Hi I decided to update here. I know I have been missing for a while just dealing with life with a pouch. From the beginning it’s been nothing but issues. See my story line below.
fyi my pouch is 23 years old.
I just got out of my lost count surgery
I was first diagnosed with floppy pouch complex
and this is what they found 23 years later and I’m still in shock
when my surgeon whom is one of the best made the pouch they left a small hole on the top to attach the blood supply and that hole scars up and closes
mine never did and half my intestines fell into this hole and wrapped around the top of the pouch closing it off. last years twist was not related oh joy another issue. good grief I walked around like this all these years no wonder no one knew what was wrong
until this new ct scan nothing really showed. Although a twist somewhere else was noted. The drs treated the symptoms as they came
now the drs have to figure out if I even need entyvio ever had pouchitis etc etc
anyway since I was one of our first pioneers they are now seeing complications 10 to 15 years out starting there was no previous data prior
not to scare anyone just to educate
this time I went in for a resection and came out with this shocking news instead
this is very rare btw I know many people with long term success
I recently lost my white kitty in the photo with his brother he stayed by my side thru half of this mess. Im pretty devastated by his loss.