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Piddlies and poops-?Peristeen Irrigation

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    Piddlies and poops-?Peristeen Irrigation

    I have decided that you need to be a bit of a detective to figure the bowel&bladder out after a SCI.
    Noirin had a consult with her urologist yesterday and I am kind of overawed with the changes he wants us to make in her care.
    Basically we do ICC and then glycerine suppository daily but we have had to do dig stim recently and she is getting numerous UTI's. He feels she is colonised and wants us to start cyproxin for 2 weeks them maintenance dose for 3 months and he then agrees that i can try d-mannose or mycrocyn ( I printed off the posts from here and gave it to him). He also wants us to change cath as we used a speedicath compact(coloplast) and turns out it is coming off market as it has inadequate length and may not completely empty bladder. Another issue is that he feels she may not be emptying bowel successfully and for this reason is suggesting peristeen irrigation. I have worries about AD with this as the pressure of the water in the bowel may irritate her and it is also a very dependent process. Another option given to us was anterograde washouts- in other words putting in a stoma and flushing out from on top. THis doesnt sit well with me at the minute ( remember she is only 7 andalready hates her disabled body). So basically I am looking for feedback from anyone using these options as I have learned so much from you all in the past, Thanks, Sonia.

    noirin's mum

    Hi, I'm new here so just finding my way around but I have an 8 year old little boy with spina bifida. We ISC every 3 hourly with a max fluid intake of 300mls and are currently waiting for urodynamics as he isnt tolerating oxybutinin and isnt old enough for artificial sphincter. He's agitated by a full bladder and we may look at botox depending on the results. If I could have any one part of his condition fixed it would be his bladder!!! but to be fair he is infection free and his bladder has continued to grow albeit shaped like a christmas tree.

    You mentioned coloplast are taking the speedicath compact off the market- the SpeediCath Compact female isnt being taken off the market. Its a great catheter and will still be available and it should empty the bladder of a 7 year old. If its a little too short they do a speedicath compact which is 2cm longer. Have they done a pre and post cath ultrasound at the hospital? every 6 months they do this for us before clinic and it confirms whether the bladder is empty of not.

    I have to say sorting out Christopher's bowels helped his bladder loads and also made him more aware of his bladder. He is L4/L5 lesion and has learned how his tummy feels when he needs a wee or poo now. he has no control or feeling as we know it but definitely knows the difference in tummy pain.

    We were told to expect ACE surgery at the age of 6 and I didnt feel it was right for us and shouted it very loudly. I found out about Peristeen when he was 5 and pushed for a trial because at that time it was very new and no children at our hospital were using it. Christopher was taught all about it in space rocket language, making it fun and within 48 hours we had our own kit. Christopher reminded me what to do to set it up and use it and shouted go go green when he knew he needed to go. We have never looked back. It has totally changed our lives. Their bowels tend to be sagging and lacking tone anyway because of the condition and the water comes out as soon as it goes in so there isnt any damage. We use it every night after tea before his bath, empty the bladder first and then peristeen and he is clean til the next time. no medication for bowels and no bunged up sickly constipation.

    If you want to chat about it, I would be happy to help. ACE wasnt right for us and medicines made him unwell, he just needs help getting it out and thats all peristeen does. He sits on the loo and I do help him but he can do it himself already.


      Hi Christine, THanks alot for the info and yes I have just found out that a longer speedicath is on the market but looks like as you have already experienced-it is the bowels that are causing the problems. Noirin too has alot of tummy pain and I have been putting it down to constipation but we have also learned that this can also be a broken leg- she was admitted to Er before christmas and was being treeated for constipation as xray showed up alot of faecal matter but we asked for xray as leg looked floppier than usual and turns out it had been broken for a week before.
      Am so glad to see irrigation works for you but am a little concerned that it is not used much in the states or in children but will give it a go when we have the training. It would be great to be off movicol-she hates it but is able to tolerate oxybutinin so no major concerns there, her urodynamics showed incomplete emptying so hopefully the irrigation is the answer. Going to Shriners in Phily again next week so will ask more questions then.
      Thankyou so much for your help and there are such similarities with children with Spina bifida and most of Noirin's wheelchair group have SB as there is such a high incidence here. Looks like he is in excellent hands with you, keep up the good work and take care, Sonia.



        I am so pleased you have an appointment next week. Hopefully if you need the longer catheter you can get that easily. I get so frustrated when we are given conflicting information. It's hard enough caring day to day and having something as simple as changing a product is another problem to sort. I have to say Coloplast have a great website and it's kept up to date with changes. If I'm ever unsure I give them a call rather than worry .

        If u need any tips or tricks once you start peristeen just email me. We were the first to try it where we are and then a few more started and we swooped numbers to help each other . We just kept tweaking water volumes and pumps to inflate until we found what worked based on the guidelines. I hated movicol and we find peristeen works better with harder poo .

        Good luck and let me know how you get on. We have residual volume in the bladder but after 8 years of isc I now get every last drop out for him. You sound like an amazing mum
        Last edited by Christine+2; 12 Apr 2011, 8:44 PM. Reason: Spelling