15 replies to this topic

[Scorpio81]

Just wanted to let you guys know, particularly if any of you use the smaller size rectal caths, that Charter are completely out of stock until the redesigned ones come into stock next month.

I only found this out today, after placing an order on Tuesday and calling them because nothing has been delivered. Why they didn't tell me this on Tuesday, and therefore allowing more time to get something sorted, I do not know. I just can't believe that no one thought to tell me this before - I might have been able to order extra caths to see me through, but now my only hope is that the local Coloplast rep has some that she can bring to me (they are trying to contact her to ask the question). They are sending me some of the standard ones completely free of charge (i.e not on prescription), even though I told him I have real problems with them. I guess I don't have a choice, will have to make the best of it. It's a really crappy situation though!

Hope none of you have found yourself in this situation!

[kjm465]

My husband's in the same situation - have been told that we can't order the new ones until Jan 1. Are making do with the old ones and supps until then. Will be glad to see the transition :-)

[megatrig]

Peristeen and Charter really have got this one wrong!

Try Quofora instead..............much easier!

[Scorpio81]

Kjm - wow, your poor hubby's got even longer to wait The new smaller caths won't be in stock til December 9th, but the new 'standard' caths are already available here - that's what they've sent me, and I had no choice but to use them. They're definitely more grip-friendly and the balloons appear to be stronger (which is a big improvement - the old balloons were notorious for bursting), but i'm still struggling with them as they're just too darned big for me, and so i'm getting rubbish results (i.e not managing to pump in more than 200ml at a time before my bowel spasms and evacuates out of control).

Megatrig, yes Coloplast indeed got this very wrong! Charter also lied to me by telling me I had 2 boxes on their way to me - one which was apparently 'somewhere with the distributors' (was supposed to be delivered on a Saturday but wasn't) and another which they sent out on the Monday when I called to say I hadn't received anything. I only received 1 box, which is all I need, but that's not the point. It's just very poor management and planning on their part, which is a big shame because when the Peristeen system works, it's great. No one at my colorectal clinic ever mentioned anything about Quofora - I noticed you're in the UK, how did you get to be introduced to it?

[edlee]

I keep googling Quofora,, and I keep getting some aps company called Quofore. Anybody got a link that works.
ed

[greybeard]

edlee, on 24 November 2011 - 06:19 AM, said:

I keep googling Quofora,, and I keep getting some aps company called Quofore. Anybody got a link that works.
ed

Playing with Google I discovered that you need to lose the "O". The name is Qufora.
This is the UK distributor http://www.manfred-s..._irrigation.asp

This is the manufacturer's site http://www.mbh-international.com/en/

Edited by greybeard, 24 November 2011 - 08:22 AM.

[edlee]

Thanks GB. Unfortunately,, they aren't available in the US, either.
ed

[greybeard]

edlee, on 01 December 2011 - 07:06 AM, said:

Thanks GB. Unfortunately,, they aren't available in the US, either.
ed

I did notice the following line on the manufacturer's website. I think this is a Danish code. Perhaps a call to them might help.
If you did not find your own country please contact us:

Tel. + 45 8830 0592

[Scorpio81]

Ugh, still having problems with Charter/Coloplast. The smaller catheter that was supposed to be available in October, then December, apparently won't be available til January now! Not even sure of what date, and I don't trust that they won't move the date again. I just think it's really bad of a huge company like Coloplast to screw with production like this - if they can get one size of catheter produced and distributed, why can't they do it for the smaller size? The woman I spoke to told me that the size i'm using has been approved by medical professionals and is perfectly safe and adequate to use, all I need to do is just inflate the balloon with only one pump. That's what I have been doing, i'm not totally thick, but the thing is just too big for my anatomy, and it does cause me problems! She said a complaint has been forwarded to head office on my behalf, but what good will that do? Unless they can get me what I need now, it's not worth a damn!

Sorry for the whinge, but there aren't many people I can talk to about this - people who don't know what Peristeen is, or even bowel management that's not the 'norm', just won't get it. Sort it out Coloplast!!

[edlee]

Scorpio,,, I have NO real idea of the relative size of your anatomy. Having said that,, I "may" have a few tips that I have found to help me. I, too, have had,, and still do have,, the problems with the water leaking past, the popping out, and the bursting. Something I have noticed about MY anatomy is that my anus,, while obviously tight enough to hold in stool,, will often allow a balloon of rather large dimensions to pop out. It doesn't happen ALL the time,, but often enough to be troubling. I believe it is caused by the build up in pressure from paristalsis,, but sometimes it's so early in the process that I wonder about that. I have been able to reduce the occurrences by a simple process.

If you've done your own manual stimulation,, you are probably aware that there is another sphincter above the rectum. My method is to use the catheter ot irrigate the rectum, then,, very gently, push it through the upper sphincter, and do a little irrigating there, too. Then pul it back into the rctum again before inflating. This method seems to allow the water to flow up farther into the intestine,, and at the same time hold off the contractions that force everything out.

It doesn't work every time,, which is why I always have a container of extra water handy. But it's gets me to about three out of four efforts with good results. Perhaps this might help you to be able to work with the catheters you have,, until the smaller ones are available.

I hope you have better luck. This bowel business is a pain in the ass.
ed

[Scorpio81]

edlee, on 29 December 2011 - 12:01 AM, said:

I hope you have better luck. This bowel business is a pain in the ass.
ed

Hehe, sorry that last comment just gave me (much needed) chuckle Thanks!

Oohh now you mention that 'upper sphincter', I do know what you mean, though for some reason it never occurred to me that that's what it was! It's not that prominent though - I can just about feel the edges but it doesn't seem to tighten or close much, is that normal (if there is such a thing ) Thanks so much for that tip, I will definitely give it a go

[edlee]

I noticed it first while doing DS. Found that I could touch it if I first stimulated much lower. There are, apparrantly, a number of them scattered about the intestine, that slow things down enough for the contents to dry sufficiently enough.

You will notice, when you try to GENTLY force the end of the catheter beyond it. I have found that I need to allow the warm water to flow in the lower section for a few seconds before the upper one opens up enough to enter.

There's a lot more to this s&&t that they print in the instruction pamphlet. But, hell,,, this whole SCI thing is a learning process.
ed

[greybeard]

Ed, did you get any joy ringing the Qufora number?

[edlee]

Not yet, GB. In truth,, I'm a bit reluctant to dial an overseas ( for me) number that isn't toll free. Well,,, that and,, I forgot about it.
ed

[kjm465]

...we are officially out of caths and the Canadian office is closed until mid next week. The old caths were awful (we blew 2 for every usable 1) but they were better than supps.

Y'know - this whole situations really bodes poorly for Coloplast's PR dept.

Oh well - the positive news is that the pharmacy built Magic Bullet supps within hours of our request. Can't lose 'em all :-)

K

[Scorpio81]

Oh K, sorry to hear you're also having problems . I really don't know what the problem is. I agree that they did need redesigning because the balloons on the old ones were just way too fragile, although I'm not personally that impressed with the new ones in that they are a pain to connect up to the tube (might be just me though, maybe there's a knack to it). It is bad PR for them, but as they have such few competitors when it comes to bowel irrigation, people have no choice but to out up with it. I wish one of the other continence supplies companies would design something similar, but I guess peristeen is patented, so we're stuck with coloplast. Anyway, glad you got something else sorted in the meant time!