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Reasons for changing to a Colostomy? Using peristeen? Options · View
selocs
#1 Posted : Tuesday, July 23, 2013 3:51:11 PM
Rank: Advanced Member

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Joined: 12/26/2008
Posts: 484
Location: Nottingham
Hi All
I've read through most topics on this part of the Forum including some questions about what sort of colostomy & lots of discussions about Peristeen, but I guess, as always, my problem seems different, so any help would be gratefully received!

I'm 72, female & been T3/4 sci for 48 years. I've always used manual evacuation every evening usually about 2 hours after my main meal or later if out in evening but always before bed. After a necessary op on my left elbow 3 years ago my GP recomended a strong pain killer (2 x co-codomol 500mg tabs at night) & advised senna tablets as well to prevent constipation. WEll it did & still does but over the years it is becoming more and more difficult to get the faeces out through my anus. And I'm wondering what other way I can empty my bowels.

Many of you have had a colostomy for various reasons, but not apparently for a 'tight' anus. Has anyone else had this? Should I be trying Peristeen first? If so, please talk me through how it works e.g. why does the length of time it takes to work vary so much? I already drink about 2 litres of tap water every day as well as about another 2 litres of tea or coffee. (I don't drink alcoholic drinks). Is this too much? I keep to that amount of liquid as when I had to change to a supra pubic catheter (from nothing) I was told to drink lots for the catheter / kidneys. Does peristeent have to be 'done' sitting on the toilet? (which I find am also finding more & more difficult getting on & off - old age probably & weaker arms - though I do have a hoist & dress sling). I would prefer to empty my bowels without getting on the toilet but in the bathroom / shower space. Am I being too fussy & wanting the impossible??

I have yearly check ups with my spinal unit so it would not be difficult to discuss with them about colostomy or other methods. But I would rather have the opinions of those of you who have been through the colostomy / peristeen / other bowel care methods before talking to the 'professionals'!!

Many thanks for any comments, advice, info, etc. etc.
BatOutOfUll
#2 Posted : Wednesday, July 24, 2013 2:44:23 AM
Rank: Advanced Member

Groups: Member

Joined: 4/13/2013
Posts: 31
Location: Beverley
You don't have to go down the Peristeen route.

Qufoa Mini Pump is less invasive. You can get a 'Bed' version but I'm not sure where you 'go' if you use this as with all these pumps, what goes up must come down along with your bowel contents.

I have faecal incontinence and can't even keep an anal plug in as it just falls out, so for me to be flushed out (every other day) is great and unlike Peristeen I dont have to insert an Catheter and inflate it and try and keep it in. Because Qufora is like a 'Turkey Baster' You hold it in yourself. I have the other problem and am taking Codine to try and harden things up so that I can 'feel' what I pass. (at the moment everything drops out and I'm unaware)

15 mins on the loo every other day is all it takes. If I don't feel I've got everything, I re-fill and repeat.

Link here to the Mini System I use (I'm 50)

http://www.mbh-internati...tion_mini-system_UK.pdf

Do you have a PA? If so it could be done over/into a Commode as long as you have a supply of warm water.

Don't wait for your regular appointment ask your Liaison Nurse if there is a Bowel Clinic you can come into where you will be shown the options.

There's nothing wrong with Peristeen but it does have a valve you switch over and back and if your hands are (like mine) playing up and wont grip it can be difficult to turn this Valve

Link to Peristeen System here:

http://www.coloplast.co....e%20Patient%20Guide.pdf

Hope this helps.

Much Love

Batty.

selocs
#3 Posted : Wednesday, July 24, 2013 5:40:29 PM
Rank: Advanced Member

Groups: Member

Joined: 12/26/2008
Posts: 484
Location: Nottingham
Thanks Batty for all that info. Hope you don't mind me asking for more details. You are welcome to contact me via my own email if you prefer - sylvia.coles77@btinternet.com.

Gues I'm being slow, but is your trouble having loose stools? Mine are hard lumps & that's why I have trouble getting them out as my anus won't 'open' wide enough. Does the pump you use (which sounds good) also 'open' the anus so making it easier to get hard stools out?

How do you reach your anus to insert the water part when on the toilet? Do you reach round behind you? If I did that I would have to bend right forward - which I do anyway. But I'm finding getting back upright difficult (it's the age thing again with loss of strength & loss of balance). So I was hoping to find something I can do from the front but I guess I have to accept some things are a no-go. I do have PAs but if possible would prefer not to get them involved - seems one more step away from independence.

I don't think my SIU has a bowel clinic but I will contact the liason nurses as nurses are usually more useful & practical!

Many thanks again for respnding so quickly & suggesting something I've never heard of.

Love Sylvia
tinkerbell
#4 Posted : Wednesday, July 24, 2013 6:32:19 PM
Rank: Advanced Member


Groups: Member

Joined: 2/19/2011
Posts: 261
Location: NE Scotland, UK
Hello,

I have sucessfully been using Peristeen for around 5 years.
It has saved me from having a colostomy which would have been my only other option!
The advantages outweigh the disadvantages by far:

Pros:

1) It saves a LOT of time compaired with Manual Evacuation
2) It is very easy to use
3) It is very effective - For me 99.9% of the time complete emptying
4) You don't need major surgery
5) You have a better body image: No ugly stoma, no infections, no smells, no undesirable noises, no worries about bag leaking, or discomfort with clothes, no skin problems
6) You have self confidence knowing that your bowel routine won't be a problem all day long and you are free to do other things
7) You only have to think about it once everyday or once every other day depending on your routine
8) The system is very easy to learn. You get full support from a Spinal Nurse or Bowel Continence advisor nurse and a very easy to understand DVD.
9) The system lasts around 3 months and then you can easily get another sent via a prescription compancy such as Charter Health who give you free disposable bags or local Pharmacy
10) It is very easy to use if you are away from home: I've used mine on holidays to Scotland, England, America and in my local hospital.
11) It takes only 10-15 minutes to carry out the routine
12) It comes in a discreet bag
13) You have complete peace of mind



Cons:

1) It may not work if you have severe constipation - avoid this by maintaining a high fibre healthy diet and drink plenty of fluid every day
2) Always keep a spare Peristeen just incase of any problems - This can be avoided by changing the Peristeen system routinely every 3 months
3) If you have an upset stomach, this may affect the way your bowel works and it may take a day or so to get back into routine
4) You may still need to use laxatives but this varies from person to person - I use x3 Movicol sachets daily


I would advise anyone trying Peristeen to speak to their Spinal Unit or Consultant and ask for a referal a Peristeen trained Nurse. You have to undergo a clinical evaluation to confirm your suitability. The dial on the system is quite large and can be used by people with limited hand function as long as you can squeeze 2 fingers together.
I would also advise that it does take a couple of attempts before becoming completely confident. Take you time to start with and follow the easy to read instructions for the first couple of times. You will find that it is really straight forward. In no time you will wonder how you ever managed without it!

This is a Coloplast Peristeen Information DVD: http://www.youtube.com/watch?v=l6sWaD6d2Sk

Finally,

Good Luck!
cherhyl
#5 Posted : Thursday, July 25, 2013 3:55:00 AM
Rank: Advanced Member

Groups: Member

Joined: 5/16/2012
Posts: 189
Location: devon
may i email you to... I never really had any support or education until i came on this board kinda wernt around in my time or if it was noone mentioned anything... different times then...

Are you incompletes... for i had my first peristeen go yesterday all went well with nurse but when the question form was being filled in i kinda felt sick and this feeling was getting stronger and if i pressed my finger on either side of external tum i reackon it would have made me vomit. honest not kidding then hour or so later had rumbling noices then when it settled i went out came back later and had results been a weird sensation day and a stuck sensation now (hence posting) Nurse mentioned a nerve near tum ? forgot what she called it now have you heard of it also... so havnt done perasteen today due to that but will later today after i chat to nurse person again..

mind you i ate a huge bar of chock plus antbotics/ penicilin last week also...

i had large boulders also which leads on to other stuff but i do stay active and carry on thanks for the links to. They kinda operate a lot also ive noticed...

this stuck sensation not too pleasent but it may erupt later maybe.... ta for your post feel better now.





selocs
#6 Posted : Thursday, July 25, 2013 5:03:25 PM
Rank: Advanced Member

Groups: Member

Joined: 12/26/2008
Posts: 484
Location: Nottingham
Many thanks to all of you for different ways of dealing with this. Seems as though we all have different methods. Part of my problem is I don't want to change!!

If any of you have other comments, advice, info, please feel free to email me direct as in my reply to BatOutOfUll. This is such a personal subject that even here where we all know what it's like might prefer to send info privately.

Cheryl - no, I'm complete at T3/4 so no feeling whatsoever apart from feeling bloated but that could be anywhere in my body!

TB - that's a lot to take in but thanks for detailed explanation of the 'other' side.

But you are all right - I need to make an appointmen with the SIU Liaison Nurses; just hope I can see the one I've known for years

Will keep you informed on how things go. But more comments welcome.
Sylvia
cherhyl
#7 Posted : Saturday, July 27, 2013 1:42:00 AM
Rank: Advanced Member

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Joined: 5/16/2012
Posts: 189
Location: devon
I was put on it locally never thought of contacting stoke man first...

well that stuck sensation finally moved from 5.10pm approx all night long it stayed put then approx 8.10pm the following day off to loo i went. phew...

does anyone eat liqorish or chew its root its quite fiberous and one stick root last for ages and has a taste of its own...

I dont fancy the idea of being on that perminent either, they must be other items to try but at mo so far so good.

does any bowel docs/nurse chat on here also like physios etc do...

will email...ta for info
tinkerbell
#8 Posted : Sunday, July 28, 2013 1:05:20 PM
Rank: Advanced Member


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Joined: 2/19/2011
Posts: 261
Location: NE Scotland, UK
cherhyl - are you getting enough fibre in your diet? and drinking plenty of water every day? I was amazed that drinking lots of water can really help things. I have a litre of water overnight and that really helps.

My SU is in Glasgow and patients can phone the liason nurses anytime for immediate advice. They are always joking that 99% of the calls are about bowels and bladder issues!

I know you asked what level I am - sorry for slow reply! Im L1 inc. my injury was in 2001.
BatOutOfUll
#9 Posted : Sunday, July 28, 2013 6:56:09 PM
Rank: Advanced Member

Groups: Member

Joined: 4/13/2013
Posts: 31
Location: Beverley
selocs wrote:
Thanks Batty for all that info. Hope you don't mind me asking for more details. You are welcome to contact me via my own email if you prefer - sylvia.coles77@btinternet.com.

Gues I'm being slow, but is your trouble having loose stools? Mine are hard lumps & that's why I have trouble getting them out as my anus won't 'open' wide enough. Does the pump you use (which sounds good) also 'open' the anus so making it easier to get hard stools out?

How do you reach your anus to insert the water part when on the toilet? Do you reach round behind you? If I did that I would have to bend right forward - which I do anyway. But I'm finding getting back upright difficult (it's the age thing again with loss of strength & loss of balance). So I was hoping to find something I can do from the front but I guess I have to accept some things are a no-go. I do have PAs but if possible would prefer not to get them involved - seems one more step away from independence.

I don't think my SIU has a bowel clinic but I will contact the liason nurses as nurses are usually more useful & practical!

Many thanks again for respnding so quickly & suggesting something I've never heard of.

Love Sylvia


I can't use Peristeen as I have no sphincter feeling and when I inflated the Catheter it still dropped out, so that's why I've gone down the Qufora route. Tinks seems to manage, but we all have our own routines

My stools are loose and just fall out :( but the pump system is for both hard and loose stools, it's like an old fashioned enema really that gets you clean for the day (I use mine every second day) it's really just 'flushing' you out with clean water, stool size shouldn't matter - the water breaks everything down!

I lean forward on the loo, but have rails to get me up again :) There's no real reason I can think of why you couldn't experiment with different angles and approach from the front? I've been told to lean back when doing ISC but I can't, I leaned forward before my SCI and can't get out of the habit so I've found an angle that suits me for both Bladder and Bowel :) (don't tell my Nurse!!!!)

Oh and both are available from Charter Healthcare. Most GPs give you a blank look if you try to get it prescribed. Your Nurse will fax them ahead of your first order so they know what to prescribe.

BTW if you can find your way around a forum and a PC, a pump that gives your quality of life will be a breeze!!!

Batty xx

cherhyl
#10 Posted : Wednesday, July 31, 2013 3:38:57 AM
Rank: Advanced Member

Groups: Member

Joined: 5/16/2012
Posts: 189
Location: devon
Im an L1 inc also now had my first scan and cat scan a few months ago, amazing machine wish i was in office bit with them to see all details of it. Do you still get the burns tink its like (pins and needles with added heat on every pin prick) I reakon thats the healing bit?

Im suppose to have high fibre but never got menu and i drink lots of water, diet coke and stopping my sugar intake due to weightwatchers menu now, only way i could think of ref healthy eating.

Well doing fine until that stuck sensation happens same old place so it may be near a nerve? for it gets stronger, if you know where the appendix are approx, its near that area but the opposite side of body, think it heads towards the pubic bone area on same side but left a little more. drives me daft but bearable until it passes. (will mention to nurse)

Kinda makes you wonder why it drops out and with others not so maybe there are other spincture muscles within the large intestine? (stuck sensation) Hence huge boulders, large sausages which needs cutting in half, to putty which is dreadful also

Different types over the years hence wondering if bowel doc could enlighten maybe...

In mums time they used to add soap to the water and it used to bubble yikes...

Im no doctor so lots of maybe s after watching embaresing bodies programme the mind kinda boggles.

hope that helps... can email each other through sia board also. take care











cherhyl
#11 Posted : Saturday, October 19, 2013 1:27:21 AM
Rank: Advanced Member

Groups: Member

Joined: 5/16/2012
Posts: 189
Location: devon
Im having problems with my email for some reason must contact comp person to find out why

How are you getting on selocs ?

Ive had some weired happenings that nerve or whatever has been agitated... the large boulders seem to desolve with the water so it may be useful to try just for that but kinda akward to find an option of keeping it inserted after the ballon inflate so i kinda hang on to it.... wondering how your getting on...
selocs
#12 Posted : Saturday, October 19, 2013 4:04:31 PM
Rank: Advanced Member

Groups: Member

Joined: 12/26/2008
Posts: 484
Location: Nottingham
Hi Chehryl
Thanks for asking, but oddly, ever since I started asking questions on here, my bowel routine (daily manual evacuation) has been working fine!! Don't know why, but as long as it works, I'm not worrying.

But my spinal unit has just started a special bowel clinic so I've signed up for that. Don't know when it will start but it will be good to talk to our specialist & experienced community nurses. Bound to learn something.

Sorry I can't help with your bowel problems but keep asking & someone will know.

Afraid I can't help with your computer either! I have found, via Google, a local computer repairer/ adviser who is great. Try looking for local people as several people now work from their homes & cover the local area.
cherhyl
#13 Posted : Sunday, October 20, 2013 2:33:19 AM
Rank: Advanced Member

Groups: Member

Joined: 5/16/2012
Posts: 189
Location: devon
man evac does work but only clears out the area you can reach not higher up i was told that years back from wherever....

I wonder if mine has i havnt heard of that, that would be great but the problem is when you get home to your area if they dont get the info... you may not get the items you require or you got one or two items then in my case naff all.

Only now im being taght a different meathod and the city hosp is ringing me up and i got called in to see how im doing and ive got the items to use and someone to contact now. peersteen been around for several years i heard... so as this board...

The computer person will sort it for im getting updated with the new gadgets around it will take me a while to fathem it out even thats changed rapidley....

thank you for the reply...
Dowser
#14 Posted : Friday, October 25, 2013 9:32:42 AM
Rank: Member

Groups: Member

Joined: 10/23/2013
Posts: 15
Location: Ooop north
Over several years I've been getting awful back pain. It's not muscular but comes from digestion.

I think it's trapped wind and usually starts under right shoulder blade. The pain is awful and I literally have to lie down and not move.

Amongst my SCI friends I'm the only one who suffers with this. I used to get it once or twice a year and now it's more like once or twice a month.

I haven't had it for about 6 weeks at the moment. Ssssh!

It's such a blessed relief.

I now take no medication at all. Not even pain killers for a headache.

I eat gluten free. Veg, protein and small amount of fruit.

I'm normal weight for me height of 5 ' 5 ins.

I use peristeen every other day. It takes me an hour!

I take vitamin supplements and have regular back massages or trips to osteopath.

A-Cahir-Man
#15 Posted : Sunday, October 27, 2013 7:30:08 PM
Rank: Newbie

Groups: Member

Joined: 10/27/2013
Posts: 3
Location: Oxon
Hi,

I have been doing the irrigation thing since 2008 and started with Peristeen but when I clocked the Advert in Forward about the Qufora cone system I tried it and it was way better than Peristeen with NO complicated dials turning it this way then back again, then back the other way as BatOutOfUll mentions in his post ...... also the first time a Peristeen Catheter Balloon went BANG! inside me it scared the 'living daylights' outa me! Then there was the onset of panic about internal damage and of course as always these things happen on a Friday night with nobody to call for a few days!

Just thought I would tell the forum about a new cone based system on the market called AquaFlush Quick System and a Compact System without a water reservoir if you only need a little water to get you going - this can be used with an extension tube so you don't have to lean forward so far to get it in: www.aquaflushmedical.com

It is on prescription and takes ease of use one step further! Whoever designed it must use the system as it has everything that used to be a hassle with the Qufora system sorted Applause

- A temperature strip (like you use on babies to take forehead temperature) on the water bag so no more guesstimating water temp or mucking about with thermometers

- Very easy to operate tap - one handed with twist action so don't need to steady tube with other hand as with pull down/up taps.

- Extension tubes

- Straps to anchor pump to your leg

- Hooks to hang the bag off any grab rail in the toilet or even your chair.

- A right angle connection on the cone so if you have a toilet like mine that hasn't got a deep pan your not going to touch the water in the loo whilst inserting cone.

- Finger holes on the cone so grip is not a problem.

- But the real stroke of genius is the cone that comes in a long glove - the sort vets use - probably too much info there, you can never un-know that now I've planted that idea in your head :-) So when you finish keep hold of the cone and turn the glove inside out over the cone which acts as a disposal bag for the cone - Brilliant!

- Last but far from least is the simple QUICK RELEASE ONE HANDED ATTACH/DETACH CONNECTOR on the cone (pulling the Qufora cone off the pump was always a struggle for me and if soiled bits went everywhere - YucK!). Also all connectors have one way valves so no dodgy fluid dripping out in the wrong direction as well as making it easy to prime.

Well worth a looksee!
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