Hi Claire,

I am so sorry for all of the complications and leakage...it is terribly frustrating and discouraging after going through major surgery. 

I have been through the hoops with the same problem but it was not always for the same reason.

You seem to have a twisted or crooked valve...the only advice that I can give is for you to keep the cath in 24/7 for up to 30 days and then just at night for another month.  If it works, fine, if not the need to fix the problem.  

As far as possible causes:

1. A valve twist due to the way it healed. See above solution. ..or eventually surgery to straighten the valve out. 

2. A peristomal hernia (a hernia close to the stoms) that weakens the muscles supporting the pouch and stoma causing either or both to twist or turn. Needs surgery to fix but can be done throughlaporoscopy if the surgeon knows how. This might be causing the feeling of hitting a dead-end with your cath. 

3. The pouch has slipped or fallen totally or partially off of the wall. If it is hanging sideways or twisty then you will not be able to find the trajectory into you valve. It requires rattachement surgery but it can also be done laporoscopically.

Not all of the above problems can be seen during a scope, contrast study (you need them to take the pictures with you on your  side, back, sitting and standing) or cat scan. 

I have had all 3 complications at different times and almost never had them show up on x-ray.  

When you intubate and hit the side of your valve swells and makes it harder to get the tube in, you May get blood back (not to worry)...you need to try using a urinary cath, they are smaller and straiter. Also flexible silicon 24's work, you may need to lay flat in the tub, bend or stretch to find the right direction. 

Keep us posted on your progress or pm me for more suggeztions.

Sharon 

Thank you for your very thorough reply Sharon!

Yesterday I had a lot of leakage again, while on busy public transport! That was a challenge. I did have an unsuccessful intubation earlier that day, and I might have eaten some food with a small amount of spice but I'm not sure. Back to IDC + bag combo till it settles down. Today I'm having some abdominal pain/cramping.

For indwelling, I'm using a 24fr Foley catheter, regular rubbery type. A silicone catheter is a good idea, as it seems these ones are not really the best for long term use. I spigot it, rather than using a leg bag. It's a big headache trying to empty through this catheter as the holes are so tiny. I'm irrigating lots and aspirating which helps, but I'm not sure if aspirating is okay to do with a k pouch.

I did have a feeling I may have a hernia, as I have a small bump, above/around the stoma. Surgeon is going to check next week but did say that he didn't see on the CT scan.

De Lune,

So sorry a out the leakage, I know exactly how traumatic it can be.

The spigot is great buy you need a bigger tube in there and one that is much stiffer than a Foley or it won't be able to straighten out you valve in any way. I like the 28 and 30 for size. They are still soft enough not to hurt you but have much bigger flute holes for ease of emptying. 

Yes, you can irrigate but be careful with aspirating, do it slowly and very gently and once you feel the syringe resisting the pull-back, stop, re-push the fluid in (it sort of gives you a swishing inside that loosens stuff up in there)...you can repeat that numerous times until you feel cleared out.

Your pouch sounds as if it is twisted up too...mine was literally caught up in my hernia (we saw it on the CT scan and when I sent the digital files to Dr C, back home, he left me the most terrifying message of my life...told me to find him an o.r. because he was on his way (!) And not to move until he got here.

He flew in, rebuilt my pouch, closed the hernia and stayed for the weekend...my french surgeon was a God for cooperating, giving him priveledges and doing the follow up. 

Since then I have had other hernias and he is now able to fix them on his own through laporoscopy... (yay)

If it turns out to be a hernia and your surgeon is interested I could sent him the info on the laproscpic repairs.

When I had to keep my cath indwelling for months I gave up on the belt/flange system and started using colloidal patches to hold the cath in...it was so much more comfortable and easy to wear out. You stick one down on clean, dry skin around the stoma, (cut a key-hole into it first for the tube to pass through) then place the tube comfortably in, wrap the base with gauze, and put a 2nd colloidal patch over the 1st 1/3 of the tube...stick it down facing right and slightly downwards (aim well!) And plug the tube.

I got to where I could hold it in place that way for a week at a time without changing the patch (just the gauze)...it was flat against my body, comfortable and it didn't burn my skin like tape.

Sharon

Sounds absolutely Frighteninng. So sorry for what you are going through. 

I agree that a 30 Fr is much better.  For me, even the 28 didn't have enough structure to insert properly.  It would flop over.  And the holes are too small. 

Just a thought but might you consider getting a second opinion from a different hospital system?  Where are you going now?  Keep us posted. Janet

Has anyone heard of the NuVal...a device  to use in place and may help control leakage? Someone from cir.com mentioned it....but I can't seem to find any info.

Not sure if I have heard of NuVal but there is a company called Ostomycure that has a really cool implant that is a continent valve...they use it for normal ostomies and for people about to have them done but they can/could be adapted to us as well if I am not mistaken.

http://ostomycure.com/

You might want to check it out.

Sharon