Hi everybody,
Just a little note to say that things are going more or less fine.
Not to be pesimistic but a realist, there are still some continuing issues including more difficulty intubating even after I fully empty my bladder...had to change to a stiffer and curved tube to get in yesterday morning..scared me to death...no leaking though other than when I intubate and I dribble out from under the tube when I irrigate...
I have put on a couple of pounds (5 ) so that may be it too...then again I got punched in the stomach twice while getting beat up by a really nasty now ex-tenant...10 days ago...
Yes my worst nightmare came true...I got punched full fisted in the gut( it was a woman)...both the french and the Canadian dr.s say no, it shouldn't be the problem but I am being vigilant anyway...
It might be muscle structure or fat but I am starting to be more careful and prudent...I was getting too comfortable for a while and this may force me to take it easy again..
So for now...I wait with baited breath
Sharon

I am glad to hear that you are progressing nicely. Many of us are rooting for you.
May I suggest that you let your husband deal with nasty tenants in the future.
Continue to improve and stay well,
Larry

Thanks Larry,
I know that a lot of you out there have been rooting for me and I thank you all...here, I am still concerned about this intubation problem/difficulty. It is usually when full as in the morning when I wake up; the valve seems to be pushed flat up against the pouch (is that possible?)and so I can not get the strait tube in, it buckles...not good. And forcing the curved one in reminds me way too much of some rather recent problems when it all fell apart...When I am 'pushing' to empty the pouch out I feel something unusual, a sort of muscle jump or sliding movement against the valve that I have never had before like a ring of muscle pushing the wrong way(lots of stuff is new this time round)it is not painful but uncomfortable and a bit scary...
So, no I am far from sure yet that it is all working properly but am really hoping that it all works out in the end...
Sharon

Sharon
I'm sure this is not want you want to hear, But I would try it in this situation for at least one or two weeks to see if it helps:
Get up during the night and intubate. This may take the pressure off in the morning and make the morning intubate process easier.

Not everything is a medical 'fix-it'. Sometimes..it's an adjustment like this that may work.
Leslie

Thanks Les,
Yes, I am already doing so naturally...I wake up automatically after 4-5 hours of sleep or the time it takes to digest and empty...anywhere around 5 am or sometimes I try to stay up extra late to be able to sleep in a bit longer (defeats the purpose, no?), anyway, as you said it is more mechanics than surgical...
Had a really scary incident the other day, I couldn't get the tube in strait, It felt like the valve had flopped over and then when I pulled it out the gas inside rushed out on its own! Scared the s__t out of me..litterally!
All is well again so I am back to 'normal' for now which means still scared but trying to not show it to my family and friends....
Each day is a challenge but I am try to trust my body....This closing up of my office and moving out has taxed me physically and split my scar again...if the outside is still not healed then is the inside still not healed as well? Probably, which means that I had better stop carrying boxes of books around
So, life goes on and I do too...thanks for all of your support...without all of you I would be lost.
Sharon

Sharon,

How is your K-pouch coming along? Does it ever leak at all? Can you get the tube in okay? Hope all is well!

John

Hi John,
Thanks for asking...
Well I am having a strange phenomena going on...there is a thick ring developing around the stoma. It has almost come full circle. It is thickening under the skin as if someone placed a thick plastic ring there. It is stiff and feels funny but does not hurt. I do not know what it is or where it comes from or how but it is 'progressing'.
As for the leakage I only have occasional driping other than the times when I try to intubate and the tube doesn't want to go in right and then I feel as if I flop the valve over or push it to the side. When I remove the tube to reposition it the valve is blocked open and air gushes out (or whatever else is there!)It lasts a few seconds but it is enough to scare me to death.
On Monday morning I woke up and could not get the tube in at all. I finally gave up and changed to a stiffer tube. (this has happend 4 or 5 times but not this difficult this time round)It got in but the direction seems to have moved north and west again. If it stays that way I am fine but I still live in fear that the pouch is twisting again.
The severe hip pain comes and goes and may just be related to the positon of the pouch...too low.
On the bright side, the wound is finally closed ( not too soon!) but I am a mess physically.
Not so hot mentally this week either. Scared about this valve trouble.
So, life goes on and I keep hoping that this time it will all be fine. What are the oddddddss?
Sharon