Ok so I just reread this entire thread and I am devastated at how much physical and mental pain is out there among all of us.
My k pouch journey started at birth with my 1st colostomy on my 2nd birthday after 6 failed reconstructions. At 9 the whole surgery/failure cycle started again because the pred was killing me and I refused to take it anymore.
From 12-18 I had 2 failed gracillis muscle flap surgeries (worse surgeries ever)to reconstruct the destroyed sphincter. At 18 I met Dr Cohen who saved my life and gave me quality of life for the 1st time.
I've had pouchitis, a slipped pouch (3xs), valve slippage, hernias , occlusion, twists and the whole 9 yards...still do (2 broken arms last year and an accident 2yrs ago that left me limping and in permanent pain)...
But...and this is the big one... I have never given up the search for joy. I have never given up on happiness. I believe in small wonders, rainbows and tickling babies and puppies... I am no idiot, I put myself through university working 7 days/week for 7yrs...hell...and fought cancer simultaneously but I fought...and won.
I believe in happiness at all costs... I believe that we can find and keep love and that we are lovable (yes even with all of our issues) ...a walk in the rain or a rambling phone call with a friend can put my day right .I teach M.B.A. on a stage in front on 40-80 kids at a time... fighting pain, leakage at times, wearing a tube & appliance at others. But I laugh and give love...and make them laugh.
None of them knows my condition but all have my phone number in case or an emergency... I have a passion and commitment and they keep me going through the darkest days.
It doesn't matter how or in what form but we need a passion and a commitment outside of our selves to keep going ... it could be our kids or painting or dog walking but something to separate our minds from our bodies.
Work from home or your toilet seat...read to the blind or deliver meals...some of our own pain disappears when we help others heal.
When I shop there is always someone outside asking for money... I buy them food instead. I give flowers to strangers because on the worse day of my life (21st birthday when they told me I would never have kids after the HSG) a stranger handed me a rose and smiled .
So please do not give up. It's a long journey and full of bumps and dark valleys but it's worth the trip.
K pouches and BCIR exist in case of total j pouch failure. I know, I've had mine for 39yrs...moved to Paris and built a life.
So please do not give up the good fight.