So at IKEA I found this super cool glass vase that is now my tube hider! I was using the container I got from the Palms to irrigate with and there is nothing cute or sexy about that. This is hip and perhaps my husband won’t feel like our nice bathroom is a medical suite.
Other than that fun find I am “ok”. My pain is still very high. Feels all surgical. If I go off the pain killers the lowest dose I have got it down to it hurts to sneeze so I don’t think that is pouchitis. I intubate every 8-9 hours so three times a day. Pretty good. I feel since I intubate less my stoma is having a difficult time opening up I guess you can call it that for the last inch of the tube to go in or it feels blocked adhesions ? Did my pouch move? I can still drain it just takes longer. I am using lidocaine 2% viscous to ease pain I have.
I am hoping a miracle will happen and by March pain will get better. I am using
donut cushions to take pressure off my lower half if sitting for periods over 20 min. No drainage really. Maybe a nose buger woth of mucus if that. If I do have any light moisture it is at night after irrigating a lot to clean my pouch. So for now I just use regular bandaids that a nice lady who lost her pouch and has an appliance, donated to me off of jpouch.org
I have a new GI she is my age and deals with GI cancers. She will be scoping me in June for my annual digestive check for polyps and tumors. Little nervous. One of her patients has 2 feet or inches? Left of his small intestine is on TPN for life due to short gut syndrome and now has a tumor that showed up in the small intestine due to FAP. Hopefully I am good.