I’m sorry for going anon but it’s not the thing I feel confident about. I am male and men aren’t confident talking about things like this.
Anyway here goes :- I have SPMS and have been self catheterisating for many years now and am coping well with that. I have been experiencing bowl problems as well now. I have tried suppositories and have limited success and have now been shown how to use the peristeen anal irrigation-system. I am having real problems with it. If you know about the system you will be able to understand what I am going to type. I follow the instructions and after insertion I pumb the baloon up with about 5 presses on the pump and then pump the water in. Then just water starts to leak past the baloon and straight into the toilet.
Does anyone else have similar problems it’s starting to concern me. Should I pump the baloon more to seal the gap where the water leaks or just try and manage without using it? The instructions say 2-5 pumps of the baloon should I try more. I have spoken to the peridteen advisor on the phone, but no real luck. I am at my wits end with worry.
Thanks for reading this, i’m sorry it’s a bit graphic.
i use it and have experienced the leaking u describe several times. gentle wiggle of the catheter sometimes fixes it. maybe the balloon is too full of air-i have experienced the leaking if bowel is too full/ready to move.
several folk on here use peristeen,its good system once u are used to it. it did take several weeks for me to feel comfortable with it.
dont worry re being graphic-u explained the situation perfectly.
Thanks ellie, I am having so much trouble with it, I keep soaking the bathroom floor from the pipes. I will have to speak to the peristeen nurse again on Monday. I know where I’d like to shove it . To top it off I have now got a UTI to have ‘fun’ with.
Hi Bill, mmm sounds like you need to be shown again, how to use it.
When I asked my GP about it, and the district nurse, neither of them had heard of it which I found a bit surprising.
But GP said she didnt want me to have it, as it could cause further problems (her words). Her solution was to increase the movicol, then get the nurse to come and give me a small enema, if Ive not gone for 3 days. My last no-go time was 6 days and boy! was I in pain…took 2.5 hours to clear!
I hope you get sorted out. These problems are horrid, but no need to feel embarrassed with us…been there!!!
Firstly, you really were not that graphic and you dont need to be embarrassed at all on here about that sort of stuff! For me anyway, its bread and butter of life now. Fun!
I too have bladder and bowel problems. I self catheterise and find that very manageable but agree that the bowel issues can be more difficult to master!
I have been using a mixture of methods for the last year or so, including the peristeen anal irrigation system. I have read peoples reports who find it brilliant and use it routinely without problems, but I personally havnt found the same. Sometimes when I use it, it works amazingly… Other times I have problems with it, like the balloon bursts / Im unable to pump enough water to have an effect / water leaks out past the balloon (like you described). It has nearly driven me to tears at times to be honest, especially as I know it has the potential to work brilliantly! I think it requires patience to get the hang of and you might just need to try a few different things on different days. Definitely try pumping the balloon more, you could also try varying the temp of the water (I find that changes how it works). Also, im not sure but there may be different size catheter / balloon things?
Sorry youre having trouble though, I know exactly how it feels!!
Firstly, you really were not that graphic and you dont need to be embarrassed at all on here about that sort of stuff! For me anyway, its bread and butter of life now. Fun!
I too have bladder and bowel problems. I self catheterise and find that very manageable but agree that the bowel issues can be more difficult to master!
I have been using a mixture of methods for the last year or so, including the peristeen anal irrigation system. I have read peoples reports who find it brilliant and use it routinely without problems, but I personally havnt found the same. Sometimes when I use it, it works amazingly… Other times I have problems with it, like the balloon bursts / Im unable to pump enough water to have an effect / water leaks out past the balloon (like you described). It has nearly driven me to tears at times to be honest, especially as I know it has the potential to work brilliantly! I think it requires patience to get the hang of and you might just need to try a few different things on different days. Definitely try pumping the balloon more, you could also try varying the temp of the water (I find that changes how it works). Also, im not sure but there may be different size catheter / balloon things?
Sorry youre having trouble though, I know exactly how it feels!!
Hi, thanks for all the replies, I can take heart to know that I’m not alone. I just thought I would try and shed a little humour on the topic, I hope that’s OK.
For a while now I bought the occasional printed T shirt or polo shirt from a company in the US, put have now noticed they also have a UK base, I won’t name them as I’m not sure that I can do it on here.
Anyway they have a great printed T shirt with a stick like figure havine 2 arms up and legs wide apart in an X position, it gives feeling of incredible happiness with text below saying “” I Pooped Today! “”"
I feel like getting it and wearing whenever I have success. Hope you like
I have used this method for nearly two years now and find it a god send but it takes a while to get it right.
I find that if the water starts getting past the balloon it means one of two things. Firstly it could be that the balllon needs one more gentle pump or secondly your bowel needs to empty at that time so in that case release the balloon and let the water out into the loo along with the contents of the bowel. The only problem with putting more air into the balloon is the danger of it bursting but I have found the latest design of the catheters to be a bit more robust than the previous ones.
It is some what daunting to use at first and it took me about 6 months to use it confidently. Please ask for more help if you need it. You can message me if you want to, no problem.
I have used this method for nearly two years now and find it a god send but it takes a while to get it right.
I find that if the water starts getting past the balloon it means one of two things. Firstly it could be that the balllon needs one more gentle pump or secondly your bowel needs to empty at that time so in that case release the balloon and let the water out into the loo along with the contents of the bowel. The only problem with putting more air into the balloon is the danger of it bursting but I have found the latest design of the catheters to be a bit more robust than the previous ones.
It is some what daunting to use at first and it took me about 6 months to use it confidently. Please ask for more help if you need it. You can message me if you want to, no problem.
You might not have the water hot enough - and you might not be inserting the cath far enough in. l always hold onto it all the time l am pumping in the air then the water. Also l put the peristeen kit onto a stool as l think it works better when higher up. l sit on the loo throughout all of the ‘proceedings’ with my feet propped up on the stool. Usually, l take a cup of tea and a good book[50 shades] and try to KEEP CALM AND CARRY ON! - Allow yourself plenty of time - and it should all work to plan.
So don’t forget - the water may need to be much warmer - and you must push the cath in as far as poss. Holding on to it and keeping it in place will prevent the cath coming out or the balloon bursting because you have put too much air in. And make sure you are sitting on the loo all of the time!
lf none of this works - call the ‘bum nurse’ [well thats what l call her].
Hi Frances, hope your reply helps Bill. My oh my! It does sound difficult to use and get success from Peristeen.Hold the tube with one hand and pump the other bit…when I wipe my botty I have to hang on to a grabrail or I`d fall off the loo.
Your a trooper Frances, what with Peristeen and a SPC…a model for us all to aspire to!
I hope you’ve had some luck with Peristeen, it really has changed my life for the better. Probably a stupid question but are you turning the dial in the correct way? Sometimes I’ve put it on the wrong symbol and thought “what the hells going on” then realised I’ve still got it on red and not blue etc! It took me quite a few months to get it all right and now I use it every day and in 10 minutes it’s all done! I also put the bag up higher, usually leave it in the sink and then it seems to work better. Also my advisor said it was ok to quickly insert the catheter a second time if the first time didn’t produce much so that might help? I think it is all trial and error and do make sure the catheter is in enough but I personally wouldn’t do more than 5 squeezes of air-you and the balloon might explode!
Anyhow, don’t get disheartened and do practise, it honestly does make perfect or as perfect us MSers can be!!! I hope it works as it is worth the results in the end.
Good luck.
BFx
P.S. I ISC too so I feel like I have tubes in every orifice!!! It’s making sure you have the right ones in the right places that matters!!! All the best.
just wanted to say thanks for the tip re water being higher. dont know it made any difference to the procedure but i didnt struggle to see how much the water was going down. why didnt i think of it before?! duh!