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peristeen users please help

I have started peristeen few questions How much water do you use How do you get all water out What temp do you have water How often do you use? I have got up to 900ml and i lean forward to try and get it out so far lots of water comes out and sorry but some poop at the end if im lucky…it causrs cramps and i feel really bruised in my stomach area…does it get better as i continue Im.just so low ive got to this point now and the bowel pain is unreal if im.not empty which is all the time now My continence nurse is useless told me to use it everyday fir seven days to max of 700ml i feel i need more Also it makes me wee loafs Sorry to ask just need help…also how do you cope with now having to use peristeen?..im 39 but feel so old now and hate it…on bad day sorry x

hiya

used peristeen twice weekly for 2 years. it takes a bit of getting used to! but very effective when u master it. temp just above body temp-38/39 worked better for me. the bag in the sink rather than floor seemed to work best. 800/900mls. u wont get all water out espec if u dont drink enough-ur body will take/hold on to what it needs. rubbing/massaging tummy may help.

its costed on use 3 x weekly. to move bowels daily must take a lot of food (tho i appreciate this may be norm for some) when i couldnt manage peristeen for myself the district nurses came and did it for me (no embarrassmen,they deal regularly with such things!)

now its all change again! have lost 4 and 1/2 stone and now got carers in so didnt want to be tied to the district nurses doing it so over past few months have got to relearn about my bowel (yuk!) but now i take senna at 6pm every night and only ‘go’ once a week. that has now become ‘my normal’

hope this answers some of ur questions, please ask away…

take care ellie

Well, l do think the continance nurse should have given you more help in the first place. Sounds as if they have left you to get on and make your own mistakes. You are weeing more because the bowel is pressing on your bladder. lf you are really impacted perhaps if would be wise to go and have colonic irrigation by ‘professionals’ to make sure you are empty. l would have thought 700ml to be adequate - but the water needs to be quite hot. When l was shown - by one of the coloplast nurses - l was surprised at how hot she wanted the water. l think they say blood-heat - which is much warmer then warm. And l always hold the catheter well inside and l do not let go of it whilst pumping in the water. This way you know it is well in place - as far up as you can. lf you put too much air in it can burst - then you are back to the begining. Friends of mine who have had colonic irrigation - feel wonderful afterwards - and much ‘lighter’. So it could be the answer to kick-start you.

l think everyday for the first week - is probably best. Then perhaps every other day the second week. Start the day with a bowl of chopped dried fruit - figs/prunes/apricots/raisins with some linseeds sprinkled on top with a dollop of natural yoghurt. lt will soon get you ‘regular’. And a glass of hot water with lemon juice first thing in the morning. l think eating bran can often do the opposite - and set like concrete in the bowels. Dried fruit is far better for fibre and contains lots of vitamins and goodness.

Have another look at the peristeen users dvd - see if that gives you more confidence.

Another tip is - when you have pumped in the water - and can then let out the air - place your feet up as high as possible on a stool. And sit and wait - preferably with a hot drink. lt can take about 30mins before you can say you are empty.

Hope this has helped - pm me if you like

I eat like a bird hardly anything but still seem to need to poop a lot its weird…i can manage myself at moment but hubby would help…i havr no idea what my normal should be really as on such high dose laxatives but got to start to decrease…do you not get pain from going once a week?..is 900ml too much do you think?..i di need to drink more

Thankyou…my nurse had no idea really about it didnt even know how to set it up…it has taken me s year to get it prescribed so hoping its my miracle…i have looked into colonic but the nearest plsce to me is miles away and i live very rural with no transport so cant get there…i would love to get it done…i wonder how many ms people use this system…to be honest now i wish they would give me a colostomy as my bowels the worst part of my ms and i have progtessive…thank you…spacejacket has peristeen changed your life?

hiya again

have little feeling below my waist but didnt feel sick when done it. i have used up to a litre in past… u wont find solution overnight but for me its worth getting to recognise/know ur normal-which is unique

i really hope u find ur solution (which may include diet changes gradually)

ellie

I have limited feeling in my legs but enhanced bowel and bladder feeling and have constant hug around my stomach and back…neuri saud the brain had almost enhanced the feelings so in pain there all the time its agony and nothing helps…bowel dr said i needed a bag but wont do it…so hoping peristeen does work will keep at it…x rhank you

Oh love, I do feel for you!

Bowel problems can be such a nightmare, I know!

The longest I have not gone for is 7 days and it gets so uncomfortable.

But now I have a suprapubic catheter I am doing my best not to get constipated.

Have you tired movicol/laxido? You can safely take up to 8 a day for severe impaction. The most I have taken is 3 a day.

having a colostomy is a huge thing to do…it needs careful condiseration, and you arent keen anyway.

I thought about peristeen, but my doctor was totally against it incase I damaged myself, but sent district nurses to do enemas.

When I read how persiteen is done, I just know i wouldnt be able to do it myself, as I have difficulty reaching round to my botty. it sounds like a balancing act of the most difficult variety.

Cant district nurses or carers do it for you? My hubby has to help me clean up and I hate to ask him.

luv Pollx

It took me nearly a year to get approved for peristeen as have crohns disease as well as ms…i have tried movicol did nothing sadly not even the colonoscopy prep worked when i had camera up there…i am currently on 130ml lactulose but hope to get off it as well as prune juice…i can manage the peristeen as my legs have gone now but not my hands yet…although i have no feeling in them can still use them…used it today and was ok just hope its my answer…only prob today is made me wee non stop…i have thought about a bag a lot only thing that puts me off really is if it leaks…not fun ms bowels and with crohns disease as well its awful…thanks for kind replys all of you x

Hey Q

I really feel you as I have to use a peristeen but on a daily basis as I used to have accidents 4-5 times a week. With the peristeen the incident rate has fallen to once a week so it is a lot more manageable.

On the amount of water you use I guess it just down to the indivusual, my problem is that I can’t feel when I need to go so as soon as I have pumped about 3-400 mls that usually sets it off, but other times it can be a lot more. For the heat of the water as far as I am conerned if is hand bearable then it is not too hot, for me at least.

I hope that you find away to make it work for you. I was reluctant to use it at first and now that I do it is definitely the best thing that I have ever done as far as the MS is concerned.

Andy

l have met several folk who have a colostomy bag -and not ms - and you would never know. As l already have a spc - l turned down the offer of a colostomy - l really would be a bag lady!! But l can see it could be the answer to a lot of distressing problems.

Can anyone help? I’ve been using the Peristeen system for years with varying results, some days it works, although I always feel ill after using and not better at all. I always feel like I need to poo again about a hour or so after. I get all the stuff out again and sometimes there is more to come out, sometimes not, but over the last 3 days I have just filled up with water that I can’t get out. pushing on my abdomen used to work but now nothing is coming out. My stomach is huge, I hurt everywhere esp my lower back and worryingly, my kidneys, even my hand, fingers, wrist is swollen up from using the pump. I have recently developed piles and although the Dr wasn’t concerned I’m wondering if this may be blocking the exit? I too have a totally useless Continence Nurse and the woman who came to show me how to use the Peristeen told me (wrongly I know now after reading other comments) to use warm water. She didn’t tell me anything about how much water to pump in one go, or how often to use etc, in fact she sat in my living room and shouted “have you seen the donkey”? Donkey? “Yeah, the donkey thats just done a huge shit in your bathroom!” I’ve got a healthy sense of humour but the longer time goes on and the more I feel like my bowels will be the death of me, the more outrageous her ‘joke’ was.

I feel so ill and I just don’t know where to turn. How do I get all this water out of me?

It sounds to me like you need to make a fuss with your GP or nurse, clearly something is not working properly. I was lucky to have a very patient and sympathetic nurse. I have also been lucky enough not to have many problems. I have sufficient sensation to not measure the amount of water, I can feel when there is enough and when it has all come out.

i understand how horrible it can be to have these issues and hope that everyone gets enough help to reduce to impact of these nasty problems. Mick

Can anyone pls tell me if its normal to get air in peristeen water bag when pumping water into bowel.