matter who the maker of them is but the issue is that no matter what the Rep for a company tried many convene sheaths which she brought to us for me to try but they continued to fall off. The nurses kept trying them when I was in a hospital and over a period of 24hrs they had me on bed rest and they fell of 12 times.

Does anyone reading this know of a way of getting the sheaths to stay in place?

[Hidden]

Sorry to hear of your illness steve. How was it caused? if you stop the cause many can live along time or certainly longer than they would have.

[Steve-N in reply to Hidden]

Hello Ralph, If I thought I could find reason for my illness it would be good to know what is the cause is actual cause. They don't know what has caused it but they don't. As a result what is heading my way will happen and with it there is nothing they can do. It may have worked with me having a Liver Transplant but they have also told me that a Transplant is not on offer to me. Best wishes,

[Hidden in reply to Steve-N]

sorry to hear it Steve. Even more frustrating is not knowing the cause.

god bless

[jules45]

Hi, sorry to hear about your situation.I suffer with cirhossis. I can't advise, just sympathise as I am on a catheter - leg bag and then fixing onto a night bag and it is very soul destroying. Been on my catheter now since October then back onto it again 1st November until I see a urologist. I hope you get the answer you need and in the meantime wish you all the best

Julie x

[Steve-N in reply to jules45]

Hello Julie and thanks very much for thinking of me and also very much for your reply. I have tried the sheaths because more and more I was getting damp, then very wet and so I found it better and easier to never go out. Then we had the sheaths from the GP and it was all good but just when I thought I was safe to go out they began to detach from me and however full the leg bag was the contents drained all over me all over my clothes and my power wheelchair. People just didn't realise that beyond the related cleaning was how it made me feel. Even at the hospital the nurses were not able to put them on. One hospital was quick to wash me down re make the bed each time they came off the most at the start was within about 10 minutes and they were kind and understood what I heard very quickly was that I kept doing it myself. At that point the nurses refused to respond and several times, day and night I was left to wait in a soaking wet bed for two to 2.5 hours. That also is why my wishes re I refuse an ambulance to ever take me DNR, end of life to the MRI. I'm sorry Julie for the length of this.

[jules45 in reply to Steve-N]

Hi Stephen, you could write pages and I wouldn't be tired of reading about your situation. I went a week where I couldn't go out because my leg bag kept detatching and I would get a soaking and even now my confidence is at an all time low, wondering if I'm going to get soaked outdoors. Having a catheter is an awful thing. I don't go out very often as I am always aware that when I go out there has to be a place where I can empty leg bag and being on a double dose of water tablets makes it worse. I have gone from wearing nice jeans to practical loose fitting easy wash trousers which isn't me. Waking in the night is hard work as you have to carry night bag stand into kitchen to make a cup of something. Waking in the morning, detatching yourself before you can do anything - it is hard work. Are the district nurses any good with you. Mine just give me night bags and change leg bag every Friday. I feel frustrated for you with the sheath situation. Your quality of life should be better than it is. Surely someone somewhere can help you. My problem seems small compared to yours. Anyway, Im here for a moan and groan and send you lots of support. I hope you find a solution.

julie x

[julieju in reply to jules45]

Hiya Julie,

I really feel for you & for Steve, too. The concept of these catheters is great but in the real world the idea seems to crumble! With your water tablets, could you just miss taking them if you are going out for long spells? Forgive my ignorance! My Dad had the sheath thing in Hospital which fell off when full! I think we all take things for granted until it goes wrong! Surely there must be a fail-safe catheter method somewhere out there! You shouldn't have to be in a situation where you can't wear your usual clothes! Honestly, no wonder you are fed-up !

[jules45 in reply to julieju]

Hi Julie, what a lovely name we share!. The diuretics were increased as I started to get ascities so I can't not take them. I feel for Steve as I am in a slightly better position with a female catheter. With females it's either in or out its just the leg bag connection to the mains which can be a bit unpredictable and if it dissconnects even once, thats enough to knock your confidence. Thanks for your kind words. Ive just got to find out the cause of my acute bladder retention so new year, urology appointment and hopefully a resolution. My hepatologist won't be happy when he finds out how long I have been left like this.

Julie x

[julieju in reply to jules45]

The Hepatologist I have doesn't stand any messing! Please try & be as strong as you can with the alcohol. It really isn't easy but you must persevere. Your way of thinking has to change - you have to try & re-educate yourself. It may seem like everyone is drinking alcohol and you're missing out but you definitely aren't! What can you do when you are drunk that you can't do sober? Alcohol doesn't make you better, it makes you better at looking stupid! Some people can drink without any problems and others can't. I didn't like the drunken me but I love the sober me and so does my liver ❤

[jules45 in reply to julieju]

Hi julie, gave up alcohol 15 months ago so xmas will be hard but even harder if I have a burst varicies. Had 6 banded this year so I know what alcohol will do to me especially with cirhossis and portal hypertension and bladder problems

Nice that you are thinking of me.

Best wishes to you

julie x

[julieju in reply to Steve-N]

Hiya Steve, another Julie here! Your situ seems ridiculous! Providing you with an extremely necessary medical item & no proper instruction on how to use it! Have you tried contacting the manufacturer directly? There must be someone who can help with this, as it is a MUST HAVE which is instrumental in your quality of life. You definitely shouldn't have to fret over it falling off or leaking. I would contact your Doctor/Nurse and explain that this is distressing and very intolerable. You should not have to be worrying about this at all. I really do feel very annoyed for you!

[jules45 in reply to Steve-N]

Hi again Steve. just spoke to a male friend of mine who had a mate in the same situation as you and he said to tell you that his mate used

micro pore tape to keep the sheath on. Earlier I didn't know the exact equipment you have to use but when I said to him about you he knew what situation you were in and enlightened me. Poor you now I know.

Try the micropore tape and see if it helps with guidance.

julie x

[ferries5]

Hi Steve, do you put on the sheath yourself as they are extremely difficult for someone else to fit. 1. get the correct size 2 try the wideband ,They have more glue on them , Ask for this make as I think they are the best. ,rochestermedical.co.uk/rocm... 3 Make sure you are all dry before fitting and once on use the heat of your hand to soften the glue so yo get good adhesion. One trick I used was before fitting the sheath, ram the plastic tubing for the bag right into the sheath part, use a touch of vaseline if necessary. Because it kinks very easy at that part of the sheath and causes a back- pressure and the urine disolves the glue on the sheath. also you should secure the plastic tubing to your leg (you do get special device that fits on your leg. Also try and make sure your member is pointing down the way so the urine has a free flow.

Even then you will have limited success, so it is best if also used with a bed pad.

Persevere for a while and see how you get on, because when they work they are good.

Best of luck.

[ferries5]

Steve try the incontinence heavy duty pants they are good. But the nhs will not want to supply you with them , They will try and fob you off the nappy things, See your doctor if they can bring pressure to bear.