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    Bowel and bladder problems

    Hi people. Havent posted for a while as I've had yet another chest infection and been pretty poorly.
    I have another problem now which I feel embarrassed about and stressing over it.
    I am finding that when I need a wee or need to empty bowels the feeling comes on so quick by the time I get into wet room and get hoisted it's too late. It's on my mind constantly now and freaking me out. I wear tena pants most of the time but if mick takes me he finds it hard getting them on me by himself so I go without.
    Im finding this very hard to talk about but I know you will all understand. Any advice please???

    #2
    Sorry Pink, you're really having a tough time these last few months.

    There are meds for urinary urgency which your GP can advise on. Unpalatable though it sounds, a catheter might be a good option and remove that particular stress.

    Did you say you've IBS or maybe I'm mixing you up with someone else? Could it be the food? Are you on the Multi-Fibre one?

    When I was badly constipated, I got overflow diarrhoea which is when impacted hard poo is stuck in the bowels and had very urgent needs. I had gurgles in my bowels and I only had a few mins to get to the loo. It took a laxative regime to solve the issue.

    Can your GP refer you to a Continence Nurse/Service? I know it's embarrassing but it's hellish for you at the moment...

    Love Ellie.
    ​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
      Yes I do suffer with ibs. They did ask me at the hospice about a catheter but wasn't keen as I was just getting used to the rig. I wish they did it at the same time. Its getting me down now x

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        #4
        So sorry Pink for your problems ,Not surprised you're feeling so low.

        Sometimes I need to rush to the loo and obviously I can't be quick . Of all the difficulties with MND I find the loss of dignity the worst thing to cope with.

        I hope you get some answers and advice soon.
        Love Debbie x

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          #5
          Good luck finding solutions Pinkelle. I can relate to some of what you say and I'm still just about Mobile. I'm not surprised that it's taking its toll on you and feel for you. Lynne x
          Last edited by Lynne K; 27 December 2018, 21:15.
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
          I'm staying positive and taking each day as it comes.

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            #6
            Hello Pink,

            Sorry to hear that you have been so unwell. I hope that you were able to enjoy Christmas with your family.

            I get where you are coming from about the issue of getting to the bathroom in time. Sadly, the days of being able to dash to the bathroom at the last minute are long gone for me and my rollator - now it involves some advance planning to allow enough time to get there!

            Sometimes we actually need the bathroom before we get the feeling that we do. I find it works being pre-emptive about it. For example, instead of waiting until you think you need to go, try making your way to the bathroom before then e.g half an hour or one hour after every meal-time or drink. That may work because we usually need to go to the bathroom fairly soon after eating or drinking anyway.

            Sorry that I can't be of more help. As always, Ellie has provided some great advice, and hopefully if you speak to your GP or nurse in the new year a long term solution can be provided for you.

            I agree that it can feel embarrassing for us to discuss these sensitive issues, but I am sure that the nurse (or other medical professional) will put you at ease by talking things over with your in a sensitive way. He/she will be aware that this is not an easy subject for any patient to deal with and so they should be kind and understanding.

            I find that whatever problems we have, the medical professionals do their best to provide a solution - I find that letting them 'do their thing' and going with the flow of things (sorry about the pun) helps, rather than worrying too much.

            Hopefully, once you get the ball rolling...a solution can be found for you... and that will be a problem solved that you no longer need to worry about!

            I hope that you feel much better very soon.

            Love and best wishes to you and your family,
            Kayleigh x
            Last edited by Kayleigh; 27 December 2018, 23:59.

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              #7
              Thanks for the advice girls. I'm taking kayleigh advice at the moment and making my way to bathroom before I really need it. I will talk to someone in the new year xx

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                #8
                Hi Pink, so sorry to hear you’ve been unwell again and now to have this problem too.

                hope you can get help and advice to sort this out very quickly. Take care xx

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                  #9
                  Hope you are feeling a bit better today Pink.
                  Kayleigh x

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                    #10
                    hi hope that ur ok
                    Pink, wise to go before loo before ur desperate x

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                      #11
                      Pinkelle, Yes convinced MND switches lots of things off. I am often constipated for couple of days and as typing now got stomach pain hope my usual Saturday curry and pint clears me. I have taken two Senokot tablets and hope that clears me. I also have pee accidents sometimes just fallen asleep in my wheelchair and ride around in house to my pee bottle. I do sometimes have a leg cramp as well. Luckily now have a pee pad in as well so when out and about hopefully no accidents. When out of the house always careful how much I drink so not struggling to get to the toilet. I do go to local Hospice for a day break luckily access there very easy. Best wishes John

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                        #12
                        I have the same problem and was told the bladder problem was not necessarily connected to MND and was referred to a urologist. I am on both memedications for this, Solifenacin and Betmiga which can helpa lot and did for a while but not now.

                        So have been sent for scans, ususal delay , 7 weeks later waiting for results after lots of chasing GP on case, but she says the likely result barring anything wrong, is a catheter or sub pubic catheter which involves a day admittance. Both need tubes changing every 3 months.

                        Fel for you Pnkelle, I live on my own and I get very frustrated, as I am in a wheelchair permanently and have to baord across to the toilet, preplanning doesnt always work, and Tena pants whilst very good are a a great difficulty when you cant get on or off disabled loos. Happy days x

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                          #13
                          Sounds like the bladder issue is not an uncommon one! Great that we share our experiences/knowledge to help each other and also to know which medical professionals to approach for help.

                          Loobylou, I am sorry to hear that it is taking so long to get the medical resolution that you urgently need and that should make your day-to-day life much more comfortable. I hope that things get sorted out for you very soon.

                          Best wishes,
                          Kayleigh x
                          Last edited by Kayleigh; 31 December 2018, 01:14.

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                            #14
                            I'm sorry things have been so hard for you Pinkelle x I have this too. I used to have leakage as well but that's stopped, which makes me feel it might be MND related for me cos my MND stuff seems to come in waves. Having read this thread I'll ask my doctor about it. When my daughter had urinary issues they said for her to drink a regular amount through the day and go to the loo at regular times in the day, i wonder if that's a help to us as well? I bet they'll say no tea though! Sob sob. I'm not in a wheelchair yet so ha e been dealing with it by buying bigger stretchier pants and very easy to pull up and down thermal leggings from m and s in a bigger size. I found them because someone with MND r reviewed them! They seem to help with my leg spasticity too.

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                              #15
                              My GP is waiting on a sample from me as I am peeing far too much for example my chipped tooth made it too painful to drink today and before a drop was drunk I peed 3 times this makes me dehydrated. But I think the getting to the loo too late is common. When walking is so slow. I think some urgency is related to muscle wasting and the metabolites created by that will be excreted in urine which can irritate the bladder. As an aside damn fasiculations caused by bladder to empty without any control on one occasion

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