26 replies to this topic

[Bren]

I am considering changing to the Peristeen anal irrigation system to avoid having a coloscomy. At the moment the biggest disadvantage in Australia is the cost... bout $4000 per year by the looks. I would appreciate some feedback from those that have been using this system for a while on the following:

Has anyone had any problems with dysreflexia when filling the bowel with water?

How often do you, in reality, replace the catheter? I know they recommend one use only, but so are the bladder catheters and I disinfect them and reuse them for months, as do most people.

How often do you have to replace the bag and controller etc etc..... or any other of the equipment?

Thanks.. Bren.

[ems]

Hiya, I;ve been using it for over a year now, I dont get and AD at my level (t12), and have never experienced any complications using it.
On advise from my doc, ( as it is pretty expensive), I re-use the catheter till it goes pop, which is usually once a week, after around 4 uses. They also suggest changing the bag eery ten times for hygiene etc!!!!! Ive changed it twice in a yr. I still have te same unit I was given.

What I do is I take out nice new catheter and use it according to intructions, then when I'm done I wash the catheter in hibiscrub* rinse it and put it in a travel toothbrush holder. I then use KY from that point onwards instead of soaking it in its pouch.


*Hibiscrub - http://www.lookchem....18472-51-0.html ... I get this from the docs, for washing the caths, most commonly used in our house for dissinfecting carpet when a four legged FurBaby has thrown up though! Very good stuff!

[Izziwhizzi]

Bren, on Sep 24 2008, 03:46 AM, said:

I am considering changing to the Peristeen anal irrigation system to avoid having a coloscomy. At the moment the biggest disadvantage in Australia is the cost... bout $4000 per year by the looks. I would appreciate some feedback from those that have been using this system for a while on the following:

Has anyone had any problems with dysreflexia when filling the bowel with water?

How often do you, in reality, replace the catheter? I know they recommend one use only, but so are the bladder catheters and I disinfect them and reuse them for months, as do most people.

How often do you have to replace the bag and controller etc etc..... or any other of the equipment?

Thanks.. Bren.

Hi Bren

I'm a C6 complete of over 25 years before I started using Peristeen. My bowel routine was a real downer in my life, 2-3 hours every third day with a very lazy inactive bowel, but 6 months down the line with Peristeen I would never consider not using it - its a no brainer. Ems helped me when I struggeled a bit at the beginning (timing, qty water, belly rubbing & gurgles etc) but now its been going well I love it (if love is a word you can use to describe a tetras BM!! :-) )

I get AD episodes quite frequently in my life but so far never with persisteen, not even close. Like Ems says the catheters can be re-used, I've had a unit break on me once (if I'd of paid for it instead of the NHS I'd of sent it back), and the bags can make a bit of a squeak if they are not making a tight fit.

I went camping in the summer to France, with hubby and 2 kids with our own tent, beds, cooker, clothes etc so I didn't have any room to take a shower chair. So for 4 weeks I had to go back to the old suppos, manual evac etc on a bed. This is what I had worried about, but I had no problems with transitions back to the old way, and then back to Peristeen.

I'd give it a go and see how it goes. The first few times will be an experiement but if it works for a knackered old, fat tetra like me I'm sure it will work for you. If you need any further info just carry on the thread, it would be great to see if it could help others too.

I xxx

[wales1]

ive been usig it for 2 months i get no problems filling with water,i put in about 400cc then empty then refill with another 400cc and it seems to clean it all out good ,i have to use it every other day depening on what i eat and drink,i am lucky i get mine on free prescripition in the uk so i only use each cath once,i also get all the antiseptic hand wash and wipes free and toilet bags,this have changed my bowel problem alot i feel much safer now. i get new bags and pipes every month and a new pump every 6 months, new wipes etc as and when i need them i just got to phone them and they will send next day delivery.

[wales1]

ems just noticed u are in the uk ,who told u to reuse caths your gp or the coloplast nurse?do u get all the wipes and towels ? im in wales so free prescriptions are u england.

[ems]

I know, but I feel guilty, when its not necessary. It doesnt need to be sterile, it just needs to be clean. Its just another coloplast money maker I have a wormery that most of my catheters go into ( emteva), I use emteva at home and speedicath compacts when I'm out.


Accessory Unit (15 catheters, 1 water bag) 29122 £122.00
Peristeen rectal catheters 10 29123 £78.00
Peristeen anal irrigation system 29121 £70.00

Yearly if you do what coloplast say... (12x122) + (2x70) = £1604
Yearly with one cath a week, water bag every 15 weeks (8.13x52)+ (1x70) = £492

I think we are very lucky to get everything for free, and this is personal choice, I work with a charity that gets our out of date caths sent over to the thrid world, I just cant believe how much we waste in this country, theres no justification for it.

My friend in Australia has been lucky, my doc has been paying for double my caths to send over to OZ, we just sent over a years supply with her container.. out there she has other choices. Glass reusable catheters, silicone reusable catheters, or buy your own

I don't re-use my catheters, apart from when I'm travelling, I have 2 silver catheters, my doc got them last time I went to Thailand, and didnt want to have to put anything in the Hold of the plane. Two ickle caths instead of around 252 caths (6 weeks worth). Very useful )

[Bren]

Thank you guys. This has been most helpful. I was actually enquiring for someone with quadriplegia. We haven't heard anything discouraging about this system yet, other than the price over here, so we'll have to investigate this further now.

[Izziwhizzi]

Bren, on Sep 29 2008, 03:22 AM, said:

Thank you guys. This has been most helpful. I was actually enquiring for someone with quadriplegia. We haven't heard anything discouraging about this system yet, other than the price over here, so we'll have to investigate this further now.

Hi Bren

I think tetras find it a little harder than paras to use. I've only spoken to another tetra who uses the system, and our timings seem a little longer than paras. I think its down to movement - i.e. getting the water into your tubes so to speak. But timings on peristeen to the old ways is so much quicker.

Also as few tetras can use a toilet its more of a shower chair job, and that may necessitate a carer to put the catheter in, and having a suitable bathroom. However the amount of care time I require to go, and also the level of care they are giving is soooo much less than the old ways.

I

[ss770640]

Peristeen

just took delivery of peristeen 2 days ago and have used it a few times since for the first time ever.

Easy to use great product. Guarenteed empty. Feels good. Should be given to SCI patients! (caution with high injuries).

I can sleep in peace. Socialise without worry and even after a few days, am noticing my time between bathroom trips is increasing because I am emptying to a higher degree.

I have reused my 1st catheter about 4 or 5 times. No problem. Simply wash it and use lube next time round. At £7.80 per cath, your healthcare provider will be straining!

ss770640, on Mar 14 2010, 03:54 PM, said:

Peristeen

just took delivery of peristeen 2 days ago and have used it a few times since for the first time ever.

Easy to use great product. Guarenteed empty. Feels good. Should be given to all SCI patients! (caution with high injuries).

I can sleep in peace. Socialise without worry and even after a few days, am noticing my time between bathroom trips is increasing because I am emptying to a higher degree.

I have reused my 1st catheter about 4 or 5 times. No problem. Simply wash it and use lube next time round. At £7.80 per cath, your healthcare provider will be straining!

Kit costs about £122. Catheters £7.80 each.

[airart1]

shame we cant get it in the states...

[ss770640]

ColoplasT are running it past the FDA at the moment.

Thought about this earlier.

I Wonder if you can holiday in the uk & request a private prescription to obtain it in the meantime?

If all else fails. Am sure some place in the states must defintely sell a home colonic irrigation system. Tis the same thing as peristeen.

[airart1]

well its just a warm water enema, but that gizmo they called me and said it should be available by the end of year......

[ss770640]

Does anyone here, after using peristeen, still feel the odd grumble afterwards or during the day?

Am still paranoid but that is because I have less intestines than a normal person.

[Karl187]

Like you said, could be your particular bowel condition. However, I do get grumbles, rumbles and wind during the day. That used to worry me and I was always paranoid about having a BM when I felt a rumble, but now I know its usually just wind.

[ss770640]

Thanks for reply Karl

noticed you are T12. Do you feel some of your grumbling and bladder ache/twitching like I do?

[ss770640]

I'd like to post an open question

In daily total how many times you guys n gals go to the bathroom?

I am obsessed with comparing my habits to others! :0)

[Karl187]

My bladder will usually only start complaining if I drink too much fluid and then it gets a kind of 'full' feeling and it can be quite painful if I don't do a catheter. It can feel like wind trapped in the bowels sometimes aswell, but once I catherize it will go away.

I go to the toilet once every morning, fyi.

[ss770640]

Thanks karl. Same for me. Took me 2 years to figure out all I needed was a cath instead of a dump!

Thinking of binning the fybogel too. Reckon that helps things move which in my case I don't want.

Thanks again

[gwells]

I would like to pay to have someone, in UK, mail me a system as a sample.
My name is Geoffrey. I am the father of a beautiful 11 year old daughter who was born with Spina Bifida (Spinal injury invitro). Her injury is L4/L5, walking with plastic braces that break fairly often. She is also bladder and bowel incontinent. I have been manually giving her an enema for the past 8 or so years now. We used the hollister irrigator analy for the first few years. After she reached 4 or 5 years of age the hollister irrigator was too small. I contacted all of the companies that produce the cone and it is pretty much a standard size. I had no other option but to make my own. I have had to make/create the cone irrigators larger due to her growth over the years. I came upon the peristeen irrigation system and have contacted coloplast but due to us being located in USA, the product is not FDA approved. I caused coloplast to remove it from their website. When I called the US rep and asked for it she immediately referred to the Denmark website and I assured her that it was the US website. It was removed the next day. I found reference to it on this blog and read the excitement in the users, as we did when we went to the irrigation system with our daughter from using diet, fiber and magic bullets to no avail. The surgeon wanted to do the redirect surgery but we had already figured out the irrigation method was working and the risk/reward was not even close compared to doing the surgery. This product would give her independence to do it herself and leave dad to supervise until she is comfortable doing it herself.

[Karl187]

There's several issues here.

Peristeen may not be suitable. Like everything in this particular area, it can work for some and not others. There is no way to know unless you try. Which brings me to my next issue. Obviously, as you have read, getting the system in the US is diffuclt and/or impossible due to some silly FDA bullshit. People here have procured systems from Canada. I'm not sure if that would be an option for you. It would be easier if you were within driving distance of the border for obvious reasons. Lastly, it may be a risk for someone to send you a system. First of all I am reliably informed they are very expensive and, here in the UK anyway, the only time you'll get a new one is if the old one is broken and a broken one is no use to you although if it could be repaired then it might be useful. But sending a kit to the US may pose a risk in itself. Customs may not take very kindly to someone trying to export a piece of medical equipment not currently avaliable in the country as per FDA rules and regs. Then they may also not take kindly to yourself, the importer. You may only be trying to do the best for your daughter, as I am sure you are, but there are issues here that need to be considered.

My two cents: Your best bet is Canada. There may even be someone on the forum here in the US or Canada who has a kit and could get it to you or you could get it from them.

In any case, good luck and best regards.

[gwells]

Thanks. I did not see Canada as an option on the websites for the product. I would have tried to see if possible. I have been told that the company I work for has employees in Canada and I believe that it is possible for me to contact them independently and make arrangements. Thanks again for the focal point of this need.

[gwells]

Also, I kid you not, when the hollister irrigator started to become too small for daughter, I thought of a tub through a balloon of some sort to plug the anus. But had no way to create or prototype such a thing. When I saw this product I was excited that someone made it, upset that someone thought of it and devastated that I cannot get it. If we had this I would use it and the current method, self made irrigator, to take advantage of times that my daughter visit grand parent sfor extended times. Currently overnight only without myself or mother able to do enema 6 times a week. We do take one night off so she can do one night sleep overs and not have an accident.

[jimmyjames]

hay guys im new to all this i just became a t12 complet in 10/09/2010 so i dont have any idea about bowel problems i dont even need a em i just didg stim and im out there in five mins is that good ? i dont know how long it should take .but i do have a problem with caths last time i put one in it got stuck and i started bleeding for about five mins .anyone have any idea what it is im doing wrong any help please

ss770640, on 14 March 2010 - 03:56 PM, said:

Peristeen

just took delivery of peristeen 2 days ago and have used it a few times since for the first time ever.

Easy to use great product. Guarenteed empty. Feels good. Should be given to SCI patients! (caution with high injuries).

I can sleep in peace. Socialise without worry and even after a few days, am noticing my time between bathroom trips is increasing because I am emptying to a higher degree.

I have reused my 1st catheter about 4 or 5 times. No problem. Simply wash it and use lube next time round. At £7.80 per cath, your healthcare provider will be straining!

ss770640, on Mar 14 2010, 03:54 PM, said:

Peristeen

just took delivery of peristeen 2 days ago and have used it a few times since for the first time ever.

Easy to use great product. Guarenteed empty. Feels good. Should be given to all SCI patients! (caution with high injuries).

I can sleep in peace. Socialise without worry and even after a few days, am noticing my time between bathroom trips is increasing because I am emptying to a higher degree.

I have reused my 1st catheter about 4 or 5 times. No problem. Simply wash it and use lube next time round. At £7.80 per cath, your healthcare provider will be straining!

Kit costs about £122. Catheters £7.80 each.

[edlee]

JJ,, if it's working for you without any "apparatus",, you are doing great. As for the caths,,, lubrication, lubrication, lubrication,,, I'd say it more, but my fingers would get tired. That and "BE GENTLE",, you don't want to go jamming things in there.

Other than that, you seem to be doing pretty well. The system is geared to those of us who have run out of other reliable options. For us, this is a life preserver in a sea of problems,, and we are greatful for it.
ed

Edited by edlee, 16 April 2011 - 08:15 PM.

[COOL Mobility]

I've just started using the Peristeen System here in Australia and getting moderate results. However, first two catheters exploded before the fill was done. Then on try three noticed the bag (meant to last 6 months) has a pin sized hole in front, but not on seam so surprising.

As a C6 complete after 34 years I'm looking at colostomy, so trying this out to try and stave off the stoma stage (may yet come).

It seems to be getting better but still taking Senakot the da of BM but hope to drop that down with time. We'll see. Fingers crossed.

Expensive @ AU$157 per 10 catheters but hey that's the difference to a stoma (no cost for stoma supplies in Aust).

Will keep informed of progress and read of others here.

[Izziwhizzi]

Hiya CM

Hope things get better as you use it more.

Was always an evening girl as too much to do during work day hours, but have recently transferred to mornings and its been better with the peristeen. Been using it for 3 yrs plus and its saved my sanity. Like you I'm ticking into my 3rd decade and have too much to do in life to waste time & effort crapping old style.

Have to make sure theres no significant time lag between water in and first deposit out. I keep the balloon in for a minute or two after the water is finished. However the balloon will pop if theres too much pressure down there from wind in your pipe work. If you can jiggle about, lean forward, rub your stomach etc when the balloon is out.

Sometimes my helpers finger helps stuff come down, especially after the initial poop.

Also ask for refund from coloplast for the burst balloons, but word has it on the grape vine they are actively working on this issue.

Keep with it before going down the bag route - just see what Jim, aka Illinois Boy, has written about his!

Izzi x

[edlee]

Anything one can do to keep those rat b##tard doctors from poking holes in you,,, is worth trying
ed