Thanks Sharon!
It helps to talk to other people with pouches. I thought about trying to find people in my area that have continent pouches. Few people on facebook talk to me a lot so it makes it seem normal. I can intubate now but sometimes the tube doesn't go in good and it feel like I am stabbing my bladder. Have to walk around then go again. I am thinking maybe gas creates bubbles it goes in and doesn't budge.
My gas issues are different than when I first started out. Before I didn't have movement it just had pockets that hurt, now the gas moves a lot by my valve, sort of thought it was all connected to not being able to intubate good and the gas there. Or my pouch is just bigger and the gas says "Hey that is how we get out lets stay here and wait for this tube thingy to go in." I usually have to rub my stoma area to move it away.
I guess this is why they thought I had pouchitis. I would empty more often because of the gas then literally 5 minutes later (not eating or drinking anything else) it was all back. So I thought something had to be wrong I had just irrigated for 15 minutes and bam all back. Bentyl helps when I use it for gas a lot but it makes me tired. On a good Bentyl day I have gone 15 hours without draining and didn't feel like I had to either. Felt like I didn't even have a pouch in there a few times when I as in NYC last so I thought maybe I was just getting better and this was my new "normal" life.
I have good days but not off antibiotics but lately my good days on antibiotcs are few and far between. I have been dying to get off them. I swore I was going to make the VSL work again and stick to eating a Paleo diet (meats, good fats, veggies, no grain, dairy, sugar, etc.) But it is a viscous cycle when depression kicks in, never want to eat healthy then.
Last night I cooked a week's worth of a pretty clean meal of coconut milk, chicken and sweet potatoes so see if the initial first dish causes not to much gas and from there.
Not sure if gastritis causes more gas. I have gastritis pretty bad right now, I can't feel it but the scope shows it all in my stomach. Wondering if long term use of antbiotics is causing it. Usually stress or surgery trauma is another thing that causes it.
As for the pain I get, the gas is one thing but the pain I have is like pins and needles are in my pouch and glass shards. Some days when I eat it feel like crushed glass is going through my small intestine, literally. I just want to die it gets so painful and depressing. My pouch get the pins and needle pain randomly. It was 100x worse in the beginning but now it comes in waves. I know if I get startled it is worse or any added stress. I need to learn to meditate. My one colorectal surgeon said I should smoke pot! Had to remind him it is not legal in this stupid state and he said "Who cares..." :-)
Only good thing about being on antibiotics is it keeps my IC flares away and those are horrible. On a bad IC day I can pee 20 times in an hour. Not little amounts either, gushing streams. I am considered an IC hopeless case and everyone wants to give me interstim but I don't want a device in me that will just cause more scar tissue. I am signed up to do stem cell treatment for it but not sure when.