Bowel and bladder problems

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  • Lynne K
    Forum Member
    • Nov 2017
    • 2614

    #16
    Oh dear 'Broken Nails.' I hope that the doc can sort you out. Lynne
    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

    • Kayleigh
      Forum Member
      • Nov 2018
      • 1227

      #17
      Hi Broken Nails,

      That is interesting comment you made about being dehydrated. I am much more wary about how much I drink these days, and I probably don't drink enough because I want to minimise the number of trips to the bathroom (because it is so time consuming getting there and back!). If I have just got back from the bathroom, there is no way I would have a drink straight away because I want to make sure that I have a long break before I have make yet another trip to 'the littlest room'. I probably risk getting dehydrated if I am not drinking as much as I should - but those bathroom trips are such a hastle these days!

      I hope that your GP is helpful in resolving your bladder problems.

      Kayleigh x
      Last edited by Kayleigh; 2 January 2019, 18:52.

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      • Guest

        #18
        It's reassuring to know I'm not alone with these problems. I find myself constantly thinking about this problem throughout the day. I've got to stop.

        Comment

        • Kayleigh
          Forum Member
          • Nov 2018
          • 1227

          #19
          As you rightly say Pink, you are definitely not alone with this issue - and I think it is probably more common than people admit to.

          Thinking of you, and really hoping that your GP or nurse will be able to get something sorted out for you very soon.

          Kayleigh x

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          • slp
            Forum Member
            • May 2018
            • 154

            #20
            Hi
            I have had the same problem for several years and totally understand how you feel x I take oxybutynin for bladder control twice a day and extra if I am going out talk to your gp or community nurse x don't be embarrassed about it x

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            • Guest

              #21
              Spoke to my mnd nurse today. Seriously thinking of having a catheter fitted.

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              • Kayleigh
                Forum Member
                • Nov 2018
                • 1227

                #22
                Hi slp,
                Thank you for kindly sharing that information with us. It is good to know that there is medication available, if I need it. I did not know that the medication existed before reading about it on this forum and so many thanks for enlightening me.
                Best wishes,
                Kayleigh

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                • Kayleigh
                  Forum Member
                  • Nov 2018
                  • 1227

                  #23
                  Hi Pink,

                  Great l to hear that you have spoken to your MND nurse for advice - hopefully, the nurse was sensitive and understanding.

                  If you decide to go ahead with the catheter, I hope that there is not much of a waiting list to get it fitted.
                  Kayleigh x

                  Comment

                  • Ellie
                    Forum Member
                    • Oct 2012
                    • 12572

                    #24
                    Pink, because the bladder issue is causing you so much stress and constant worry, I think you should give it a go.

                    It will also reduce the need for so many hoist transfers.

                    If you don't like it, it's easy to remove.

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

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                    • Ellie
                      Forum Member
                      • Oct 2012
                      • 12572

                      #25
                      Kayleigh, Community Nurses etc do the catheters in your own home, so no waiting lists.

                      Suprapubic catheters, which go directly into the bladder, are day cases in a hospital but most catheters are the standard urethral type, especially at the start.

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

                      Comment

                      • slp
                        Forum Member
                        • May 2018
                        • 154

                        #26
                        Hi Pink

                        I have had a catheter a few times for several weeks after spinal surgery and they are not difficult to get used to and very discreet x consider trying the oxybutenin as well ,I have been on it for years and it changed my life overnight x

                        Sarah x

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                        • Kayleigh
                          Forum Member
                          • Nov 2018
                          • 1227

                          #27
                          Thanks Ellie, Sarah and Pink,

                          Very interesting and useful to know about the catheter option in case it is something that I can benefit from in future - the info in your posts make it seem much less daunting and it is also very good to know that it is fitted at home, as I have a phobia of hospitals. Now I won't be shy about discussing the subject with my nurse if I need to.

                          Many thanks for sharing your knowledge/experience.

                          Many thanks to Pink for starting this thread in the first place - you have bravely spoken up about a subject that many of us are probably worred about, but will now feel much more confident about dealing with and talking about - thank you.

                          I hope you all have a lovely evening.

                          Kayleigh x
                          Last edited by Kayleigh; 4 January 2019, 17:56.

                          Comment

                          • Guest

                            #28
                            You are welcome kayleigh. It's a problem that is eating away at me. Constantly on my mind. Just got to sort the bowel problem now. How I wish I was like alot of people and went regularly at a certain time every day!

                            Comment

                            • Kayleigh
                              Forum Member
                              • Nov 2018
                              • 1227

                              #29
                              Hi Pink,

                              I don't think it is easy to get in a routine with bathroom trips. Usually, people go soon after they wake up and before they go to bed, but apart from that we have to be kind to ourselves if we do not have a fixed routine - after all, we are human beings and not clockwork dolls!

                              I am sorry that I can't advise you about the bowel issue. I feel a bit useless sometimes about not being able to give much useful advice - but I always try to remember what the more knowledgeable folk on the forum say, so that I can try to be more helpful with advice in future.

                              I don't like to think of you worrying so much, because we have enough to deal with, and being anxious affects our quality of life so much. There must be a solution to the issue out there somewhere - could your MND nurse advise you about this important issue or does she know who you can speak to about it?

                              Kayleigh x

                              Comment

                              • Guest

                                #30
                                My mnd nurse is unfortunately a bit doom and gloom. I'll talk to my physio as she is very knowledgeable.

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