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    Catheterization

    Hi all. I know some of you have a catheter. I wanted to ask some questions. I have to beg and fight for things and I know catheterization won't be any different.

    I'm hoisted onto a commode chair and then over tiolet.

    I've had a UTI since Xmas. 2 lots of anti biotics but it keeps reoccurring. I've never had one prior to this.

    When was it decided to have a catheterization? Who decided gp?

    My carers asked me if I have considered it and I said I do not know the point where its needed.

    If anyone could share you own experience please, I would be grateful.
    Diagnosed May 2021 bulbar onset als.

    #2
    shelly21 Ugh, that sounds exhausting.

    Has your urine been analysed to know which antibiotic is best to fight your infection or have you been prescribed a broad spectrum abx?

    I'd like to think catheterisation is a choice made by you, in the absence of it being medically indicated. But do be aware that catheterisation can increase the risk of UTIs. 😬 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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      #3
      Ellie the gp have finally sent a sample to the lab on Monday. I had 7 days ab.

      I just don't know when it will be needed. I live in a very built up area and all services are so short staffed that I know I will be on a waiting list. I have no regular team now. The only thing that is consistent is respiratory and palliative team who I only see every 3 months. X
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        Hi shelly21

        I have been catheterised now for 2 1/2 years, originally with a urethral catheter and for the last 12 months with a suprapubic catheter.

        Ultimately, it is your personal choice as to whether you should push for one or not. In my case it allows me greater independence and it’s also one less thing to worry about when I leave the house. It also got me away from using a convene which I just could not get along with and frequently left me with damp shorts.

        As Ellie says, you have a greater risk of UTIs with a catheter and I would also add that your catheter changes are not the nicest way to spend 10 or 15 minutes every few weeks.

        So I guess you have to weigh the upside against the downside and what it means to you personally. Once I had made the decision I had to get a referral from my GP for a District Nurse to come out and fit one. Some doctors will be very much in favour and some will not based on the UTI risks. Incidentally, my MND Clinic were very much in favour of me getting one given benefits to my independence and mental well-being.

        Good luck x

        Foxes Never Quit 💙

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          #5
          shelly21 Hopefully you'll get the culture results later today or tomorrow.

          Usually an indwelling (urethral) catheter is placed first, even if you want a suprapubic catheter, and this is done by a nurse in your home, so, in theory at least, there shouldn't be a delay.

          I suspect you need to be UTI-free for your first catheter. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Wow, you guys are ahead of us. We have to have a doctor place a suprapubic catheter. They claim the suprapubic catheters have fewer infections but I'm not really sure. I know people with both. One lady got so many UTIs that she switched to the Air Wick system.

            This horrible disease has so many decisions.
            Living live on the beach. Dx 2015 ALS (limb onset)

            Comment


              #7
              Originally posted by KimB View Post
              They claim the suprapubic catheters have fewer infections but I'm not really sure
              This often gets said and there was also an article about it in the nursing times here in the UK. However, when I spoke to my urologist about it he said it was a load of old nonsense and you will still get as many UTIs with a suprapubic……. and so far he’s absolutely spot on 😢
              Foxes Never Quit 💙

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                #8
                JamesW oh I'm not liking the sound of that!

                Diagnosed May 2021 bulbar onset als.

                Comment


                  #9
                  Originally posted by KimB View Post
                  We have to have a doctor place a suprapubic catheter.
                  The initial suprapubic procedure is done by a doctor in hospital.

                  Catheter changes are done at home, by nurses.

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

                  Comment


                    #10
                    JamesW I am surprised and glad it can be done by a nurse. I also heard some doctors are pro and anti.

                    I do like getting out and its getting impossible to transfer safely when using disability tiolets.

                    thank you for explaining it in easy terms. I will way up the for and against.
                    Cheers x
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      Originally posted by shelly21 View Post
                      JamesW I am surprised and glad it can be done by a nurse. I also heard some doctors are pro and anti.

                      I do like getting out and its getting impossible to transfer safely when using disability tiolets.

                      thank you for explaining it in easy terms. I will way up the for and against.
                      Cheers x
                      Urethral catheters are installed and replaced at your home by the District Nurse.

                      I forgot to mention that you may get referred to a local continence team to see if they can help you explore options.

                      The whole issue of needing the toilet and how to best go about it is one that plagues a good deal of us here at some point. All I would urge is that you try not to stop yourself doing the things you want to do because of it.

                      xx
                      Foxes Never Quit 💙

                      Comment


                        #12
                        JamesW thank you. I have to plan water intake which is not great as I then go long periods of time without fluids.

                        I will ask my gp for a referral to the incontinence service. I wouldn't have known that without you mentioning.

                        I've just been watching morning tv and a doctor was talking about uti's. She said the new treatment thats helping is D-mannose. Its an herbal supplement. I found it on amazon with really great reviews. I've ordered some.
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                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #13
                          Originally posted by shelly21 View Post
                          I have to plan water intake which is not great as I then go long periods of time without fluids.
                          That sounds like a valid reason to consider getting a catheter, Shelly, it would eliminate all the "if I take water now, will I be able to be brought to the loo at x o'clock" thinking...

                          Hope that supplement improves your UTI: any lab results yet which might help you? xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Ellie it went off Tuesday morning. I've not heard from gp but a friend said it can take 4 to 5 days.

                            I think that's how I made it worse re travelling 5hrs to Cornwall. I won't ever do it again 😒x
                            Diagnosed May 2021 bulbar onset als.

                            Comment


                              #15
                              Originally posted by shelly21 View Post
                              I think that's how I made it worse re travelling 5hrs to Cornwall. I won't ever do it again
                              Faced with a 5hr journey, we'd all have done the same, Shelly - don't beat yourself up about it. 🤗🤗
                              ​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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