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  • Heather R
    replied
    Miker my bowels never seem to get back to normal now, new medication may upset things just when I think I have sorted them. I have fibre fortisip, and docusate and sennoket, and movicol added when needed. Losing mobility definitely doesn’t help! These things can sometimes feel the last straw I find, and dominate the situation as you say. I used to get IBS, horrid, do hope mebeverine helps. X

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  • Hakuna
    replied
    There doesn’t seem to be a simple answer What works one day doesn’t work the next

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  • TinyLady
    replied
    Miker - wow, that sounds frustrating. I have found fibre boost powder and probiotic yoghurts are helping me, but I'm still not sorted and have become so unwell since being allergic to the drugs they keep "trying" on me, so I have had to stop all my medication.

    My whole digestive system is now in total chaos. But that isn't the MND it's the damage caused by the drug allergy. I have ended up feeling I am totally on my own to manage it (or not manage it) and it is impacting everything.

    I hope you find a winning formula and can find something more trivial to talk about, because these issues are just awful x

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  • Miker
    replied
    I’m a little late to the party (as always). Is it common for us to start with bowel problems once we become less mobile? I have become chair bound since a fall on Xmas Eve 2021 and have constant bowel challenges. Following recommendations of palliative team and GP I have tried various combinations of stimulants and laxatives but have still not found a winning formula. There is a background of IBS so today took my first dose of mebeverine. I can spend hours on the loo so as to avoid my caring wife having to hoist me on and off every time I feel the urge. This has become so frustrating for us both, and I seem to talk more about this than the MND with the palliative team. Trial and error seems to be the only option.

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  • TinyLady
    replied
    Ellie - so glad your daughter could help you out.

    Not sure why metaclopramide to be honest. They have decided I don'thave constipation, despite my firm belief I do. I just wish someone would examine me soon before my stomach breaks my ribs 🤣

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  • Ellie
    replied
    Oh laugh away, Tiny, it's either feast or famine, isn't it.

    Originally posted by TinyLady View Post
    ... you sat on the loo with a guilty looking husband nearby
    And no, he had left for work an hour before the gurgles started 😏 Thankfully my daughter was still at home and put me on the loo 👍 I wouldn't have lasted the 35mins until my carers came.


    Originally posted by TinyLady View Post
    he is Prescribing metaclopramide.
    To deflate your stomach?? Diarrhoea is a common side effect, as is sleepiness 😬

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  • TinyLady
    replied
    Oh Ellie I shouldn't laugh.... but it did bring an image of a slightly alarmed you sat on the loo with a guilty looking husband nearby 🤣

    Yes, I'd be happy with that. Palliative care consultant phoned me and said CT scan was clear so I MUST have had diarrhea when I thought it was the laxido coming through (orange water....?) so I am very confused. In 16 days I've seen about an egg cupful of poo on each of the last two days....

    So he is Prescribing metaclopramide. Meanwhile my stomach is backed up under my ribs and breathing is exhausting. My muscles are so tired.

    My husband is terrified I won't survive this based on my history.
    (Born with hip dislocation, finally found aged 4.5, Appendix issues finally removed after 5 days uncertainty, 1st baby stuck as cervix doesn't dilate, realised after emergency c section, Mortons Neuroma missed on several scans until private and was massive, oh... and my 4 year MND misdiagnosis and fobbing off). No one has EVER correctly diagnosed me straight away. EVERY time though I have known what was wrong and eventually been proved correct.

    I just hope I am wrong this time.

    I'm uncomfortable but feel strangely calm and content today.

    Zante - macrogol same as Laxido, which I took for several days and came straight through. Apparently I have no impacted poo, the CT scan was all clear.... so they think I am mistaken. I'm really scared and confused by that.

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  • Ellie
    replied
    I had an emergency of my own this morning due to my darling & clever husband miscalculating the ml equivalent of mg and giving me twice my usual dose of laxatives last night 😲😬

    Needless to say I spent a while on the loo this morning, I kept thinking how much you'd love to do this TinyLady 🤣🤣😘

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  • Zante
    replied
    I don't know if this has already been mentioned and so sorry if I am repeating something ( didn't fancy rereading 7 pages again about poo!!) But nhs website says Macrogol is used for impacted constipation up high in the bowel and for people who have been constipated for a long time. Sachets dissolved into liquid. Xx

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  • TinyLady
    replied
    Zante glad Holly is OK. Don't think I would be using the scrunching again either 🤣

    Got solutions here that work for constipation now... trouble is I can't seem to shift the blockage up near my stomach. It's stopping me sitting up or eating much. I'm so bloated. I think my system is OK now. It feels way less stressed. But there still seems to be an impass and input does not match output!

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  • Zante
    replied
    Erm yes Holly is fine thanks. She seems to be going through a second puppy hood at 3 years! Took 4 days but it did reappear. Dont fancy using it now however! Yes all bran I used to have and have same problem as u now so can't eat it. With the prunes which work wonders can u use a food blender and make them into more liquid consistency? I don't have a blender so don't know how much they can do. For me I had constipation before mnd but have honestly found prunes and same time using lactulose is only thing that works for me. I know everyone is different. Really hope now u have had 1 "lift off" it might kick start your system. X

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  • TinyLady
    replied
    Zante - I hope your dog is OK? Yes I used to eat All bran most days. Works very well. Now I just choke on the bits.

    Sadly no further progress today and a very bloated tummy. Small steps maybe... tomorrow 🤞

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  • Zante
    replied
    TinyLady thought of u this evening when out with my dog... I solved the mystery of my missing orange hair scrunchie which I discovered she had eaten!! A spoonful of All Bran was all it required and I thought I wish it had been that easy for u

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  • Hakuna
    replied
    Glad you’ve found a solution. Its so important to be able to ‘go’.

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  • Ellie
    replied
    TinyLady Whoop whoop, the eagle has landed 👍👍 👍😘

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