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    Moving from indwelling to suprapubic catheter

    Hi everyone,
    So I have been using an indwelling catheter for the last 18 months and (following some initial advice from one of my District Nurses and a referral from my GP) I have just had a pre-op assessment and a meeting with a urologist about moving to a suprapubic catheter. The reason for the change is because I have to have very frequent changes (and these are not pleasant), I get a lot of UTIs and there seems to be some thought that you can cut them down with a suprapubic catheter, they are easier to manage/change and finally I am only 51 and would like to try and have some sort of sex life still.
    My urologist however is incredibly negative and spent 20 minutes telling me all of the really bad things that can happen to me with a suprapubic catheter. For instance a 1 in 100 risk of death from the procedure, problems with changing the catheter (he completely dismissed the advice from the district nurses about changing this type of catheter being much easier), no change in UTI frequencyโ€ฆ..in fact the only thing he did support was an improvement to my sex life.
    So basically he has done his very best to put me off the idea but will carry out procedure if itโ€™s what I still want to do. It does seem to me that he doesnโ€™t really support this type of procedure and didnโ€™t seem remotely interested in the benefits for me as a person with MND. I wondered if any of you good folk out there had similar experiences or feedback on how your procedure went if you already have a suprapubic catheter?
    Thanks,
    James
    Last edited by Lcfcno1fan; 15 December 2021, 15:13.
    Foxes Never Quit ๐Ÿ’™

    #2
    Hi James. I asked for a suprapubic catheter but my neurologist is very worried about me having it. This is because in my case with having already had three pelvic operations they think adhesions may have attached to my bladder, so they want to do a general anaesthetic which is risky to us with MND. Iโ€™m seeing the lead breathing doctor at Wythenshaw about this on 15th January. My breathing was still ok at my last clinic appointment. Iโ€™m going to ask the team to scan my pelvic area to see if adhesions and if not they can do keyhole surgery. Fingers crossed x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    Comment


      #3
      Originally posted by Lynne K View Post
      Hi James. I asked for a suprapubic catheter but my neurologist is very worried about me having it. This is because in my case with having already had three pelvic operations they think adhesions may have attached to my bladder, so they want to do a general anaesthetic which is risky to us with MND. Iโ€™m seeing the lead breathing doctor at Wythenshaw about this on 15th January. My breathing was still ok at my last clinic appointment. Iโ€™m going to ask the team to scan my pelvic area to see if adhesions and if not they can do keyhole surgery. Fingers crossed x
      Hi Lynne,
      Thank you for your feedback. My anaesthetist doesnโ€™t want me to have a general either but will perform a regional anaesthetic administered through my spine or a local anaesthetic in combination with sedatives. I wish you the very best of luck in January ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š
      James
      Foxes Never Quit ๐Ÿ’™

      Comment


        #4
        James, if it's what you want and accept the risks, push for one - I'm talking more about the risk of them hitting your bowel or something rather than the risk of death which, at 1% seems overstated or, if that's his personal mortality rate for placing a suprapubic catheter, I'd want to find a different Urologist ๐Ÿ˜

        Notwithstanding the reduced risk of infection which comes with a suprapubic catheter, it's a real Quality of Life issue so, how dare he be sniffy about it...

        You're a wheelchair user and you're sexually active, 2 very valid reasons to be offered a suprapubic catheter. xx
        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        โ€‹

        Comment


          #5
          Hi James

          In my experience, people are often changed to a suprapubic catheter to reduce the risk of infection.

          The Nursing Times has a journal article which even states this as one of the reasons for having a suprapubic catheter

          Advantages of suprapubic catheters


          There is little evidence-based research on the use of suprapubic catheters but, according to the RCN (2012) and the European Association of Urology Nurses (2012), there may be several advantages to their use compared with urethral catheterisation:
          • There is no risk of urethral trauma, necrosis or catheter-induced urethritis and urethral strictures;
          • Greater comfort, particularly for patients who are chair bound as the catheter is not positioned between their legs and there is less risk of sitting on it;
          • Reduced risk of catheter contamination with micro-organisms that are commonly found in the bowel;
          • Easier access to the entry site for cleansing and catheter change;
          • Makes it easier to engage in sexual intercourse than a urethral catheter;
          • Can be blocked off and the ability to void via the urethra assessed before the catheter is removed (trial without catheter, or TWOC);
          • Micturition is still possible if the urethra is not surgically closed or obstructed;
          • Evidence of greater satisfaction and quality of life when compared with urethral catheterisation (Reitz et al, 2006).

          Other benefits have also been identified by Dingwall (2008), including:
          • Decrease in urinary tract infection rates through reduced contact with genitalia before the catheter is introduced into the bladder;
          • Reduced pain on catheter insertion;
          • The procedure is less intimate than insertion via the urethra.
          https://www.nursingtimes.net/clinica...rs-08-02-2016/

          Ultimately the decision should be yours and it's important that you make an informed decision. The Urologist has a duty of care to tell you the risks of having the suprapubic catheter but they should also be discussing the benefits so that you can make that informed decision.

          Best Wishes

          Rachel
          MND Connect Adviser
          MND Connect
          Contact us on 0808 802 6262 or at [email protected]

          Comment


            #6
            May I ask what is the basic difference between them
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

            Comment


              #7
              Originally posted by Lcfcno1fan View Post

              Hi Lynne,
              Thank you for your feedback. My anaesthetist doesnโ€™t want me to have a general either but will perform a regional anaesthetic administered through my spine or a local anaesthetic in combination with sedatives. I wish you the very best of luck in January ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š
              James
              Thatโ€™s good James. Fingers crossed for me xx
              Last edited by Lynne K; 16 December 2021, 13:18.
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

              I'm staying positive and taking each day as it comes.

              Comment


                #8
                Originally posted by Ellie View Post
                James, if it's what you want and accept the risks, push for one - I'm talking more about the risk of them hitting your bowel or something rather than the risk of death which, at 1% seems overstated or, if that's his personal mortality rate for placing a suprapubic catheter, I'd want to find a different Urologist ๐Ÿ˜

                Notwithstanding the reduced risk of infection which comes with a suprapubic catheter, it's a real Quality of Life issue so, how dare he be sniffy about it...

                You're a wheelchair user and you're sexually active, 2 very valid reasons to be offered a suprapubic catheter. xx
                Thanks Ellie, positive and wise words from you as always x
                Foxes Never Quit ๐Ÿ’™

                Comment


                  #9
                  Originally posted by matthew55 View Post
                  May I ask what is the basic difference between them
                  Hi Matthew,
                  I currently have a catheter that is placed into the bladder through the urethra, this is the most common approach and if you have to have a catheter after surgery is the method they will use. However for a long-term catheter it is not necessarily the best solution and there is such a thing as a suprapubic catheter which is inserted directly into the bladder through a small incision made in the abdomen. The problem with this method is you do need minor surgery to have it installed and as Ellie has pointed out already there is a risk of the bowel being cut accidentally during the process.

                  hope this helps, James
                  Foxes Never Quit ๐Ÿ’™

                  Comment


                    #10
                    Originally posted by MNDConnect View Post
                    Hi James

                    In my experience, people are often changed to a suprapubic catheter to reduce the risk of infection.

                    The Nursing Times has a journal article which even states this as one of the reasons for having a suprapubic catheter

                    Advantages of suprapubic catheters


                    There is little evidence-based research on the use of suprapubic catheters but, according to the RCN (2012) and the European Association of Urology Nurses (2012), there may be several advantages to their use compared with urethral catheterisation:
                    • There is no risk of urethral trauma, necrosis or catheter-induced urethritis and urethral strictures;
                    • Greater comfort, particularly for patients who are chair bound as the catheter is not positioned between their legs and there is less risk of sitting on it;
                    • Reduced risk of catheter contamination with micro-organisms that are commonly found in the bowel;
                    • Easier access to the entry site for cleansing and catheter change;
                    • Makes it easier to engage in sexual intercourse than a urethral catheter;
                    • Can be blocked off and the ability to void via the urethra assessed before the catheter is removed (trial without catheter, or TWOC);
                    • Micturition is still possible if the urethra is not surgically closed or obstructed;
                    • Evidence of greater satisfaction and quality of life when compared with urethral catheterisation (Reitz et al, 2006).

                    Other benefits have also been identified by Dingwall (2008), including:
                    • Decrease in urinary tract infection rates through reduced contact with genitalia before the catheter is introduced into the bladder;
                    • Reduced pain on catheter insertion;
                    • The procedure is less intimate than insertion via the urethra.
                    https://www.nursingtimes.net/clinica...rs-08-02-2016/

                    Ultimately the decision should be yours and it's important that you make an informed decision. The Urologist has a duty of care to tell you the risks of having the suprapubic catheter but they should also be discussing the benefits so that you can make that informed decision.

                    Best Wishes

                    Rachel
                    MND Connect Adviser
                    Thank you Rachel for your input to my problem, it is very much appreciated ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š
                    Foxes Never Quit ๐Ÿ’™

                    Comment


                      #11
                      Lcfcno1fan Hopefully you've enough info (and ammo) for your next Urology appointment, whatever your decision - good luck ๐Ÿคž๐Ÿคž
                      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      โ€‹

                      Comment


                        #12
                        So I have my operation a week tomorrow (17th of Feb). I will let you all know how I get on ๐Ÿ‘
                        Foxes Never Quit ๐Ÿ’™

                        Comment


                          #13
                          Woohoo James ๐Ÿ‘๐Ÿ‘ I was wondering how this was progressing.

                          Is it being done with a local anaesthetic, epidural or the full general? xx
                          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          โ€‹

                          Comment


                            #14
                            Lcfcno1fan

                            As a ex community nurse the supra pubic catheter has a much lower risk of UTI, Obviously the help with sex life and other things mentioned in the above article. All the patients I had with it had positive experiences, the number of UTIs with the urether catheter seemed to get worse as the years past (only personal observation).

                            I would recommend, the negativity of doctors is shocking to me still.

                            Good luck for the op.

                            My dad had a epidural and sedation for a hip replacement. there are alternatives to General anaesthetic.

                            All the best.
                            Donna

                            Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                            Comment


                              #15
                              DeeH does the procedure require patient to lie flat and horizontal? This was a query for the peg procedure
                              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                              Comment

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