Hi guys...on the ever continuing saga of 'the traveling K pouch' I am now dealing with leakage around the tube while intubating....both Gas and stuff...more and more of both, and more and more fequently
Don't know if it means anything at all...I don't remember it happening before all of the troubles began....Am I pulling too hard on the tube? Is the pouch too full? I know that this one does not empty the way the old one did..it always feels as if there is still stuff in it and I never seem to get 'relief'....
It may just be 'position' being that it is soooo lowww...
I always have to pee first to get the tube into the valve...it seems that bladder pressure pushes the pouch tight and then I can not get the tube in at all...Really Freaky
I flip out each time fearing that once the bladder is empty that I still won't be able to get it in....Some stoma pain too....it is tacked down so maybe it is pulling....
So many questions and fears this time round....I seem to have lost my innocence and naiveté on this time round...everything sends a jolt through me....it is only just 5 weeks post-op.....
So...not perfect yet! But working on it!!
Sharon

Sharon
Try having some hot GREEN tea a few times a day. Don't forget the grape juice with meals. The pouch hasn't expanded yet and Chris said it took almost 3 months before intubation got back to what he felt was like before. Still days where he has to maneuver more than others.
I know you will heal, time is the key.
Set a goal for independence day!
That's how long it will take.

Thanks Holly,
Well I do the prune juice every morning and various others throughout the day plus grape...but still it is the leaking around the tube that is somewhat worrying....as for the capacity...I know...I know..patience is a virtue...just because I feel like normal does not mean that I am there yet!
Just scared...with good reason...this is the last shot...
Hopefully it will be the best
sharon

Sharon,
When I first started intubating with this pouch, I observed that clear fluid was leaking from the stoma around the catheter. It has stopped. Maybe it is something that will resolve itself as the pouch matures and everything heals.

Thanks Les,
Well, it seems to be slowing down on the leakage although I still have it when I am very full...seem to be developing better capacity though...Working on not hurting any part of myself for now...but I am biting at the bit so to speak...dying to get back to a normal live but way too soon to be stupid!
Had a horrible nightmare last night...the stoma was starting to prolapse!!!it woke me up at 6am with a start and a cry and I have been paniced ever since...no time to start having premonitions!
I guess it just tell me and you how afraid I really must be inside.
I am so desperate for it to work this time....but will I ever again take being healthy for granted?
I doubt it.
Keep answering me...I need the human contact.
Sharon

Sharon,
We are old enough to know that there is nothing to fear but fear itself-right?
Fear is half the problem. Even as teens and you disobey, the fear of what will happen if you get caught is a killer. Then the relief when you don't get caught, all that worry for nothing!
Look at it like that.
Channel your energy(fear)to something bigger than you!
Easier to work with diversion.
I like helping others because I don't think about all my issues!

In order to make sure that my pouch is empty, I irrigate every time I intubate. Your pouch is small therefore you do not have to use a lot of water. This process helps to remove poop that would not come out with a dry intubation.

I do irrigate nearly every time except inthe morning after my coffee and prune juice breakfast!
Anything that was in me prior to that is OUT really fast!
No irrigation needed! Once a day and I am at least sure that I get a total clean out once a day....
No longer leaking much but another problem seems to be pointing its little head...
I am having valve/stoma pain and feel as if one side of the stoma is starting to pop out....like last summer....
Scaring me....slightly more each day...Will call Dr. B here in Paris and see if he can see me for a 6 week Post-op check up...could be nothing but I don't like it at all....
Shades of a peri-stomal hernia.....I am a little flipped out here...do not need any problems now....I am still not healed yet!
Sharon