Hi im new here…have ms and it affects my bladder and bowels…are others affected? I feel so alone need a wee all the time and cannot empty bowels properly at all…i can sort of go a bit with high dose lactulose but never emptybowrl…this all starts about 3am then keep getting urge and nothing…takes hours of bits…sorry and still not empty…i have incontinence as well…saw continence nurse today for peristeen…im so sad as that with everything else…do others suffer with bladder and esp bowel probs…i so want a colostomy im that desperate but thats a no go…just feel so alone and my hubby and kids in for poo out in five…just wish i was like that…anyone same or anyone had joy eith peristeen…thankyou
i have been using peristeen for over a year. takes a bit of getting used to but i like it cos no drugs involved. and tsco like it cos i have stopped shiting in my local store! theres a few of us use it on here.
if u have specific questions,pm me if u prefer…
Hi I have problems with bowel too. It started about 2 years ago and after I went for about 2 hours after I would get slight discharge coming out on its own! I tried all sorts suppositories, coffee enema etc to get the rest out. The best solution I have found is to use plastic disposable glove with a bit of KY jelly to go in and clear out rest of contents in anus. Then hey presto nothing left to come out on its own free will! I have not told anyone else that I do this as am too embarrassed!
Hi , I have problems too. And I find that I can’t seem to wipe my bum properly. Makes me feel rubbish. Can’t use tampons anymore. I hate pads. Just don’t feel clean when I use them.
Don’t be afraid or worried about peristeen. I’ve used it for two years now and consider myself an expert!!! Ask your ms nurse to put you in touch with someone who uses it and have a good chat about it. There is no substitute for real life experience from another user. The continence nurses are good but I’m sure that few of them will have tried it themselves! You can pm me if you want.
Two continence advisers visited me at home last year to show me how to use Peristeen, but I couldn’t stay balanced on my feet when using it. I have padding at home which I use when I go out.
ur post has confused me! am sure there is a simple explaination…
i dont need to stand cos am sat throughout. wonder what we have been told differently?
curious ellie x
qeiane- l think bladder and bowel incontinence is the worse part of this disease and must effect 99% of us - so do not feel you are on your own. l had to have a supra-pubic catheter about 15yrs ago - to control my bladder - this changed my life and was the best thing l have done. The ‘peristeen’ system is another - it enables you to empty your bowels when you want - and not when they decide to let you down. [like ellie - yes - Tesco/Waitrose/Somerfields - ] the abandoned trolley full of shopping - that was me!!
The peristeen does seem a bit daunting at first - but soon you will find it second nature. And many folk on here will be able to help with advice as we do know first hand - not like the so called professionals.
ColinS1973 - l am sorry you were unsuccessful. lt might be worth you trying again - especially as you said you could not stay balanced on your feet. l do not understand this - as l sit down on the loo through the whole procedure - no need to stand.
pm me or ellie for more ‘tips’.
we were writing at same time!
Hello Qeiane I have used the peristeen system for over 2 years and it completely changed my life. It takes a little getting used to and is a 30ish minute procedure but well worth it. You can dictate when you empty your bowels and therefore plan trips out without accidents. Feel free to pm me if you want like Frances and Ellie have said. Linda x
Awwww thanks…main prob with me is overactive bladder anx bowel…i can sort of go but never empty properly ever…and then accidents…like today my bladder is going nuts and ive bedn up since four worrying and trying for a poo…scared about peristeen but only really how massuve the catheters are…they ate huge and i have hemmoroids hmmmmm…i lie in bed dreaming of having a colostomy thats how much this this impcts in life…my partner is sicj of hearing about my bowrls but guesz its taken over my life…for those that use it…how often? And does it affect your bladder at all…have had probs for years but only since changing gp have i been listened to…i think bowel bladder probs the worst thing with ms can kinda cope with everything else…x x
qeiane, When your bowels are full/compacted they cause pressure on your bladder - making bladder your bladder go nuts - as you put it. The catheters for the peristeen are not massive - and you fill the package around the cath with warm water first - and they just slide in. Keeping it in is the problem - l hold mine in place throughout the procedure - because if you pump to much air into it there is a risk of the balloon bursting. But as l said before - sit on the loo the whole time - no need to stand. Once you have kept your bowels active for a couple of weeks l should think your haemorroids will disappear as they are caused from you being constipated.
lts certainly worth giving the peristeen a fair trial - there is no going back once you have a colostomy. You could even try having colonic irrigation and see how you feel after that. You can find someone local to you who does this if you ‘google’.