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    Catheters

    I think I want to go this route, I sit here and my day revolves around needing the loo but waiting for carers to come in and assist, hospice day is Wednesday and my MND nurse will be there, carers think it is a good idea, OT thinks it is a good idea and will save my energy by not having to keep transferring. Does anyone here have one and how do you find it? I doubt at the stage I am at that they will do the supra catheter as my breathing is not too good. I have found that I am not drinking enough to the point of dehydration because of this issue

    #2
    Hi Jan,

    I don't have a catheter but...

    If you think it'll reduce your stress levels and is less hassle, go for it. UTI infections are inevitable with catheters, but there are some with silver alloy antibacterial tips and/or with hydrogel which are said to lessen frequency of UTIs.

    Restricting your fluid intake because you may need the loo when a carer isn't around isn't sustainable, which you know. I admire you for being proactive, not to mention being brave!

    They are easily removed, so if you hate it, you can have it removed.

    Suprapubics can be placed using local anaesthetic or an epidural, allowing use of BiPAP if necessary. If you opt for a suprapubic, check beforehand that a nurse can change it in your own home or hospice, rather than it being a hospital-only job.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Hi Jan,

      Just read your post after several hospital stays thanks to sepsis, uti ,constipation it was suggested I try one ,now I had a catheter before for two weeks so knew the limitations ,but then having all the faffing around with bottles and having limited time before needing to pee I gave in and bad one fitted ,utterly brilliant, whatever minus points there are the freedom is wonderful and the renal service that supplies the bits are outstanding ,so no hesitation go for easy to fit easy to remove if it's not suiting your needs good luck and don't worry the stress relief is amazing

      Regards
      Pete
      X

      Comment


        #4
        Hi Pete,

        I'm saddened to hear you have been in hospital and I hope you are feeling better now (well you know what I mean in the context of life with MND).

        Sorry to bump your thread Jan. Take Pete's advice and remove the stress.

        Best wishes,

        Barry x
        I’m going to do this even if it kills me!

        Comment


          #5
          Blimey Pete, you've had a rough time; Sepsis is no walk in the park I hope you've recovered well.

          Good to hear of your positive experience with a catheter.

          Take care,
          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Good to hear from you Pete;

            But what an awful time you been through and I hope that you are well now. My uncle has used catheters and says that the silver tipped ones cause a lot less problems.

            I guess that you tried the condom one like ones first.

            Love \Terry
            TB once said that "The forum is still the best source for friendship and information."

            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

            Comment


              #7
              Originally posted by Barry52 View Post
              Hi Pete,

              I'm saddened to hear you have been in hospital and I hope you are feeling better now (well you know what I mean in the context of life with MND).

              Sorry to bump your thread Jan. Take Pete's advice and remove the stress.

              Best wishes,

              Barry x
              Hi Barry,

              Yes mate, a lot better than I had been the previous three. Months I mistook a high temp which in our house the bride feels thecold so anything under 80 dregs the heating goes on , so the shivering and fluid retention of a nearly two litres watching that drain via the catheter then several bags of broad spectrum anti biotics and god knows what else , I felt a lot better I'm amazed I never knew I was ill but the hospital were brilliant so a huge thanks to them at Walsall .Manor ,you don't have to explain the well wishes we know well what you mean matie.

              Petex

              Comment


                #8
                Originally posted by Ellie View Post
                Blimey Pete, you've had a rough time; Sepsis is no walk in the park I hope you've recovered well.

                Good to hear of your positive experience with a catheter.

                Take care,
                Love Ellie.
                How's Ellie

                Thanks ,no your right I had no idea what sepsis was but amazed how quick it takes you down and how rubbish you feel,equally how quick you recover if you get prompt and correct medical intervention ,so how are you ?,

                I still think that constipation played its part and judging the laxatives dose isn't easy but movicol seems to have resolved those problems ,what a time for the biobidet to go wrong.

                Look after yourself Ellie

                Xx much love

                Comment


                  #9
                  Originally posted by Terry View Post
                  Good to hear from you Pete;

                  But what an awful time you been through and I hope that you are well now. My uncle has used catheters and says that the silver tipped ones cause a lot less problems.

                  I guess that you tried the condom one like ones first.

                  Love \Terry

                  Hi Terry,

                  Thank you mate ,I still look in and read your posts, don't know about silver tipped catheter they never asked just popped one in, have to admit it helps when you go out for the day. No more struggling to use a bottle or worse being just seconds too late,if I meet the idiot who told me that mnd don't affect the waterworks or number 2s dept in fact everything can be affected either directly or as a result of mnd absolutely everything it comes down to how unlucky you are and we all must have upset a load of really important lemons ,to have deserved this

                  Comment


                    #10
                    I'm good Pete thanks. Kids are back in school, so mummy's a tad lonely!!

                    Where would be without Movicol

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Originally posted by pete View Post
                      Hi Jan,

                      Just read your post after several hospital stays thanks to sepsis, uti ,constipation it was suggested I try one ,now I had a catheter before for two weeks so knew the limitations ,but then having all the faffing around with bottles and having limited time before needing to pee I gave in and bad one fitted ,utterly brilliant, whatever minus points there are the freedom is wonderful and the renal service that supplies the bits are outstanding ,so no hesitation go for easy to fit easy to remove if it's not suiting your needs good luck and don't worry the stress relief is amazing

                      Regards
                      Pete
                      X
                      Hi Pete

                      I don't check in every day now, so have only just seen your post. Sorry to hear you have been having such a rough time. You sound positive now so hopefully you will have a bit of a plateau ahead. Keep cheerful. Xxx

                      Comment


                        #12
                        Are there any ladies on here with catheters? I too am so fed up of relying on others and I don't always want to go when the carers come. This is mainly a problem when my husband goes to work. My mum stays with me those days and sometimes she ends up having to take me to the loo. I'm not comfortable with her doing it as she is 78 and I don't want to cause her any stress..

                        Comment


                          #13
                          Hi Pink,
                          Sadly I haven't got a catheter yet. I have been waiting for one since last August,when I finale got my appointment the nurse thought I was there for a urethral catheter. I told him that at the previous appointment i was supposed to be getting a suprapubic flip flow type which my district nurse advised me to get. So he said he would organise a new appointment for me.

                          Up to now no new appointment even though my palliative nurse rang up in December to see if one was heading my way.

                          I've been told by the District nurses that the first two changes have to be done in hospital then after the nurses can do them.

                          I really need this doing like you I'm sick of having to be hoisted back and forth so often during the day .

                          Best wishes Bernie xxx

                          Comment


                            #14
                            Hi Pink,

                            I feel for you because sometimes the things that we used to take for granted, such as getting to the bathroom easily, can now cause us a lot of stress and worry. I don't have a catheter, but I think that you are doing a very positive thing by considering it.

                            I am up for considering anything that will hopefully make my life easier and less stressful, but understandly you want to make an informed decision about whether a catheter is right for you. Hopefully other ladies on this forum, who have more knowledge and/or experience than me, will be able to offer you the re-assurance you need to make a decision that's right for you.

                            I hope that something can be sorted out for you soon, so that hopefully the issue will be resolved and your worries will be eased.

                            Thinking of you,
                            Love
                            Kayleigh x
                            Last edited by Kayleigh; 26 January 2019, 20:45.

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