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    Bowels!

    Sorry to raise this topic but now I have to be lifted by carers 4 times a day for commode action I have become fixated on bowel management. It’s very hit and miss at the moment. Firstly, I unwisely put it off for as long as possible then overdosed on laxative even more unwisely. I just find it hard to perform to order 😭. How do people cope with this?
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

    #2
    I am the same Rosemary. Let myself get so constipated it was agonising , thinking I could sort it out myself by normal methods eg controlling what I eat. Then started taking movicol from the Gp, and went the other way. Trying to find that balance is difficult, and I am still struggling. Have supplements with fibre. And increasing immobility complicates things more . Normal control goes out of the window. xx
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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      #3
      I have had a similar problem for about 3 years since my colostomy. Managing my stoma output is difficult. If one way it gets under the seal, very messy. At the other end of the scale, well you can imagine, not easy. I’ve got Movical too for morphine side effects but if I take it, it pushes my output into the escape under the seal mode. I have to try to take just a little Movicol. Xx
      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.

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        #4
        Rosemary6NT it's a topic we hate to raise...but needs must & all that.

        I've found a huge change which I put down being to less mobile & eating less food. I'm also finding that when I eat a meal I need the loo almost immediately...very different for me. It's hard to find a 'normal' pattern. Whatever that means.

        Sorry not much help with your query....I don't think anyone can perform to orderπŸ€”xx




        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #5
          Heather R Lynne K commiserations sisters xx
          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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            #6
            I can only go by drug πŸ‘€πŸ˜‰πŸ˜ŠπŸ€—πŸ˜˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              Originally posted by matthew55 View Post
              I can only go by drug πŸ‘€πŸ˜‰πŸ˜ŠπŸ€—πŸ˜˜xx
              Can I ask which drug?
              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                #8
                It was something that always bothered my husband. Morphine sulphate and immobility led to constipation and he had to get an enema, thereafter he would have one laxido a day and that seemed to be OK for a while. Made sure he was drinking regularly. Then the diarrhoea started, apparently for no reason that we could ever work out. Every week or ten days he would have what we would refer to as a 'clear-out' day but the rest of the time it would be normal bowel movements.

                It was tricky but because I was with him nearly all of the time he could get to the loo when he needed. Once or twice I had to abandon shopping, rush home, help him to the loo and then go back shopping again! There is no way that he could have managed his toilet needs on another person's schedule as it was so irregular.

                My husband's core muscles became weak quite soon after diagnosis so our nurse advised us that the softer the stools the easier it would be to pass them so we tried to keep that in mind with his diet and drinking.

                It was quite common too for him to feel as though he needed to go, but when it came to it he either couldn't or didn't really need to.

                Hope the above not too much info

                Hope you ladies get a solution soon that works for you xx
                Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

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                  #9
                  Sulpher piscolate or as I know it as water maker
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #10
                    Originally posted by matthew55 View Post
                    Sulpher piscolate or as I know it as water maker
                    Is that code for sodium picosulphate? πŸ˜†πŸ˜‰
                    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                      #11
                      Betty May thank you. There’s no such thing as too much information on here, all gratefully received x
                      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                        #12
                        Oh goodness.. this struck a chord Rosemary6NT . I find the indignity of having to be helped to the loo , albeit by my hubby, really hard.

                        I can't use toilets when out so it stops us having long trips. I used to take imodeum to stop me going and I still do when we fly but its really not a good idea as it makes you really constipated. It just stops the worry if you have an unavoidable appointment or occasion.

                        My MND nurse says it is trial and error with laxatives and hopefully you should find a routine that works for you. Im not quite there yet !!

                        Love Debbie x

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                          #13
                          Deb thanks. I have just put in an order for a variety of products! The worst thing is hanging in the toileting sling with your nether regions exposed to all the world. 😳😱
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                            #14
                            Rosemary6NT It can take a few days to get into a rhythm with any laxatives, which combination, which dose, when to take them etc - but persevere and it'll pay off.

                            My bowels used to rule the running order of my day (and night) and, for months, was the worst feature of having ALS for me. I knew my bathroom intimately - I knew how many tiles were on every surface πŸ™„ I was spending way too much time on the loo, getting stressed and even tearful...

                            It took about 2 weeks before I landed on a 'productive' regimen of a softener (my magic pink Docusate) and a pusher (Senna). My core is weak, making it difficult for me to push, hence the combination, and I don't go every day but 3-4x per week. Any little thing can throw me off, so I take a precautionary Movicol if needed.

                            Could the carers tie a scarf around your middle when you're on show? It must be harder to go in a commode pan but, I wonder... did you ever put hot water in the pan to try and relax things?? Obvs not touching you bottom!

                            All the best for getting a routine my lovely and you're certainly not alone πŸ€—πŸ€—πŸ€—πŸ˜˜
                            ​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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                              #15
                              Ellie thank you for your insight, I guess experimentation is the way to go. Starting this evening πŸ₯΄
                              Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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