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    Toilet times

    Hi there, for the last month or so I’ve found I need to pee more often but only a cup full. I also need a bowel movement about an hour after eating every meal. I have extreme flatulence on a morning after using my NIV overnight which is understandable but this also manifests after eating.
    Is this normal progression of the disease ?
    Apologies for bringing this up on here but I don’t have an MND nurse and I know my GP is not that experienced with the disease.
    Regards Jerry

    All I know is that MND is the original Box of Chocolates. You never know what you're getting next. I have to stand there for five minutes every time I pee. This might be age or something else but it's just one more sodding thing to deal with. 😉😊
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Stephen tells me (he doesn't need to as I've noticed) that he (As he put it ) farts all day! He also pees goodness knows how many times a day. During the night he didn't get much sleep because he was forever going to the loo so much so I put a porta potty outside the bedroom door. Since having his bipap machine during the night he's getting 6 hours sleep with out a trip to the toilet. We don't understand the connection but there you go. Mnd seems to be a big box of a variety of conditions 🤔
      when i can think of something profound i will update this.


        Hi Jerry

        NIV can cause an increase in flatulence as air can go down in to the stomach. If this is happening quite a bit and causing discomfort, then it's worth speaking to your respiratory team as they made need to check the settings on the NIV.

        MND isn't thought to directly affect the bowel although it can cause a weakness in the abdominal muscles which can then affect the bowel. The bladder also isn't believed to be directly affect by MND but people do sometimes report changes in bladder function. It may be worth speaking to your GP to rule out any other causes as there are many things which can cause a change in bladder or bowel function.

        Best Wishes

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


          Oh dear, Jerry. That all sounds a bit frequent.

          I’m not qualified to comment medically, but let me pass on some information about one aspect that I was given recently by my specialist MND nurse.

          The feeling we might want to go to the loo after a meal is perfectly normal. It’s caused by the gastrocolic reflex:

          Basically, as the stomach is stretched by the intake of new food, signals are sent to the colon to keep the previous intake moving to make room, so to speak. It is almost non-existent overnight and strongest in the mornings usually.

          Diagnosed April 2017


            Hi Denise - as the respiratory function weakens one side effect is commonly for the body to be woken every hour or two at night feeling a need to empty the bladder. I had this but it went as soon as I started on NIV overnight.


            Diagnosed 05/2017 Familial ALS Limb onset


              Using NIV shouldn’t pump air into your stomach Jerry - it could be because your IPAP is set too high, you have the wrong type of mask or both. As Rachel said, have this checked out by the respiratory team. Are you a mouth breather?

              Do you know how you might be taking in air as you eat your meals? Or are you quite hungry when you do eat? Trapped air can be released from the stomach using the feeding tube - if you don’t have a PEG Nurse, there are YouTube videos on how to.

              Sorry to mention that the pee thing could be age-related 😏 My dad was the same and it was his prostate. It also could be a side effect of medication or a spasm, but don’t assume it’s MND related - there could be treatments available.

              Don’t knock the regular bowels - most of us go the other way 🙄

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


                Thanks folks,
                So true Matt
                Denise, I’m getting a good six hours too
                Rachel, I was having trouble with the settings but I’ve sorted that with the respiratory nurse. As usual Ellie a font of knowledge but less about the age eh. Not so long ago I could drink pints for England and not go to the loo 😜
                Doug I think you’ve hit the nail on the head as these are my symptoms exactly. I’ll see if serotonin eases it before consulting the doc.
                Night all x