Dehli Belly if we go out

Discussion in 'ARCHIVE FORUM: Support discussions' started by Rosalind, Aug 13, 2005.

  1. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    My husband, who has vascular dementia, needs to find a loo all the time when we go out. I am sure this is a nervous thing, and have spoken to his doctor, who agreed this was likely and gave him some tablets that can be taken in advance of planned day trips. At home, he is not dashing to the loo all the time.

    Since he no longer drives, he hardly leaves home unless with me, and this does not happen that often. He thinks he would like to go on outings etc if we discuss them in advance. Then the moment we are off, he starts worrying about loos, and apparently genuinely is in need of them. He said it is the motion of the car, but as he drove for a living between London and Nepal for decades, it is unlikely he would have survived beyond Dover if the internal combustion engine makes his internal workings go haywire.

    I don't like never going out with him, in the way we used to, so today we were going to a town about 10 miles away to buy a replacement coffeemaker. We were diverted by closed roads, and by the time we had got back to the right road he said he would rather go home, for the usual reason.

    Do I keep trying to get him out, with more preplanning in pill form, or is dragging him off on expeditions or any sort more trouble than it is worth? He thinks he wants to do these things, and I feel bad about not including him. And of course he does not remember what happened last time.
     
  2. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    54
    Shropshire
    #2 chrissieL, Aug 13, 2005
    Last edited: Aug 13, 2005
    Hi Rosalind,
    My husband also has VaD and we have exactly the same problem, every time we go out. With him it does also happen at home sometimes ( that he has very little warning). He also doesn't remember it happens. He really doesn't want to use public toilets or toilets in a restaurant etc. because of smells or if he can't manage without me. I have been putting it down to all the medication he is taking since he came home from hospital, nervousness about going out and age, but maybe I'm wrong.
    I now plan our outings so that there is a disabled persons toilet wherever we go, if possible and I've just sent off for a radar key so that we have access to all.
    Isn't it a pity because we could so much more if it didn't happen!
    Does your husband have a lot of medication for high blood pressure and cholesterol etc. because maybe that has something to do with it?
    What does he take before you go out because I'd be really interested to know as we are going on holiday to Pembrokeshire next month and anything that would help would be great.
    p.s. I continue to take him out because he really enjoys it!
     
  3. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    Hi Chris

    He has had 'co phenotrope' which is the technical name for Lomotil, which I think you can buy over the counter.

    Does your husband understand that it is not some rare and strange disease that is undoubtedly striking him down? It has to be said that mine has always had a tendency to hypochondria, and years ago had an attack of the runs which he was certain was something exotic picked up on his travels, despite the fact that he had not actually been to the tropics for at least a year. Aha, that proved how strange and alarming it was, he said, and took himself directly to the Hospital for Tropical diseases. Needless to say it was just a bog (sorry) standard upset stomach.

    I can't work out if he minds if I go off to car boot sales or whatever on my own. He does not say so, and may well not, but getting him to say anything about what he feels is like drawing teeth.

    He's not on any medication apart from little aspirins, so can't blame drugs.

    Rosalind
     
  4. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    54
    Shropshire
    Hi Rosalind,
    Thanks for the tip with the pills, I suppose I should ask the G.P. first before I give them to him.
    Sounds like we married the same man! Yes he is obsessed with his toilet habits, that's probably why we have such problems when out. He has poor mobility too so maybe he feels vulnerable when away from home and panics about getting to a loo in time. Even when we are at home he prefers to go upstairs (very slowly) to his en-suite. My heart's in my mouth in case he doesn't make it in time then. What a life!! I don't see it getting any better though so I'm trying anything that will help to make him feel more confident. Apart from that it means I get to go out more too.
     
  5. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Do not read this if you are squeamish!

    Hello Rosalind and Chrissie

    I didn't have this problem with my husband (or only once and we were just taking a walk and managed to get home just in time!)

    But I can advise you about medication to slow down the action of the gut, as I have colon cancer and had to have an ileostomy to bypass the colon (something like a colostomy, but leading out of the small intestine rather than the colon, into a bag), so the "output" as it is politely described, varies between fairly liquid and very liquid, and can be more or less continuous, as the colon (large intestine) is where the water in the poo is normally reabsorbed into the body, and mine has been taken out of the equation.

    I can usually control it to an extent by making sure I eat certain things, especially "stodge" i.e. mashed potatoes, pasta, bread, rice etc, but if I want to make sure that things will be under control, if I am going out somewhere special for example, or I am not sure I will find a decent loo to empty my bag, I have a supply of Loperamide Hydrochloride 2mg capsules. If I take two of these, my gut stops working for several hours. They are the generic form of "over the counter" Imodium, which many people buy to take on holiday for Delhi Belly purposes, but Imodium costs a lot of money for just 6 capsules.

    I get the Loperamide on prescription from my GP and they come in a pack of 30 capsules.

    I am also on Chemotherapy at the moment, which has a liquifying effect, so I am
    taking one capsule every few hours to keep things under control, so that I don't get dehydrated.

    It may be worth asking your GP about this and whether he could prescribe some for you to try, perhaps if your husband took them an hour before you go out, he shouldn't get the urge to go. However, if it is a psychological worry thing rather than a real physical need, they wouldn't help. Or you could just buy some Imodium to try it out - it is the same thing.

    I wouldn't advise continuous use, as this could lead to constipation in someone with a normal gut, and this would lead to worse problems.

    Sorry to have been so graphic, but I have learnt a lot about the digestive system and how it works since having the ileostomy, and thought this might be worth a try, if it means that you can enjoy outings with your husband.

    Good luck!

    Ruthie
     
  6. chrissieL

    chrissieL Registered User

    Jun 22, 2005
    54
    Shropshire
    Hi Ruthie,
    Thanks for the info, it sounds like you have plenty of troubles of your own.
    My husband goes from being constipated to being explosively loose, this is all since being in hospital with U.T.I. and being diagnosed with VaD. I'm sure it is mostly the medication that is causing it, having said that it was happening occasionally before. I think it is a mix of drugs, age and nerves and I'm nervous of using imodium on a regular basis in case it increases problems with constipation, but I might try it before we travel any distance. It's the small trips out that are the problem, so I think I will just have to be sure I can get him to a loo where possible.
     
  7. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    HI, mum takes 1 imodium in a morning on a regular basis this keeps her going without getting constipated i do a bit of juggling if i know we are going out and might give her another one you learn by trial and error but i do think nerves play a big part,I do not tell her we are going out till the last minute otherwise she works herself up.STORM
     
  8. Suzy R

    Suzy R Registered User

    Jul 4, 2004
    40
    Switzerland
    Hi Ruthie

    Sorry about your problem and hope things get better for you.

    I wonder if this medication would work for my mum ? She has a colostomy and almost constant 'output' due to irregular eating habits (with her AD she forgets she has eaten and pigs out on toast and coffee every 45 minutes or so). Consequently we can't go anywhere without accidents happening and daren't visit anyone's house.

    I must admit, I always thought immodium (or equiv.) was a complete no-no with colostomy / ileostomy...


    Suzy
    x
     
  9. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,093
    Toronto, Canada
    Rosalind, my mother has gone through the same thing several times. She would say she had to urinate, even if she had just gone 10 minutes ago. And then of course it was "There's nothing there". We had several tests done for UTI with negative results but I personally thought (and still do) it happened whenever she was in a situation she didn't want to be in and it was her only way of removing herself. There's also her sore throat and her sore back.

    I really think it's a way for her to try & get a grip on her life & give her some kind of control. She normally wants to go out, too.
     
  10. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Hi Suzy

    Not sure about colostomies and how Loperamide/Imodium would affect things - I know that usually colostomies produce more "formed' output, and can be quite regular ie once a day in the morning, whereas ileostomies are loose and work about 90% of the time - but if your mum is eating very irregularly or at frequent intervals that may be the explanation.

    I was originally given the Loperamide in the hospital after my operation, and my GP prescribes it for me to take as much as I need to - also it is routinely given to me after my chemotherapy in case I get diarrhoea as a side effect of chemo, so clearly it is fine for people with ileostomies, but I don't know the score with colostomies.

    Is there a specialist stoma nurse at your local hospital? - there should be one if it is a General Hospital doing surgery. Ours is very helpful. If you phone up the hospital they should be able to put you in touch with one who would be able to advise, and she may well do a home visit so that you can talk this problem through.

    Hope you are able to sort this out.

    Best wishes

    Ruthie
     
  11. Suzy R

    Suzy R Registered User

    Jul 4, 2004
    40
    Switzerland
    Hi Ruthie

    Thanks for the info. We have had this one out with both the stoma and district nurses and their joint attitude is that Mum should be training her bowels. However, Dad prefers that she eats as she feels like it, rather than becoming aggressive (and violent) when told otherwise. I suppose the situation would also vary depending on just how much of her colon she has left.

    With regards to the need to wee before going out, I mostly distract her if I know she's been already.

    Suzy
    x
     
  12. Ruthie

    Ruthie Registered User

    Jul 9, 2003
    114
    South Coast
    Hi Suzy
    Perhaps the stoma and district nurses should be made aware that people with Alzheimers just aren't able to take on board the need to eat in a regular controlled way, and that the idea of her understanding the need to "train" her colostomy is just not possible.

    I sympathise with your Dad letting her eat when and what she wants - it is just so much easier to avoid upsets and aggression by just going along with what is wanted at that moment, and totally unproductive to try to explain things or use reason - I know, I've been there, not with food issues but with other things!

    Kind regards

    Ruthie
     

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