Morning everyone, Hope you’re all doing ok So I have SPMS, 18yrs in now, like a lot on here I have so many symptoms, I won’t bore you with them all, but last November my bowel joined in the fun, I already have bladder problems, Botox injections every 5mths and I self catheter. So now I have to do a daily Bowel irrigation, I was doing anal irrigation for about 5yrs before this and to be honest I’m now having to do both, the continence department and my GP, MS nurse said the MS is now affecting the muscle’s in my bowel and not pushing stuff around properly.
So for anyone out there doing a Bowel irrigation have you noticed a difference ? Up to a point I have, but I’m still getting abdominal discomfort, I was really hoping that this would be the answer to all my problems, but sadly I feel it isn’t.
Is this the way it is, because my muscles aren’t working right, because if it is and with everything else I have to cope with, it’s just awful. Me and my hubby, he’s my full time carer have no live, friends don’t visit very often and hardly make contact, up to a point I can understand it, we don’t go anywhere, so we’ve nothing to talk about. I do however make sure my hubby goes flyfishing, it does him good.
To anyone that’s reading this, thank you, sometimes we just have to get things off our chest and look for a bit of advice.
Take care and have the best day you can.
Jean x
Hi Jean
I am so sorry you are having to deal with that on top of everything else, ms really is horrible just keeps giving.
Friends do drop off the radar Jean I agree, it’s as though we are just too much trouble, so sad really.
Omg Jean I wish I had a magic wand to use for you, you are in my thoughts and I truly hope you things improve for you.
Take care you are a lovely lady and don’t deserve any of this.
Pam x
Thank you Pam, none of us deserve this do we. I bet you yourself deal with so much, I think if on the whole we can all be here for each other, then that’s a good thing, because it’s only us that know how bloody awful all this feels.
You too area lovely lady, always so thoughtful, I actually knew that if no one else replied, you would, so thank you
Take good care of yourself and thanks again.
Jean x
Hi Jean, sorry to say that I can’t offer much advice. I once noticed a small video of abdominal massage on the website of the MS Trust. Don’t know if this would be of any help - see link.
I’m sending this from the ‘red warning area’. So far no major damage in our part of the area. A few trees down and the strong gusts of wind are a bit unsettling. Apart from the howling wind it’s very quiet here i.e no traffic on the roads and no one to be seen. Fingers crossed that that’s it.
Hi Hank Dogs,
Thank you for replying, yes they mentioned this at the continence clinic, as did my GP, so I’m trying to do it as much as possible, thanks for the link.
Oh gosh this weahter is awful, I’m in West Yorkshire and we had a amber warning and the wind is bad enough with that, so I can’t imagine how bad it is for you, stay safe.
Jean
It does sometimes feel like MS is playing a weird game of bingo with us.
When my guts are on a go-slow, I find abdominal massage helps ease the discomfort and gets them moving a bit better. Lying on the bed, nice smelling body lotion, and massage in a clockwise direction - I usually start in the middle/belly button area and slowly work outwards.
The wind is a bit unnerving and every now and then we get really strong gusts that seem to ‘slam’ the house and leave us a little concerned/worried about the possibility of damage. Will be pleased when it all dies down a bit later this evening
Hi TheresaB, Thank you so much for your reply. I totally agree with the bingo thing, but sadly I never win, but I’m hoping with all this good advice I will, so thank you.
Hope you yourself are doing ok
Jean x
Oh Hank Dogs, I really hope for you it dies down pretty quickly and remember, we’re all in this together, thank you for your support.
Jean
Jean I am so sorry this is what you are dealing with now, it is such a horrible disease this MS. You are indeed a lovely lady who has always been there for me and so many others with your care and good advice.
You are so right this is a great place where we can always say just how things are and our friends here are always there.
Take good care and hopefully things settle for you.
Much love
Maryx
Hi marymcdermott, Thank you for your lovely words, they mean so much to me and have lifted my mood no end Like you and many more, I just try and offer the best advice I can and yes if we can all help each other, then even better.
I really hope you are keeping well, as I know things haven’t always been good for you either, look after yourself and thanks again.
Jean x
I am doing fine Jean, trying my best.
Things have changed a lot but I have adapted life as best as I can and am truly grateful to be content.
Here always
Much love
Mary
Hi, can I ask please what the difference is between anal irrigation and bowel irrigation? I’ve been using peristeen anal irrigation for 6 years but do a lot more than recommended, i.e I use it daily and do between 3 and 6 bags each time. It’s the only way I feel empty.
As for friends, yep I lost who I thought was my best friend, I’d helped her through a divorce, helped with her kids, then she met someone else so saw her a lot less then I told when I got diagnosed and I’ve not seen or heard of her again. I’ve learnt not to trust folk and rely on no one, easiest way.
Hi LucyAnnie, So the anal irrigation is the mini version of the bowel irrigation, it has a much small water/pump holder and just hold roughly 150ml of water, just enough to start things off, unlike the bowel irrigation. The system you use is very similar to the one I am now using, I thought me using the bowel irrigation and the anal one was a lot, but you the bowel one so much more. I take between 2/3 movicol a day, do you take anything like this to help you ?
Like you one of the friends I’ve lost was my bestsie, I too help her through her divorce, she came to live with us, rent free, food paid for as we wouldn’t hear of her paying us…we were friends, I get MS, it all changes
oh well, that’s life.
Take care and keep smiling.
Jean x
Hiya Jean,
I’m so sorry to hear about your bowel issues it’s a lot to deal with as well as your bladder problems.
I personally have to take docusate sodium capsules twice daily to be able to open my bowels, I consider myself fortunate that I can still pass stools with the aid of medication. Have you tried medication that causes the bowel to spasm ? x
Hi animali,
Thank you for your reply, on top of the irrigation I do take between 2/3 movicol daily and still I struggle, I’m now doing the abdo massage to help and ease the discomfort, which seems to be working. According to the powers that be, the communication between brain and bowel isn’t working properly, so the muscle’s struggle to push stuff through, I’m thankful it isn’t the other way around where I can’t control it.
Hope this finds you feeling ok, take care of yourself and have a good day.
Jean x
Hiya Jean,
You could try docusate sodium as they are softeners, apparently when you have bladder issues you tend to have bowel issues as well. I’ve found since starting a DMT it’s now finally helping . I recently started taking carbamazepine for Trigeminal neuralgia, the difference that’s made, hot water is now hot before taking it hot water was cold. Try taking a combination of movicol and docusate sodium, I don’t have to push it just happens. I’m sorry I can’t suggest anything else to ease your bowel issues.
Take care Jean and hope it helps to ease the problem for you. X
Hi animali, Thank you I will look into that, although movicol and laxido are supposed to do this, but hey anythings worth a go, thanks again and take care.
Jean x
Hi Jean, they are stool softeners and I’ve found they work really well . If they work for you , you can get them prescribed. I usually take 4 a day, 2 in the morning and 2 in the evening, as constipation can give you added bladder issues as well. Hope this help Jean. X
Hi Jean, just to add to previous reply I find things that help me when constipated/ facing difficulties getting things moving include the usual dried prunes, nearly ripe / not yet ripe conference pears and walnuts ( a handful each day) grapes. Also, exercise of my abdomen: I pull in my stomach/abdomen as if I was desperately trying to fit into trousers/ jeans that are too small for me and then let go. I do this - repeat as many times as I can in quick succession , similarly keeping my hips still doing side twists. I suppose that in a way it’s All a sort of abdominal massage