I just had a full out leak. The valve opened up and dinner came out. I was very gassy.
My valve is half in and half out...in what they call an elbow. It looks like the valve jack-knifed in the canal...so obviously I have had problems intubating and getting the tube past the elbow, forcing open the valve when it doesn't want to. It also leaks around the tube a lot when I irrigate. Now it is leaking without the tube going in. It has happened before, especially post op...but now I am worried that the valve had deteriorated recently. Don't know what to think. I have one more abdominal reconstruction booked for Feb but it has nothing to do with the pouch really, more just abdomen. Now I am scared that the valve is going or that I have herniated again and that the abdomen is not holding.
I have a large 'lump' off of the main-line incision. Could be another perstomal hernia. It seems like it is the right place.
Is it time for me to start worrying agian?
sharon

Oh no Sharon, I'm so sorry to hear this!!
I wish I had some advice to give you, you've been through the ringer and know your body and pouch better than anyone. I pray you can get this resolved without more surgery

Hi Sharon,
Worried for you - how are you doing now - are you still leaking? Did you e-mail Dr. C? - Dixie

I hope things get better for you! Sorry to hear your problems.

Thanks guys...I have been in panic mode for 3 days...barely slept or ate for 2 days...yesterday I was out and about running like a chicken with my head cut off...finally I gave in a bought something to eat...veggie chips.
Stayed out until 6 and came home and emptied my pouch out. Got back a bowlful of bright red....blood?
Nearly passed out.
I went through everything that I had eaten all day...veggie chips and a banana...nope.
I checked the package and sure enough, there were beets in it! ...so much for the hemorage that I was sure that I had...
I haven't leaked since but have had a lot of pain in the region. Abdomen, hip, valve and pouch...the scars hurt too.
I am trying to take it easy and eat light. Will wait and see. No more milk products and nothing too gassy. I cut down on the carbs but still eat a bit of pasta. Hoping that it doesn't happen again.
I am wondering if it could have anything to do with these protien soups that I was eating that really thickened up the contents of the pouch and turned it to wall paper paste...maybe it was too thick for the valve?
Sharon

I am very new at this so not sure my experience will help. I had a protein type of shake here since I am not getting enough food in since surgery and someone at the hospital mentioned trying them. Huge mistake. It sent my bladder into a flare, I couldn't decide if I needed to drain my pouch or puke. I was constantly draining it, my pouch couldn't handle that type of drink. So who knows if it is the soup. I do way better with more solid foods like chicken, beef.

Interesting, I drink protein shakes between classes and have no problem with them at all. maybe its the brand? I bought whey powder and mix with water.