Hi I’ve struggled with bowel issues, usual story, dominates life blah blah. Long story short, I am now considering Peristeen, GP prescribed it, once i’ve had blood test to rule out inflammatory bowel etc. I showed her my bowel diariy, and then she really got it. I’ve been beginning to think between 5-12 loo visits a day are normal. If anyone can re assure me it is realtively straight forward and helpful, i would love to hear from you 
Gosh, that is a lot of loo visits, you must be worn out with it.
I dont use Peristeen, but a lot of members here do and say it changed their lives for the better.
It can take some getting to grips with, but once you have, you`ll be so pleased you went for it.
Good luck.
luv Pollx
Hello! I was diagnosed with MS in April of 2004. I am a new user to this site. Yes it really has taken me this long to talk to people other than GP etc about this really crappy disease!!! I was relieved to see a post regarding somebody else having bowel trouble that blights their life as it does mine! I apologise if this sounds selfish, but i really did think that i was the only 1 out there with this embarrassing and unpredictable symptom!! I am 32, and this along with the bladder difficulties i also experience, has been by far the hardest symptoms to cope with! I now rely heavily on Loperimide just to get me through the day at work, although now i feel my body has somewhat become immune to this treatment as it doesn’t seem to have the same effect as it once did!! Any advice and information on Peristeen would be gratefully accepted, as i’ve never heard of this, and if it genuinely does help maybe this would also subside any anxiety that comes with a very frequent and urgent bowel!!
hiya
i used it for 18 months-am now too poorly physically to manage it. u need to be able to use both hands-am sure u understand if u have read on using it.
i found the temp of water was best just above body temp-37/38.
700/800 mls was average but that will vary depending on ur bowel.
it takes somegetting used to-several weeks, 8/10 perhaps but it is worthwhile.
if u have specific questions then ask away-several of us have experience of peristeen.
ellie x
I have occasional faecal incontinence along with constipation. Nothing like Twinkle3 or Emmad…welcome Emma by the way 
Great advice from ellie…sorry to hear you can’t use it anymore ellie. Good luck, I hope it works out for you guys
thanks for the replies. I have a cyle of constipation followed by bowel over flow. As my bladder isn’t unmanageable the bowel has sort of got side lined bt medics,(because usually bladder is the worse, or first, but for me it is the other way until I became so desparetly depressed about it.) I have just had 3 reasonable loo days, a few urgent visits. I have a script for the treatment but will wait for bllod tests to make sure nothing else is going on. I think, like some of the comments suggest, it could be a freeing thing. Not sure about the hands, will have to try and see, us MSers are good at finding away, if we possibly can, whilst we can.
Hopefully i will be able to post how i get on in a few weeks, i believe the providers send a nurse out to show me how to do it! Difficult, when you feel young, but have to do intervene like this, feels before my time. I’m sure many of you feel this at times.
thankyou chocorange, i will most likely be back with questions when the kit is here and i’ve met the nurse for instruction.
I am now diagnosed with MSbut I’ve not been discharged by my gastroenterologist yet, I also used to take Loperamide for urgency/frequency, even put of codeine by one GP for a while and that was hideous, off my face on the stuff and after a month it gave me an upset stomach! I’ve had a colonoscopy and MRI and Gastro still says IBS (weight loss wasnot consistent tho) as it looked like Crohns disease BUT the biopsies and all other tests have come back clear.
As I’m likely PPMS I looked for treatment and came across LDN (low dose naltrexone). This can be used to treat/help both MS & Crohns, so I decided to try it. I’ve been taking LDN for 5.5 months and have regained my weight and my bowel issues have calmed right down. 3 packs of loperamide remain unopened in my cupboard
Sonia x
Twinkle,
l have said it before and will say it again - Loss of Bladder and Bowel function is the worse part of this disease. [l did get rather a ‘curt’ reponse from someone on this board before - who must have been one of the lucky ones - as she did not suffer like most of us do.] And so many of us think we are the only ones - and keep it to ourselves. lt effects every part of our lives - is not just inconvenient - it lowers ones self-esteem - is degrading - makes getting to and from work a nightmare - let alone going on trips/holidays with family etc.
There is help out there - and lots we can do ourselves. As Sonia has mentioned - LDN - can really help you get back some control of bladder/bowel - but more importantly it makes you feel more able to cope.
Try not eating grain of any sort - High Protein/low carb diet gluten free will help if you stick to it. This will help with MS/Crohns/Coeliac/lBS.
The Peristeen system will help by emptying your bowel when you want to and not when it decides to surprise you. And it can help retrain your bowel - so if you start using it everyday for a few weeks - then you might be able to start missing out every other day - then perhaps only twice a week.
lf you are really compacted - it might be a good idea to go for colonic irrigation by a trained therapist - to get you cleared out and started. Having diarrhorea and constipation is usually because your bowel has become impacted - and you then get an overflow - where it bypasses the blocked bends in the bowel.
A bowl of chopped ready to eat dried apricots/figs/prunes/natural yoghurt/banana/ linseeds every morning will help to get things moving. Bran/fibre can do the opposite and swell up and ‘set’ like concrete.
Drink plenty of water as well.
Also a full heavy bowel presses on the bladder - and adds to your problems.
For bladder control - thankfully there are new meds - a big improvement on the oxybutinin type. Betmiga is one of the new ones.
Dont suffer in silence - Do ask for help - You can self-refer to a specialist.
l have had 31yrs of this problem - and like most of you have had the ‘cameraupmebum’ and barium meal xray. And the outcome is its the MonSter that is causing it.
l suffer with ‘rapid transit’ - so do have to take codeine/loperamide all the time to help slow things down.
So we all suffer in some way or another - but do not suffer in silence - lts the 21st century - lets get some help.
Coloplast - the company who produce the Peristeen - are very helpful - its used by lots - including many paralympic athletes.
So glad to see you here, Frances, offering your time proved and tested advice to those needing help form those who know!
luv Pollx
Thanks for the in depth reply, very helpful. I have used LDN, but i don’t get on with it. Like a lot of the treatments they are all quite personal as are diets, we all seem to respond differently. I’m definitely going down the peristeen route, after a really helpful conversation with them today my fears are aside, mainly, will i perforate my bowel, answer, no ones done it yet, and the catherter doesn’t go into the bowel .
I start in 2 weeks, it gives me time to come to terms with it, emotionally, the part that often gets skipped.
Thank you all again.