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Bowel and bladder problems

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  • Olivia H
    replied
    Sorry to hear you have been feeling so poorly Pink. It is the time of coughs and colds, which is so much harder when we also have mnd. Hope you get the help you need x

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  • Ellie
    replied
    Hi Pink,

    You've been on my mind - have things improved any or have you made a decision yet?

    Love Ellie.

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  • Kayleigh
    replied
    Hi Pink,

    A great shame that your nurse does not have a more positive outlook about things. They are meant to be encouraging us to look on the bright side!

    It can't be an uncommon medical problem and so hopefully it is something that you can get advice and help for quite quickly.

    Just a thought, which you might have already thought of, is there anyone at your local hospice that you can talk to about this? I was given a phone number of the nurses at my local hospice, in case I want to chat to them to them about any worries and to get advice. Hopefully, all hospices offer this, because sometimes we need to talk to someone sooner rather than later, and I find that the nurses there are always so caring and understanding.

    Kayleigh x

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  • Pinkelle
    replied
    My mnd nurse is unfortunately a bit doom and gloom. I'll talk to my physio as she is very knowledgeable.

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  • Kayleigh
    replied
    Hi Pink,

    I don't think it is easy to get in a routine with bathroom trips. Usually, people go soon after they wake up and before they go to bed, but apart from that we have to be kind to ourselves if we do not have a fixed routine - after all, we are human beings and not clockwork dolls!

    I am sorry that I can't advise you about the bowel issue. I feel a bit useless sometimes about not being able to give much useful advice - but I always try to remember what the more knowledgeable folk on the forum say, so that I can try to be more helpful with advice in future.

    I don't like to think of you worrying so much, because we have enough to deal with, and being anxious affects our quality of life so much. There must be a solution to the issue out there somewhere - could your MND nurse advise you about this important issue or does she know who you can speak to about it?

    Kayleigh x

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  • Pinkelle
    replied
    You are welcome kayleigh. It's a problem that is eating away at me. Constantly on my mind. Just got to sort the bowel problem now. How I wish I was like alot of people and went regularly at a certain time every day!

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  • Kayleigh
    replied
    Thanks Ellie, Sarah and Pink,

    Very interesting and useful to know about the catheter option in case it is something that I can benefit from in future - the info in your posts make it seem much less daunting and it is also very good to know that it is fitted at home, as I have a phobia of hospitals. Now I won't be shy about discussing the subject with my nurse if I need to.

    Many thanks for sharing your knowledge/experience.

    Many thanks to Pink for starting this thread in the first place - you have bravely spoken up about a subject that many of us are probably worred about, but will now feel much more confident about dealing with and talking about - thank you.

    I hope you all have a lovely evening.

    Kayleigh x
    Last edited by Kayleigh; 4 January 2019, 18:56.

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  • slp
    replied
    Hi Pink

    I have had a catheter a few times for several weeks after spinal surgery and they are not difficult to get used to and very discreet x consider trying the oxybutenin as well ,I have been on it for years and it changed my life overnight x

    Sarah x

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  • Ellie
    replied
    Kayleigh, Community Nurses etc do the catheters in your own home, so no waiting lists.

    Suprapubic catheters, which go directly into the bladder, are day cases in a hospital but most catheters are the standard urethral type, especially at the start.

    Love Ellie.

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  • Ellie
    replied
    Pink, because the bladder issue is causing you so much stress and constant worry, I think you should give it a go.

    It will also reduce the need for so many hoist transfers.

    If you don't like it, it's easy to remove.

    Love Ellie.

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  • Kayleigh
    replied
    Hi Pink,

    Great l to hear that you have spoken to your MND nurse for advice - hopefully, the nurse was sensitive and understanding.

    If you decide to go ahead with the catheter, I hope that there is not much of a waiting list to get it fitted.
    Kayleigh x

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  • Kayleigh
    replied
    Hi slp,
    Thank you for kindly sharing that information with us. It is good to know that there is medication available, if I need it. I did not know that the medication existed before reading about it on this forum and so many thanks for enlightening me.
    Best wishes,
    Kayleigh

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  • Pinkelle
    replied
    Spoke to my mnd nurse today. Seriously thinking of having a catheter fitted.

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  • slp
    replied
    Hi
    I have had the same problem for several years and totally understand how you feel x I take oxybutynin for bladder control twice a day and extra if I am going out talk to your gp or community nurse x don't be embarrassed about it x

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  • Kayleigh
    replied
    As you rightly say Pink, you are definitely not alone with this issue - and I think it is probably more common than people admit to.

    Thinking of you, and really hoping that your GP or nurse will be able to get something sorted out for you very soon.

    Kayleigh x

    Leave a comment:

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