[LeahC]

If you're still getting a result on the 2nd time I wouldn't recommend switching to every 3rd day. Maybe do it every day for a week then back to every 2 (just once) and see how it goes? xx I don't check, but I often have a bit right near the end as it comes out when I inflate the balloon xx

[edlee]

I check every day, and have no trouble going every fourth day,, but I think I might try the double washout myself.
ed

[LeeinNCUSA]

Can anyone give any DEFINITIVE info on how to acquire a Peristeen system in the messed up USA?

It seems PERFECT for me, also keep in mind I am not above doing something 'illegal' to get one:) Does anyone wanna be my mule?

I am of course serious, has anyone in the US been able to get one in-hand?

Have written Coloplast 3 times, all I get is:

"Dear Lee,

Thank you very much for your interest in Peristeen Anal Irrigation. Unfortunately it is only availbale in a
limited number of countries at the moment, however we are aware that there is a strong demand for system and we
hope that our product will be available in the US in the future.


With kind regards,

Coloplast A/s"

Thanks everybody

Lee

[Anderzip]

We here in Oz are not so lucky as you guys it seems. We have to pay for the whole shebang. AUD20 for a catheter! Single use. They have to be kidding.

Whatever. I've been using it since about Nov. and works great. Except ... the bags pop, the catheters pop and cost way too much, the fittings damage easily...

Obviously I'm not a gret fan of the version ex factory so I made my own using a juice bottle and a copule of tubes and spiggots. The only original bits are the pump/controller and the catheters which I can get about 3-4 weeks use out of simply by washing them down with soapy water and stirong them in glycerin, which I also use as the lube.

No more popped bags and it works every time! I'm a 2nd or 3rd daily person, depending on diet, use a small amount of salt in the water (about a teaspoon per ltr) to keep the pH right and it takes about 15-20 mins holding and then 10-20 mins to empty, with a little massaging rt to left to help it on its way. Amount of water depends on how full I feel. Oh and I'm T5 so get AD. But this helps as I get warnings about what's happening!

Beats 2 hrs using enemas. Just wish it didn't cost us so much. Practice makes perfect. Good luck.

[shaggy79]

Hi people well i really dont know whats goin wrong but its not working!!!!!!!! ARRRRGH the 1st problem is the balloon almost always slips out! an that causes blood! grrr i'm so frustrated with my bowels at the mo, i thought it was all goin really well a week ago the cath stayed in i pumped the whole bag of water in, and had the biggest 'clear out' ever! it was great, but since then i havnt gone the cath wont stay up there and suppositories arent doing anything and its now 5 days with out any kind of bowel movement... i'm starting to worry.
Help please anyone got any ideas before i turn to senacot???????

[edlee]

Five days is not a big deal,,, as I've gone six with no accidents and a good dump at the end. As for the caths slipping out,, another half pump, if you haven't already gone to four, might be enough.

You can also hold it in with a gloved hand,,, I've done a couple times when the balloon burst and I didn't feel like putting on another cath. I'm a T10 with no trouble reaching.

The biggest problem with waiting that long is it takes a little longer to be sure you are done clearing,,,, and the volume is,,,,,legendary and messy.
ed

[ems]

Just thinking, if it slips out, there shouldn't be any bloody, theres nothing rough on the catheter and of course if its just *slipping out* it sounds like there enough room for it to do so. If the balloon pops first I can see it happening, but I've personally never experienced blood with it. The blood comes from trauma, it shouldnt be there. do you make sure that when the balloon fills up with air, that it is definalty inside the rectum? Or do you think maybe it could be the pressure inside the rectum as the water level increases inside that maybe forcing the cathter out. Must be reason, has anyone else found this happening?

This post has been edited by ems: 08 May 2009 - 03:35 PM

[fastwheels]

i had the ACE Procedure operation done last year all i do is put the Enema in to my small opening off the bowel with 500mls of salt water & its cleans the whole bowel out it taken some time to get it right but it works great now

the Peristeen cleans only the lower bowel what ive had done cleans the whole bowel out

ACE Procedure (Antegrade Continence Enema)

http://www.ich.ucl.ac.uk/gosh_families/inf...e_families.html

http://spinabifida-i...o/bowelsurg.htm

from fastwheels

[ems]

Fastwheels, the peristeen can clean out the upper parts of the bowels, it just depends how much water you use. You can feel the water ( when your squash your tummy), go up and over the other side of the bowel, and the more water you use the further it goes. I was about to have the ACE operation in 2007, thankfully the peristeen unit came out just in time. I'd much rather use the peristeen than have even the smallest of stomas.

[ems]

The peristeen system is now the alternative to the ACE procedure and the colostomy.

This post has been edited by ems: 09 May 2009 - 02:28 PM

[LeahC]

Ems, I have the catheter just come out on average twice a month, and the balloon is still inflated, it's scary! This week I've had balloon after balloon pop instead!

[ems]

do you think maybe the popping caths are faulty in some way? wondering if we could compare batch codes, when onesdo pop. If it was any other comapny where a product failed, they would replace it!! I wonder what they would say ;)

Hmm its an odd one about them falling out, do you think as I said in the last post, it might be the pressure of the water inside the lower bowel round the balloon with the obvious added gravity factor, have you found you've bled when it jsut falls out?

I've had them pop, but not for months. But I personally have never had one just fall out of me.

[LeahC]

ems, on May 9 2009, 03:52 PM, said:

do you think maybe the popping caths are faulty in some way? wondering if we could compare batch codes, when onesdo pop. If it was any other comapny where a product failed, they would replace it!! I wonder what they would say ;)

Hmm its an odd one about them falling out, do you think as I said in the last post, it might be the pressure of the water inside the lower bowel round the balloon with the obvious added gravity factor, have you found you've bled when it jsut falls out?

I've had them pop, but not for months. But I personally have never had one just fall out of me.

Sometimes there is a small amount of blood on them even if they stayed in and deflated normally but not often. I will call Charter and tell them about 6 popped on me in a row! I was scared to shit lol!

[Izziwhizzi]

Yes, tell Charter, they will apparently replace them.

I spoke to the coloplast people at Naidex about popping balloons. I obviously wasn't the first person. She suggested that when we had the cold weather in Feb a batch had become too cold and affected the balloons elasticity.

I'm not too sure that was a correct answer, but it was at least an answer. She suggested that prior to insertion you blow the balloon with 3 pumps and look at it. If there are areas where the rubber/plastic is not stretched clear, and there are solid white parts, then the balloon has a good chance to fail. Try it after you've wet it, you'll understand.

As to slipping out, I pump 3 and a half pumps, and have never had any catheters slip out with balloon inflated. I always have a quick check before insertion though to remove any stray 'rocks' that may be there. Then it will sit properly and there will be no leakage as you pump in. I found if the balloon couldn't sit properly because of anything in the way, then the water would just come out nearly as quick as it went in.

Also they've changed the grey controller to give a new option, which they implied stopped the water flowing back I think. I've not needed a new one yet, so I'm not totally sure. Also the tubing seemed to be improved to stop it from kinking.

Never had any blood though, so can't help you on that score.

I xx

[edlee]

My limited experience has only had popping twice ( not at all since I went down on the pressure) and only fell out once when inflated.

Do you use the entire litre of water??? I dropped down to about 500 or 600cc with good results,,, tho I often do a 2nd wash out with whats left in the bag ( without balloon) to help with the clearing.

As for going with a colostomy or an ACE,,, well,, I'll stick with the peristeen till the supplies run out.
ed

[LeahC]

Yes maybe it slides out as there may be something in the way, good thinking batgirl I use between 700 to a litre.

[mercedes]

[I have just started using the Peristeen, and am having trouble with the balloons popping. I always leave the catheter lubricated with water for specified time, plus, and blow the balloon up outside to check. Today I used three pumps and the balloon burst before I even started pumping the water. I used a 2nd catheter, gave it 2 pumps, inserted 100ml water and that burst. Gave it up as a bad job. This is happening regularly and it is putting me off.

[Zammo]

I think I've been using the system for close to a year now. I've not had any fall out, and only 2 pops so far.

[LeeinNCUSA]

QUESTION FOR PERISTEEN USERS

I'm working on 'importing' a Peristeen to the prudish & backwards US BUT

the US DOES have available all components of the Peristeen, just that it isnt the Coloplast product.

Tell me, if I purchase the inflatable bulb & catheter, tubing, & a fluid bag, would I not be doing the exact same procedure? If not, what would the difference be? If I do this, do you think I am taking a big chance?

Thing is, the inflatable nozzles I've found look EXACTLY the same.

INTERESTED in your responses, thanks in advance!

Lee

[ems]

I'm pretty sure that if you can get similar products, why not!? I know of one guy that just uses a very large foley catheter attached to a night bag!!! As long as your very careful, and understand what your doing, I really dont see why not ;)

All the Peristeen sytem is, is an over priced enema unitwith expensive consumables, dressed very cleverly ;) Enemas have been used for hundreds and hundreds of yrs, only diff is some ppl pay for them in some toxic clearing clinic, some ppl do it with coffee, and some ppl need to do it!

LeeinNCUSA, on Jun 7 2009, 09:33 PM, said:

QUESTION FOR PERISTEEN USERS

I'm working on 'importing' a Peristeen to the prudish & backwards US BUT

the US DOES have available all components of the Peristeen, just that it isnt the Coloplast product.

Tell me, if I purchase the inflatable bulb & catheter, tubing, & a fluid bag, would I not be doing the exact same procedure? If not, what would the difference be? If I do this, do you think I am taking a big chance?

Thing is, the inflatable nozzles I've found look EXACTLY the same.

INTERESTED in your responses, thanks in advance!

Lee

[dolly]

Hey

I was thinking about trying this system and just wanted to see if anyone thinks it would be good for me??
I'm a very active tetra and am independant with everything, i havent brilliant hand function but always find away, my transfers are good though so can get on/off toilet!
Do you think I could use this system on my own, is it best just to try it??

cheers

[edlee]

Absolutely,,, It's been a godsend for me. Or sent by an angel, at least.
ed

[Anderzip]

dolly, on Jul 27 2009, 10:06 PM, said:

Hey

I was thinking about trying this system and just wanted to see if anyone thinks it would be good for me??
I'm a very active tetra and am independant with everything, i havent brilliant hand function but always find away, my transfers are good though so can get on/off toilet!
Do you think I could use this system on my own, is it best just to try it??

cheers

I agree. I've been using this method for about 8 months and have found it to be great. This after 32 yrs using crappy, useless, toxic enemas. Wish they had the foresight back then to put me onto this method.

Only problem I can foresee is getting the 'catheter" in, and maybe putting them on cos they can be a bit tight to do up. Quad friend has that trouble (C6 inco.).

Just beware that it does trigger AD, the water bags are hit and miss (sometimes the pickup tube doesn't) and they pop and the catheters pop too frequently.

Otherwise, go for it!

mercedes, on May 18 2009, 05:02 AM, said:

[I have just started using the Peristeen, and am having trouble with the balloons popping. I always leave the catheter lubricated with water for specified time, plus, and blow the balloon up outside to check. Today I used three pumps and the balloon burst before I even started pumping the water. I used a 2nd catheter, gave it 2 pumps, inserted 100ml water and that burst. Gave it up as a bad job. This is happening regularly and it is putting me off.

I was told by the Coloplast people here in Oz that it's the pre-inflation that's the problem. They are only made to be inflated once apparently! Pain is the ... yeah, pocket really.

[Karl187]

dolly, on Jul 27 2009, 01:06 PM, said:

Hey

I was thinking about trying this system and just wanted to see if anyone thinks it would be good for me??
I'm a very active tetra and am independant with everything, i havent brilliant hand function but always find away, my transfers are good though so can get on/off toilet!
Do you think I could use this system on my own, is it best just to try it??

cheers

If you can get yourself on and off the toilet then this system won't be any bother to you. I was injured back in November last year and nothing has worked for my bowels apart from peristeen, it is literally a god-send and I would recommend it to anyone.

However, you have to be open to a little bit of success and failure to get the whole thing working for you. It took about two months for me to get it working effectively and I now use it every day. I have experienced the balloons slipping out, bursting, tearing- you name it and its happend to me. Trick is not to give up. (I reckon the catheters that exploded were faulty as some in the same batch would not inflate properly either, they would go half and then the other half so they would partially dislodge mid-use- if this happens to anyone I suggest cracking open a new batch and comparing what happens.)

To LeeinNCUSA: Coloplast is a global company and it has healthcare distribution companies in most countries- you shouldn't need to import your system. This is a link to Coloplast continence dealers in the US, one of them should be able to help you: http://www.us.coloplast.com/ECompany/USMed...b4?OpenDocument. If for some reason they don't have Peristeen then ask them to get it- don't take no for an answer. (A friend who I recommended Peristeen to is having trouble getting his continence advisor to sign off because she doesn't know what the damn thing is- I've found that a lack of knowledge about this piece of kit is fairly certain even in specialist healthcare units.)

[edlee]

Unfortunately,, the FDA has something to say about that. No approval,, No sell. They haven't even applied yet.
ed

[Karl187]

edlee, on Jul 31 2009, 04:13 AM, said:

Unfortunately,, the FDA has something to say about that. No approval,, No sell. They haven't even applied yet.
ed

I'm sorry to hear that, I assumed it was designed over there. I really hope it is approved, its such a good system.

[edlee]

I was lucky enough to,,, obtain,,, one. I'll use it till I run out of supplies,, calling Coloplast twice a month,, hoping they'll get the idea.
ed

[lissalyon]

edlee, on Aug 1 2009, 03:48 AM, said:

I was lucky enough to,,, obtain,,, one. I'll use it till I run out of supplies,, calling Coloplast twice a month,, hoping they'll get the idea.
ed

If anyone in the UK is having trouble with their PCT supplying it then Dan Burdon at the Spinal Injuries Association is looking into it

0845 678 6633

[E-DOG]

I just read something about "enemeez" or "enemeze" a small enema you squirt into your rectum for bowel care. Looked simple enough. I'm guessing this is different than peristeen? And why does the peristeen have balloons that burst and holes that whistle and all that other stuff. And why can't ya get it over here?

[Karl187]

The peristeen uses an anal catheter to insert the water up into the bowel. It is about six inches long with balloon on the last two inches or so. The catheter is inserted into the rectum to just below the balloon line and then it is inflated. This makes it stay in place so you can pump water up into the bowel without it flowing back down. Once you have enough water inserted you deflate the balloon and hopefully the bowels will move. It is kind of like an enema or douching, but, again, quite different to those in its practice and operation, but the idea is the same.

I had a balloon burst on me this morning, its bloody annoying and makes you jump and tense. Its usually a faulty catheter or too much pressure from above that makes this happen. The pressure can also push the catheter out with the balloon inflated which isn't too good either, but if you do it right these things shouldn't happen often.

The bags whistle because of the pressure generated via the pump which pushes the water through the tubes, its nothing much to worry about and if the equipment is new it doesn't usually happen.

Up until I joined this forum I thought Peristeen was avaliable in the US but I've since been told its an FDA approval problem. All I can say is I hope they stop sitting on their hands and pissing away taxpayer money and actually okay the system.