11 replies to this topic

[eimear]

hi im only using the anal irrigation about 3 weeks and I'm just wondering if there is anyone else having problems with the irrigation
I've been looking at the post on the irrigation i.e bursting baloons but I don't see anyonw with any problems
I know I have not been using the persisteen irrigation long but I was just wondering how long it takes before it starts working
I'm only using 600ml so maybe I'm not using enough water but that is how much the nurse told me to use untill I see her next week
she said too introduce 100ml more each week
all i am passing is browm water and then I am incontient for the rest of the day
I do the irrigation in the morning around 10am
when i take the catheter out there is blood on it and that has happened since I started using it
after I do the irrigation i feel nausea for the rest of the day and the pain in my back seems to have gotten worse
will these symptoms go and will i eventually have a bowel motion

[Ohiokitten4]

Hi

I have been using the P.I.E= Pulsed Irrigated Evacuation system. I cannot run it myself and am not sure if it is like what you are using. I know for when it is done on me it is taking between 2-4 hours to get good results. as long as you are seeing color in the water then you are still going. Although I have had it come out clear, and still had accidents afterwards. So it's like you're damned if you do, and damned if you dont! Im at the point where I'm tired of the accidents..So I saw the doctor for a colostomy so I can finally get my life back. I cant wait.. actually looking forward to it.

[scaldedcat]

I know what you mean kitten. I am the same, accident after accident since my injury 18 months ago and after trying every medication known to man, peristeen which was going to be my life changer, I too am booked for a colostomy. The constant worry about accidents has left me a virtual recluse in my home, as accidents here are bad enough, but having them in front of strangers, friends or family is too much for me I'm afraid.

Sorry I can't give you any advice on the peristeen eimar as I too had problems and have now gone back to enemas and digital stimulation which is just a hit and miss type affair for me, works for a few days and then an accident in bed the next.

Tim

Edited by scaldedcat, 16 August 2011 - 01:58 AM.

[clockwork1]

The first year of being a para i would have accidents each week. but over time things do get better. its been 6 years now as a T5 complete. and i would think i have a accident once every 6 months if that. But it would only happen within a hour or two after using the toilet. i put it down to knowing your body. and the only way you can do that is stop taking meds for your bowls and eat and drink all the right things. and to do your bowl routine at the same time every other day. mines at 7 each morning before work. I found taking medications for your bowls only stop you going or made me go when i didn’t want to go.
i work fall time 9 to 5, 5 days a week and i live with it.
i tried using the peristeen irrigation last month and it made me bleed and it kept falling out still blown up so i stopped using it. Might try it again soon just might try holding it there this time.

[Scorpio81]

Hi eimear,

I'm sorry you're having problems, I am too and it's so frustrating. I keep seeing all these posts from people who've said how much it has improved their lives, freed them up from accidents etc and keep thinking 'will I ever feel like that?'. I feel like i'm in a constant battle of wills with my bowel and bladder, and I just can't seem to get it right.

I've not even managed to get more than 300ml in at a time, because i've experienced water gushing out around the fully inflated balloon, which means i'm not clearing my colon properly.

I've also noticed blood on the catheter, and have experienced bowel cramps and headaches afterwards. I find it aggravates my back pain too, so can empathise with you there.

I wish I had some words of wisdom for you but i'm afraid i'm in a similar boat! Do you have a peristeen nurse or advisor you could call? There's also a coloplast helpline number somewhere in the starter pack, although I don't know how useful that is.

I hope you're able to find a solution to your problems.

[shady]

Hi Scorpio81

If you are experiencing water badly leaking out around the catheter then you need to give the balloon another puff. We are all different shapes and sizes so there cannot be such a thing as a fully inflated balloon.
Sometimes I use three puffs sometimes four. It just depends on the water.

[edlee]

The tempeture of the water can make a difference, too. what's pushing the inflated catheter out is as much peristalsis as water pressure from the peristeen. Part of the deal is that pushing the water up there is supposed to stimulate the body's own system. When it does,,,, it pushes pretty hard,, so the amount of inflation is reduced making the balloon smaller,,,, till it gets out that is.

Coloplast has long had problems with bursting of catheters,,, hopefully they have addressed that,, but there is going to be a limit on how much you can pump them up. I choose to hold them in place till I have pumped in what I consider enough water,,, generally 600cc. If I have some leakage,, I try to compensate with a bit more. Generally,, after pumping and holding,, I'm good letting go for about three chapters ( I read on the pot,,, so sue me). If all goes well,, I "pull the plug",,, read about six more chapters,, then use the remaining water ( without inflating the cath) to "wash down the internal walls" so to speak. Then into the shower.

As was said above,,, you have to stay off the softeners and laxitives,, eat enough fiber,, drink enough water.

If you think a colostomy is the answer,,,, talk to Ratticus.
ed

[Scorpio81]

shady, on 16 August 2011 - 04:42 PM, said:

Hi Scorpio81

If you are experiencing water badly leaking out around the catheter then you need to give the balloon another puff. We are all different shapes and sizes so there cannot be such a thing as a fully inflated balloon.
Sometimes I use three puffs sometimes four. It just depends on the water.

I generally pump 4 times, sometimes 5 - the leaflet says never to pump more than 5 times so I haven't. It doesn't matter how many times i've pumped, I still leak around it after only 2-300ml. I wish I could get a good 500ml up there because I think that's the only way i'll be able to stay accident-free for a couple of days.

Edlee, what do you mean "the amount of inflation is reduced making the balloon smaller"? Does the balloon actually shrink without manually deflating it?
So when you do it, does the water not all come out at once? I'd like it to be like this for me - i'd be quite happy to take a book to the loo with me, but I don't even have enough time to even open a book, let alone read it

[eimear]

Scorpio81, on 17 August 2011 - 12:26 AM, said:

shady, on 16 August 2011 - 04:42 PM, said:

Hi Scorpio81

If you are experiencing water badly leaking out around the catheter then you need to give the balloon another puff. We are all different shapes and sizes so there cannot be such a thing as a fully inflated balloon.
Sometimes I use three puffs sometimes four. It just depends on the water.

I generally pump 4 times, sometimes 5 - the leaflet says never to pump more than 5 times so I haven't. It doesn't matter how many times i've pumped, I still leak around it after only 2-300ml. I wish I could get a good 500ml up there because I think that's the only way i'll be able to stay accident-free for a couple of days.

Edlee, what do you mean "the amount of inflation is reduced making the balloon smaller"? Does the balloon actually shrink without manually deflating it?
So when you do it, does the water not all come out at once? I'd like it to be like this for me - i'd be quite happy to take a book to the loo with me, but I don't even have enough time to even open a book, let alone read it

hi,
can I also ask if anyone has any trouble with yellow/brown water coming back down the tube when the water is in
I have to start using the irrigation while lying on the floor and stay there for a while to see if the poo will soften but I have noticed this brown water going down the tube has anyone else experienced this maybe its the way the tube was lying is anyone else in the same situation

[Scorpio81]

I've had the brownish water going back down the tube too. I just worry that bacteria will grow there if it keeps happening, which isn't great for hygiene.

Once again, i'm sorry I can't help you with any answers, i'm just as in the dark about it all!

[edlee]

I can't tell from here Scorpio,,, can't see how you're doing it,,, maybe if you posted a video???? I don't know what simon would say, tho. My best guess is it's got to do with positioning. The farther you can lean back,, the straighter the "plumbing" . You might also try inflating the cath before inserting,, just to get an idea about how big it really gets. I use only two squeezes,, as a third invariably causes bursting. I'm guessing that our "squeezes aren't the same.

And,, yes,, if the pressure inside you is greater than the pressure inside the ballon,, it will get smaller. Peristalsiss is what squeezes our poo out naturally,, and we can stimulate it's occurring by a lot of things,, digital stimulation,, suppositories,,, or with our peristeen. When it happens,,, pressure tries to push the balloon out with all the rest.

Eimear,,, sure,, that yellow/brown is backflow. When the pressure above the cath is greater than the pressure in the bag,, there is only one way things can flow. I usually leave the selector on water, and watch the bag to make sure there is still enough pressure to brevent backflow. I just give it an extra squeeze if needed. If I get any backflow,, I make sure to pump more water through after the cath is out,, to make sure everything is clean.

As for the bacteria,,,,, it was growing when it was inside of you,,,, didn't kill you there. If you are still worried,, you might try about a rwenty to one mixture of alcohol pumped through the tubing,, followed by plain water, to remove any residual alcohol that might be left.
ed

[eimear]

edlee, on 18 August 2011 - 06:14 PM, said:

I can't tell from here Scorpio,,, can't see how you're doing it,,, maybe if you posted a video???? I don't know what simon would say, tho. My best guess is it's got to do with positioning. The farther you can lean back,, the straighter the "plumbing" . You might also try inflating the cath before inserting,, just to get an idea about how big it really gets. I use only two squeezes,, as a third invariably causes bursting. I'm guessing that our "squeezes aren't the same.

And,, yes,, if the pressure inside you is greater than the pressure inside the ballon,, it will get smaller. Peristalsiss is what squeezes our poo out naturally,, and we can stimulate it's occurring by a lot of things,, digital stimulation,, suppositories,,, or with our peristeen. When it happens,,, pressure tries to push the balloon out with all the rest.

Eimear,,, sure,, that yellow/brown is backflow. When the pressure above the cath is greater than the pressure in the bag,, there is only one way things can flow. I usually leave the selector on water, and watch the bag to make sure there is still enough pressure to brevent backflow. I just give it an extra squeeze if needed. If I get any backflow,, I make sure to pump more water through after the cath is out,, to make sure everything is clean.

As for the bacteria,,,,, it was growing when it was inside of you,,,, didn't kill you there. If you are still worried,, you might try about a rwenty to one mixture of alcohol pumped through the tubing,, followed by plain water, to remove any residual alcohol that might be left.
ed

edlee
does that mean that if there is not enough water left in the bag I will get backflow?
it only happens when I stop pumping the water up
because the nurse said to only put 400 ml up then stop and wait a few minutes before taking the catheter out thats when I get the backflow
do you know if I can stop this or is that what is supposed to happen