Alexander,
I am so sorry that this is happening...I do not know if a slipped valve can be 'fixed' by an indwelling catheter but it couldn't hurt it...there is always a chance that it will scar in somewhat and allow you to have a slightly more functional valve...here's hoping...
Keep us posted on how you are doing.
Sharon

Hi Alex,

I've read your post before - you had your surgery done at Oxford under Prof Mortensen - me too.
I'm having problems too.
Mainly trying to get the cath in.
My surgery was beginning of July, so still recovering.
I've an indwelling cath and on cipro antibiotics as stool is very runny but then go very thick in the space of a few hours.
Not sure if it's a slipped valve, have been assured its just movement due to healing process.
I've the usual bag and baseplate, as I did just after op, the usual 2 weeks.
One thing when you are in hospital but another when you've 12 kittens 8 cats and 2 kids to look after, so not happy at the moment.
I'm resting my valve as its sort where I've tried too many times to try and intubate.
Again, I'm not sure over the slipped valve.
Have you called the stoma nurses at the JR. Frans on leave at the mo but Jo is there, she can help.

Hope it's sorts out for you soon :-)
Rachel

Thanks both. I have spoken with the nurses at the JR. It is up and down for me but manageable without too much trouble. Don't want the hassle of an indwelling catheter for 3 weeks if it won't have much of an effect though.

Really sorry to hear about your condition Rachel. I also started having problems getting the tube in so Prof showed me how to use the bougie and I rely on that a lot.

It's not perfect but still a lot better than the ileostomy. I've had a rough ride since the op in Feb but getting used to the odd bump in the road.

Take care

Alex

A kpouch surgeon tried to tell me I had a slipped valve for a year. I never had one. Now I have no issues with it.

I was told to keep a catheter in for a week to straighten it out here and there. Not sure if it worked but can't hurt I guess to give it a break.

Hi Alexander,
I'm in exactly the same position as you. I'm also having problems at times trying to insert my catheter. I do finally manage to get it in after trying many angles. Can you please send me a link to a webpage about the "bougie" you use & also the Prof's instructions as to how to use it. Thank-you. - Dixie

You guys may try a different position when intubating. I intubate while standing up - right into the sink. Yep. Works for me. ( Oh, and I keep the sink very clean.)

Thanks Vanessa, I agree it can't hurt - just gets in the way! Good to know yours was not a slip after all. Some days mine is perfect and some days not easy at all.

Dixie here's a link to a bougie:
http://www.armstrongmedical.ne...s/intubating-stylets

The way it works is that you do the following:

- bend the curved 'walking stick' end to make it straight
- you may know that your valve path is curved so you may want to shape the bougie before using it. mine is kind of 'j' shaped.
- lubricate the curved end of the bougie
- insert the bougie into your stoma gently
- gently feel the path to the valve with the bougie
- apply light pressure to get the bougie into the pouch
- once you get it in to the pouch slide the catheter over the bougie until it too is in the pouch
- having done this, pull the bougie out of the other end of the catheter (can get messy!)
- and that's it

The same rules apply for the bougie as for catheters - you might need to assume various different positions and it might take some time to get it into the pouch. But given it is smaller and its flexible rigidity it is very handy and I use mine an awful lot.

I bought ten in a box and they last for a good while, probably as long as a catheter.

Thank you so much, Alexander, for the info on the bougie. Can I ask what size you use? - Dixie

I tried a bougie but didn't like it with it being so thin.
I'm trying a Faucher tube, its a lot softer, as I feel the medina cath is too rigid.
I've problems near the valve part.
sometimes it can take me 30-45 minutes before I get the cath in and sometimes 10 minutes.
I don't want to force it as I already feel sore.
I've some instillagel, to help numb the area too
I tried resting pouch with indwelling cath but its not practical and it made my stoma and insides very sore as base plate is not big enough to accommodate stoma size.
i tried ileo bag as a base plate and micropore tape to fix and in theory worked well but again the tube left inside my pouch for just 24 hours just aggrevated the problems.
I'll see how I go with this softer tube and let you all know.
My Oxford stoma nurse thinks it will be too soft but I feel the medina is just too hard on the valve part, as the resistance for the most part is not too bad, just when I get near the valve and then all of a sudden it just goes 'dink' and ouch!!. It's like smashing an egg with a hammer - if you know what I mean!!
Rach

Edee - Have you tried a Marlen catheter? It is the one with the bullet tip end. - Dixie

Hi Dixie, you can't get hold of them here in the UK :-(

Edee if you speak to Fran she might be able to help. One of the Oxford patients orders them in from the US and maybe she can get the details.

I've never heard of a Faucher but will check it out.

Dixie I use a Portex medium, which is 335mm long.

quote:

Portex medium

Have you got a link for that, so I can see please, Alexander.
I tried the Faucher and will have to either modify or avoid.
Too many holes, cath wouldn't go in past enough and so got hit by a tidal wave!! lolsss.
A lot kinder when it got to the valve though, so disappointing over that...
Pretty sure I asked Fran over the marlen and other softer caths but will ask again when she's back from leave on Monday.
So glad I'm not on drain tonight, chapped and sore inside, but I'm looking forward to midnight bed, 4am cath and 9am wake up. I can cope with that :-)

If anyone wants to try a bullet tip I can gladly ship them to you. I have a site that sells them for 20 dollars. In case they don't ship internationally.

Rachel

Here's the Portex medium bougie:

http://www.smiths-medical.com/...tubation-stylet.html

You might want to try a marlen catheter if Vanessa can help. I tried one but found it harder to empty but great for in-dwelling as it is so much more flexible than the medena.

It might be handy to have some on hand though, to add to my burgeoning collection of supplies

Instead of a flange why don't you tape the catheter directly in using a coloidal patch (good for the skin...it helps it heal so you do not irritate with it)....I just cut the patch about 2x3 inches,slit it halfway in and make a 'Y'cut, placed the cath into the pouch, taped it down under the patch with the end facing towards the right, then I plug the end of the cath with a green plug (they sell them) and taped it in...I had to be that way for about 3 months so that was the least combersom way to go about my life...I would then just unplug the cath into the bowl and empty the pouch out (after a while the end of the cath gets a bit stretched so I would tape the plug in for extra safty)...wipe and replug...I had to change the coloidal patch about every 3-5 days because it would start to unstick from the skin...you also need to keep a piece of gauze wraped around the base of the cath to catch all of the mucus that is generated by it. I used a strait cath for it but my other trick was to put the bougie into the pouch and tape it in...wrap the edge against the stoma with gauze (otherwise you can cut the stoma with it) and then leave it in permanently...it allowed me to not have to worry about finding my way into the pouch when intubating or damaging it any more than it already was...I ended up using "boondogle" to cover the bougie because it worked like a cheese slicer on m stoma after a while...so coating it with plastic made it less dangerous for the valve.
Sharon

Thanks Alexander and skn69.
I tried the faucher cath(soft gastro PVC tube)and there were too many holes in it and it made a right mess....not sure if I mentioned this or not in a different post?
Things seemed to calm down but now I feel I'm going backwards again.
I heard a gurgle fart noise, took the patch off and there was a good good amount of pooh and liquid.
An hour and half trying to intubate!.
There was poo everywhere but the valve would just NOT open.
I ended up lay in an empty bath tub in the end :-(
Have I slipped valve?
If I had a slipped valve then would there be pooh all of the time?
Why is it sometimes I can get access to the valve and sometimes it a pain in the backside.
Feeling very sore and disillusioned :-(((((
Have I asked this question before?

Edee,
There are a lot of possibilities other than a slipped valve...those that I have experience with are a slipped pouch: it detaches from the abdominal wall, the anchoring stitches crack or pop and the pouch litteraly is only held on by the stoma itself...when the pouch is full, its weight pulls it down which pulls at the valve and pops it open...and everything spills out...including gas. The fact that the pouch is pulling the valve downward or sideways means that it is difficult to find the direction in.
The 2nd is a hernia, often peristomal: the is a hernia (kind of a rip in the muscle) that can get bigger over time...if the hernia is close to where the stoma is then the muscle is not holding the stoma in place tightly enough and the valve loses its tightness. It can also cause the pouch to shift position as well and thus pull the valve off to a different trajectory.
3rd is pouch twist or torsion: when the pouch comes unanchored, partially or completely, then it can twist or roll and like twisting the neck of a baloon make the valve difficult to navigate or pop it open.
All of the above are easier to fix than a valve slippage because they can all be fixed through laporoscopic surgery (closed surgery through a few tiny holes in the abdome...that means that you will have a shorter hospital stay, a quicker recovery and less post op problems)...if it is a valve slippage they will have to open up the abdomen and that is full blown surgery.
It is very difficult to diagnosis the above problems...you need a good and understanding radiologist who is willing to inject the valve with a few drops of Opaq at a time (the contrast dye) and take pictures at each stage, then fill the pouch with it and take picture with you flat on your back, on your side (both) twisted, standing and sitting.
Hernias a very difficult to see and so is the torsion but I would suggest them doing full studies before heading off towards full blown surgery.
I hope that this helps.
Sharon

Hi Sharon,


I'm waiting for tests to come through now.
I really think its to do with my valve, hopefully not slipped but may need a dilatation there.
Also, I can drain lay down but no good stood up, so problems are positional.

Let you know how I got on.
Hope you are okay :-)

Rachel

Rachel,
Positional sounds a lot like it is the pouch that is turning or twisting or falling lower when you are standing or sitting and is in exactly the right positon when you are laying down...could mean that it is off of the wall (good news) because it can be reattached through laporoscopic surgery as opposed to open surgery if it is the valve...do not force your tube in, always use the least difficult position so as not to create any more inflamation than necessary...could also be a peristomal hernia (muscle split near the stoma)...
Hang in there and I hope that this comes to an easy resolution
Sharon

Hi Sharon,

Thanks Sharon,

I wondered that too...I mean why would it be fine to access lay down but not so stood up? Must be positional or valve....or knowing my luck both! lols...
Soon find out.

Rachel

One can lead to the other...if your pouch is unthethered (ananchored) then it can 'twist' the valve when you move around (I cannot lay on my left side, makes my pouch flop right over...and it hurts like crazy when it does)...if it is down it can pull on the valve and pop it open and cause sudden leakage that you might not have otherwise...I had both the pouch down and a hernia and it twisted up into the hernia (don't ask how, I do not know)...thet got me emergency surgery with my surgeon on the next flight out to here...so our pouches can do lots of tricks...you just need someone who knows them well and understands that not all problems require open surgery...some can be fixed through laporoscopy...
My first hernias etc were done under open surgery (uncatagoric failure...I didn't heal right) then once I found someone who was a specialist in laporoscopic surgery who was willing to team up with my k pouch surgeon they put together a surgery that fixed most everything (hernias, twists, pouch down) without opening me up...
They are both incredibly wonderful but near retierement (I am not so It worries me a lot).
Talk to your surgeon, find out what it is and what can be done and then discuss the how...you need to get better but not necessarily through open surgery.
Sharon

Hi Everyone, it's been 3 months post op and after quite an optimistic start it seems its all gone down hill. Well, ups and downs but mainly downs.
I had a pouchogram on Tuesday - where they inject dye via cath and pouch showed to be healthy and no problems. I inserted the cath myself - no problems and again an hour later - no problems. Then Wednesday it was more difficult to get in. It used to be where it would get stuck a 1/3 way in and Thursday morning it got stuck half way and I tried and tried from 4:30am until 10am to get it in but no way was it going it. It was like I'd hit a brick wall. In the end I had to go to hospital where a stoma nurse had to really force it in. there quite a bot of blood and I was told this was to be expected. I've got it indwelling now and it hurts like hell on the outside as there is a lot of oozing where indwelling cath is irritating stoma on the outside. I plan to take out on Monday as I just feel so sore on the outside.
I've asked my surgeons stoma nurse to look at the pouchogram x-rays again, just to see if they missed anything near the valve but then surely with the catheter in how will they know if there is swelling or adhesion's anyway from the x-rays. Why would it - all of a sudden after x-ray become impossible to intubate and why would the cath decide to stop half rather than the same old same old 1/3 way in?
I really tried to get catheter myslef and even took a bath to relax and yet it was going no where. i'm terrified of it happening again and even more so as I don't understand why it would happen as I'm so careful putting catheter in and I know I wasn't a light handed baby trying as even the stoma nurse in Macc had REALLY, REALLY push to get it in. do I need more tests or is this sort of set back normal for just 3 months post op. could the stoma nurse of damaged my pouch/valve by having to push so hard to get catheter in. she did look first to check direction with her little finger but for her to have to push so hard that it looked like there were little people using my stomach as a trampoline really worried me What are everyone else's thoughts on this please?. Thanks.