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    Catheter

    I’ve been fitted with a catheter today reluctantly. It was rather sprung on me. Its because i need to pee at least 3 times a night and i cant get myself onto the commode myself any more 😔. So we both had very disturbed sleep. At the moment it feels uncomfortable and I’ve filled it twice in 3 hours. I hope it settles. What’s other people’s experience?
    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

    #2
    Hi Hakuna,

    Yes it will feel uncomfortable for the first couple of days after insertion, after that it should settle down a little. You can order some Optilube off the Internet which is the mild anaesthetic gel that they use when inserting, you can use this to help take any pain away and help lubricate the entrance to your urethra whilst it is sore.

    With regards to filling are you using a 500ml leg bag? If so these are obviously very small…. I use a 3lt night bag all of the time and put it in a tray underneath my wheelchair seat. The other advantage of the 3lt bag is that the pipe is slightly longer too.

    James
    Foxes Never Quit 💙

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      #3
      Hakuna I'm sorry you feel that you didn't have a choice in getting a catheter, I imagine it's a decision best made in your own time, having weighed up the pros and cons.

      I don't have one but I know they can take time to get used to, as James said, but also the catheter needs to be the right size and can be more uncomfortable for women, especially if sitting in a chair all day.

      If it continues being uncomfortable, get the nurse back and maybe that gel which James recommends will help too.

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

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        #4
        What do you do Ellie, especially at night if it’s not n intrusive question?
        Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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          #5
          Nothing MND-related is too instrusive for me 😉

          I'm blessed with a good bladder and don't need to pee between 11pm and 8am, despite having 240ml water with my night meds 👍👍

          During the day, I'm hoisted onto a commode and wheeled over the loo. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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            #6
            I wish that were true for me then I wouldn’t have needed to have the catheter. I can manage fine during the day but since my hysterectomy 25 years ago night times have been an issue. It feels ok lying down and leaning back but when i sit up its uncomfortable. Hopefully I’ll get used to it and no infections. Husband and i both slept ok although i still woke up lots as usual.
            Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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