LOL. I feel about
1%!! No sorry that's not true. Realistically I am probably operating at about
50%. I am still soooo tired and worn out. I walk around the block (about
half a mile) for my daily "workout" and that really takes it out of me. I also had a little issue today changing my wafer alone where I thought I was going to pass out!! Actually the exact same thing happened to me after my first surgery (my BP runs low, and I think standing up and craning your neck down to look at your own abdomen is kind of a weird position for anyone... or so I tell myself...).
Pain-wise I am doing a lot better. I take a regular strength Tylenol roughly every four hours and that manages everything decently. Sometimes I try to stretch it out, like if I want to sleep longer through the night, but I end up paying for it later. The worst pain is still in the exact same place, the lower left at the edge of my long incision, but it continues to improve.
I also have some weird feelings in the j-pouch and probably totally random nerve pain. Without going into too much detail, every so often I have a sudden shooting pain in a random spot in the vicinity of my... swimsuit area. I assume this is just from the nerves being manipulated and the surgeon poking around in my pelvis and should settle down and work itself out as the weeks go by. In the j-pouch I sometimes have a pressure feeling like I need to go. That might be true (I evacuate mucus from the pouch when I sit down to pee) but I don't really have any control over when it happens so it can be very frustrating. Again it seems to be happening less and less over time so hopefully it will stop altogether soon.
Finally, I am having some mixed feelings about
my loop ileostomy. As I mentioned, the WOCN says it is beautifully constructed, and I think it really is. That said, I can't seem to get good output out of it. It's VERY liquidy even though I am trying all of my tricks like eating thickeners, NO sugar, no caffeine, no plain water, and no beverages with my meals. I broke down and started taking 1/2 an Imodium per day but it hasnt made a huge difference. I miss my old ostomy
I think I am slightly dehydrated, and more importantly it's just annoying
to have liquid output. My belly is still too tender to wear anything snug and supportive, so I'm hobbling around the house holding my pouch in my hand most of the time!
In any case, overall things are OK and continuing to look up. My boyfriend is coming to visit this weekend (I'm recuperating at my parents' in my hometown) so I'm hoping I will feel energetic enough to show him around. My follow up with the surgeon is tomorrow and I have my looooong list of questions as usual, I'll post again if I have interesting answers!
dx'ed UC pancolitis 5/12
past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema
current meds: none!
step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown sometime