[voodoo]

Hi guys been having a few problems with my routine the last 6 - 8 months, taking to long (usually 3+hours), not being fully empty and having to recheck myself at night where i get a bit of bum glut, my routine at the moment is to do my bp every second day,i take 2 bisacodal tablets the night before and have recently changed to magic bulit supps which do seemed to help a bit but still not totally happy.

I've been reading the posts on the forum about the peristeen system and it does sound good and i am interested to find out more info from users of the system, if you don't mind can you tell me what your routine is when using the peristeen, how often, time taken etc, what drugs you take night before if any, do you have to still use supps, is it easy use? and any other pros you have found with it, also if there is any bad points or if anyone didn't find it helped i would like to here from you to.

Probs have more questions in time lol

Cheers in advance guys

[LeahC]

Hey I'm a T11/12 and I use Peristeen. I don't use anything else at all (no meds, nothing) and I do my Peristeen every other day and haven't had an accident since I've started using it. You pump water inside your bowel which does feel a little bit uncomfy when it's 700ml but not nasty, just a bit full, and you stay there for half hour, give yourself a good wiggle to get it going lol a few times I thought it had finished though and it hadn't so make sure you stay and wiggle, even lean forward and strain. I'm a fan anyway

[cubanito_016]

Hi I take 1 precolase in the morning 1 cosale in the evening and 1 cosale at nigth so 1precolase and 2colase a day.At nigth I drink a full cup of prum juice ones a day.I do this routines everyday and I go to the bathroom every other day one day yes one day no.I know its hard to empty the stool but eat alat of salad and fruits and drink prum juice and I promise you you will poop alat.

[ems]

Hiya, I've used the persiteen unit for over 18mths and it really has been a godsend. Its quick, easy and I dont have to take any drugs atall. I use it every three days now, or every two if I feel I need to, or if i'm going to travel... just to make sure ;) I've not had an accident since I started using it.

Routine, well not much to it now, my bathroom time is around 20-30 mins depending on the amount of water used really. I change the amount of water put in depending on how full my lower bowel feels. When i first starting using it, the first few times took a bit longer, but then setting the thing up taking the water temperature etc took me ages.. cos I was worried.

Now I just open the bag up take out the water pouch, turn on the tap, get it a little bit warmer than tepid and fill the bag up. I sit it in the sink and attach the tubing and the catheter. I pump the water into the catheter packaging to activate its hydrophilic coating and leave it all set up till I'm ready to start.
I always fill the bag up full, and once I pumping the water into the bowel I start feeling my tummy. Once I know the water has filled my lower bowel I stop. You should be able to hear where the weater has got to by sort of massaging your tummy and you will hear it bubbling, so to speak. If you put too much in, all that will happen is the water will go follow the line of the bowel over to your right side. It just takes a bit more time to empty if it gets over there, as its got to go up and over and down again to the left side. I only tend to allow that to happen if i want to be completely cleaned without ie air travel etc. It just takes me an extra 10-15 minutes when that happens though.

If I know there is still water, (by hearing it when I massage my tummy so I know exactly where its sitting), and its not just coming out.. all that is needed is a little pressure on the tummy, I tend to use a circular motion around my tummy going from clockwise when looking down at my tummy, to help it on its way. If it needed little more convincing I tend to cough as this provides a bit of internal pressure in the abdomen, and has always got it going. There has never been a time where nothing comes out, but sometimes less may come out of the bowel if your dehydrated.

I was going for an ACE operatoin and this system came in just in time!!!!! Seems the ACE requires you to do exactly the same thing.. push water into your bowel.. except you have to look after and have a stoma aswell

Hope this helps.. any q's do ask

[voodoo]

Hi Guys thanks very much for the info, i've been in touch with coloplast and they are sending out some info and a dvd so hopefully give me more insite into using the system, it does sound good and hopefully it will work for me as my routine just now is starting to effect my work and that is not a good thing when your selfemployed.

When you got trained to use the system what did that consist of? did you meet with a nurse where they showed you the equipment and talked you through how to use it or were they there when you first used the system?

[ems]

I had no formal training with it, htough I know now because of some ppl having episodes of AD, I know that stoke prefer you to come in try it .. I just went to my GPgave her the leaflet, requested a prescription, and off I went. Its just a pocket of water, some tubing and a pump.. nothing mu7ch to go wrong.. and also, you can t really say.,. use 600ml of water to someone everytime you use it.. I really do find it is dependant on my diet and how I'm feeling. I use 4 pumps on the catheter to inflate it.. thats just me.. you may need more or less. I used two pumps to start.. adn noticed it was leaking.. so I gave it another pump and another till it stopped leaking.

I think you have to remember that water int eh bowel isnt a new thing.. has been done for yrs.. but as soon as something becomes a prescriptive item etc safety mode cuts in ;) This system was in germany 4 yrs before us as they saw no need for such rigerous testing. The UK wasnted it trialed and tested for 4.5 yrs before they let it out!!! Ridiculous I think.

I didn't particualry want a nurse standing over me using the toilet. My incontinence nurse comes round occasionally, usually to dump off boxes of catheters that she cant use and we went them to medical charities, I dont really use her for anything else ;)

Remember, its jsut a water enema ;) Have been done for hundreds of yrs, I just wish we had all had it availiable to us sooner!

I had no formal training with it, htough I know now because of some ppl having episodes of AD, I know that stoke prefer you to come in try it .. I just went to my GPgave her the leaflet, requested a prescription, and off I went. Its just a pocket of water, some tubing and a pump.. nothing mu7ch to go wrong.. and also, you can t really say.,. use 600ml of water to someone everytime you use it.. I really do find it is dependant on my diet and how I'm feeling. I use 4 pumps on the catheter to inflate it.. thats just me.. you may need more or less. I used two pumps to start.. adn noticed it was leaking.. so I gave it another pump and another till it stopped leaking.

I think you have to remember that water int eh bowel isnt a new thing.. has been done for yrs.. but as soon as something becomes a prescriptive item etc safety mode cuts in ;) This system was in germany 4 yrs before us as they saw no need for such rigerous testing. The UK wasnted it trialed and tested for 4.5 yrs before they let it out!!! Ridiculous I think.

I didn't particualry want a nurse standing over me using the toilet. My incontinence nurse comes round occasionally, usually to dump off boxes of catheters that she cant use and we went them to medical charities, I dont really use her for anything else ;)

Remember, its jsut a water enema ;) Have been done for hundreds of yrs, I just wish we had all had it availiable to us sooner!

[Zammo]

I use the system after chatting via PM to Emma (above). I've been using 6 months or so now and its made a huge difference to my life.
I use it every 3 days, but change my routine occasionally for the sake of convenience (travelling etc..). I normally use the full bag (1 ltr), pump it in and wait. Normally takes 30-40 minutes to finish I find. And then into the shower.

I never have accidents, and I never worry about having accidents. It's giving me much more confidence in that respect. I used to have a daily programme, but now I'm fine to stay over at places and not have to worry about getting to the loo.

Oh, let me add that I don't take any meds or sups anymore.

This post has been edited by Zammo: 12 February 2009 - 01:23 PM

[wales1]

i use it every 3 days , its a god send its so simple, well worth a try

[ems]

Zammo, really glad your getting on with it, I think you'd prob agree with me on this, it has totally changed my life, bowel wise, I really dont even think about it any more!!!

[voodoo]

got to admit i dont like the idea of a nurse watching me do a routine, i know it's a new way of doing it but it does seem pretty straight forward, i don't know if they are just covering theirselfs as when i was on the phone to coloplast they said i would need to see my local incontanance nurse first and if she hadn't used the system she would have to be trained on it first.

[Zammo]

ems, on Feb 12 2009, 01:43 PM, said:

Zammo, really glad your getting on with it, I think you'd prob agree with me on this, it has totally changed my life, bowel wise, I really dont even think about it any more!!!

I'd say that occasionally you come across products which make a profound difference to your quality of life, and this is one of them. I'd recommend it to anyone.

We should be on commision!

Also I didn't have a nurse or anyone standing over me the first time. I don't suffer from AD so I wasn't worried about that aspect.

[ems]

Voodoo, I agree, All it is is an enema bag with a pump.. with a prescription code ;) I bypassed Coloplast and my incontinence nurse from Fittleworths delivery group by just asking my GP for a prescription and giving it to the chemist knowing that they would have to have it ordered in anyway, and then all I need a repeat for was the accessory kit which I then asked for from Fittleworth the next month ;)
I did read through the instructions once, and then I did a practice setup so I knew about the pump settings etc.. I went throug hthe whole thing with the system jsut sat in the sink! Just to make sure I fully understood, then it sat in the cupboard for a week till I had a morning by myself to give it a go! BEWARE.... hehhe..the valve that goes inside the bag sort of makes a funny noice when you move it around.. but I've found as soon as its wet you dont hear it all.. the only noise mine actually makes is a whistling noise from the top pin holes!! so wahat I do if there is anyone in the house when I use it, I wet a bit of toilet roll adn place it on top so it cant make stupid noises.
I did tell coloplast about that when I did their study 18 mths ago, so maybe they have changed the design.. I'm not sure.. I've never actually ordered a new system.. though Coloplast say they would like to see it being replaced every 6 months!! LOL Money making market eh ;)

hehehe
Zammo!! I think we'd make pretty good reps!! lol

This post has been edited by ems: 12 February 2009 - 07:29 PM

[LeahC]

ems, on Feb 12 2009, 12:17 PM, said:

If you put too much in, all that will happen is the water will go follow the line of the bowel over to your right side. It just takes a bit more time to empty if it gets over there, as its got to go up and over and down again to the left side.

Would that explain why on a few occasions I've been there half hour and it stopped coming out ages ago, so I have a shower and some just pops out unexpectedly at the end cos it's bothering me lol xx

[ems]

Most proabably ;) NExt time you use it.. wiggle the left nad right part of your tumm.. and see if you can hear it... its a great way of telling if its all out ;)

Quote

Would that explain why on a few occasions I've been there half hour and it stopped coming out ages ago, so I have a shower and some just pops out unexpectedly at the end cos it's bothering me lol xx

[voodoo]

so i take it there is no preperation before ie meds, you can just go when ever especially if you are not taking any pills? using the bisacodal tabs and supps i have to keep to a pretty strickt routine with meal times etc and i cant eat anything after i take the pills as it causes accidents the next day and obviously your then comitted to do a routine the next morning by a certain time, sounds like the peristeen is a bit more forgiving.

[ems]

Absolutely!! Go when you please, dont worry about anything else.. no drugs, no diet requirements! I did it every other day when I first started using it.. but after a couple of weeks I found it wasnt necessary! If I was due to use it in the morning, but couldnt for whatever reason.. I'm always fine till the afternoon... as I said... I've not had a single accident to date using it, which is more than I could have dreamt of before.

[Izziwhizzi]

I've used Peristeen for 10 months now and I'd never go back.

I am probably a rubbish ideal candidate to take it on. I've been a bad complete C6 for 25+ years, a lazy lazy bowel with a routine that never took less than 2 hours, usually more like 3 hours with cleaning up time. My bowel routine was killing my life, and causing major arguments with my partner who undertook it.

However I can now sometimes go in 5 minutes of removing the balloon - that is such joy I nearly want to open champers every time to celebrate, but I have to wait 15 more minutes to make sure I'm not disbelieving. Typically using the system I have 2 deposits, 30-40 minutes is about usual time.

There are a couple of different things I do. Firstly I have a quick check and removal of any loose debris before we start so the balloon will sit well and the water is pumped in well without leaking. I have way too much belly to feel the water move in my tummy like Ems, but I do a quick rock from side to side. Sometimes a quick check also helps speed stuff along when the water has come out.

I used to do a BM every 3 days - to which my spinal unit didn't like, but every 1 or 2 days wrecked the quality of my life, as the 3 hours never lessened. Now I do peristeen every 3 - 3 1/2 days, I get no sweaty after effects (I used to get AD symptoms during and after a BM). I get AD too much in my life but never once from using peristeen.

The only time I don't use it is when I end up in a place with no accessible bathroom and go back to the bed option - I holiday in out of the way places. I can't use even a disabled toilet so I always do it in my shower chair. An active para could always use a folding camping chair with padded ring and a bucket if they didn't have access to a loo.

Hope my story gives you confidence to change. No meds at all, no accidents, just warm water. Every para should consider it, and some of you tetras too.

Izziwhizzi x

[edlee]

Is this available in the US??? Guess I'll check with coloplast.

This sounds like something I could be very happy with,,,, if I can get it...
ed

[voodoo]

Right been in touch with my doctor and waiting for him to get back to me so a few more questions for you lot that have changed to peristeen.

When you first switched to the peristeen did you just do it in place of a normal routine?

Did you stop using supps pills straight away?

Did the first time using peristeen go ok?

sorry for all the questions just trying to give my self a heads up to what to expect if my doctor agrees

no doubt I'll have more questions

[ems]

When you first switched to the peristeen did you just do it in place of a normal routine?
Yup I just switched straight away...

Did you stop using supps pills straight away?
Yup, didnt take anything the night before.. and nothing that morning

Did the first time using peristeen go ok?
Absolutely fine, It did the job, I had a bit of trouble knowing if all the water was out but that is something you learn when you do it, and it does take a bit longer the first few times.. but nowhere as near the time it took with jsut pills and supps.

When I told my doctor about it, I gave her the leaflet that coloplast had sent me, and she browsed through it and just wrote out a script.. I think her words were woater has to be better than any drug, and as its now really a new thing.., its just a water enema, she seemed very excited about it. Ahe was not excited about the cost, but the purpose of the our meeting was to discuss what would be better for me, not wohat is best for her budget!

Cons for me at the time were.... ( using pills etc)
TIME!! ,pain from the drugs, stomach cramps, accidents.

Pro's to go over to the system....
Time.. no more three hours trips to the loo!!
Dont have to take nasty bowel irritants, no more laxatives and no more accidents.

The peristeen system if used properly, ie the water needs to reach all your stool for it to expel it out of your body, should completely clear your bowel out. No more, wondering if theres just a bit more after your routine, and going back to check 30 mins later! you flush the water into your bowel, it expands your bowel slightly and goes past the poo, on removal of the catheter it expels it. its as easy as that!

I made a point to my GP that the time taken at thqat present time was annoying me .. getting me down, I think that was really enough. She didnt need much convincing!

Feel free to PM me with any other q's!

[Zammo]

When you first switched to the peristeen did you just do it in place of a normal routine?
Yes straight away.

Did you stop using supps pills straight away?
Yeah, supps aren't required.

Did the first time using peristeen go ok?
The first time was a bit awkward, getting everything setup and figuring out how to reach everything without getting up from the loo. I also spilled a bit of water around, but my bathroom is a wet room so it didn't worry me too much. Also the balloon burst inside me first time, so now I inflate it carefully.

The only negative that I would add, is that I find it to be a pretty messy job. More messy than my old bp to be honest. But despite that it's still a great improvement.

[voodoo]

Did the first time using peristeen go ok?
The first time was a bit awkward, getting everything setup and figuring out how to reach everything without getting up from the loo. I also spilled a bit of water around, but my bathroom is a wet room so it didn't worry me too much. Also the balloon burst inside me first time, so now I inflate it carefully.

That couldn't of been a good experiance zammo

[Zammo]

Ha! It was a bit of a shock, but nothing else. I only pumped twice too.

[voodoo]

ok doky got my shiny new peristeen system sitting here and i'm going to try it for the first time on Saturday morning, so have you any tips, the booklet seems straight forward enough but doesnt really tell you much at the samr time if you know what i mean.

Question time again

do you manually check yourselfs before inserting the catheter?

how many pumps do you use to inflate the balloon?

How much water do you use?

Do you on;ly use it once during the routine (fill your bowel with water) or once your empty do another peristeen to make sure?

Do you manually check yourself before hitting the shower?

I know alot of these questions are user prefrence but would give me an idea for the first time

And thanks guys for all the time and help answering me, it's very much appreciated

[Zammo]

do you manually check yourselfs before inserting the catheter?
I don't need to anymore, but it's not a bad idea to check that there's nothing that might get in the way.

how many pumps do you use to inflate the balloon?
I'd say 2 to 3 slow firm pumps. When you add water if you start to hear water coming out you can always give it another pump.
How much water do you use?
I always fill the bag up and then I pump in the lot, but then I'm a big guy.

Do you on;ly use it once during the routine (fill your bowel with water) or once your empty do another peristeen to make sure?
I only use it once

Do you manually check yourself before hitting the shower?
Yes I still do, but over time you might get used to the procedure so that it is not necessary.

[voodoo]

onceyou have pumped the water in do you take the catheter out straight away?

[Zammo]

Yeah pretty much.

[voodoo]

so first time using it this morning and got to say it's looking good, did seem a bit of a fiddle, but it was the first time so i'm sure i'll get that sorted no bother, got to admit i was like, is that it, didn't know if i was finished or not so sat a while with no more movements and thought i would do it again just to make sure, put the cath in and started to blow the ballon up and pop, so thought no I'll just check my self a couple of times and hit the shower.

I recon I halfed my routine time using perestine for the first time and that was sitting for a good while to make sure I was finished, should be even quicker when i know what to expect and know what i am doing lol

As always got a couple of questions for the seasoned users, sorry if they are a bit graffic.

when you let the balloon down and take the cath out after filling your bowel full of water do you get a sudden relise of fluid when taking the cath out? (don't know if i maybe used a bit to much water)

Is most of your movement watery (for a better word) or formed stools?

Just have to see how i feel for the rest of the afternoon and night now, usually get alot of grumbling tummy and feeling not quiet empty so fingers crossed.

[ems]

Erm on thethe taking the cath out question, personally I say it just depends! Sometimes it does rush out, and sometimes it does'nt guess it depends whats up there!!!

hehehe.. you did it again!|!? Just to make sure?! LOL I think thats funny.. I was pretty bemused the first time, couldn't believe my luck so to speak.. all done in less than an hour, and probably better than I've ever done it!!!

On the stool hardness, depends on how your diet is really, I personally have always been on the slightly constipated side.. and I always tryed to keep it that way when I was doing it the normal bowel evacuation way, but my diet hasnt changed and its about the same. Though as some one might have said previously, it is a little messier, but honest speaking.. I don't really mind .. the pros out weigh the very few cons!!

Glad you were ok with it.. and I hope you never have to have a 2 hour plus normal session again!!!

As I said before aswell, I can no go three days without doing it. It obviously just clears you out so much better than doing M/E. Great if your going away for a weekend. I completely trust it now

[Izziwhizzi]

Hiya

Glad to hear it went OK. Sometimes some water comes out with the balloon but I prefer it not to. If it all empties with removal of the balloon it tends to not be a good movement. Maybe keep the balloon in for a couple of minutes after you've put the water in before you remove it.

I def have stools, not just water. Sometimes though a better description is that its more like a cow pat because of the extra water involved in the whole process.

And yes, recently I've had two balloons pop inside me too - rather off putting, just hope it was a dodgy batch.

Good luck, and stick with it

I x