Help - Leak?

Hey alex i have been about 5 months with my new kpouch and i have started with the exact same problem. The clear fluid seems to be heavier in the last two weeks but the odd time brown stool has discolored it.And sometimes just like you some little chunks with it. I was afraid the valve was not closing properly.The best i can gather is i have been eating some food that do not break down and when i pull the catheter out my valve stays a little open because a piece of food gets stuck. Or the other theory is that when i pull the catheter out my valve closes and the stool stays in the canal and slowly comes out like the clear fluid does. I have a phone call out to the doctor too but he is away this week.

It is a mucus menbrain. Clear liquid is basically mucus produced by the body. It will come out, that is why we wear stoma covers like a kotex pad or nursing pad, etc.

I get usually colored thick mucus that spits up here and there, nothing that much, like a big boogers worth. If you want less liquid coming out you can try Zyrtec or one of those. It dries you up but you don't want to be that dry, it is supposed to have that coming out for it to properly function.

If I used the bullet tip catheter I don't usually get stool but if I use the catheter that is made for the pouch (3 holes, one in the tip) I get some stool. It is all normal though according to everyone. If it is coming out like a fountain of poop then I would be concerned.

Thanks, that's reassuring. I have been a bit ill over the past few days and wonder if that plays any part as well.
One other thing is that some air is escaping through the valve occasionally too as the stoma cap has been inflated twice.
The hospital said the valve could be inflamed and need a bit of a rest if I am having to reinsert the catheter often (I do like my veggies) so am going to try a soft diet for a week too. And I will check in with them again this week.

Well now I know there is definitely a leak. It was all fine this morning, with very little mucus and then this afternoon it seems to have leaked some stool. Very depressed. Does this always mean a slipped valve? The valve seems fine but something is clearly wrong. Pouchitis?

Pouchitis can cause issues. My valve is on a very accute angle and I swore it was slipped. One surgeon thinks it is slipped and another thinks adhesions just latched on to it.

I would ask your GI or surgeon to do a scope and take pictures of the valve as well as check for pouchitis. Air leaking can be a sign of a fistula.

Alexander,
So sorry for the problems that you are having...excessive mucous is not necessarily a sign of valve leakage...it can be directly linked to what you eat (milk products produce more mucous or other foods like spicey stuff or nuts) and how often you intubate (the more you intubate, the more you irritate the valve and the more mucous it produces...including if you have to take out your cath frequently during intubation to clear it of chunks and stuff...if you are leaking just a drop- a tablspoonful of stool regularly after intubation (about 1/2hr afterwards +/-) then you may have an indentation in your valve that is causing a pocket where stool accumulates and then leaks out with the mucous (I have had it for about 3yrs and it freaks me out every single time)...as long as the quantitiy stays about the same and does not increase, there is no pain and you do not start to loose air from the pouch too then maybe it is not serious...But if you get full blown leakages, (your pad soaked and dripping stool), valve farts or bubbles then you need an apt immediately with your surgeon.
The causes can be multiple:
A valve twist or slip that requires surgical correction.
A peristomal hernia that has loosened the grip of the muscle on your valve and needs repair but can be done through laporoscopy.
Your pouch has become unanchored from the abdominal wall (it is only held on by the stoma/valve plus a few sutures further up and those can come loose) and is twisting around in there, usually when full, and pulls open the valve to allow stuff out...again that would need a surgical fix but is doable with laporoscopic surgery.
You have a combination of those problems.
Every single problems starts with an opacification of the pouch with contrast study (they inject Opac, a contrast fluid, into your valve/pouch and take pictures to see how it sits, if there is damage and if you need a fix...the best results are when the radiologist starts by dripping just a few drops into the valve first, to see if it is strait or twisted, then into the pouch and then makes you stand up to see if it is hanging properly of has fallen...
Then you go to see your surgeon with the results!
Let us know how you are doing, please and if there is any severe pain, contact him without waiting.
Sharon

Thanks. I got it all checked out and it was fine in the end. It was odd because one day it was fine and the next I could not intubate and back and forth it went.

I learned a new trick to get the catheter in when it's problematic - the bougie. For those who don't know, it's a long piece of flexible wire they use to assist with tracheal stomas and the like. You thread that into the stoma and then when you can get that in (it is super thin) then you slide the catheter over the top and it goes in just fine.


I hear what you are saying about diet and I think that definitely played a part in the mucus production. I also had some air escape too when I had not intubated for a day. Maybe the nuts played a part in this and I do think the valve may have been inflamed from intubating and removing/inserting often to remove chunks from the catheter. Apparently this can stop it closing perfectly too sometimes. So I am chewing like mad again. I guess I fell back into old habits of bolting my food again.

I had a few tests, including a pouchogram. One issue with the hospital tests is that there are so few people who know how to interpret the data authoritively, but when Prof saw it he was reassuring. Once he did the pouchoscopy it was easy to see it was all clear, and they gave me a guided tour of it, where I saw the valve from below and so on. It was all good.

So I learned not to panic when there's a hiccup, some new trick to intubate, and to remember to chew and intubate carefully. All good lessons, as I was really worried I might need further surgery and am about to start a new job. Signed the contract and resigned from my hospital bed!

Thanks for all the information everyone.

Hi Rockyg,
Did you get ahold of Dr. Cohen & what did he say about your situation?
- Dixie

Alexander, are you afraid you might cut something using the thin wire to get into the opening of your pouch? Also, is it just used as a guidewire when you cannot find the opening as your valve is not fairly straight or what other purose does it fill?

I hope you have better luck, just to get to the place you need a kpouch means you have already been through alot!

It actually has a rubber covering and a soft rubber tip and is designed for tracheas so I am not worried about doing any damage.
You can bend it to any shape you need, for example if your valve angle is acute, and it will follow it.

Here is a link to one:
http://www.dsmedical.co.uk/intubation_stylet

Basically, if you cannot get the catheter in, you put the bougie in and feel your way around with it until you get it into the valve. It is about 5-10cm longer than the catheter.

So when you get the bougie in, you have half of it extending from the stoma, and you slide the catheter over the bougie from the outside, and it follows the path into the valve. As the valve is already open from the bougie, even if only every slightly, the catheter has a natural path and it goes in with very little resistance.

I have only had to use it twice and it worked a treat for me.

Hi Alexander,
I just took a look at the trachea tube link & might order one to have on hand for an emergency. What size do you use - small, medium or large? I notice one end is curved. I assume you put the straight end in, but as the other end is curved, how does our regular tube go over the curved end? (Sorry - stupid question!).
- Dixie

I don't know the exact size of mine, it's more than 30cm long though. The end is curved but that's not an issue. You just straighten it out and slot the catheter over. I will look up the length and details of mine when I get home and post it later or tomorrow.

Dixie,
If we are talking about the same thing then it isn't a tracea tube...it is a wire (about 2-4mm thick)and is semi-stiff but flexible...it is plastic covered (by some very slippery material)and you snake it along the canal to the valve until you pass it through...
I don't know if you remember but when my pouch/valve were at their worse between 2007-2009 I had a really bad problem and could no longer intubate on my own...I ended up in ER a couple of times in both Toronto and Paris and they used intervention radiology to find the direction...they used a wire(kind of like the one for an angioplasty because it had all of the gimicks at the end of it)and pushed it up and along until we found the opening...he then used my tube with the 3 holes (you need the one with the hole in the tip or it doesn't work)...and pushed it over the wire like a sleeve.
I kept it and used it often in Paris when I was in trouble before the big fix...at one point I left a wire (a real wire, I do not reccomend it!) in and covered it with boondogle (the plastic, coloured laces that kids used to make keychains with)which is hollow and protected my stoma from getting cut by the wire...I left it in for about 2 months until I could find a surgeon here and have surgery again..It was easier than keeping the tube in all of the time... it was also dangerous because I could have sliced my stoma in 2 with it (children please do not try this one at home)...
I keep one on me at all times when I travel, just in case but hope that I will never need to use it again....
Sharon