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So I had 'lap' pouch surgery to put the pouch back up on the wall exactly a week ago. Near miracle, the horrible lower back/hip/sacroilac pain is all but gone. Not counting the 'surgical pain' from all the work done in there and the 'pull' on the suture lines holding up the pouch, things aren't so bad.
So when I put the tube in and it finally went in strait after all these years, I didn't think much about the 'hitch' or hook that I felt pulling the tube out. When it happened again I wrote it off to swelling (of the valve).
But I just intubated and the one of the holes of the tube got hooked deep in the valve and wouldn't let go. It took a couple of yanks and a bit of finessing to finally get it to let go.
I remembered that this was a problem I had had before the pouch dropped. When they rebuilt the valve, a couple of staples popped out early on and the valve opened up like a trumpet. Somehow the holes get hooked on part of it and 'bite'.
I guess that there is no perfect cure. There is always a trade-off.
Now the valve is hurting and bleeding because I hooked it.
Never a dull moment.
Sharon
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Its an old problem related to the old valve surgery that became mute when the pouch slipped down because the valve was no longer facing strait in but upward and therefore somehow avoided the problem...now that I am intubating strait in again I am hooking on it...it feels like something is sticking out or down from the base of the valve (kind of like the thingy that hangs down at the back of your throat) and gets caught in the flute holes...
I am wondering if I try using a different sort of tube if it won't make the difference.
For now, my Canadian surgeon is out of town and unreachable and my French one who just did the surgery is out of town.
I am on my own to experiment on types of tubes and reducing my input and its consistency in order to avoid irritation...I really hurt myself with the last tug...kind of bleeding a lot but that is more due to the heprin than the damage done I suspect...but I did give myself a good fright!
This roller-coaster is not good for my adrenaline!
Sharon
Thanks Beckysmom,
I have about 30 different tubes in various stages of hardening, age, curve and diameter (this sounds a bit .... well, you know)...I am using an old one that I used to use post op...much smaller, about a 26 instead of a 32 so I need to keep my input really soft and output liquidy.
The holes are small so they are not hooking and the angle isn't hitting anything...this pouch is such a 'learning in progress' game that I never know what is waiting for me every time that I intubate.
It can be scary because I honestly freak out in public places, at work etc when things don't go as expected and I am stuck in a stall with no running water (this is France).
Even though I love my job, by next year I am going to have to cut back my hours and limit my companies because it is just too much for me as it stands.
Even after this sugery (which I kind of put all of my hopes into) I am not Pouch Perfect.
I get my hopes up every single time, I truely believe that I will be 'fixed' after each surgery and then end up disappointed...there is alway something that brings another problem with it.
Its a learning curve.
I was dreaming of finally getting back to my bucket list...I was putting off all of the trips on my list because of my pouch situation...and thought that after this surgery I could go back to it...have to wait and see now.
Scopes will only show that there is a divit in the valve and a slight trumpetting at the end and the holes hook on them...only valve surgery will change that I if possible I will never have to go through that again...live with it and adapt...my only choice.
Let's see if I can find some other more comfortable tubes...
Merry X-mass to one and all, happy holidays, season's greetings and be healthy.
Sharon
I would not vote for full blown pouch/valve surgery unless the whole thing was compromised...it is not a surgery for wimps...nor is J pouch but this one kicks my butt every time.
I think that with a bit of imagination and luck I can live with this blip on the radar...
Not interested in spending another night in a hospital bed...Need a break from sick.
I think for what it is costing me I would have more fun in a 5 star hotel on the other side of the earth!
Now back to that darn bucket list!
Wishing you all a healthy and happy year end and wonderful 2015!
Sharon
I am taking my miracles as they come.
I was able to walk around the park yesterday, go to the market (hubby met me to get the buggy and drag the heavy stuff home) and make dinner.
That's the first time that I was able to do so much in one day.
I paid a heavy price last night...couldn't sleep from the pain. Back, belly etc. I had to take a tramadol but it took hours to kick in. I finally fell asleep around 2am...and woke up near 11am...first time ever sleeping that late.
Keeps reminding me that I am an over-achiever and do not know how to say no.
Today I have been glued to the sofa...rest only.
1 step forward, 2 back!
Sharon
It's sad you had to wait so long for the surgery and are now facing an old problem made new again Frowner Don't you still have some recovery time left before work starts again? One of the major problems I have is accepting that things are about as good as they are going to get. You sound past the acceptance hurdle as you've been there and here before.

You are on my bucket list as I am determined to make it to Paris before I kick it. You are one of the first sights I want to see kiddo!

Happy New Year!!!!!!!!!!
Smiler That would be lovely...
I have had a lifetime of getting used to my limitations and looking for alternate solutions to every pouch problem that I have ever had.
Modifying my eating habits, clothing and other things...Limiting my outtings, travel and entertainment options to times and places that are both me and pouch friendly.
You sort of face the hurtles and move foreward.
It is much more difficult to get others to go along with your limitations especially those who do not understand what you are dealing with.
Better is good. But nothing is permanent when it comes to my health and pouch. It all has expiry dates. How long it will stay attached, how long my valve will remain funcitonal...
I was lucky to have a dad who was strict with me and never gave in to my pity, tears or weakness...he taught me to adapt or die...sort of like 'Scouts for dummies' but replace scouts with 'Pouches'.
My bucket list is getting longer by the minute. I don't suspect that I will ever be able to do it all but as long as I keep adding things to do and places to see it means that I am still and optimist. You have to be when you live our lives.
I hope that this new year brings a lot of joy, health and love to you and your family
Sharon

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