Hi
This is really embarrassing but Ive recently had a number of accidents where I haven’t been able to get to the loo on time.
I have a seconds warning that it’s going to happen and it’s too late.
Thankfully I’ve been at home when this has happened and been able to strip off my bottom half have a shower and get rid of my clothes.
I’ve been in touch with my MS nurse and she has arranged a referral for me to a Coloplast nurse who I’m hoping can help me.
Since contact with my nurse this has happened to me in my sleep during the early hours.
In the meantime I’ve ordered some period pants for times I need or want to go out.
My greatest fear is this happening to me when I’m not at home.
I’m due to go abroad next week and really worried that this may happen again.
How do people deal with this it’s terrifying me ?
I live a good life at the moment , I’ve not let MS take over my life , but I feel this is going to ruin it.
I travel , love to go out to gigs , theatre , meals , pub etc but now it will be a constant worry .
Any advice or tips would be welcome 
Do you get stomach cramps before this happens? I’ve an appointment coming up to see neuro urology, they’ve already diagnosed a neurogenic bladder and they’ll assist with my bowel issues. I’m the other way constipation. If your bowel movements are loose you could try to add more fibre in your diet like milled flaxseed or porridge oats.
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Hello, this is a constant stress, I know what you mean about it being terrifying. A referral to the continence clinic can help as there are medicines that can help. I think your doing he right thing and even though it can be embarrassing you right to ask for help.
Good luck
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Hi animali No I don’t get stomach cramps before hand. I have found it happens more often after I’ve struggled to go first thing in the morning or have had constipation for a couple of days.
I’ve just ordered some flax seed so thanks for the tip.
Regarding my bladder I don’t have urgency but do have hesitancy so I will mention that when I see the continence nurse.
I hope you get the help you need with your issues. Thanks
Im so sorry you have this problem too and I hope you’ve found something that helps you.
I can’t believe this is happening to me .
I try to be as positive as I can about living with MS and just get on with it but this is so bloody awful and I feel really distressed.
It’s impacting my life and mental health and how I feel about myself.
Thanks for letting me know there are medications that can help.
Hi
I too know how this feels. I use Coloplast Peristeen which gives me confidence for a few hours especially if I am going out. We also had another loo installed at the other end of the house which gives me a fighting chance in those “flippin’ heck” moments. I hope you get help to reduce the nasty moments. Good luck
Mick
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I hope the flaxseed helps. The hesitancy to pass urine is what I suffer with along with retention and it can affect the bowels. When you don’t go for a few days then your loose could be bypassing! Hopefully the continence team will assist with this, as one could be making the other worse.
Thank you, I’ll take any improvement at this moment in time,lol.
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I’ve had accidents if my bowels haven’t moved for over two days. I therefore try and get a movement every day, and if not, every second day. I do this with anal stimulation. It’s a horrible topic but it’s made a huge difference for me.
The way you train a puppy to poo outside is to rub its bottom with tissue paper and it encourages a bowel movement. I thought “why won’t this work on me?” - so I double up some toilet paper, and double it again, and then use this to move this rapidly over my anus whilst pressing. Not rubbing as you’ll quickly have a bleeding bum! The tissue paper shouldn’t move over the skin if you press firmly enough. It then causes me to poo.
I’m not sure if anyone else does this but it works for me and ensures I have a movement and avoids accidents.
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Thanks Mick and really sorry you know how this feels and it’s good to hear you’ve found something that helps you.
The Coloplast team have been in touch now and I’ve got a 2 hour appointment for the 26th June so I should get some help soon.
I’ve also got my annual MRI on 16th June but won’t see my neuro until October.
Fingers crossed the team can help you a bit. I can honestly say that for me Peristeen is a game changer
It is so annoying when waiting so long for appointments shame that demand outstrips supply.
All the best
Mick
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If you’re travelling and need peace of mind, Immodium can certainly bring the elimination end of the gut to a dead stop very reliably. The problem then can be getting things going again!
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Thanks Alison my husband also suggested Immodium as I’m very anxious about being on the plane and having a problem.
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Thanks Druss54 and Im sorry you’ve had this awful problem too. I’m glad you’ve found something that helps you.
Hi claret, it’s awful isn’t it. My bladder bowel nurse did some finger tests if you know you know. I seen the consultant who has arranged for me to attend for a colonoscopy…not looking forward to that but he also said where my legions are on my spine it could be the MS or some other bowel issue.
I can go 3 days or more no warning no notice absolutely horrible.
I take 2 docusate in the morning and night and one laxido sachet in the morning and night and still having issues.
If I’ve not had a movement for 3 plus days I won’t leave the house…incase.
I’ve had 3 accidents luckily… luckily it was as I got home but I couldn’t imagine if it happens out side. I hope you get something resolved for yourself…stay strong.
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I’ve had issues with constipation for for the past couple of years. Which has gotten worse since taking baclofen for spasticity, anyways that has exacerbated the constipation, so I thought I’d add laxido to my docusate sodium capsules, well gave me diarrhoea very explosive. So maybe speak with the bladder, bowel nurses for advice. Just an idea, and sorry you’re experiencing this as I know it’s horrible to deal with the unpredictably it can be.
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Following my appointment with a Coloplast nurse I’ve been given Peristeen to try. I’ve been advised to use it everyday for 2 weeks and then every other day for the foreseeable future.
I’m struggling with this but hope it helps stop any accidents and that I get the hang of it in the end.
Any advice/tips would be appreciated .