151 replies to this topic

[Karl187]

No probs. Suppositories and micro-lax enemas never worked for me either- gravity like you said. Digital rectal examination worked a bit but it didn't clear out everything. Peristeen does. You'll feel the water in your bowel and it usually stays there until its ready to come down with the stool, could take a few seconds or up to 15 mins in my experience. If you are in contact with your rehab unit or the local continence nurse they can get you all the info about the system.

Edited by Karl187, 08 January 2010 - 11:57 AM.

[stuboy]

Hi ive been using the Peristeen for a couple of weeks using 800ml of water but dont seem to be passing much, im taking 3 senna & 1 movicol at 6pm. Does anyoneelse have problems with constipation using this & have any solutions to this problem? Any comments would be grateful !

[LeahC]

stuboy, on Jan 29 2010, 08:51 PM, said:

Hi ive been using the Peristeen for a couple of weeks using 800ml of water but dont seem to be passing much, im taking 3 senna & 1 movicol at 6pm. Does anyoneelse have problems with constipation using this & have any solutions to this problem? Any comments would be grateful !

Are you having accidents though? If not maybe your bowel isn't that full? I go every 2-3 days now!

[Karl187]

stuboy, on Jan 29 2010, 08:51 PM, said:

Hi ive been using the Peristeen for a couple of weeks using 800ml of water but dont seem to be passing much, im taking 3 senna & 1 movicol at 6pm. Does anyoneelse have problems with constipation using this & have any solutions to this problem? Any comments would be grateful !

Whats your diet like? Could possibly be something your eating.

[ss770640]

hello !

first blog on apparlysed.com :o)

finally got round to logging in.


Question.

does anyone here have previous experience going to bathroom 8 times a day for a plop?, then using peristeen to control/reduce it?

Everyone here talks about once or twice a day as though constipation of their only issue. i go about 8 times as i have a fast transit time from previous intestinal surgery.

only way i can semi-control it is to go 8 times! pre-SCI, i only went a reasonable/normal 3 times which i didnt regard as a problem.

after 4 viles of blood taken, 2 breathalyser samples and a colonoscopy, am patiently waiting for peristeen to arrive!

please arrive please arrive please arrive! am getting bored of showering during the day.

Do you think theoretically, you can eat something, then literally use peristeen to flush it all out via large AND small bowels?

[edlee]

That's going to depend an awful lot on the kind of "previous surgery" you had and how extensive it was.

If you need to go eight times a day, you may want to seek more help than just the peristeen,,,, but,, as it's changed my life so drasticly,,, maybe you should see what it does for you, first. If it can get you down to morning and night routines,,, down from the eight,,, I think you would be well satisfied.

I'm hoping for the best ss,, Hope it gets there soon.
ed

[ss770640]

edlee, on Feb 2 2010, 06:10 PM, said:

That's going to depend an awful lot on the kind of "previous surgery" you had and how extensive it was.

If you need to go eight times a day, you may want to seek more help than just the peristeen,,,, but,, as it's changed my life so drasticly,,, maybe you should see what it does for you, first. If it can get you down to morning and night routines,,, down from the eight,,, I think you would be well satisfied.

I'm hoping for the best ss,, Hope it gets there soon.
ed

thanks Ed, after a bit of research and multiple doctors and medical records spanning 30 years. found out it was 'Necrotizing enterocolitis'. as a new born, large part of my small colon was removed along with valve that regulates small to large colon. to be honest, i never considered my '3 a day', a problem until my SCI occured! majority of people have slow transits, mine is pretty fast! scared to take immodium in case it blocks me right up.

when i get the peristeen kit i will let you know how i get on. anything beneath 3 times a day will be a bonus!

am hoping i can fill myself right up and literally empty what i have just eaten. that will be a big plus for me!

i get conflicting signals (partial sensory) from bladder/bowel region. so any twitch, twig or minute piece of pain usually means my paranoia aspect takes over. 8 times a day is merely my way of controlling it.

the aspect of a champagne cork crossed my mind! lol cheers

[edlee]

Quote

the aspect of a champagne cork crossed my mind! lol cheers

Take it as you will,,, but google "anal plugs". Had I heard of them during my first year,, I would have sent for a few.
ed

[ss770640]

edlee, on Feb 4 2010, 12:58 AM, said:

Quote

the aspect of a champagne cork crossed my mind! lol cheers

Take it as you will,,, but google "anal plugs". Had I heard of them during my first year,, I would have sent for a few.
ed

yep been there done that!

now think of a champagne cork flying through the air! lol

i need a watermelon!

[stuboy]

LeahC, on Jan 29 2010, 11:32 PM, said:

stuboy, on Jan 29 2010, 08:51 PM, said:

Hi ive been using the Peristeen for a couple of weeks using 800ml of water but dont seem to be passing much, im taking 3 senna & 1 movicol at 6pm. Does anyoneelse have problems with constipation using this & have any solutions to this problem? Any comments would be grateful !

Are you having accidents though? If not maybe your bowel isn't that full? I go every 2-3 days now!

Im not having any accidents but just seem to be passing mostly water & can feel my bowel is bunged up due to not passing enough. My diet isnt to bad but could probably eat more fibre, the problem i think is the senna i dont think it is as effective any more does anyone else recommend any other laxitive?

[Dancingdolphin]

Hi All
Am loving Peristeen too.....

Anybody get problems with the water bag? I find after a few week it 'doesn't work' any more..water won't pump up through the tube..

Anybody else find this also?

Cheers

[Karl187]

Last time that happend to me it turned out the catheter was faulty and it was stopping water flow. Also if the top of the bag is open even just a bit then the water won't go anywhere. Check for leaks/kinks in the tubes aswell.

[nzpara]

stuboy, on Feb 9 2010, 10:15 AM, said:

LeahC, on Jan 29 2010, 11:32 PM, said:

stuboy, on Jan 29 2010, 08:51 PM, said:

Hi ive been using the Peristeen for a couple of weeks using 800ml of water but dont seem to be passing much, im taking 3 senna & 1 movicol at 6pm. Does anyoneelse have problems with constipation using this & have any solutions to this problem? Any comments would be grateful !

Are you having accidents though? If not maybe your bowel isn't that full? I go every 2-3 days now!

Im not having any accidents but just seem to be passing mostly water & can feel my bowel is bunged up due to not passing enough. My diet isnt to bad but could probably eat more fibre, the problem i think is the senna i dont think it is as effective any more does anyone else recommend any other laxitive?

How long do you leave the water in your system for , I use 1000mls after thats in i start a timer for 10 mins , after the 10 mins i rub my stomach in a (looking down) clockwise direction for 5 minutes then i remove the cath and bingo, Clears me out for up to 75ish hours

[Dearth]

Peristeen is unavailable in the US. The FDA has not approved its use.

How much do those things cost? I wonder if I could find someone to smuggle me one.

[nzpara]

Dearth, on Feb 11 2010, 07:03 PM, said:

Peristeen is unavailable in the US. The FDA has not approved its use.

How much do those things cost? I wonder if I could find someone to smuggle me one.

I got told by my provider that there about $350 nz $240 usd not sure how accurate that is, Then you will have to buy the catheters when you run out of the ones that come in the kit,
Worth giving it a go though

[Kendrick]

This sounds like something my nephew would like. Where can you get this system?? We are in the US does anyone have a web site or a phone number??? Could I ask the cost of the system? Thanks in advance

[stuboy]

nzpara, on Feb 11 2010, 03:21 AM, said:

stuboy, on Feb 9 2010, 10:15 AM, said:

LeahC, on Jan 29 2010, 11:32 PM, said:

stuboy, on Jan 29 2010, 08:51 PM, said:

Hi ive been using the Peristeen for a couple of weeks using 800ml of water but dont seem to be passing much, im taking 3 senna & 1 movicol at 6pm. Does anyoneelse have problems with constipation using this & have any solutions to this problem? Any comments would be grateful !

Are you having accidents though? If not maybe your bowel isn't that full? I go every 2-3 days now!

Im not having any accidents but just seem to be passing mostly water & can feel my bowel is bunged up due to not passing enough. My diet isnt to bad but could probably eat more fibre, the problem i think is the senna i dont think it is as effective any more does anyone else recommend any other laxitive?

How long do you leave the water in your system for , I use 1000mls after thats in i start a timer for 10 mins , after the 10 mins i rub my stomach in a (looking down) clockwise direction for 5 minutes then i remove the cath and bingo, Clears me out for up to 75ish hours

I have just been leaving the water in for a minute or two do you think it makes a difference if you leave the water in longer?

[LeahC]

I deflate the cath as soon I get 900-1000 mil in and I have no problems. I do massage my stomach to get it going sometimes.

[nzpara]

stuboy, on Feb 13 2010, 05:54 AM, said:

nzpara, on Feb 11 2010, 03:21 AM, said:

stuboy, on Feb 9 2010, 10:15 AM, said:

LeahC, on Jan 29 2010, 11:32 PM, said:

stuboy, on Jan 29 2010, 08:51 PM, said:

Hi ive been using the Peristeen for a couple of weeks using 800ml of water but dont seem to be passing much, im taking 3 senna & 1 movicol at 6pm. Does anyoneelse have problems with constipation using this & have any solutions to this problem? Any comments would be grateful !

Are you having accidents though? If not maybe your bowel isn't that full? I go every 2-3 days now!

Im not having any accidents but just seem to be passing mostly water & can feel my bowel is bunged up due to not passing enough. My diet isnt to bad but could probably eat more fibre, the problem i think is the senna i dont think it is as effective any more does anyone else recommend any other laxitive?

How long do you leave the water in your system for , I use 1000mls after thats in i start a timer for 10 mins , after the 10 mins i rub my stomach in a (looking down) clockwise direction for 5 minutes then i remove the cath and bingo, Clears me out for up to 75ish hours

I have just been leaving the water in for a minute or two do you think it makes a difference if you leave the water in longer?

It makes sense it would soften more etc, Give it a go and see if it helps the situation

[Karl187]

When I get about 850mls in I usually leave it there for 2 minutes or so. Once you get used to the way your body reacts you should be able to tell how long you need to keep the water in.

[stuboy]

Hi guys,

Can you tell me how many times you pump once you have inserted the catheter? Ive been using it for about 8 weeks & been doing 2 1\2 just to be safe and not bring on A/D but the last 2 days ive passed the catheter, should I inflate it more? I also dont seem to be getting a lot away im taking 4 senna but dont think they are very effective any more any one else recommend any other laxitive?

[edlee]

I don't use any softeners or laxatives,,, just leave the water in there for about 15 min. I only have to use the system every four days or so,, but I do "check" every night before I shower, to avoid unanticipated downloads.

I was wondering,,, are these available in Canada? I could make the border in a couple hours. People are driving up there to buy pharmaceuticals,,, why not enemas???
ed

[Karl187]

stuboy, on Feb 20 2010, 05:06 PM, said:

Hi guys,

Can you tell me how many times you pump once you have inserted the catheter? Ive been using it for about 8 weeks & been doing 2 1\2 just to be safe and not bring on A/D but the last 2 days ive passed the catheter, should I inflate it more? I also dont seem to be getting a lot away im taking 4 senna but dont think they are very effective any more any one else recommend any other laxitive?

I pump about 4 times and then some water might leak and I'll maybe give it another 1/2 or full pump. 8 weeks in is not long and eventually you'll get used to how many pumps you need. At first I was doing too many, then not enough, eventually you work it out.

As for laxatives- I use Isphagula Husk mixed into water, I use a brand called Fybogel. Works for me but you might want to try some fruit aswell, or maybe some prune juice (just hold your nose and think happy, happy thoughts!).

[ss770640]

lot of people here posting about Peristeen caths,

i got my kit a few days ago and already it is making a pleasant difference with regards to confidence. It properly empties you so much you dont even get a single grumble afterwards. i actually have confidence now. feels kind of good too, on the inside, when it all comes out.

I am still working my way down the 'bathroom break' scale. Am aiming for once a day. Twice max. (i have sections of intestine missing) so am naturally wary.

I have reused my first catheter about 7 times already with no problems. AT £7.80 a pop, i'd feel guilty about using 1 a day for the rest of my life.

With regards to how to obtain it, UK users can order 'spare parts'.

Suggestion: simply befriend a UK user and get him/her to send you the spare parts.... build you own, then use a cath or similar, from your local country, to suffice?? Surely other countries must have a enema kit commercially available? Am lead to believe is available in USA end of year. (which seems stupid for a water pump!)

I use 3 pumps, if water leaks, i simply switch the dial and put in another half pump. Simple. I use about 400ml-500ml. Am thinking of using more as i usually use this kit twice a day. (note my previous shortened intestine).

I have a question:

To PERISTEN USERS T11/T12:

(a) do you find your bladder can give you a "full" feeling which can be misinterpreted as "bowel" full? Am interested in your opinions on sensation/emptying bladder/using peristeen. I am under the impression my full/twitching bladder, which causes a bit of abdominal pain, is the main cause of my paranoia and not actually the bowel itself. In the past i'd normally go and strain to empty both. But this new kit means i have to change my habits...

( how long did it take for you to develop confidence with the system? 3 days in i am still paranoid during the day.

© how much were you advised to pump in to start with, and what are you pumping now? What made you increase?

much apprciated

[Dancingdolphin]

Hi all..I've been using it for about a year...I use 3 pumps ..and if it starts leaking then pump again. I use about 800 mls...sometimes most comes straight down, sometimes it stays up for 10 mins..I do abd massage after about 5 to 10 minutes and rock forwards a bit too...I think it's the best thing since baked beans!!
I always pump up 2 loads and sometimes 3..am I the only person to do this?? :-)
I reckon ..when I was a/b i'd go about 3 times a day..so if it needs 3 flushes and I can go now 2 1/2 to 3 days..it's fine!

[Izziwhizzi]

Hi

I've been using it for over 2 years now, and if love is a word to use in such situations, then I love it! I def love it in comparison to the 25+ years I've wasted huge amounts of time of my life crapping, getting AD, being totally wasted after BM, and having missed so many nights out because I've been 'busy'.

I would never go back, even with an £8 charge, I only use peristeen every 4 days. So that works out for me just £2 a day, and 10 minutes a day to poo - less time than many an AB takes per day.

I only go every 4 days because it empties me so well, really well. My method in brief:

Quick check to remove any spare debris, to make sure balloon sits well.
3 pumps of air in the balloon
I use one bag of water, approx 800ml.
Keep the balloon and the water in for approx. 5 mins.
Remove the balloon, the water stays in 9 out of 10 times.
Move about a bit, left right, have a hot towel over my head (I think warmth helps things move.
Usually I will hear things gurgling and will get 3 deposits. I think it moves from different areas of the bowel.
You always can tell the last deposit, it has an unusual aroma.

Sometimes I have a quick check if things haven't come out or down of their own accord.
Usually 40 mins and its all over, shower, then bed!

I never need a second bag of water, and I never take any softeners or laxatives of any sort. And I'm really pants at eating enough fruit or raw veg to say I eat a really fibre rich diet. I do however start my day with a bowl or porridge.

Hope that helps,

I xx

[ss770640]

ARGHHHHHHH

been having problems with peristeen lately.

normally use it once or twice a day (i have had some of my intestines removed age 6 months).

I use 500ml at 10.30pm, then at 0000am, it is accident time and an early shower for me! been happening the past few days.

Any ideas as to why?

I ate my last meal at 1830pm.

Anyone ever had problems with not achieving proper empty? or leakage afterwards? (non water leakage)

[LeahC]

ss770640, on Apr 15 2010, 02:52 PM, said:

ARGHHHHHHH

been having problems with peristeen lately.

normally use it once or twice a day (i have had some of my intestines removed age 6 months).

I use 500ml at 10.30pm, then at 0000am, it is accident time and an early shower for me! been happening the past few days.

Any ideas as to why?

I ate my last meal at 1830pm.

Anyone ever had problems with not achieving proper empty? or leakage afterwards? (non water leakage)

I put the full amount, is there any reason you can't do 800-1000ml at once? Just the more you go the more you 'go', you stimulate it to work faster xx

[ss770640]

LeahC, on Apr 15 2010, 06:27 PM, said:

ss770640, on Apr 15 2010, 02:52 PM, said:

ARGHHHHHHH

been having problems with peristeen lately.

normally use it once or twice a day (i have had some of my intestines removed age 6 months).

I use 500ml at 10.30pm, then at 0000am, it is accident time and an early shower for me! been happening the past few days.

Any ideas as to why?

I ate my last meal at 1830pm.

Anyone ever had problems with not achieving proper empty? or leakage afterwards? (non water leakage)

I put the full amount, is there any reason you can't do 800-1000ml at once? Just the more you go the more you 'go', you stimulate it to work faster xx

hi leah!

I was told to start with 350ml but normally use 450-600ml. I have heard of people use 1.5L!!! Crikey! Bear in mind although there is no reason as to why I cannot use more, the fact I have less intestine means I am a bit weary of pushing the amount in.

I do agree the more you put in the better it 'feels' empty wise. But I am suspecting as though I am not 'capturing' enough. Might try more tonight...

What did you start on volume wise? Do you ever feel as though you have put in too much?

It is worth noting My eating habits vary plus I still enjoy a good few pints now & then.

Do you notice a difference when your drinking?
Thanks for reply!

[Izziwhizzi]

Hiya

Any reason why you shouldn't use 800ml's or so? you need more than 400ml or else it'll just sit in the lower rectum and not move into any of the larger intestine which you need to get it to work properly. When I put the water in at the beginning my rectum is nearly always empty, and thats after 4 days so I def must clear myself out a lot as it was rarely empty on suppositories and digital, so I feel you are not doing it right somehow.

I feel that the water does only reach into the larger intestine (not small), and clears the sigmoid colon and for me I feel some of the descending colon. I def get gurgles across my belly so it must somehow affect the transverse colon, but I don't think it empty's there at all.

Good luck