I really hate this.
Yesterday morning I woke up to a leak. My first feeling was of my valve 'hurting'. Then when I turned to get up it started to leak. It felt sort of like the valve had flipped back on itself. (like when you flip a fingernail back)...I ran to the bathroom and managed to intubate. No major mess, mostly gas but enough to upset me.
This is the third time since Jan. It seems to happen about every 4 months or so. This is what I can figure out so far.
All 3 times I have been on a diet/exercise program. I eat a lot of raw fruits and veggies that require chunks to be removed from the tube a dozen or more times during each intubation. So the valve seems to be getting irritated and possibly swollen? There may be small pieces that get trapped in the canal of the valve. I have a lot more gas when I eat raw foods. I intubate more often.
I have put on about 6lbs that seem to be centered over my pouch (a unilateral fat roll!) and put pressure on my abdomen when I sit or bend.
I can not think of anything else that can be linking the events. I do not believe that my valve is slipped. I may just be in denial. There are not external signs of prolapsus or hernia.
Most of the exercise I do is walking, stair climbing or light pilates, no major ab work.
Any ideas? Does this ever happen to you when eating large quantities of raw foods. Have you ever had occasional leaks that are not related to valve damage. It never happened to me before with my old pouch/valve.
I know that I am a really bad chewer and responsible for the chunks.
I am back on mostly protiens again with very little of anything else. So far no leak since yesterday.
Help.
Sharon

I just wanted to add that when my pouch is full it is really hard to put the tube in and I must force it a bit. It can hurt. I also seem to have a mobile valve that changes directions/trajectories occasionally (Dr C noticed it too but said that there was nothing that he could do about it).
Sharon

Hi Sharon, I am sorry you had a leakage problem. I had bad leakage about three times...just flowed out. I was scoped in May and they saw no problem and I haven't had a problem since. I don't eat a lot of raw foods, romaine lettuce, strawberries and blackberries only, lots of chicken, some dairy, but mostly protein and anything to satisfy my sweet tooth...gummy bears, snaps, vanilla waffers and frozen yogurt. Wednesday 8/25 will be one year since my kock pouch...I love it and wouldn't change anything. I'm glad you haven't leaked since yesterday and hope it stays that way. I do exercise also, walking, a little running, weights and very little abs. I think the exercise makes us healthier (or wishful thinking). Wishing you the best, Judith

Have the same when my pouch is full...use a lot of gel....

Thanks Judith,
I must admit that I am quietly freaking. 3rd time in 9 months. It just occured to me that if this a real leak (meaning my valve is hurt)that I am back in OR and I can not go back. I have no money, no job and no strength to start again...(yes, I am freaking)...
So, off the fruits and veggies, no bread or cake and tons of prayers that this is just a bip...and I am trying Beano before bed. Less gas may mean less pressure on the valve.
Sharon