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Continence issues

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    Continence issues

    Hi my husband has just been diagnosed ( I say “diagnosed” but consultant unable to say this as he meets, at the moment , only 2 of the 4 diagnosis criteria! Can only say “ MND is what we are looking and what we need to plan for”)
    I am concerned because for some months my husband has had issues with extreme sudden urgency in both bladder and bowel emptying (at different times) which is extremely embarrassing and inconvenient as he tries to continue to work. Is this a “normal” symptom of the disease or is something else going on that needs investigating? ( He obviously feels he has been literally investigated to death!)
    Thank you in anticipation of information.

    Hi Michvw

    Sorry to hear about the diagnosis. With regards to the bladder problems it's generally recommended that you get a catheter. I have a urinary catheter and after a few days I don't even notice it anymore. A lot of people on this forum recommend a supra pubic catheter and you should speak to your doctor about this. There is also an external catheter that goes on like a condom but it has an opening at the end and any urine just drains in to a bag attached to your leg. The advantage of this is it is not invasive. You can talk to the doctor about the options or a nurse from the mnda association about which is the best way for now and you can change to other catheters in time if the mnd progresses.

    I can't recommend any thing for the bowels as I haven't had to deal with that yet.



      Hi Michvw and welcome to the forum;

      Sorry to hear about your husbands probably diagnoses.

      Mick gives you some good advice about bladder problems. It's probably worth trying the condom type things to start with, they are called "Conveen" and many areas have a nurse that specializes in this. Generally Mnd doesn't affect the bowels or the bladder earlier on and urgency issues might be a sign of a enlarged prostrate or something else.

      Like Mick, I can't help with bowels much. Nappies are a obvious answer but they are not dignified etc. Might be worth looking at his diet and possibly modifying it. You can get a electric pulse machine that is supposed to strengthen the muscles that hold it in. It's best to get specialist help for these matters.

      Best wishes, 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.


        Dear Michvw
        I can understand how frustrating this must be for your husband and yourself, not knowing whether your husband will be given a diagnosis or not.
        Because double incontinence is not a usual early symptom of Motor Neurone Disease (MND) the Consultant is probably being very cautious about giving a diagnosis and wants to watch the progression of your husband’s symptoms.
        Incontinence can occur as the disease progresses because as the mobility becomes affected this may make it more difficult to reach the toilet in time.
        Abdominal muscles may also become weakened which can lead to constipation which in turn can cause diarrhoea. Changes to diet can also cause bowel incontinence.
        It is difficult to say what may have caused your husband to have bladder and bowel urgency, but this is not a usual symptom of MND and needs further investigation.
        Has your GP referred your husband to the continence team? They may be able to help with practical suggestions on how to manage his incontinence.
        If you have any further questions, please do not hesitate to ask.
        With kind regards
        Jacqui Anderson
        Senior MND Connect Adviser
        MND Connect
        Contact us on 0808 802 6262 or at [email protected]


          Thank you so much for all your advice. Think he needs to see his GP again to get things checked.


            Hi Mich and welcome to the Forum.

            Sorry your husband has a 'kind of, maybe' diagnosis of MND and has this embarrassing, distressing issue which must be really getting him down

            As Jacqui said, incontinence is not typically associated with early stage MND. Both bladder and bowel sphincters can be affected in ALS & PLS, but in ALS, typically not until late stage, if at all. Meds and diet can also cause urgency but typically, either bowel or bladder, not both.

            Because he has urgency/incontinence in both his bladder and bowel functions and obviously has some neurological issues which lead him to this tentative diagnosis, it warrants further investigation to see if nerve dysfunction has a role in the sphincters failing. It may even help to shed light on a diagnosis...

            In the meantime, getting in contact with an Incontinence Nurse is a good idea - as well as physical interventions, he might find there are meds which will help him.

            Wish you both all the best.

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