Sharon, all I can say is sorry you have to put up with all these setbacks... What do you think has happened as a gut feeling?

I know surgery is the last option, but, what you're describing is going to tire you out. I know you're a strong person, most definately a strong person, and can put up with a lot more than the average person, but that's not sounding good.

I'll wish some positive thoughts for you, that's all i've got.

Ad

Sorry to hear this...since you have so many chunks that you need to keep clearing the tube, perhaps there chunks are getting stuck at the inner end of the valve and holding it open after you remove the tube...

john

Interesting theory John. What do you think Sharon? Although I know pretty much how the valve works. I've never seen it in action, so can't say if that's possible or impossible. But sure seems possible from my limited knowledge. Hmmm

Ad

Good throught but sadly...no...this leakage goes on over time...always when I pull out the tube...been this way for 3+yrs (that is why I spoke with Dr C about having the valve fixed but it is Major Surgery and I really don't want any more)...we have yet to come up with a way to fix it through endoscopy...I am holding out. Would love to convince Dr C and my French Surgeon to collaborate on a new procedure to fix slipped valves without opening up...Still in the 'wish' stages...
Just freaks me out when it happens because it reminds me of the situation that I am in...
And yes, the fact that I am constantly intubating and pulling out the tube is probably causing an irritation and aggravating it.
Sharon

Thanks Josh, but at the moment there is no choice for me whatsoever...I cannot afford to fly to the States (or even Canada) for surgery anymore...I am more than broke...(broke would be an improvement!) so it isn't happening. I have 100% coverage here but I lost my last suit with my insurance for coverage of ER surgey back home. My only hope would be to have him fly here and I cannot even afford his fees let alone airfare/expenses!
My surgeon does not want to touch me or to have anyone else do it until it is an absolute urgency...for now I will accept the occasional leakage etc..., because that is the tradeoff.
After 19 surgeries in 12yrs I think that I am about ready for at least 1 yr surgery free.
Sharon

Hi Sharon,
You say this type of leakage has happened in the past & is ongoing. Are there periods when everything seems to go back to normal? - Dixie

Yes and no Dixie...at first it was 'positional' meaning if I was overfull and I crouched down (meaning that my pouched was being pushed 'up' by my basin/organs) then I would leak. Dr C thought that because it is sitting So low that when it is pushed up it pops the valve open.
Next is the fact that my valve isn't strait and has that Indentation in the canal (where my tube kept hitting it when my pouch was twisted up into the hernia)...it has caused a shortening in one side of the vavle and thirdly I hooked &ripped some staples very soon out and the valve is not a closed tube but open up like a flower.
All of that together means that I am walking a type rope...
My diet effects it too...if I eat certain foods (soya protien products) or take certain meds (Alli, the fat absorber) my valve leaks. So I avoid them...But I am on fruits, veggies, meats and my pouch is very, very unhappy today...could be something totally different like a stomach virus and my pouch is paying for it. It feels 'pouchy' kind of like pouchitis but I know that it isn't.
I just hope that it is inflamation and it will go away in a few days.
Sharon

Sharon, every time I read one of your posts I try and think what advice can I offer that I think might help. You seem to have tried so many strategies. You keep getting tested!
Reading this, however, I think I would give up the veggies and (raw) fruits. I would definitely be eating fish and chicken, some rice and potato and be drinking lots of fluids (some grape juice with meals) and then whatever works for you.If dairy isn't good for you stay away from that and I suggest that because of the gas you mention.
I would go to a bland diet pretty much. But, our pouches are all different.

Thanks Less,
I have been on exactly that for 4 weeks and just came off of it because my pouch was feeling too 'heavy'...too much carb fills it and I cannot seem to empty it well (badly positioned with a bit of a twist)...I tried to go back onto the diet that I ate with success for 20+yrs: animal protiens, fruits/veggies and 1 day a week carbs. It worked great...now my body is kicking me from the inside.
Been faint for 2 days, slid to the floor on Sunday (hubby was shocked) and feel like my arms and legs weight a ton...winded when I climb up to bed. Probably a bug. This is not me. So it must be something that I picked up and my pouch hates it! But yes, I am going to severely cut down on the fruits/veggies and go back to my soups instead...They are much more pouch friendly!
Sharon

Sharon, have you tried leaving the tube in place for a couple of weeks? Then just remove the cork every 4 hours or so to empty?

Bodoni,
If I leave the tube in, I leak around the tube (!). The valve is damaged in such a way that the tube is not held in tightly so if it plugs a bit or I move around it just pours out around it.
Sharon

No news is good news right?
Seriously though, have you had any improvement sharon? /crosses fingers

Adroen,
The flu or whatever it was is finally over (I gave it to my hubby!) so at least I am not having all of those horrible symptoms...I got myself back on track by eating....hot pepper spice....yup, does it every time for me. (not reccomending this to anyone else!)...hot chili peppers are a well known for their anti-bacterial properties...When I crave them I know that something is up. I had rice with hot pepper sauce 2 days in a row and by day 3 it was over...leaking much less, just little dribbles now but it always freaks me out when it happens...it reminds me that my pouch is not 'fine' and that I am walking a very fine line between health and not health....scary stuff that I prefer to pretend is not real.
I had 2 days where everytime that I stood up my legs felt like rubber and my arms were too heavy to hold up...probably dehydration.
Am fine now. Thanks for asking. How are you doing?
Sharon