Course talk on diet

Hi Kev. I didn’t read it in time, sorry, but experience tells me that the bladder and bowel definitely work together in many ways. One of my problems is constipation due mostly to the drugs I take and when I’m constipated I can’t pee. I go into retention and have been known to store well over a litre. I just can’t “let go” but get really uncomfortable and have to self catheterise regularly. When the bowels are okay the bladder often works too.

What I did learn last night is that you can self refer to the continence nurses in your area but you’re most likely to get seen rapidly if your ms nurse refers you. Last night we got the usual healthy diet, lots of fibre, adequate fluids etc but they really pushed us to get referred. I’d definitely go down that route Kev as they’ll see you as an individual and help you. My continence nurse is lovely and helps me, doesn’t judge or expect major diet changes etc, really professional but friendly at the same time.

Cath xx

[quote=“Min”] When the bowels are okay the bladder often works too. [/quote] Exactly! [quote=“Min”] What I did learn last night is that you can self refer to the continence nurses in your area but you’re most likely to get seen rapidly if your ms nurse refers you. [/quote] I’ve been round the block with the continence service without getting much help, apart from a supply of pads. Unfortunately, due to a quirk in the referral system, my GP ( Milton Keynes based surgery) has to refer me (Milton Keynes borough resident) to Northants continence service based in Daventry. We did originally meet the MK continence nurse who was great. She wanted to start me self catheterising in 2012, but then realised that because of the above mentioned quirk, she shouldn’t be treating me. It took until this March to get going on self catheterisation. In fact it was the MS nurse who got me going on that. I have every faith in her and none in the continence service. Anyway, thanks again for all the advice you have passed on from the whole series of discussions. Kev x Ps the referral quirk is simply that our GP surgery, though within MK, is part of a group of surgeries based in Northants, which is where they direct their funding. We’ve tried to change to MK continence service but apparently we can’t. However, I can choose whether to see a neurologist in either hospital trust, so I see an MK neuro, and Northants physio, continence and ms nurse.

Kev I understand the border thing as I live in South Cumbria and our nhs trust has hospitals in Cumbria and north Lancashire, we’re in the much discussed (negatively) Morecambe Bay trust so I’ve been up and down the M6 quite a bit but fortunately the ms care where I am is fantastic. I’m very grateful to the team as my gp has only just qualified and his favourite quote seems to be “what would you like me to do?” I know I’m a retired nurse but I go there as I can’t treat myself.

Cath xx

My GP is fab, too. She’s been with me through AF, lymphoma and now this. She works hard on my case. She certainly knows my face by now!!

Thanks for that Cath. On fibre, it’s difficult to get the balance right. When I told bowel nurse the amount of fibre I eat she was a bit surprised. Muesli or porridge for breakfast, wholemeal bread, fruit with skin on… can’t remember what else but I’m sure there’s more. Anyway she said for that amount of fibre you need to drink copius amounts of water as the trouble is that fibre is very dry and gets stuck before it even gets to the bowel. I told her that often … OH GOD what are those things called… you put them up bottom to make you go to loo??? Anyway she told me that they weren’t working because the poo hadn’t got down to the bowel but was still in intestine. So I increased my liquid intake… by mixing orange juice and water 50/50 and basically having it at hand all day… and I lowered my fibre by peeling fruit & alternating white bread with brown (I bake my own bread in machine so one week I do a half and half wholemeal and white, and next week white). All this together… including the orange juice… has helped to keep me fairly regular. Sorry so long! Case of ‘too much information’!!! Love Pat xx

Pat you reminded me of something else she said, the amount of fluid we need in a day is worked out on body weight: 30mls per kg. I drink more than double that but can’t reduce it as the morphine makes me constantly feel thirsty. My continence nurse couldn’t get me to reduce it so I’m happy continuing and she’s just given up trying, rather that than the alternative. Come on, we need a quality of life and tea makes me happy.

Oh and the word you can’t find is suppositories. They’re very good but all laxatives work differently and only work if used under the right conditions. Unfortunately having ms causes us to have what most other people would class as “very personal and inappropriate” conversations without much encouragement or embarrassment as it’s symptoms most of us experience and after a while you lose those reservations. It’s all part of life.

Cath xx

I thought the word Pat was looking for was subpostoffices. Cath’s right. I take great delight in telling all my male friends about self catheterisation! The response is always the same- a look of extreme pain & revulsion. I know they don’t believe me when I tell them how easy it is.

Oh that’s the word… subpostoffices… thanks Kev!!! :slight_smile: Thanks Cath…it’s true… with MS we can talk about anything with each other. There’s a sort of liberation in that. Pat xx

Hi all, I don’t know why but this post reminded me of the problem we are having with my granddaughter just now. She has just turned 4 but still poos herself, her mum and everyone in the family are at our wits end. She has been dry now for about a year with no problems whatsoever. Now her nursery have become involved. They have suggested taking her to toilet every hour. I got a text from daughter the day after she said Rhea has poo herself 7 times today. The next day I got a text saying " omg Rhea has pooed twice in the toilet" So don’t know if this is a breakthrough or not. Hope so because we look after her every second Saturday. Sorry to go off thread it’s just that toilet issues seem to dominate my life just now and it’s not even my own. Mags xx

Mags as mentioned above, we’re very comfortable talking about all bodily functions. I hope you find a solution for her, poor child, it won’t be pleasant for her starting school if she isn’t fully continent. We all know how upsetting accidents are don’t we? Enjoy your baby sitting xx

[quote=“Maggie56”] Hi all, I don’t know why but this post reminded me of the problem we are having with my granddaughter just now. She has just turned 4 but still poos herself, her mum and everyone in the family are at our wits end. She has been dry now for about a year with no problems whatsoever. Now her nursery have become involved. They have suggested taking her to toilet every hour. I got a text from daughter the day after she said Rhea has poo herself 7 times today. The next day I got a text saying " omg Rhea has pooed twice in the toilet" So don’t know if this is a breakthrough or not. Hope so because we look after her every second Saturday. Sorry to go off thread it’s just that toilet issues seem to dominate my life just now and it’s not even my own. Mags xx [/quote] Have I read this right? She pooed herself seven times in one day? I would say that is excessive and I would be taking her to the Doctors. Nobody should be pooing that much it’s no wonder she’s having accidents. Hope you get some help regarding this, poor little mite it’s bad enough having wee accidents. Good luck Jan

[quote=“Maggie56”] Hi all, I don’t know why but this post reminded me of the problem we are having with my granddaughter just now. She has just turned 4 but still poos herself, her mum and everyone in the family are at our wits end. She has been dry now for about a year with no problems whatsoever. Now her nursery have become involved. They have suggested taking her to toilet every hour. I got a text from daughter the day after she said Rhea has poo herself 7 times today. The next day I got a text saying " omg Rhea has pooed twice in the toilet" So don’t know if this is a breakthrough or not. Hope so because we look after her every second Saturday. Sorry to go off thread it’s just that toilet issues seem to dominate my life just now and it’s not even my own. Mags xx [/quote] Have I read this right? She pooed herself seven times in one day? I would say that is excessive and I would be taking her to the Doctors. Nobody should be pooing that much it’s no wonder she’s having accidents. Hope you get some help regarding this, poor little mite it’s bad enough having wee accidents. Good luck Jan

Don’t want to worry you Mags, but like Jan I have to say that 7 times in one day does not sound right… even twice a day would be a bit much. I wonder if she has a food intolerance or something of that nature. I would think seeing the GP would be a good idea just to check it out. Hope it can get sorted quickly, Pat xx

Hi, She has taken her to the doctors a few times and they said she will grow out of it. I also spoke to a district nurse who said her grandson was the same. The nursery manager thought it was a control thing but I don’t buy into that. She seems to suffer from a lot of stomach bugs. So hopefully now they are taking it seriously at nursery there might be a solution. Having had 3 girls of my own i have never tried anything like this before. My girls just seem to click no bother at all. My daily calls to oldest daughter are about toilet issues. Mags xx

Interesting link. I’ve always believed you can obtain all your nutritional needs, from eating a varied healthy diet, unless of course there is some medical problem. Also include your favourite treats…life is too short not to. I am prescribed vitd, take that under the guidance of my GP.

It’s such a waste of money, all these supplements that people buy…they just end up peeing them down the toilet. Sunny coloured urine is a dead give away.

I did have a lot of problems with constipation and was taking movicol everyday. Now I sprinkle two tablespoons of hemp seeds on my porridge each morning…I haven’t needed the movicol for the last three months. It’s the only change I’ve made to my diet, so it may help someone else.

xx

Spot on, Blossom. Good tip about hemp seeds, by the way, thanks. I must try it. I used to find fresh figs quite effective, not so much now though. Kev x

Your welcome!! Its actually shelled hemp…my mistake I buy Linwoods.

xx

Oh dear, re you granddaughter, when you have her next, write a diary of the day, what she eats, how many times she has an accident. It could be she is fine with you, if so then maybe she is stressed at the nursery, causing the problem. Check what you give her to eat and what she has on nursery days, it could be again simply down to diet. Try these options first, less invasive. Lou x

My digestive system occasionally slows down for a couple of days, legacy of some problems years ago. I usually go for a bag of licquorice allsorts as a first solution to get things going; if that doesn’t resolve the issue, I have curry for tea. I am told that pears, plums and figs are also good for getting things moving. I try to eat a balanced diet - it helps that my husband shops and cooks for us.

Maggie, I can’t offer any suggestions regarding your granddaughter but I hope you find a solution soon for her.

Linseeds on porridge or in yogurt is also good for constipation. I’m not keen on porridge and tried to eat a spoonful, don’t recommend it. I’ll put it in yogurt I think xx